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since i was 5 is what i meant to put in the comment below
Ive been suffering with this condition since i was . i am now 21 and was only diagnosed when i as 16! its getting worse and i can no longer have sex with my partner :( i am on 10 pills a day to help the pain and have been for the past 5 years! these pills are starting to not work and if they stop all together i will not be able to work !! any advice would be great!! my name is zoe and you can email me please at firstname.lastname@example.org
psycresearcherHi all,I’m a Canadian researcher who works with women experiencing vulvodynia (including vulvar vestibulitis syndrome, generalized vulvodynia, and provoked vestibulodynia). Even though millions of women like you are suffering from this pain condition, countless women have great difficulty getting their pain condition recognized and diagnosed.Our research group wants to change that, and we need your help. We are currently recruiting participants for a paid online study on women’s health and chronic genital pain. The purpose of this study is to develop a questionnaire (the Vulvar Pain Assessment Questionnaire) that will help health care professionals assess symptoms of chronic vulvar pain. The study involves answering an extensive list of questions, similar to the ones you can answer on this website, so that we can fully investigate the nature of this pain. The questions cover topics such as sociodemographics, gynecological and pain history, pain characteristics, the impact of pain, sexuality, and mental health. The questions are spread over two parts, each taking ~30 minutes.All of the questions are completed online, and all women over the age of 18 are eligible to participate so long as they are fluent in English (reading and writing), have access to the Internet, and currently experience chronic genital pain. This study is completely confidential, and has been approved by our university ethics board.If you, or someone you know, would be interested in participating, you may find a Letter of Information on the study’s website, https://surveys.psyc.queensu.ca/Checkbox/VPAQ.aspxThanks so much, we appreciate your time!
I have been suffering with vulvodynia since i was 15, i am now 21 and my life is effectively ruined by this terrible illness i and loads of other women suffer with. During these 6 years i have literally tried everything, nothing is seeming to help me. it has destroyed me mentally and physically, i have tried taking my own life 3 times because of this pain, i cannot work, walk to much, sit for to long, sleep comfortably, anything that normal 21 year olds do, i cant. I have recently been taking amatriptalyne at 40mg and also on tablets called çymbalta, duloxatine at 30mg 1 a night. Although it has calmed down alot lately in the past week, my symptoms are still there, just not to the point where i am sitting on the toilet burning all night long in alot of distress. I cannot deal with this pain any longer, i want a life! a good one! which i definately dont have at the moment. I have read most of the comnments below and has lead me to feel more satisfied that there are loads more options. I have also read that steroid injections can help alot and read a lady quoting 'that the doctor told her she wont be feeling that pain again, sounds like a mirical to me. The area i come from is Milton Keynes and unfortunately there are no doctors that have any experience with this condition, there for i am ''unhelpable'' I am looking to try and get referred to manchester withington hospital GUM. or the london royal free hospital but i am finding it hard to find out if there are any doctors in that area that know of this condition. If any body has any suggestions on a doctor they have seen that knows about this illness that isnt to far away please email me on email@example.com I am desperate to get rid of this life ruining pain. Thankyou
Please forgive my typos in my earlier post, especially where I meant to say 'shot down.' Oops!!
Ladies, this is super ling but I'd like to share my story in the hopes that it may help someone else. You may have heard about an overgrowth of lactobacillus in the vagina, also called Cytolytic Vaginosis. Like me, you may have even suspected that you might have it, but were shit down by doctors saying that they've never heard of it or that it's bogus. You may have even read 'The V Book' which also rejects Cytolytic vaginosis as a diagnosis. Well I'm here to tell you with 100% certainly that it's real. For me, it all started after I developed a yeast infection within a few days of sleeping with a my husband (then boyfriend) for the first time. I went to the doc, who confirmed yeast and gave me a prescription. The yeast infection cleared up quickly but left me with a fear that from then on, I would get one every time I had sex. That's when I started taking probiotics religiously, even inserting them vaginally after sex. Things maintained pretty well for a long time, until my husband and I took a road trip out west in the summer. Anticipating a long drive in a hot car, I bought a super potent, multi strain probiotic a few days before the trip and took the maximum dosage every day. About halfway through the trip I started having vulvar burning and thought that I was getting a yeast infection (despite the probiotics) from all the sitting and summed heat. So if course I doubled up the probiotic dosage and that's when things went downhill. All summer, my husband was on the west coast for an internship and I was alone at home, taking a boatload of probiotics and all kinds if other anti-yeast supplements. The burning was ever-present and when my husband returned home, having sex was painful for the first time in my life. The next year was filled with gyno appointments, topical and oral antifungals, topical steroids, lab tests, oral antidepressants, and even a vulvar biopsy (which only revealed chronic inflammation). I was at a complete loss and in almost constant pain. My husband and I then moved to Houston for his job, and I was able to get an appointment with a vulvar specialist. Within minutes of me explaining my symptoms and long struggle, she knew what it was - cytolytic vaginosis. My treatment now consists of a topical estrogen/testosterone cream to build up the damaged vulvar tissue, and periodic baking soda douches. I'm not at 100% yet, and sex is still somewhat painful, but things a improving measurably and I couldn't be happier. Ladies, if this sounds like you, don't give up! Find a specialist and research cytolytic vaginosis. It's real!!
Slippery Elm paste, about a teaspoon in a little drop of warm water, apply internally if possible & on outside, wear a pad to keep in place all night. Reduced my agony very quickly. It heals damaged tissues, reduces inflammation & swelling. wonderful stuff. Excellent for stomach problems too, taken 3 times a day 20mins AFTER food.
I started applying Manuka Honey+10 as suggested last night I feel today better. I am seeing the hope. Can you tell me that is it supposed to burn for few minutes and then it is fine. I can't wait to get good results soon and get recovered from this terrible burning and pain. Thanks a million to give me hope again.
i have found a cure for vulva dynia. Every night apply half a teaspoon of Manuka Honey +10 to the vagina & surrounding area with a clean finger. wear a sanitary towel to bed. wash/shower off in the a.m. and all day long you will be fre of pain. This has also cured my Vaginal Atrophy & i no longer need to use Estrogen pessaries that contain irritants & which i believe caused the vulva dynia in the first place! I felt instant relief from the hellish burning pain & in 3 days it was so very much better. after a few weeks i am completely cured.
I have been suffering from Vulvodynia for about 2 years and I am desperate for a cure. I believe that it was caused due to low dosage birth control pills. I was on a low dosage birth control for about a year and then my doctor switched me to a higher dosage. It has not helped at all and I am very angry that Vulvodynia was not mentioned in the side effects of my birth control, because if I knew the kind of pain it would put me through I would never have taken it. Anybody else have this problem and find a solution? I'm thinking of going off the birth control soon, however I've read stories of women who went off it and their pain got worse. Any advice would be great, thanks:)
I have not been diagnosed but I have these symptomsburning vulva mostly after I pee sometimes just randomly, achy pains at the opening of vagina and sometimes my thighs, a feeling like ants are crawling around down there, stabbing pains, pinching, I feel irritated after sex/oral, feel like my muscles around my vaginal entrance are swollen sometimes. Does this sound like vulvodynia? I have an appointment with a specialist but not for another month.
I have been suffering Vulvadynia and burning in urine from last 3 years, tried so many treatments, nothing helped much. This sight, one woman helped me so much. I want to thank her with all my heart. As she wrote to take B6 three times a day. I have started taking since last two weeks it has changed my life as my urine problem is completely gone. Please let me know if I am supposed to take all the time or when I get burning.Million thanks to a woman who helped me. Please try this out, you will be the happiest woman
SummerluvI THINK I'M CURED! I've struggled with vulvar pain since my early 20's. I'm now in my early 30's. I thought it was due to hormonal birth control (it may have contributed), but otherwise, I had NO idea what was causing my pain. I've been feeling so much better down there...let me tell you and I hope it helps you too!!!I recently was talking to my naturopath and he asked me what laundry detergent I use, and I replied, Tide (free and gentle). He raised his eyebrow at me and continued to tell me that his family recently switched to this same detergent and his son broke out in hives. They thought it was something he had eaten that he had an allergic reaction to. When they realized that it might be the detergent, they switched back to what they had been using, and his son's hives went away!So I decided to give their detergent a try, as I have used Tide my whole life and figured this is a viable reason for my problems. As soon as I switched detergents, I IMMEDIATELY felt relief down there!!! No more of that irritation feeling! Considering that my panties are on all day, it makes sense that what is touching my skin down there all day was the problem!!! The detergent is called Seventh Generation, and you can buy it at Safeway. My naturopath told me to not use dryer sheets either, as it coats clothes with chemicals.It's been about a month and I have been washing all of my towels with Seventh Generation as well and will continue to wash all of my other clothes with this detergent. I don't use dryer sheets for any loads either.Other things that I've been doing that have been helping: We began using Skyn non-latex condoms which do not irritate at all (instead of latex condoms which we were using), I stopped using Always pantiliners or similar, I now use Softcup cups (no strings) instead of tampons, I don't wear underwear to sleep at night to let things breathe, I bought 100% cotton white Jockey bikini underwear (I do not use Spray N Wash on my panties either anymore!), and I try not to sit for prolonged periods of time. In the past I have punctured and used Vitamin E 400 IU gel caps to treat any tears on my vulva instead of Premarin or Clobetasol. This was helpful, but I haven't needed to in about a month!Hope this helps you! Please ask any questions, and I will get back to you.
Hi everyone how are you? I was wondering if any one knows of a specialist in N.J. for vulvodynia Thanks So much
Where do not I even know where to begin, I have seen numerous doctors and specialists and spent hours upon hours researching on the internet. I have spent just as many hours worrying, crying and wanting to scream the house down. I have been told I have vulvodynia and in turn I have tried various treatments, antidepressants, lotions and potions and have changed my whole life around my vagina. IM AT BREAKING POINT!! My pain is not continuous and varies from a lot of other people’s experiences I have read about hence why I am writing this comment. My pain is more of rawness, friction/chaffing, prickling, irritated sensation which is provoked by wearing pants especially jeans (they are a no go!!) and even sometimes leggings or the seams of my cotton underwear cause me this discomfort and itching. Some days just walking causes this friction, it seems more like a skin condition my but gyno seems to dismiss this? I have good days and bad days and I have no idea what triggers the bad days. I wanted to see a dermatologist but I was told by my gp that only gynos look at vulva skin etc. Sex on the most part is pain free however I have had times where the burning was unbearable but that seems to of settled (TOUCH WOOD!!) however I do get nasty tears all around my vulva which cause me extreme discomfort and make me not want to have sex or I have to wait 4 days for the skin to heal. With the irritation and tearing sex isn’t exactly on my mind anyway. Does anyone else relate to these symptoms I welcome any advice I am in need of some answers
I have so much that I want to say on here but I will save it for another post. This is important information that should stand alone.My doctor has done countless hours of research ever since I had been diagnosed with Volvudynia. In his 20 years of practice, it shocked him that he knew so little about something that affects up to 20% of women (not his fault, I'd be surprised if the average GYN even heard of it). I am his only patient that he has with this issue. He called me on the phone last week and asked me to come in saying that he found some interesting news. Low and behold, he hands me a study he found: 80% of women see 50% or greater improvement within 8 weeks of application of Gabapentin. I was floored to say the least. I have tried all the home remedies in the book. The fact that there is something that someone somewhere has some type of relief is huge news to me. Please, talked to your doctors about the risks. I am starting on it tomorrow.Background: I am 21. The first sign of pain I had was drying off with a towel at 8 years old. I have never been able to wear a tampon or have any form of intercourse. I have been using Replense and vaginal dilators.Here is the study (Scroll down to Topical Gabapentin) http://www.vulvalpainsociety.org/vps/index.php/research/published-research
tinklebellAmen sister! I cried all the way to the ER Sat, where some Dr. and his PA stuck a cow-size speculum in me and tested me for every STD know to man. I had a hip injection last Tues to ward off a third hip surgery or possible replacement and this hit me 6 hrs post injection. I eat egg-free, gluten-free, and diary-free for the most part. It does help, but I don't know where the hell this came from. I AM a nurse, and the nurses treated me like I was from outer space. Never will go to ER again. Tink
I had a three year remission after ten years struggling with itching and pain. Then I started having bladder issues/IC and that blew up the vulvodynia like a volcano. I've been in extreme pain and itching for the past three weeks now. Since I was "cured" before I no longer had any sort of medical team to treat me so I've had to start all over finding good help. I love seeing all the treatment options because it makes me feel like there is hope for getting out of this pain. There are tons of things I haven't tried yet. Something will work! It has to or my life is all but over. This is one of the toughest problems I've ever faced in my life. I am a strong, sturdy woman with good coping skills and I've been brought to my knees by this. I advise any one who hasn't done it to try a low carb diet for a week or so, you'll know right away if it helps. For me, as soon as I went low carb my itching went from a 7 to a 3. I took diflucan once or twice a week for about three years and this also helped keep the itching down. Then, as a last ditch effort to get rid of the last of the soreness and pain, I took Clindamycin for a week, even though there was no sign of any infection. And within three days all the pain was gone and it stayed gone for the next 3.5 years. Now I have to find the magic bullet or bullets that will put me back into remission.
This condition is so perplexing and infuriating it's nearly unbearable.The only thing in over a decade that has helped me (I think) is Wellbutrin and the effect wore off in about 4 months, so, so much for that.Valium helps for the bladder issues (and by helps I mean takes a flare down from a 10 to a 5).I'm on the low oxalate diet with calcium citrate (no vitamin D) and am trying hard to adhere to that. If it works I'll let you all know. I think it helps my IC issues. I also filter my bottled water with Brita. Not sure why but I can tolerate more water that way.I've tried almost everything else. TENS, PT, Gabapentin, topical valium, topical nortriptylene. It's been so long I can't even remember everything I've tried. A good idea is to keep a journal of what you eat, what you do, etc. and what you're trying. Meticulous note-keeping is important when looking back and trying to figure things out.I don't have issues with needing a dilator, etc. but I don't think it can hurt to keep the area stretched and also get blood flowing, via dilators. No harm in trying.It's crazy that I found this page. It's like this is a very small, exclusive club that allows you entrance into hell and it feels like only you are in it. No one can see the issue and Dr's are often lacking in understanding/caring or simply cannot help as much as they want to.
FREEPRESS, I HAVE THE SAME PROBLEM AS YOU, NERVE PAIN AND BARTHOLIN GLAND INFLAMMATION, PLEASE CONTACT ME ..firstname.lastname@example.orgI'm in london and doctors here are useless
AFTER 5 YEARS - I'M CURED! I'm going to try and keep this short but for the past 5 or so years I was in excruciating pain whenever I attempted sex (which was rare because it hurt so much). Everything I read about the lack of cures for Vulvodynia made me so freaked out and depressed but I had to write today because I am truly cured. I hope this will help some of you - I'm going to tell you the 2 main things I did. The first was stretch myself. I ordered a speculum online and started stretching opening my vagina after taking a really hot sitz bath. It hurt like crazy, but I did it every morning, slowly, painfully, diligently until I was able to have sex without wanting to kill myself. The other thing I did was get mighty real about my intimacy fears and my deep dark truths around opening myself up to a man. I highly recommend you pick up Louise Hay's "You Can Heal Your Life" which is all about how all our bodily pains are related to emotions and beliefs that, once we're aware of them and willing to let them go, we can heal. Stretching, hot baths and Louise ladies - I have sex all the time now and while it still stings a bit sometimes, it's NOTHING like it used to be. If I can heal myself, you can too!
Lena422PLEASE READ!! I was diagnosed with vulvodynia 4 months ago and have been going to physical therapy once a week for 60-minute sessions (almost 16 sessions now). My condition went two years before finally being diagnosed -- I thought I had UTIs, yeast infections, vaginal dryness, hormonal problems, allergic reactions. I tried EVERYTHING. While on occasion I did have REAL UTIs and REAL yeast infections, I did not always have these, but the doctors still treated me like I did. (I even had this one doctor who CAUTERIZED the tiny cuts I would get on my vulva). This only masked the real problem, though. I EVEN had two abscesses in that area that had to be cut and drained! It was horrible!To the poster below who mention that they believe it is a skin condition, hear me out! I thought it was thin, dry irritated skin -- caused by anything and everything -- tight underwear, tight clothing, too warm in the area, any sort of friction, etc. I would get tiny little tears that would even bleed and this would lead to yeast infections and pain when I urinated, etc. It was AWFUL. And everything caused it. Sex was unbearable, there was always so much friction and burning. Oh the burning! I UNDENIABLY thought it was a skin problem.However, since I began pelvic floor physical therapy, I have discovered that this skin pain is actually NERVE pain. I have gone through many stages and let me be honest -- I DOUBTED physical therapy. I really did, because I thought for sure I had an allergy/skin problem, that nothing could help. I swear, you will really think it is your skin that is the problem, but it may not be!Physical therapy has been hard to stick to, because I didn't see results immediately. The physical therapist has helped me immensely -- I do stretches every day. I also have pudendal nerve entrapment (you should look this up, a lot of people with vulvodynia may also have this problem).Anyhow! This past weekend I finally got to see my boyfriend (we are long distance) and I had the FIRST non-painful sex in two years! TWO YEARS! (I know some of you have suffered much longer and I cannot imagine). We had sex three times and normally I would be in the "recovery" phase from sex at this point, but I am happy as can be!! I cried tears of joy. My physical therapy WORKED! I URGE you to talk to your doctor about your pelvic floor muscles. We have a specialist where I live that deals with chronic pelvic floor pain and she pointed me in this direction. At my first session, the physical therapist confirmed that my muscles were incredibly tight (hypertonic) and that gave me hope that it could be fixed. I noticed how often I was tensing my muscles during the day -- instead of having a shoulder knot, I basically had a pelvic floor muscle knot!Sex should NOT be painful. I went these past two years thinking that's just how sex was -- that I just had to "deal" with it and that everyone felt some type of pain and I was just sensitive. That is NOT true at all!! I am a believer in physical therapy now -- the constant burning pain I had with any type of pressure/friction is gone. If you have any questions, feel free to send me an email at (kcmdnght8 at aol dot com) or message me on here! I'd be happy to answer any questions you have!! I really want us all to get better!! Best of luck ladies! <3
Vulvodynia was diagnosed by fourth doctor to see me, after recurrent useless treatment with antibiotics for supposed uti. After eight months I am much better and researching on web helped so much I am reporting what helped me. First, I do believe I had both highly irritated vulva skin and also some muscle soreness...probably many women have both. Here's what helped. Estrace, making sure I had orgasm every other day or so, stretching exercises to stretch tight quadriceps and pelvic muscles, lidocaine and baking soda baths. Also I stopped taking probiotics And eating active culture yogurt. I believe I had overgrowth of lactobacillus which made my urine very irritating to vulva. So much better...thank you ladies for being candid about what helped. Probably all women are slightly different but I believe this is curable if you are diligent and try things. I was so miserable for so long!!! Don't give up and take responsibility to figure out what helps and what doesn't.
After 10 yrs of wrong illness , just got told V. Aveeno , no panties, limit allergens all along the way, last flare was worst, finally given the V news an steroi creme, atarax , not completely clear but better. They want me to have ultra soun s now an possibly pelvic floor therapy. Am I just wasting my time an money again?
Has anyone had any benefits trying Lyrica (Pregabalin) Was recently prescribed it and worried about amount of side effects.
i'm the same person who wrote the comment below. my symptoms went away for a while so i really thought that the cure was the gluten free diet i was trying at the time. but unfortunately all of my symptoms have flared up again. my Dr suggested i do Physical Therapy for the Pelvic Floor. i suppose i'll try it and if it helps i'll comment again.to me it seems like it is the SKIN that is irritated, even though Drs say the skin looks normal. it feels as if my body is having a reaction to my own vaginal fluids - and since my symptoms wax and wane throughout each monthly cycle, i really wonder if this is hormone related.
I struggled with Vulvodynia for several months- the Burning was such a distraction it was all I could think about. I saw numerous Doctors and frequented forums - I tried everything and nothing seemed to help. Nowadays it has been over a year and I am feeling sooo much better. I noticed a major improvement after switching to a GLUTEN FREE DIET. Also, drinking a lot of water helps. I advise keeping a "V Food Journal" -Write down each and every thing you eat each day. Also write down your symptoms/Level of Pain each day. Look for connections between what you eat and how you feel. To all the ladies on Birth Control, I STRONGLY recommend going off of it!!! My Vulvoldynia began because of NUVARING. It really messed with my system.Other things that have helped: Wear loose cotton underwear, Loose pants or skirts (no jeans), organic cotton pant-liners for when I have discharge, No vag creams no soaps no irritants- just leaving the area alone! I want to mention that a major factor in my healing was changing my attitude towards sexuality. I grew up in a very conservative catholic environment - along the way I picked up the message that sex is "dirty". When I became a sexually expressive young woman in her 20's, I was enjoying sex yet deep down questioned if what I was doing was "wrong". In the midst of my Vulvodynia burning , i wondered if my conflicted attitude towards sex had to do with it, so I made a commitment to change my attitude towards sex, to see it as something beautiful and a totally natural part of life. I started repeating positive affirmations such as "I rejoice in my sexuality" and "I love being a woman" and "I love my body". I started mentally "sending love" to my vaginal area. I strongly recommend the book "You Can Heal Your Life" by Louise Hay. It was crucial to my healing.
While reading all of these post,I just want everyone to know that I feel their pain.I to went to doctors that assured me that it was totally in my mind.I have suffered since high school and and I am now 44 years old.Sex became a sadistic chore as I gritted my teeth in the bedroom to try to save my marriage and family! I was constantly told by doctors that I had yeast infections OR urinary tract infections,where I would be placed on another round of antibiotics.I have known no other life but now they say antibiotics only makes it worse,so go figure.I have done it all ladies in the name of finding a cure for something that they say has no cure! I even had a doctor sprinkle acid powder down there because that was suppose to give relief,it didn't.He told me how unbearable painful I would be after the treatment and was utterly blown away when I jumped off the table and got dressed as though nothing had happened.I looked at him and said "The burning that I am feeling after this treatment feels no different than the burning that I have had to learn to live with all my life"But something happened at the beginning of this year that has really changed my life.I went to my doctor telling him about how badly I was burning up inside of me and he did some swabs and said that I was having a small problem with yeast so I started taking the AZO yeast just as a precautionary measure.I was so raw inside from this,that he had to put me on primrin to build the tissue back up deep inside of me .I suffered terrible and the pain was about unbearable.Then I went to my primary doctor and he told me that I was burning during urination due to tiny,tiny crystals in my urine and told me to take B6 three times a day and that it would keep them from forming and low and behold I believe that I must feel the way NORMAL women feel on a daily basis.Since I started this regimen I feel ABSOLUTELY WONDERFUL!My husband has even commented on much better I seem to feel.It has really been like a miracle because I never ever believed that there would be relief in my lifetime.Its sad that I had to suffer a lifetime of hell and that just by accident that I found relief in a simple conversation with my primary doctor,not all the so called specialist that I have went to all these years.Apparently,these crystals that were in my urine were causing all these symptoms,the severe burning while urinating and then the rawness would set in,and then sex was just the beginning of the end.Start out by taking B6 vitamin by NATURES BEST and AZO yeast prevention.I hope someone writes saying that they have found relief! May God Bless you all!
Hi. I've had vulvodynia for 17 years and I'm now 42 years old. I wanted to tell you that I've gone through almost all these treaments and meds and then found a Dr. in NH Dr. Mark Conway in Merrimack NH, and he changed my life. I have vulvodynia due to prudendal nerve issues. I had surgery which frees entraped nerves and I'm currently getting 4 times a year, prudendal nerve blocks from Dr. Eduardo Quesada at the Elliot Hospital in Manchester NH. He is AMAZING!!! It gives me relief to live my life and jeans/pants and to do a lot of other things I couldn't do. I'm telling you it's worth seeing these dr's. Dr. Conway sent me to Dr. Quesada and they work well together. Dr. Conway is one of the only dr's around the country that does the surgery and Dr. Quesada does the nerve block. Do yourself a favor and MAKE the call. You won't be sorry.
I have my pudendal nerve and paracervical nerve blocks from Dr. Eduardo Quesada
Pudendal nerve and nerve blocks in the cervix as it is nerve damage. Dr. Eduardo Quesada.
I am 24 and have had vulvodynia since giving birth nearly 3 years ago. I also have nerve damage to the left groin area due to birth(started around 8 weeks as my baby was big un and also my 2nd) It took a change of doctors surgery as my old doctor was certain i had IBS, yet sent me to get a laparscopy 1st, then the tube up bum. My new doctor is the best one in my town. He sent me to gyne again were i sat for 3 hours waiting, in pain to be told its a yeast infection(i put aqueous cream on my bits and explained this) and its all in my head. I went back to my doc who when i explained, went into google and started typing Vulvodynia. My heart sank but he started me off on a low dose of amtripyline and i got sent to the pain clinic(which is a private hospital but cause im a NHS patient the NHS pays.) The guy there identified that the left sided lower pain was nerve damage due to a traumatic birth(funny as the 2nd was the best to me) and i should grow out of it in a few years. He gave me an injection(this was Feb 2012) and promised to give me one next time, come 18th Oct, im FINALLY getting that 2nd one, and due to the clinic being funny with me about who should treat the vulvodynia my gp sent him a nice letter telling me he HAS to give me pain relief(the jerks getting money from NHS to treat me and hes not doing). My doctor had by this time upped my to 100mg of amtriplyine which i felt didnt help as much as id liked so hes put me on gabapenatine 300mg. Since stopping i cant sleep due to pain, and this stuff dont knock me out and its painful below i wanna cry. I cant sit without pain, pee without burning, my leg goes numb from hip to my knee on left side. I have pain or burning or stabbing pain that starts from the clitoris and goes all the way round to the anus. Bowel movements feel like someones poking it with a fire iron! Sex is a rarity, due to the clitoral pain i get pain when aroused, its like someones grabbed hold of the area and is pulling it away from my body. Ive tried no underwear, numbing the area until my gp went crazy at me and said NO!! stop putting emla cream on there. Oat baths, ice, pretty much all i can! Im convinced my Pudenal nerve is to blame for part of the numbing in the left side of my vulva. Shame the pain clinic guy wont take me seriously, Ive told doc if he ignores your letter i want sent to another place because im gonna kill him if he sends me away again. I wish i could say somethings helped for me but it hasnt much. Sleepings my only relief and that's hard work now! I hope someone finds a cure that gets rid of this. Its a silent illness that debilitating yet everyone thinks your fine! Good luck to all these ladies, i hope you find something to get rid of or alleviate this pain!
I just wanted to share my story briefly because I was able to find an incredible treatment for my pain, and I hope this will help someone else. After months of gyno's having no clue what was wrong with me, I was finally sent to a physical therapist. My vulvodynia was being caused by shortened muscles stemming from a "traumatic vaginal event" (most likely a yeast infection.) My therapist was amazing. She had suffered from vulvodynia herself, so she understood what I was feeling. She performed " stretching" therapy on my vaginal canal and walls for about two months, once a week. She would insert fingers into my vagina until pain was triggered, and then slowly and gently stretch the area until the pain lessened or subsided all together. This was combined with deep breathing and relaxing of my posture (don't hold in your tummy!) And after 8-10 weeks I was able to discontinue my therapy sessions and enjoy pain-free sex again! I was hopeless and thought nothing would ever help. Don't discount therapy as a real medical alternative. I learned that all of the external remedies I was attempting were just further agitating my situation. I really can't emphasize this enough- I thought physical therapy was a ridiculous idea, and it ended up saving me! To this day I am symptom free about 98% of the time. I still take probiotics regularly to prevent any flareups, but if anything starts to bother me again I just remember to relax and stretch.
I have had vulvodynia since 1990. Like everyone I have read about, I have tried several different things to try and get rid of this problem. From what I am reading it appears that there may be many different strains. What works for one person may not work for another. I have used amitryptiline, herbs and I have even tried to use clay as a packing. It seems such a shame that the medical profession can't do more research on this, so all of these people can get there lives back, myself including. You can't have a relationship, so you miss out on having someone to love, which is very vital to every human being. I am going to try a couple of things I read here, and get back later as to my success.
Hi, I am not sure exactly what I have. I have seen several doctors and no one knows what is wrong. I finally saw a gyno who thinks I have vulvodynia and skin doctor does not think so. I think these two doctors may try to help me. I woke up swollen on the righ labia a couple of months ago and still have some swelling. Nothing seems to work. I have buring on the right side where I have angiokeratomas which I feel started this whole problem but the doctors do not agree. I have to take baths to cool off the buring area and cannot dress with underwear while I am home. I tried acupunture just two treatments but I felt more buring during the night. I am not surewhat to do for the swelling and buring. I have been using aquaphor but now that burns too. Maybe I should try a low oxalate diet too. I am not sure what that means. This is my third month of feeling horrible and in pain. Anyone have angiokeratomas on the labia?thank you.
TiredAllTheTimeShould also add that I have nerve pain, tingling and freezing cold, in my feet at the same time as an attack. Never had this before the IC. My massage therapist diagnosed me with Myofascial Pain Syndrome and Trigger Points. I've noticed that my left thigh front muscle cramps, then my feet go like pins and needles and then the bladder spasms begin. I have a microwave by my bed and immediately heat up three cushions for my feet, two for my back and two for my bladder, oh joy. :/My massage therapist would manipulate that thigh muscle, which feels like concrete, and I'd feel a bladder spasm start up. Strangest thing. All three all located, I lie in bed and feel the thigh muscle contract, my feet tingle then my bladder spasm. If I inject 1ml magnesium sulfate into that particular thigh muscle, the cramp disappears: my dr has me on 4 of those injections per day - me = pin cushion. But, I think the magnesium is working, I haven't been well enough to take it for the past two weeks (and I had begun to see the bladder spasms and IC symptoms fade) only to have them all return in the past two days. Need to get some energy to fill the syringes. As someone below says, the emotional toll is exhausting, especially with all of the chronic illnesses I have. Want to say a huge thank you to the poster wayyy down the page who has recommended "Heal Pelvic Pain" by Amy Stein, I've just ordered it and can't wait for it to be delivered. Your comments and working out your own stretch are fantastic, thank you so much. Any more suggestions would be gratefully received. :)
TiredAllTheTimeMy Dr, a private one, not my indifferent NHS Dr, thinks my IC is caused by an imbalance of the bad bacteria in the gut. So, she suggested I take Kefir, a powder, in Soya Milk to improve the good bacteria in my tummy. One night, after being demented all day long by the itching, scalding, burning I added several tsps of Kefir to my orignal tampon mix (4 drops Tea Tree Oil, organic natural yogurt, calendula and chickweed (you make these herbs like a tea then add a couple of tsps of each into the yoghurt and stir with a spoon). Wow, what an immediate improvement, after three days of using this new recipe on four tampons each day the symptoms disappeared: that lasted for one full week. Bliss. When the symptoms reappeared I just made up the recipe again and lather rinse repeat! I had become so used to having to use the tampon mix every few hours, this was such a breakthrough for me. Best of all, Kefir is so inexpensive and lasts forever in a jug in the fridge. I have other health problems, mainly severe fatigue and can't always stand up to prepare the tampon mix so...I've also found nappy cream to be amazingly soothing as I have have bladder spasms caused by repeated UTI's (stopped the UTI's with Waterfall D-Mannose 3tsps per day - pricey but absolutely worth it - 8 months without a UTI - and it stops each infection within a couple of hours). I don't know if I'm allowed to give the name of the nappy cream here, maybe someone could let me know but I've discovered that the bacteria gets used to you using just the one and renders it ineffective so I go between two different brands. Again, pricey but anything that stops the itching is worth its weight in gold. Coconut oil is also VERY soothing but not sure how effective it would be full time. I bought an E-book by someone whose name I will not give and can only say I considered it a complete con. I use Valium/Diazepam for the Bladder Spasms and it's the only thing that has ever given me total relief. I don't like taking pharmaceuticals but in this case I have no choice, I spent two years bedbound with the spasms before I discovered the private Dr (I'm in the UK) and she immediately put me on Valium - OMG - the relief. I'm going to post this in other forums as well, hope no one thinks I'm spamming but other conditions that I haven't heard of came up when I did the survey and I'd really like to share my experiences and get feedback from everyone/anyone/someone, even just a little support because I'm stuck in bed today in a 26C heat and have to have heated cushions on my feet and bladder = more soaked pj's and sheets. Thank you to whomever it was that started up this website, the information I've received already has been so informative and will help me a great deal. :) If you want to ask me any questions, especially about the recipe I make up to ease the symptoms, feel very welcome, I'll happily post all the info about it. I'm really glad to have found this community. :)
I was diagnosed with Interstitial cystitis or vulvodynia. I had burning and frequency with urination, clothing was irritating, and is was painful to sit. It came on after I had PT for an SI joint dysfunction. The therapist helped to correct pelvic misalignment. I thought the PT had to be related. I tried a bladder instillation, and it was very painful. I did not feel the research backed up bladder instillations and kept looking for other explanations. I came across pelvic floor pain, pudendal neuralgia, and posterior femoral cutaneous as possible explanation. I found a therapist who does pelvic floor pain work. She first taught me how to lengthen my pelvic floor and relax the floor or drop the floor at the end of urination. She told me my pelvic floor was tight and kegals and abdominal work would make it tighter. I stopped the ab work and legals and worked on lengthening the pelvic floor. I felt much better after several days of relaxing the floor. She worked on the external tissue. She explained that the tissues in that area had been irritated, and I had referral pain from the tight pelvic floor. My tissues were hypersensitive, which is why clothing could irritate the area. The connective tissue restriction set up a cycle of muscle hypertonicity in response to the pain which causes trophic changes and can restrict the bladder. She started connective tissue therapy to the referral areas of the abdomen, buttocks, and upper thighs. The first time she rolled the tissue, I was in tears it was so painful because my tissues were restricted. It no longer hurts because the tissue is mobile. She also worked on an internal area of scar tissue from a mid-forceps delivery. I did not have pain after intercourse, but she explained that women who have had a bladder infection or yeast infection can continue to have trigger points even after the infection is cured. The pain is not from a bacteria, but from a woman can have a trigger point which can be helped with therapy. One of my trigger points is the ischial tuberosity, or the boney part on which I sit. I think many people can get help if they seek a specialist in pelvic floor pain therapy. Jerome Weiss and Stephanie Prendergast have written about pudendal neuralgia and pelvic floor pain. My therapist, Rhonda Kotarinos is also known nationally for her research, and she thinks my symptoms are from a closely related sensory nerve, the posterior femoral cutaneous nerve. A pelvic floor pain specialist might help you by doing an assessment. You may have a trigger point that seems to be unrelated to your pain. I had no idea my tissues were immobile and not functioning until Rhonda started to work on the tissues.
Ladies,I have not yet been diagnosed. When I first went to a obgyn, my boyfriend was overseas and my doctor told me he couldn't do anything until he was back. Now, I am not regularly sexually active, but the few times I tried to have intercourse it was so painful it sent me into tears and I had to quit, at this time my labia became so swollen it extended a good inch from the vaginal wall. What type of doctor do i need to see to get help? I've heard of some people going to a psychologist, and others going to specialists. Any thoughts?Thank you.
i was diagnosed with vulvodynia and vulvar vestibulitis about 10 years ago at age 23. I started having terrible pain shortly after having intercourse for the first time. Like most of you, after numerous tests and doctors I finally got diagnosed. What "CURED" me was using dilators. I couldn't understand how on earth this would work. After about 3 or 4 months and using 4 levels of dilators i felt SIGNIFICANTLY BETTER!! the constant burning/pricking/itching was pretty much gone. Intercourse still hurt me though. We found other ways to pleasure ourselves (penetration is so overrated ;) Anyhow, a couple years went by and sex was more tolerable. and by the 8th year pain free i could have great penetration sex. A few weeks ago I got a burning feeling when i went pee and a UTI was the cause (first in 9 years!) "IT" was back :((( Having no dilators on me I quickly tried to stop the pain by placing my thumb into my vagina and pressing down towards my anus ( i could feel the relief of my muscles when i did this) and when i would stretch down more to the right side of inside the vagina it REALLY would feel like i was massaging a pulled muscle...it was a dull pain that hurt yet felt good while pressing down/massaging it. And because i was desperate and really scared (as i could not get a specialist appointment asap and get the dilators) I found something the size of a good size dilator. I used a mousse bottle/tin. I emptied the mousse and washed it with hot soapy water. Weird...but desperate! Anyhow...i have been inserting it at night and fall asleep with it (the muscles can really relax) AND sorry if this is TMI but i "try" to have an orgasm with it in me (easier said than done with a mousse bottle up there)...so my muscles contract and relax around it. With all the stretching and dilation i have found great relief in just a few days....i am going to continue to do this everyday until i have that comfort feeling again.I do not know if V/VV may be from just injured pelvic muscles...but i highly recommend you try this (get the good dilators obviously) Don't expect fast results...it took months the first time as I suffered chronically for 2 years. Every day all day :( but i caught this flare up early and i HOPE i can get a hold of it. so far it looks promising. Also, I know medication is a quick relief, but try to avoid it if at all possible...please try these stretches. I am also trying pelvic stretches on the bed with pillows under me like one woman suggested.I really wish all the best for all of you warriors. If your vagina was happy at one time it can be happy again.
so, the main oils I use to be a normal functioning women again. Lavender, Rosemary, tea tree oil, and Myrrh in a coconut oil base. drops of all xcept Myrrh, only one drop of M
apple cidar vinigar on a washcloth and held over the area or dabbed on the area before you go off to work or whatever, also helps with painful burning and itching like a miracle
Diet::: In my case, eliminating sugar, of going off dairy, or gluten. Did nothing for me. What did help me, was eating more green vegetables, going off junk and fast food, and just having a wholesome well balanced and nourishing diet helped me tremendously. But it never fully went away, even with diet changes. So, diet doesnt really matter too too much. I did get a yogurt maker, and I make my own yogurt now, and that helps
and the probiotic acidophilus capsules should be taken everyday. FOR LIFE! Since Vulvodynia is a lifetime condition one has to learn to live with.
also coconut oil is a great lube for sex
when I hear about women going as far as to have surgery, or "numbing" the area with vagisil or lydocaine, and taking damaging prescription pills and pain killers, Im shocked and horrified. What kind of a life is that, and its not curing anything!!!! I cant BELIEVE how backward doctors are when it comes to womens issues, which are so important, and relevant. Literally, its like the stone age. They think your nuts, when you try homeopathic remedies. Wise women in the old days knew all about these issues. The problem with vulvodynia, (atleast in my case) cuz I didnt know what the heck was going on either, and was desperate for a cure, is infection. There is some sort of virus and or bacteria, maybe yeast (no, I dont have an STD, been tested numerous times) that is causing these uncomfortable and chronic symptoms. Also, when I go off the oils for more than a week, the symptoms gradually begin to return. Also, changing your diet is extremely helpful too. Wheatgrass shots have changed my life!
so, coconut oil as a base, fill the ice cube trays. Then add whatever droplets of essential oils. Ive heard tyme, lemongrass, ylang ylang oil and cinnamon oil and geranium oils are helpful too.
Ok guys. Ive had this same consition since I became sexually active at 22 and I know for a FACT. Vulvodynia, (atleast mine) is some sort of chronic, infection inside the vagina. Ive come to the conclusion that some women are not just prone to yeast and bladder infections. They LACK whatever chemical flora that most other people have to fend off infection. Like a birth defect. Ive spent years of my life, missing out on sex, feeling constantly irritable and uncomfortable, and feeling totally alone. The sitting on glass, constant burning, (being especially bad before or after period), having bad days to the point you cant function, and even miss work. Yea, I know about it. Lived with it for over a decade. And sex??? Firget about it! My cure as follows. Daily maintainence of inserting coconut oil suppositories with essential oils of lavender, tea tree, rosemary and myrrh oil, moring and evening, or just evening, (as long as your sexually active). when your not sexually active, you have to do it once every couple of days to a couple of times a week. Get a sport bottle elongated Ice cube tray. Melt down your coconut oil. Put 3 drops each of the above in every single ice cube. Except for the myrrh, you only need one drop, its very strong. I actually enjoy sex now, its agony free. I am not aware of constant burning, itching, dryness down there 24/7. I feel "normal" down there now. Im a normal person, like eveyone else now. Also, you must take 1 to 2 capsules high quality probiotic, like ultimate flora or something.
Hi there, I really want to get in touch with the person who posted about "A SPECIFIC pelvic floor muscle STRETCH turned out to be a simple cure for my vulvodynia!" I tried your exercise last night and today - but am not 100% sure I am doing it right? It makes my back hurt, and also not sure how long to do it for, after about 10 mins I feel like I have to stop, is that long enough? And how many times per day did you do to feel relief? I have Coeliac Disease and possibly IBS too - so have ordered Amy Stein's book, as it looks like it might be helpful for me. It would be SO amazing to cure this vulvodynia within a week though like you did. I'd love to hear from you and see how you are doing now? Not sure how long ago you posted the message below. I've had vulvodynia for about 12 years. It comes and goes, I get good days and very bad days, usually 50/50 each month, can't quite notice a pattern to it yet though. Although it usually flares up after my period, so am wondering about the hormone treatment too. Or the low oxilate diet, as being a coeliac I have a leaky gut, so that theory makes sense too, although the idea of restricting my diet anymore is scary, I am already off gluten and dairy! Am v interested in the Physical Therapy idea though, that would be the best option, no drugs or diet! My dermatologist put me on Amatryptaline but I couldn't cope with the side effects, even cutting a 10mg tab in half sent me off into zombie land for a good 48 hours, couldn't function at all. I hear it gets better in a few weeks, but I am not sure it's worth it, is it really a cure, or just masking the symptoms?I really want to get to the bottom of this thing once and for all and get better!Seems there are so many different causes, looks like we just have to find the right cause for us. Good luck everyone!Anne
I have never been able to figure out what makes it better or worse. The only thing that keeps me from ending it all is Emla cream - Lidocaine 2.5% and Prilocaine 2.5% - put on your vagina and cover with plastic wrap - it needs to absorb into your tissue so the plastic wrap is important. It stings at first, but, nothing compared to the pain I'm used to! In about 15 minutes it will be completely numb - sometimes almost 3 hours of relief. Less relief with more activity......but I will take anything I can get. Hope this works for my sisters in pain......
Has anyone considered pudendal nerve entrapment as a cause for vulvodynia? I have had vulvodynia since I was 12 (I am now 34) - not diagnosed until 18 because they didn't know what it was. I have tried numerous treatments over the years but also have given up for several years at a time when I couldn't face the disappointment of treatments not working. Just recently I came across a research article stating that vulvodynia is not a condition in itself but merely a symptom and the article suggested that vulvodynia is a symptom of pudendal nerve entrapment. Well, I have never been able to feel sex (only in the clitoris, the vagina is numb to any sensation) and no doctor could ever tell me why. They did an MRI of my spine as they suspected spine damage was stopping the feeling but my spine was okay. Now I read in this article that pudendal nerve entrapment can stop sexual sensation. That coupled with my vulvodynia leads me to believe PNE might be the cause. Some of the treatments for PNE are different to the ones for vulvodynia so it might be worth investigating if this is the case for you. I know I am going to.On another note, I found that diclofenac sodium (a strong anti-inflammatory) did temporarily stop the vulval pain, as did dermovate.
Alexandra, yes yes I'm here! I have chronic burning 24/7 have had it since i was 7. I'm now 28 and feel as isolated as you. People don't understand what it's like to sit on glass all day and all night. My constant burning never lets up i leave in constant agony. I too have had multiple surgeries tried every pain pill,nerve pill, antidepressant and cream that i can think of. I have no social circle people just think I'm kidding when i say im having a really bad day i cant hang out today. My husbands been there for me but I'm at rock bottom as well. I'm just like you i get up for 30 minutes and cant wait to lay back down. I take multiple rinse baths a day. We bought a baday for $500.00 gave little relief. I was diagnosed at 18 with IC but we've since ruled that out and believe it to be my bartholins gland and skenes gland. Im yet to find a Dr that can cure me.
I had steroid injections a few weeks ago and whilst my condition was awful and 24 hours a day prior to this, I could still occasionally wear jeans and go to the cinema and things. Now I cannot wear anything but loose thin joggers with no underwear, I can't sit up, I can't go out, I have no job because I can't go out for longer than about half an hour before I need to lie down and I feel as if I need 2+ showers a day to cool the area down. I have tried so many treatments but would not recommend any except lidocaine, it's not great though. Infact it barely helps, but the slight numbness of the rest of the area is a very slight relief. I am at rock bottom with this condition I am only 19 and I have had it for four years since I was around 15 and a half. Is anyone else out there my age with this condition?
Message to the site administrators:Dear Alexandra,Firstly, a brilliant idea to create this website - many thanks.I am writing with regard to vulvodynia.This is merely a description (meaning of course 'pain in the vulva'), and not a specific condition. There are likely to be a number of causes (diet sensitivity, nerve damage/injury, muscular/skeletal, etc.). Lumping everything together as vulvodynia is counterproductive; particular causes and symptoms need to be related to the treatments effective for that strand of vulvodynia. For instance, the low oxalate diet might be effective for those with dietary causes but useless for those with muscular pain. Statistics which reflected these divisions would be enormously helpful: sufferers would immediately be enabled to spot similar syndromes and the most effective treatments for their own condition. I would suggest treatment stats changes such as '100 people with urinary symptoms experienced a major improvement after trying Rinse with water after urination.'Also, there is confusion as regards treatments, and as regards causes versus triggers. Many measures are palliative measures and not treatment. For instance, wearing looser clothing is an alleviation, not a treatment. Stats need to be produced which distinguish between self-help and actual medical treatment. It is also vital to distinguish between cause and trigger. It is vital to understand the causes of vulvodynia in order to understand and treat this awful pain. What triggers the pain from day to day is less crucial than finding out what started it up in the first place.Finally, there is no mention of pudendal nerve decompression under Surgery. How can one add a new treatment? (A Help section on how to use this site would be useful).Many thanks.
Re: Menstrual period — Get Gladrags that will help you.
Re: Chronic yeast infections — yes, yeast infection cause the problem but I don't hardly get them only twice a year and now I just found out that I have Vulvodynia since April and I get yeast infection 3 times now so I'm fighting back yeast free. and it not that easy also I have IC and Endometoris an Clitorodynia.
Re: Amitriptyline — Nortriptyline has fewer side effects than amitriptyline and is just as effective. Your dose should increase step-wise (e.g., 10 mg per week) to minimize side effects of both drugs.
Re: Anti-depressant medication — Nortriptyline has fewer side effects than amitriptyline and is usually equally effective. I tried both nortriptyline and Cymbalta (at different times) and found them both very helpful. I had minimal side effects with both. I was on both for about 2 weeks when I began to feel relief. I weaned off both without relapse of pain. I was on 60 mg of Cymbalta and 50 mg of nortriptyline.
Re: Cymbalta — Cymbalta worked very well for me, equally as well as nortriptyline. I was okay in terms of side effects (can't remember having any really), but, I did have a weird side effect when tapering off the medication -- I had a funny buzzing sensation in my head, especially when I turned my head to the side! I read about it on the internet, and I'm not the only one who had it. It's harmless, and it went away in a couple of weeks, so I wasn't worried about it and would take the medication again, if I needed to.
Re: Burning — When I take a hot shower that made me burning and I cant wiping either , also I have IC ..that how it starting when I was wiping too hard .. Upper my Vulvar near my clitoris.. SO I can't take hot shower ever again:( I have to take cooler shower that is really bothersome.
Re: Contact (Ex: Sex, wiping) — oh yeah Wiping does hurts me that how it starting..!!!!
Re: Poor posture — As well as Interstitial Cystitis, Fibromyalgia, Pelvic Floor Dysfunction, etc.The Cure for all: scheduled sleep no more then 8- 9 hours, regular massages concentrating on trigger points and myofacial areas of stress, and working in posture physical therapy. Doing the posture exercises 3x a day at the beginning is best. If you are sitting at an office desk all day long get up an stretch every 30 minutes, get a nice posture chair, and don't strain your low back or hunch over. Fixing posture and correcting the physical pain doesn't happen over night. It takes time to turn pain sensors off.Anyone want to contact me feel email@example.com
Re: Poor posture — Yes, Yes, Yes!!!
Re: Clitoral pain — I was born in Egypt and was circumcised (removal of clitoris) when I was seven. Even though I now have no clitoris, I get a pain at the scar, where it used to be. I've consulted doctors to see whether there could be a nerve there that is exposed but they say there's nothing that can be done.
Re: Pelvic floor exercise — are there any pictures of the stretching exercise. do you lie on your back with pillows under you or on your tummy with pillows under your tummy with legs dangling. really nead the help.
Re: Burning around anal opening — I have the same problem but the antidepressants did not work. Need help !
Re: Pelvic floor exercise — Thank you anonymous for the stretching. Gonna try it & report back. First off you've given me hope - one giant step right there.
Re: Give birth — I ended up with a 3rd degree tear (one layer of muscle tissue short of a 4th degree tear) and couldn't do much of anything for a good month. The midwife said that my perineal tissues were so engorged that it couldn't help but tear. They used hot compresses and did massage of the tissues but it was unavoidable. Now I am petrified because they want me to be c-sectioned for any further pregnancies. Ugh. I would say that my introitus is not as sore as it was but there is still discomfort with sex attempts. I really want this to be over.
Re: Irritable Bowel Syndrome — IBS and vulvodyina definatley go togehter, vulvodynia eased radically when moving around. So I am sure that the IBS and VV are eased by movement.
Re: Drinking large amounts of water — Drinking large amounts of water has drastically improved my vulvar pain. I still have alot of pain in the morning (when I haven't had the chance to drink water through the night) and often times later at night (when I've been doing alot of work and have forgotten to drink alot).
Re: Hypersensitivity of vulva — I have a constant, almost cold, feeling of sensitivity around my vulva. Almost like arousal but painful at the same time...
Re: Geographic tongue — I have geographic tongue, didn't realize that they were related but interesting that so many people with this issue have the problem...
Re: Desipramine (Norpramin) — I started desipramine 2 weeks ago. I started with 25mg/day for a week then went up to 50mg and got huge relief: NO pain for 6 days, that's the longest i've been pain free for the past year and a half. Then the symptoms came back and i went up to 75mg. I hope i don't have to go up again (my max. is 100mg), i fear side effects, i already have a bit of constipation and lightheadedness. Do you know if side effects go away after a while? Please keep me posted on how you guys are doing on desipramine, i reaaly hope it works for me. And thanks for sharing, this illness makes you feel so lonely, it's good to know other people go through the same thing. Thanks a lot. Coline
Re: Itchy/irritated mons pubis — I went to a doctor who did this skin rolling exercise in this area (basically pinching some of the skin), and it killed. He said that was far from normal.
Re: Steroid cream — Made it worse!
Re: Antibiotics — I am experiencing severe burning to my labia majora and sometimes reaches my rectal area. I have been dealing with this for about 6 weeks now. I beleive my symptoms began after taking a round of Bactrim for a suspected UTI. I cannot get a true diagnosis. I have seen countless doctors and have had extensive tests. No relief yet. Very frustrated.
Re: Itchy/irritated mons pubis — At least 5 yrs of itching on top/mons, mainly at night. I use soaps like Dove or generic brands, or a cheap oatmeal type, but have not tried special cleansers. Vagisil regular strength cream works immediately, but I have to use a lot over area (0nly once a day) itch comes back days later. Doc said might be vaginitis, didn't take topical steroids b/c of fears of side effects. Clotrimazole for jock itch barely worked, but I was hairier when I tried using it. No STDs found. Instead of shaving pubes (which can make it worse), I trim hair low with shears so that area will be drier and cream can be applied easier. Help me feel peace!
Re: Low oxalate diet — I was diagnosed with vulvar vestibulitis nearly 15 years ago after many years of searching for a diagnosis. I was fortunate enough to find a healthcare practitioner who understood my problem and that I was nearly suicidal with the pain. One of my treatments was to go on a low oxalate diet, which I followed meticulously. After 18 month, I was nearly relieved of my pain. Today, I can lead a nearly pain free life, ONLY if I stay on the diet. I had a urine test that indicated that indeed I have high blood levels of oxalates when I began the diet. I also take calcium citrate and found that that medication, Cymbalta, helped trememdously with my pain.
Re: Clitoral pain — THis pain for me started in about 1990.I had a history of chronic vaginal infections. At first I thought my pants were just to tight. I had been diagnosed with endometriosis at that time, trying to find a reason. Even after treatment for the Endo, it didn't help.The pain is excruciating. I became very depressed and went to pain clinics, and nothing helped. I stopped wearing pants--but by that time the pain was so constant, it was unbelievable. Of course was told by most that this was a "psychological problem" (sexual abuse, etc) Well, nearly 20 years later, I have learned to live with this pain, survived the extreme depression period with the help of a Dr John Gibbons, in Hartford, Ct. I didn't feel less pain, but at least he believed me and tried different things. I am comfortable some of the time--by wearing only loosely fitting stretch pants-I have tried many times to wear jeans--stretchy type leggins and still pain. I decided to search the internet tonight because I am so aggrevated--I thought this latest pair would be OK, but no-they are off, and after wearing them for about 30 minutes I'm dying--It is so good to know I'm not crazy and am not the only person living with this horror.I would love to find something that would help
Re: Amitriptyline — I just started using Amitriptyline in a 10 mg compound form one week ago tomorrow. I am currently applying it directly to the vulva area but was wondering if anyone has tried the pubic bone instead? I have I.C. also. My 6th night on it, I experienced burning and a pretty restless night and have noticed that the anxiety the next morning can be pretty intense. I have HUGE side effects when trying to take any anxiety/depression medicine orally so that is why I wanted to try the compound version. Hoping this goes away w/in next week.
Re: Low oxalate diet — I have been on the diet for over 12 years and have been symptom free. I can tell within an hour if I get a hold of chocalate and I burn for a week. So it worked for me and still does
Re: Amitriptyline — I was diagnosed will vulvodynia a year and 6 months ago. I started taking amitriptyline last September, initially I had to take 25mg every day to get my body used to it. I now take 150mg a day! (25mg increases every 3 months). At first the side effects were awful…I felt like I couldn’t stay awake but when I slept I had nightmares. In addition, I could barely string a sentence together, had short term memory loss and severe constipation. Now I only feel tired and ‘out of it’ when the dosage I am taking is increased. However, I am still constipated and have to take medication to keep me regular, also, I still tend not to remember much after taking my tablets. Don’t get me wrong amitryptyline has helped me a little, however, I feel that once my body starts to get used to a certain amount, all of my vulvodynia symptoms come back ten fold. I was increased to 150mg three days ago and I am experiencing the worst pain I have ever had, deep up inside my vagina, at times I cant sit down! Oh I almost forgot, I have gained a lot of weight…almost 2 stone! I don’t want to put anyone off trying amitryptyline…..just thought I would share my experiences. I would like to know how some of you ended up with vulodynia….as far as I’m concerned one day I was absolutely fine, I went to bed and when I woke the next morning I had vulvodynia. To this day I have got absolutely no idea what caused it and I am finding it very difficult to live with.
Re: Short menstrual cycles — Starting experiencing this about 5 months after going off the pill and 8 months after the onset of vulvar discomfort. No doctor seems to think the vulvar pain and abnormally short periods could be connected by a common hormonal component. Why they aren't even entertaining the possibility, I am not sure.
Re: Vestibulectomy — My experience was positive. I had the surgery four years ago, and although I am nowhere close to being "100%", the surgery did what it was supposed to. Before the surgery, sex was physically impossible, and after it was still painful, but possible.
no.help.in.atlantaRe: Pudendal nerve block — Side effects were excruciating muscle spasms.
no.help.in.atlantaRe: Pudendal nerve block — Have had four of these and they worked about 50% of the time.
Re: Vestibulectomy — 1 year on from vestibulectomy and whilst not 100% I'd say 85% recovered hubby & I trying for baby after 10 years no sex and no improvement with any other treatment. Minor scarring penetration possible but still a little difficult and have to take it slow with lots of lube muscles still tight.
Re: B vitamins — I was 75% cured in 3 days of taking a B complex with zinc. Just a few months to 100% recovery. I had other related symptoms by the end that helpped identify the condition.
Re: Clitoral pain — i am having mutiple orgasms while sleeping no penetration,although at the time this is pleasurable after about an hour iam in chronic pain for 2=3days.My dctr has prescribed Morphine
Re: Pain along labia minora — Does anyone else have this as their MAJOR symptom?
MiraRe: Feeling of acid on vulva — It feels like acid on vulva, cos there is acid on it sometimes. The natural discharge produced by vagina for self cleansing is acid based, so when the substance reaches the pain prone surface - it stings. I usually rinse when I feel acid, or wear a small tampon, and avoid legs touching together to minimize the pain.
Re: Gabapentin (Neurontin) — i have been using gabapentin for months and have now reached a dose of 1200mg a day, it doesn't help with my back pain but it has made me gain weight rapidly 2 nearly 2 stone in 6 months, I would rather out up with the pain than gain 2 dress sizes, this medication is useless, am not going to take it anymore.
janetsparrowRe: Trimovate cream — the condition hasnt cleared . my husband is alcoholic and picks up old half smoked dirty fags off the pavement to smoke.he has a bad infecrtion round his mouth now and its contageous.
Re: Desipramine (Norpramin) — I just started taking this medicine a few days ago and I hope sooo bad it will work for me. I am suffering with pudendal nerve pain..vulvodynia. I also am taking 450 mg of lyrica. I hate feeling so alone with this horrible condition..not one person I have ever met has even heard of it. All things are possible with God. Be2she@bellsouth.net..if anyone wants to talk
Re: Amitriptyline — Also- I luckily haven't noticed any side effects yet. Part of this may be that I am slowly working up from 10 mgs to 50mgs. I am guessing that side effects would be more common if you just straight up started taking like 50 mgs a night. So if you are thinking of starting this drug, maybe as the doc if you can work up slowly.
Re: Anti-depressant medication — For those who have have success with tricyclics- how long did you have to be on them before you felt relief? At what dose? Were you able to wean off of them without relapse of pain?
Re: Lidocaine — Has anyone found that long-term use decreased pain?
Re: Amitriptyline — How long did it take those here who felt relief from these drugs? At what dosage? Has anyone had success weaning off of them without relapse of symptoms?
Re: Discomfort when walking — I have problems exercising. Would described it mostly as an "irritating" feeling to run or walk.
Re: Doxepin — how long did it take being on doxepin for you to feel relief? Do you feel like you felt "back to normal"? Were you able to wean off the drugs without remission of symptoms?
Re: Itchy/irritated mons pubis — not an issue with loose clothing, but when i wear jeans or anything tight fitting this is unbearable.
Re: Pain along labia minora — along the inner lips is the most painful, they sting so much.
Re: Pelvic floor exercise — A SPECIFIC pelvic floor muscle STRETCH turned out to be a simple cure for my vulvodynia! I'm so excited to have finally solved my problem that I need to share it with all of you, because I, like you, suffered SO VERY MUCH and I was so desperate for a solution! Unfortunately there are too many wrong, confusing, even dangerous suggestions online about crazy or expensive treatments, like surgeries, anti-depressants, oxalate diet, etc., when the solution is so simple, yet it eludes everybody. I am proof that vulvodynia can be treated very naturally, easily and FREE at home. If my story can help somebody, at least my pain has had a purpose. I had vulvodynia for almost a year, so bad I couldn't wear underwear/pants, sit down or go by bicycle. [As if it wasn't enough, months after it all began I ALSO started experiencing what I can only explain as urethral spasms (those are actually worse than the vulvodynia pain, because they always came unexpected). I thought there was something wrong w/ my urethra, I even went to a urologist who couldn't understand what I had and didn't find anything wrong w/ me but nonetheless gave me antibiotics which turned out to be totally useless & unnecessary because, as my gyno confirmed, I didn't have whatever strange invisible infection the urologist thought I had. Brilliant!] Anyway, after lots of research online, I realized it was possible that vulvodynia could simply be a muscle problem, so I finally went to a pelvic floor therapist, who confirmed lots of things to me. She did some manual trigger point therapy (which you can do yourself), but mostly what I got out of my experience with her was hope that it could be treated, which was the most important thing to me as the pain was driving me insane. Therapy helped a lot, but as I am unemployed I couldn't afford more sessions. Well, at least I knew for sure it was a muscle problem and nothing else, as I had already experienced a big improvement thanks to her. See, the reason that doctors can run millions of tests on all of you and find nothing wrong/related to the pain is because vulvodynia is simply caused by the SHORTENING of your pelvic muscles due to the trauma of, say, an infection, accident, bad posture, bad habits, scoliosis, or even just stress...you name the cause, you're probably right. Those poor, stressed muscles have contracted to the point of causing internal chronic spasms (whether you feel them or not), which tug at your nerves, thus giving you pain! The secret to reverse it, then, it's simply to LENGHTEN the muscles back to their original shape, by stretching them. I, by the way, requested a fantastic book from the library ("Heal Pelvic Pain" by Amy Stein) which explains all of this in detail. You should look into it, too, if you are looking for more info about how numerous pelvic disorders are simply caused by the shortening of the muscles & by trigger points (she explains how to do trigger point therapy -which I love- on yourself, however I found that the stretch I "invented" was enough to make the trigger points go away on their own!). One of her most useful pieces of advice was the part about "dropping the pelvis": until I read her book I never thought/realized how super tense my pelvis always was. Catch yourself anytime and you'll see that if you have vulvodynia your pelvis is all tensed up, drop it! (It's the same feeling as when you have finally reached a bathroom after holding it in for a long time.) Make a conscious effort to drop it/relax it/let go of it as often as possible until it will become normal to you again. (To better understand what I'm talking about, see her book.) I did the long routine of stretching exercises (for different parts of the body) that Amy recommends however I felt none of them were really specific enough to solve the problem, or at least I wasn't feeling any difference fast enough (I'm kinda impatient)...so, as I am unemployed and I have a lot of time on my hands, I started mulling over where the problem was specifically arising from...I thought: it's not my back, or my butt, or my thighs,... my urethral spasms & vulvodynia pain MUST stem from the front of my pelvis (the area below my navel). Well, then! Those are the muscles I have to lengthen! So I created my own (easy) specific stretch exercise, which amazingly accomplished the job very quickly! I felt immediately better the first morning (I had no more urethral spasms! What a miracle!). After 2 days I was already MUCH better, and after a week my vulvodynia was virtually all gone! The longer you do it, the better. It's something you can do as a tune-up once in a while, too. THE SOLUTION: This is done in bed for as long as possible while you read or watch a movie (you'll know when you've had enough), you can get up once in a while if you really need to move around. (I guess you could try it on a table too, I used the bed as it's more comfortable and you can stay there longer.) On the VERY EDGE(<-important!) of the bed, without falling, put as many pillows as possible under your pelvis (it depends on how high your bed is, mine is pretty low), make sure you have some support for your back, too, if necessary, in order to be as comfortable as possible (you'll figure it all out on your own), but the important thing is that your pelvis needs to be a little HIGHER than your back TO CREATE AN ARCH! Then, let your legs hang from the edge of the bed, creating as much of a backward arch --between your thighs & your pelvis-- as possible. Simply lie there and feel the muscles of your pelvis and lower abdomen S-T-R-E-T-C-H. It's very easy. I even extended alternately my legs for further stretch of the pelvis, one leg at the time as much as possible. I did all of this while reading, so it's no big deal, it actually feels good. (I have a tile floor so I used a towel under my feet to made the sliding easier). This is all folks! Let me know if it works for you. If not, get Amy's book and try her stretches, maybe the muscles that you need to lengthen are not the same as mine. It depends on where your pain is, I guess. FURTHER ADVICE: #1 Months ago, when my pain was the worst, I noticed that the only thing that cut my pain in half was drinking a whole stalk of celery juice. Within hours it gave me so much relief! It might be for the same reason that celery is good for rheumatism (I don't have it), I'm not sure why it worked, all I know is that celery juice surely was a huge help! And it went to prove that my vulvodynia had nothing to do with too much oxalates, as celery is high in oxalates! If you strongly believe that your vulvodynia is caused by oxalates (very unlikely from what I've read) I highly recommend that before embarking on such a restricted, crazy diet at least you bother to get a test to confirm whether your oxalates are off, most likely you'll see that everything is normal! #2 As my therapist and Amy Stein say, do NOT do kegel or similar strengthening exercises until the pain goes away first! The problem is that exercises such as kegel actually tend to further contract/shorten the muscles which, in the case of vulvodynia, are already too tensed up to begin with! The exact OPPOSITE needs to be done, instead: RELAX them! #3 Do NOT constantly touch/mess with the area that bothers you! As my therapist said: if you keep on pressing on a bruise, you are preventing it from healing! #4 Also, as much as possible, try NOT to think about it, I know it's really hard, but you need to rewire your brain so that you DON'T constantly EXPECT pain from that area! Otherwise you're keeping the pain alive through a self-fulfilling prophesy."
rosewaterRe: Suicidal thoughts — I understand feeling so low.When I have flairups of the vulvodynia-sore prickly and itchy.it makes me so down.I can not wear undrwear for long without symptoms getting really bad.I stay at home most of the time as that is the only way I can control it.I worry that my husband will leave me every day,I have 4 children and I keep going on for them -plus I am scared of dying.Also I can not imagine how they would feel.However I feel like I am just enjuring life.I can not be the wife I want to be. Nobody seems to understand unless they have it.If I cancel a social arrangement I can not tell the real reason.I have told a couple of people that I have nerve damage after childbirth,my symptoms started 11 and a half years after the birth of my first son.Every day it overshadows me.On another note the bad days where I think about suicide-I tell myself maybe tomorrow will be better-it will not be so bad.Take care all of you suffering-you are not alone and i wish the best for all of you-try and keep going.
tlm0205Re: Gabapentin (Neurontin) — I am using gabapentin compounded as a 4% topical cream for vulvar vestibulitis. So far, it's been the only thing that has worked to relieve pain. My gyno weened me off it and the pain returned, but I'm back using a pea-sized amount 2-3 times daily with much success (finally!). And luckily, no side effects that I've noticed.
Re: Steroid cream — I have not had this problem for years, but did have it for an entire year. Used the strongest steroid cream out there, Clobetasol, it did not help and turned my thighs red (no, I didnt' put it on my thighs). What did help was deep tissue massage and alot of stretching. The muscles in that area where causing great discomfort. Alot of burning and itching, every day, all the time. Now, it pops up now and again, and I stretch, or believe it or not breath deeply making sure my stomach is going out (learned this from a physical therapist).
Re: Lidocaine — For me it burned when I first put it on, it did nothing for me. I've also read on other sights that even for other people where it worked for a time without burning began to burn them as time passed. My understanding is that this is not good for any long-term relief.
Re: Vaginal dilators — These made me worse, my burning pain was areound the vaginal opening with the diolators I had pain internally. GREAT thats all I need!
Re: Pain after intercourse — Yes I notice this for days or weeks after, it suck!
n3foxRe: Birth control pills — I took the pill for about 6 years and my vulvodynia pain started almost immediately after.
n3foxRe: Clipping tissue (minor surgery) — I had some skin tags removed as well. Helped for several months.
n3foxRe: Symptoms of PCOS — I have the same symptoms as you as well. I have had this "problem" as I call it for about 3 years. Have you found anything that works? Did either of you previously take birth control pills then stop?
n3foxRe: Hair thinning — I have had vulvodynia for about 2.5 years just started experiencing male pattern balding..I also have developed acne and never had it as a teenager. I also have irregular periods. I have had my hormones tested and they are fine and have normal pap-smears.
carowookRe: Contact (Ex: Sex, wiping) — OOOOhhhh yeah. tear-jerkingly painful
chesRe: Geographic tongue — i dont know what geographic tongue is either
crispyRe: Rinse with water after urination — I have just started doing this and it seems to help. have to make sure I am not increasing the touching of the areas that are most sensitive as it decreases burning by will increase other pain symptoms.
crispyRe: Increase estrogen — This seems to help a little bit. I am peri-menopausal. Helps me to at least keep tissues elastic and allows me to still be sexual once in a while. I use At last natural. I was using a cream with ginseng in it that may have worked better.
crispyRe: Anti-anxiety medication — I take two mg of Lorazepam at night along with a codiene/tylenol combination. I take a natural form of seratonin called 5-htp and this helps with both anxiety and depression and nerve related issues. I have fibromyalgia with nerve pain down my legs and burning pain from the waist down. Calming the nerves helps immensely, as does the 5-htp to deal with perception of pain.
pampatfishRe: Geographic tongue — I do not know what geographic tongue is
kwoody128Re: Symptoms of PCOS — I am awaiting results currently on my testing for hormones. I think I they will tell me the same thing with you. I have vulvodynia (i believe originally caused by yeast and bacterial infections.) I am at my wits end. I have the same symptoms as you!
chelseachelsRe: Muscle relaxants — Muscle relaxants are not always good to use unless you already know how to relax your pc muscles. They can also weaken your muscles so they should only be used on really bad days.
chelseachelsRe: Steroid cream — ONLY use a steriod cream if you have inflammation because they thin the skin and can cause more problems than they fix
klayRe: Topical antiviral medication for genital warts — Is this true? OMG, my symptoms got MUCH worse after using EFUDEX..could this have aggravated it. OH NO!
sallyRe: Nerve-like pain — I also have pain in my feet mostly my heals at the same time as vulvar pain
Little OneRe: Anti-fungals — A lot of my problems are yeast-related. In fact, I think I've had yeast for all (or almost all) of the thirty months I've had this crap. In March, when I cultured positive for a rare yeast, I did an oral course of Diflucan, and that reduced my pain substantially while I was on it. However, the doc I saw didn't seem to get it through his thick head that rare yeast= serious problem, and he only gave me four of them. Very bad move! In May, I started developing severe pain after taking ketoconazole (i.e. an increase in all my usual vulvar pain symptoms). I assumed the rare yeast was still there, but a culture in June showed C. Albicans (I'm guessing a mutation of some sort occurred while on Diflucan). Since then, I've retried Diflucan and also did Nystatin. And guess what, they hurt me like the ketoconzole did (that is, they increased my pain). The docs have cited "die-off" as a cause of pain, only I the yeast is never killed. I'm getting re-cultured next week. I'm 99.9% certain I still have yeast. If I could get rid of my infection problem, then my damaged nerves and tissues could finally heal.
So, all in all, I've had mixed results with this treatment.
Little OneRe: Valium — This stuff doesn't work for me at all- just makes me zonked. I prefer Ativan to Valium- it can knock my pain down a fair bit just as long as I use it occasionally and not all the time (it's easy to build up a tolerance to benzos).
pr1979Re: Clitoral pain — I get this sometimes for absolutely no reason. I have noticed that applied pressure helps. I've placed a heating pad with pressure or I've put some of the numbing creams by doctor gave me. I was embarrased the first time I had to mention this new symptom to my doctor. There's just something new every couple of weeks. I've now nicknamed my vagina "The Taliban".
pr1979Re: Pain during sex — This is probably the worst/most annoying symptom for me. I'm 30 yrs old and we've been married for 1 1/2 years. Luckily he's super understanding about it. It literally feels like my right vaginal wall is being scraped by sand paper, and like vinegar is being poured on it. If I do climax (only from external stimulus) it's as if my vaginal walls clamp shut right afterwards, and peeing becomes more painful. I've been going to physical therapy at my obgyn's office, where I found out that I've been learning to relax and un-clench my vagina (I was basically doing a permanent keigal for a while bc of the pain). I get so sad when we try to be intimate bc the mere idea of the pain I'm going to be in makes me tighten up so bad. It's horrible.
Holly86Re: Feeling of leaking urine — I have only developed this symptom after almost getting rid of vulvodynia, you think your finally on the mend and another problem arises.
WeeshRe: Antibiotics — After intercourse I typically experience the symptoms of a bladder infection (cloudy urine, bloody urine, urgency, bladder spasms, burning urination, diahrea etc.) however, tests typically reveal nothing ie no bacteria. Sometimes they reveal white blood cells. This usually occurs a day or two after sex. I follow recommended hygeign and have tested negatve for all stds. Cipro does seem to help at times but if there's no infection then it seems like a bad idea to take it. I would love to know what's going on down there! Oh, and cranberry juice makes everything hurt more down there during flare-ups.
WeeshRe: B vitamins — Any vitamin complex with excessive amounts of vitamin c or b6 or chromium/potassium has led to excrusiating bladder pain. I eat childrens chewables and take them with food only.
WeeshRe: Gabapentin (Neurontin) — I've been on it since 2003. It took more than two months to work up to an effective dose (900mg). Then it stopped working. We increased the dose to 1200 mg per day in divided doses. Since the pain is variable, I can increase it to 2400mg as needed. While it works well on the fibro and generalized vulvodynia, it does nothing for my vestibulitis or bladder pain. Also, I've experienced increasing levels of anxiety on it and my mood has been exceptionally variable. Cymbalta and Effexor were ineffective for my pain. Strangely, non-drowsy sudafed seems to help though it's side-effects can be dangerous.
matildaRe: Tight jeans/clothes — I used 'Skins' (skin-tight rubber-based sports tights) for DVT on a long haul flight a while ago - for weeks afterwards, my vulva and vagina were swollen. Is this an allergic reaction? Also can't wear anything tight - really irritating in every sense of the word.
matildaRe: Physical Therapy — I did this for 6 months, beginning with biofeedback (which seemed to aggravate my particular symptoms) and then internal trigger point massage which hurt like hell but seemed to give me hours of relief. 'It' always came back however, usually the next day, to the extent that my very experienced and able PT referred me back to gynae saying that there was either a structural or an allergic causation. Gynae is not sure that the mild rectocele I've got is causing the pain. I'm sure something allergic is going on with me. Anyhow, strongly recommend that sufferers try to get hold of good PT because it definitely helps some folk. Beware of those PT types who are jumping on this particular bandwagon recently however - check out their actual knowledge and understanding.
matildaRe: E2/E3 Bioidentical Hormones — Have been taking progesterone troches for 8 months now and they have made a real difference to both mood and vaginal lubrication.
matildaRe: Anti-depressant medication — Couldn't take the side effects - felt really wierd - but only tried for a week
matildaRe: Steroid cream — Having had a vulva biopsy confirming dermatitis and possible lichen sclerosis, gynae has given me topical steroid cream that I am very wary about. I'm using it really really thinly and, frankly, after reading these comments, am tempted to stop immediately.
matildaRe: Discomfort when walking — I haven't read of anyone else suffering from this so am really interested to know. I used to love walking for exercise - quite fast - about 40 mins a day. A uterine prolapse and hysterectomy stopped this 2.5 years ago but then found that walking makes the vulva area sorer. Really miss the walking.
matildaRe: Pain when sitting — Lying on the sofa with my feet up at the end of the day is such a relief. Sitting down discomfort varies with how much my vulva area has encountered. Ironically, walking aggravates it. Can't wear tight anything down there, panty hose seems to aggravate too
matildaRe: Dull aching sensation — This never really disappears - on the left hand side.
matildaRe: Buzzing sensation like vibrations in pelvic area — I got this on my clitoris right at the beginning and now get it generally every now and then
matildaRe: Hair-pulling feeling — PT helps with this
matildaRe: Sensitivity to cold — Feet often cold in winter, circulation not the best.
matildaRe: Pain — My pain is not on touch although I have to be careful with wearing tight clothing. I have a generalised 'sore' ache on the left hand side of vulva. In med exams, no pain.
matildaRe: Itch — Itch presently caused by vulva dermatitis
matildaRe: Pain during sex — Last time we tried - about 4 months ago - the whole area was so swollen that penetration was impossible. Before that, when my symptoms were developing, it was the aftermath that was really sore.
matildaRe: Rawness — I haven't always had this but occurred a lot after sex in the past. Have just had a vulvar biopsy (would recommend anyone with longterm vulvodynia to do this) that revealed dermatitis, possibly lichen sclerosis.
hello36Re: Rinse with water after urination — if urinating bothers you, try prelief tablets (sold at wegmans and some other random places, check their website)
seemed to help me so far! gets rid of that acidic burning feeling (isn't this condition lovely?)
hello36Re: Discontinue hormones — There is recent evidence about women having low levels of free testosterone from being on birth control that do not rebound after going off birth control. This may be related to vulvodynia so getting your blood checked for your levels of testosterone/estrogen may help!
hello36Re: Identify/avoid allergens — Burning and pain while standing/sitting/walking/running went away mostly after avoiding gluten. Now trying to avoid yeast for a while, too, since I have a history of chronic yeast infections. I am very convinced my pain has something to do with food intolerance. Still have pain on contact, but nothing compared to before and have only been avoiding foods for about 1.5 months (and not very strictly until about a week ago).
I highly recommend exploring the connection between foods and your symptoms. And women, remember, you will get better!!!! Just keep trying!!!! It may seem like you read so much about women who are still suffering, but think about all the women who have had this, discovered what was wrong, got better, and NEVER posted anything online about what made them better!!!! So we willl all get better and when you do, make sure you post how online so other women can have hope!!!!
Little OneRe: Lidocaine — I agree with the person who slammed the cotton ball trick. It is absolutely horrible. Last night, I used my new compounded gel with the cotton ball, and it seems that some of it leaked off the cotton, and into my urethra and vagina. Now I have burning irritation there, and I hope I don't pick up some bacterial infection on top of my existing yeast infection (ugh). I also have a skin burn from it, too. Also, I've used compounded liquid lidocaine on cotton, and it had no numbing effect whatsoever. Plus, it gets used up quickly (only lasts two weeks, and that amount costs $100 USD- not cost effective at all).
I think the compounded gel on its own holds some promise, though- as long as I do not get overexposed to it with that *stinking* cotton ball!
no.help.in.atlantaRe: Laparoscopic removal of scar tissue from hysterectomy — This helped more than anything else for me. I had been in pain for nearly two years. After seeing 5 other gyns I was recommended to see a urogyn who had seen success in patients who had vulvodynia and likely scar tissue from prior abdominal surgery. I am 3+ months post-op and have been in much less pain than in the previous two years. I am still rehabbing and getting stronger, but I feel like I have my life back! I am able to sit, ride in car for more than 45 minutes and can once again go to movies and to church without being in agony.
no.help.in.atlantaRe: Gabapentin (Neurontin) — Worked well for a while but had to use it three times per day to be effective
Little OneRe: Physical Therapy — PT didn't do much of anything for me. However, I recently learned that I have a tailbone misalignment issue, and that this has made my pelvic floor asymmetrical. Am hoping to see an alternative PT in Ohio who has much familiarity with pelvic floor misalignment. He doesn't do the typical internal stretching, but that stuff never helped me anyway (I've had extensive PT).
Little OneRe: Suicidal thoughts — Thank you, greenpants and Emseetwo.
I'm still alive (unfortunately). I recently found a good doc- thousands of miles away in NYC (I live in Canada, and here, there is hardly any good help). She is probably the nicest person and the world, and believes she can help even though I'm far away. However, I don't think there's much hope for me now. *Every* story of a vulvodynia sufferer from my city (that I know of) ended in FAILURE. Getting a new doc who is local will not work in my situation- there is *no* help for this where I live!!!
I did learn a few months ago that one of the things keeping me from healing is recurrent yeast infections. In March, I cultured positive for a rare yeast. That infection is now gone, and has been replaced with Candida Albicans. I'm on an *extended* antifungal regimen now, but in my case, all of them cause "die-off reactions" (i.e. worsening of symptoms before any sign of improvement is seen), and increased pain is very hard to deal with. I have lost a lot of my skin thanks to constant yeast exposure.
What really sucks is that I was on my way out of this hell back in March. A combination of hormone cream and Diflucan for the yeast reduced my symptoms by 70% in a matter of weeks. Unfortunately, when I was pulled off Diflucan too early, and had to temporarily stop the hormone gel, the pain got right back to its intolerable level. Now, I'm trying the same treatment combo, and I don't think it's going to do a damn thing this time. It's like my body *refuses* to heal from this crap. Plus, this time around, the Diflucan is causing some die-off (it didn't before), and that just adds to the discouragement.
Emsee, the last time I tried talk therapy, the therapist basically told me that I'd have to live with this crap. Needless to say, I stopped seeing her. Also, I've tried Cymbalta, and it led to severe insomnia- ZERO sleep- night after night after night. I couldn't tolerate it for this reason. How did you get well (and how long did it take)?
jdabRe: Antibiotics — same here. and I'm not even sure i had a UTI in the first place. Dr didn't even culture and i trusted her and took the pills
DaniRe: Gravelly feeling in labia — I feel like my labia has changed to a gravelly feel but I have told my gyno and dermatologist but they insist that it's normal... as if they new what I looked like before all my problems started... so frustrating when drs. dont' listen.
miqueRe: Pain when sitting — My doctor has suggested a u-shaped pilow, almost like a toilet seat cover. Does anyone have any idea where to find one, or what they are called when searching medical supply houses. My sympathies to all suffering. i have been this way for 11 years and have tried everything; even have a mostly worthless pain pump. I need non-drug answers!
LauraaRe: Trimovate cream — Used twice a day for a year, this has lessened the severity of pain significantly. Still really painful though and not seeing any further improvement. My gynae has told me to stop now. Will try acupuncture and Chinese herbal medicine next.
EmseetwoRe: Suicidal thoughts — Little One, consider talking therapy, a drug called Cymbalta, and a new doctor. You can get through this by talking and helping others understand your pain. I have vulvadynia, I'm living proof that it can get better.
greenpantsRe: Suicidal thoughts — I have had these too, at times frequently. Please hang in there. Relief may be closer than you think. If you need to talk, I'm at madpeachblog AT gmail dot com.
DaniRe: Monostat / yeast creams — I had been normal for all of my 40 yrs... then I get a yeast infection or at least that's what I'm thinking... nurse over phone said "take the one a day Monistat" and call us in a couple of day.... Once, I inserted the monistat the burning the rest of the day and night was soooo intense I have had the burning feeling ever since.... I can't say for sure that what it was but it's coincidental then.
DaniRe: Burning around anal opening — I also have the burning feeling all around my anal area... dr. said that all the nerves are connected ... like the pebble in the pond... well it burns all the time but with the antidepressant Desepramine has helped but not completely... has made it more bareable to live with.
Little OneRe: Suicidal thoughts — I have this all the time, now. If nothing changes soon, I will probably go through with it, b/c a pain-filled life is utterly worthless to me.
princezmayeRe: Dripping feeling — a lot of dischargeeeee
sufferingfromvpainRe: Irritable Bowel Syndrome — I started having vulvodynia and IBS around the same time!!!!
sufferingfromvpainRe: Stabbing pain — The stabbing pain usually only lasts for a few seconds
Little OneRe: Amitriptyline — I took this drug for a year. I credit it for preventing me from becoming bedridden by my symptoms. However, it only helped about 30%, and when I got up to 150 mg, I had *three* seizures (and I don't have a seizure disorder)! I can no longer take Elavil b/c of that. Very unfortunate, b/c in conjunction with other treatments, it would have probably helped a lot.
Little OneRe: Amitriptyline — *Double Post*
Little OneRe: Estrogen/Testosterone gel made by compounding pharmacy — I was prescribed this stuff due to vulvar atrophy (I'm only 27, btw). It worked very well for three weeks (after taking two weeks to kick in). It worked especially well when I was taking antifungals for my rare yeast. As for side effects, it initially stopped my period (which made me feel heaps better- I do *not* do well on my period!). When my period came back, so did my pain. Also, the problem with topical hormones (for me) is that they may be encouraging my yeast to stick around. I will definitely give this treatment another shot, but need some physician guidance b/c of the fungus issue.
Little OneRe: Chronic yeast infections — I have rare yeast (saccharomyces cerevisiae), which I believe was missed by cultures I initially had done. A more specialized culture found this. I know think this may be one of the main reasons I have vulvar pain. Am on a six month regimen of anti-fungals. I hope killing the yeast makes me feel better!
SweetRandiRe: Shooting pain upward inside the vagina — I have this Burning sensation 24/7...like a lit cigerette lighter was up inside my vagina..I have had vulvadynia for 10 years..
been through 2 useless surgeries and 17 Doctors..
I finally am on pain management and have a medtronic device,
implanted that works just ok.....but it's been a long road, where i could not function from the pain...could not leave my house..just had to soak in a warm bath and use icepacks...
rgamlinRe: Burning — I have been dealing with burning and itching for years now. I have done everything and have gotton relief from anti depress. I have 6 years of no symptoms and got a bacteria infection and it has started all over again. As a child I suffered with eczema all over my body including in the vagina area. My skin is very sensitive. My new treatment I am trying and has givining me big relief is soaking in hydrogen Peroxide. Not the one you can buy in the store. It has to be 35% and you can only get it on line. As I read everyones comments I feel for each and everyone woman that deals with this. It really helps to hear other peoples comments and makes you feel not alone. I hope my treatment can help some one
kathy1Re: Amitriptyline — was depressed and had suicidal thoughts due to neuralgia type pain endep(amitriptyline)saved my life! It took 2 weeks to work but has controlled the pain.I still have mild pain on some days but nothing i can't handle i walk 4 km a day and find this helps weight gain and pain i feel lucky compared to some
kathy1Re: Anti-anxiety medication — same amitriptyline improved condition could not live with out it
ElRe: Vestibulectomy — Th docter considered this and then said it would not work because the skin is (or looks) so healthy
ElRe: Amitriptyline — Made me feel drowsy and sad. No relief from pain.
ElRe: Lidocaine — It burns !
ElRe: Trigger point therapy — A horrible experience. The therapist triggered teh pevic muscle and it hurt immensely foor about ten days. I cancilled the other treatments
ElRe: Pain — Sometimes I think I go mad. I have this now for six years, I am 58 and I pray for the day that my pain wil be over.
ElRe: Pain during sex — Penetration hurts to much. But even everything else is nearly impossible. When I get excited I am punished afterwards with pain for days.
ElRe: Feeling of tightness in vagina muscles — The muscles are very tight at the left side.If they are touched by the physical therapist they start to hurt an hour later or so and it stays on for two or three days
celeryRe: Injury — I also got vulvodynia after i began having sex with a new partner. He is well endowed and sex was never comfortable. One day when we were having sex, i felt something snap in my back and had terrible pain in my coccyx. A week later i developed vulvodynia symptoms. That was about a year ago.
EllyceRe: Acupuncture — I am currently trying accupuncture again and this time the Dr. pressed on my levator muscle which made me spasm later. Then he put needles around the vaginal area on the sides which did not help and then on my lower back. This is something I have never heard of in that area but I will try a few more times.
EllyceRe: Constant burning — I developed Vulvadynia 4 years ago when I had constant burning, thought I had a urinary infection. Everyone told me I was dry and to take premarin cream. It burned and then I found a Dr who specialized in this. I tried everything including a vestibulectomy. Burning and spasming came back. Dr. put botox in vagina and bowel. Did not work. Nerve blocks did not work. Now they want to do more surgery near my urethera and I am scared. I burn or spasm everyday. Every now and then I have a free day and everyone can tell as I am a completely different person. Is there any help for this????
janewhiteRe: Give birth — First doctor I saw for this told me this would be the perfect cure, and, when I said I wasn't ready for motherhood, told me I should really hurry up and have a kid while I was still fertile. I was 23 and had no job.
janewhiteRe: Allergic reaction to feminine hygiene product — No, but I think allergic reaction to yeast creams might have!
janewhiteRe: Clitoral pain — Shooting stabbing pain through clitoris when I orgasm. No idea why. Have orgasms anyway, pain is about 5, pleasure is 8-10.
janewhiteRe: Pain during sex — Lidocaine, or not tonight honey!
OoleepeekaRe: Symptoms of PCOS — I added this as a "symptom" because somehow I have:
3)Symptoms of PCOS without actually HAVING PCOS (!?!? the best the endochrinologist could suggest was that I'm "genetically predisposed" but I haven't had significant weight gain, my hormone levels are normal and I have no visible cysts. But my hair is falling out, I have male-pattern hairgrowth and acne, and irregular periods.)
I'm not sure I believe in "coincidences" so I'm curious to know how many other Vulvodynia sufferers experience this.
OoleepeekaRe: Itch — I am itchy 24/7 and sometimes it is SO unbearable. The skin is so tender, if I even attempt the most gentle scratch - my skin "cracks" and bleeds a little.
OoleepeekaRe: Irritable Bowel Syndrome — I have dysmanohrrea which causes IBS to accompany my periods.
OoleepeekaRe: Hair thinning — I've had vulvodynia for 4 years, my hair has been falling out the last 1.5 years. I'm apparently "genetically predisposed" to develop PCOS, as I have many symptoms but not the main ones, so this could be a reason for the hairloss. I'm not undergoing any treatment for Vulvodynia.....
IowaGirlRe: Antihistamines — I have bad seasonal allergies so I take an antihistamine with decongestant 2x a day. I had been prior to the onset of my VV and VVS. This week I added an old school antihistamine and it seems to be helping with some of the irritation. Hydroxyine HCL
dr32Re: Detoxing mercury with alpha lipoic acid/DMSA — I've had mercury poisoning most of my life but chronically since over 5 yrs ago. Still have it in my brain and found out can detox with ALA. Did that 100mg/3 hours for 5 weekends in a row and took DMSA one night(bad). Got a bact vag inf and treated that with large dose antib then had yeast and now just have pain. Only thing makes it better is temporary-ice, tea tree oil, boric acid suppositories, etc.
eshmoyerRe: Antibiotics — I never had a problem until I took Macrobid 2 months ago and then the pain and burning started within a couple days. I can't seem to fully rid myself of it. Sometimes its better than other times, but I haven't figured it out yet
visibleRe: Birth control pills — I think that the pill definitely makes it worse. In my case, my symptoms for past 8 years have always coincided with going on and off the pill. I had a Mirena IUD inserted 2 years ago and have since then had the worst yet experience of almost constant itching, the main symptom of my vestibulodynia. I suspect this is because it is progesterone only and my body is not producing enough estrogen (noticed my symptoms totally disappeared during pregnancy and breastfeeding). I am having the Mirena removed next week and will post any improvement.
visibleRe: Acupuncture — I think acupuncture helped me to sleep better and did relieve my symptoms somewhat, altho I was also on anti-candida diet at the time.
visibleRe: Exercise — I do seem to feel better on the weeks where I'm getting some exercise in (gym or yoga)
visibleRe: No underwear — I feel like when I'm at home with no undies and a nightie or whatever on, it's hard not to scratch and i feel almost hyper-aware of what's going on down there. Somehow putting underwear on and going out distracts enough (usually, not always) that I get some relief.
visibleRe: Acupuncture — I think acupuncture worked to help me sleep better, if not to directly stop the itching. I did it for about 6 months weekly or every 2 weeks.
visibleRe: Steroid cream — I am convinced that my whole condition came about 8 years ago after a particularly bad yeast infection and a steroid cream I used shortly afterwards for a couple months. Since then was convinced out of desperation to try another steroid cream by a gynae but it had no effect so i stopped using it after a few tries. Dermatologist said my problem (vestibulodynia) cannot be resolved with steroids as it is nerve-related, not skin condition.
visibleRe: Lidocaine — I use 5% on cotton and it burns a little for first 10 or 20 mins, then works for a couple hours to stop the itch/burn.
visibleRe: Rinse with water after urination — For me seems to work better to rinse with water and emulsifying ointment.
visibleRe: Lidocaine — Stings at first but then works for about an hour or two to take away the itch and pain.
visibleRe: Identify/avoid allergens — I have tried an anti-candida diet which did help, I think, but was unsustainable for me (at least on strict basis) beyond 6 months! Specifically notice flare-ups after eating sugary foods, i.e. wine, sweetened drinks or cakes/etc. Dermatologist sceptical about candidiasis but says eating sugary products may make urine more irritating when in contact with vestibule (my area of pain/itchiness)...
visibleRe: Give birth — Pregnancy and the whole period I breastfed my baby (5 months post-partum) my symptoms completely disappeared, making me think the whole problem is hormonal. Also I don't know if this made any difference but I had an emergency c-section, not natural birth.
visibleRe: Ketamine / amitriptyline / clonidine / prilocaine / lidocaine / ketaprofen / Neurontin ointment — Lidocaine stings at first (10 mins or so?) and then works for about 2 hours, for me.
DaniRe: Biofeedback — Have never tried it but Dr. John Willems at Scripps in San Diego does have it available in that hospital.
DaniRe: Estrace cream — Have been using a compounded estrace cream because regular estace cream seemed to burn... anyways.. .I've been using it for about a month..Dr. said my nerves/skin are really thin and that the estrace cream can help build new tissue haven't noticed any results yet but will keep you posted on my next Dr. visit.. in June 09
DaniRe: Burning — I have seen over 10 doctors from gynecologist to dermatologists.. I've seen Dr. John Willems at Scripps in Carmel Valley, CA he does treat women with Vulvodinia and does take the time to listen to you... I've been dealing with this burning feeling for almost 3 years.. the only relief I get is from taking Desipramine which has helped the burning pain significantly. I got a recommendation from the NVA for a dermatologist in Santa Barbara Dr. Kemplerer and she does specialize in Vulvudenia.. she actually has a questionare with most of the vulvudenia symptoms. I guess my reason for naming the dr. is because to some degree I have had some success.. Not cured but hoping for one day. The Desipramine has really helped with the burning to at least live a somewhat normal life... I still have the raw feeling but not as bad as I used to. You can sign up the National Vulvudenia Association and they have referrals to specialist and sometimes they do studies where you can volunteer. Just go to NVA.org for more info.
DaniRe: Stinging — the stinging feeling I get is usually worse after my period but seems worse after sex too. Going on 3 years now.. Just want to be back to normal...
DaniRe: Rawness — my dr. is treating the redness with an estrogen cream that has been compounded I won't know if it's better until next dr. apt. but I too am super red and the skin just feels raw... I'm also taking desipramine and have been taking that for almost 6 months does seem to help with the burning feeling.
DaniRe: Redness/inflammation — I have cronic inflammation and doesn't seem to go away .. inicially was treated with a steriod cream but that didn't help.. so far it's been very discouraging.. and just feels irritated and swollen. :-(
EmseetwoRe: Ketamine / amitriptyline / clonidine / prilocaine / lidocaine / ketaprofen / Neurontin ointment — I'm taking neurontin (Gabapenton) and using lidocaine. Gabapenton is currently giving me double vision and I can't tell if it's actually doing anything to benefit me. Lidocaine cream works, but it makes my stomach feel achey and burns my skin instantly, then goes away. It's like a flash of pain, then dulls everything away.
greenpantsRe: Drink baking soda — This is actually something people with interstitial cystitis do, but I find it eases the pain of a flare within a half-hour or so.
smileygramRe: Hair thinning — My hair keeps thinning. I have had vulvodynia for almost 5 years. I think it is from the medication.
smileygramRe: Labial swelling — Holly, I may try baking soda in my bath. Any sitting down hurts me. I also suffer from pudendal neuralgia. Aerobics is out for me too. I used to love it.
smileygramRe: Sensitivity to cold — I am cold most of the time too. Usually wear socks and sometimes wear them to bed. Use an extra blanket too.
smileygramRe: Feeling of tightness in vagina muscles — I did 9 out of 12 visits with my physical therapist. Her recommendations helped with bodily functions and intimacy relations but not with pain.
marit_pkRe: Electronic muscle stimulation — Is that like acupuncture with the electric needles? That was surprisingly useful. Didn't hurt.
jaconliRe: Lidocaine — I used the xylocaine 5% (not alcohol based) & mixed with petroleum jelly to "dilute" it. I does help but wears off..also using it on cotton ball at night as others have recommended. It helps..but hoping for long term relief
accRe: NuvaRing — I experienced extreme dizziness, nausea, headache, depressed mood, as well as blurred vision and sudden flashes of light/sudden dizzy spells (warning signs of stroke), so I had to discontinue the ring after only 7 days. Wikipedia says adverse side effects occur in up to 15% of women.
no.help.in.atlantaRe: Feeling of tightness in vagina muscles — physical therapy has helped
EmseetwoRe: Feels likes UTI, but tests negative — @ freepress, get tested for a bladder condition Interstitial Cystitis as soon as you can. I was diagnosed earlier last year and it was such a relief to have an answer, I've changed my diet, and take a medicine called Elmiron and I can control those terrible symptoms I dealt with for close to 12 years.
EmseetwoRe: Sensitivity to cold — Being cold actually hurts my muscles and skin. I feel genuine pain all over.
hollynoelRe: Labial swelling — I have the same exact problems, especially when on the treadmill. I found that taking a bath in baking soda helps. I believe a lot of this has to do with a hormonal imbalance/PH inbalance. Holly
LoriRe: Tearing/ripping feeling — on contact only
MagentaRe: Pain during sex — can't say whether or not this is a factor, as it is too painful to even consider having intercourse
MorrigirlRe: Gabapentin (Neurontin) — My gynecologist put me on Gabapentin almost three years ago to combat severe clitoral pain, and it has helped a lot. Before i started on Gabapentin the harsh shooting pain was unbearable. Even when I was laying or sitting completely still I experienced pain. The Gabapentin totally stopped the pain and enabled me to go about my daily life without being in agony.
MorrigirlRe: Amitriptyline — I've been on Amitriptyline for almost three years now and it has done wonders for me. I suffer from vulvar vestibulitis as well as dysthetic vulvodynia. Before I began taking the medication my pain was so bad I couldn't walk, could barely even get out of bed, and couldn't go to work. After a couple weeks of Amitriptyline my pain was greatly reduced. I was able to return to work, to walk, to actually move around and behave like a normal person again. don't get me wrong, it isn't a miracle drug. I still have pain flares and there are still limits on how much physical activity my body can take. But I am much better off with this medication than I was without it.
rosewaterRe: Give birth — I developed vulvodynia after my first birth. I got a graze the size of a 50p piece and this became horribly infected.Not sure if it was this all the treatment-antibiotics and antibiotic cream I had to use triggered the vulvodynia but I have never been the same since-over 10 years ago.
rosewaterRe: Vitamins/Nutritional supplements to restore health — I read that oliveleaf extract and Red wine extract supplement could help.Since I started these the burning feeling like I was coming down with a UTI has stopped. unfortunately I still get burning in my vulval after after sex
These are really worth a try!!!!
rosewaterRe: No underwear — I am having such bad symptoms that as a stay at home mum I stay at home most of the day without underwear on and a cotton skirt on .If I wear underwear outside for a few hours I seem to develop a yest infection or bacterial vaginosis.I am so depressed that the only way I can control this is by limiting my social life. I am very scared as towhat the future holds simply because I can not stay home and 'air' all the time.
I get very iitchy with underwear on even though I wash with no perfume and free from all washing powder and rinse about 3 x .
I am only 31 and this is ruining what could have been a very happy life.
rosewaterRe: Premarin — Brilliant at first-gave me great relief for about 5 days-then I got a very bad yeast infection.The doctor said that the Premarin had caused it.I was so disappointed as I had to stop using it.
caraRe: Electronic muscle stimulation — I have Physical Therapy 1x week. Electrodes are placed around the area that is painful. Takes only 20 minutes, and is not painful. I have been 6 times and felt some improvement right away. The NVA newsletter recommends going for 16 weeks (I think) for full benefit. Sometimes I am more sensitive on the day I have had PT, but then I feel improvement after that.
caraRe: Desipramine (Norpramin) — It takes a couple of months to feel the full benefit of Desipramine. I'm going to stay on it for about a year and then slowly dose down to see if my symptoms have gone away. I'm taking 150mg/night. Now my symptoms are not the first thing I think about when I get up in the morning. I have days where I don't have any pain. It has helped a lot. Also, I do nightly Lidocaine and Estrace and PT 1 x week (Electronic Muscle Stimulation).
JudiRe: Car accident/nerve injury — I'd had bladder problems most of my life. However, 10-12 years ago I was involved in a collision that gave me an extreme groin pull. It also injured my left thigh and ankle. I took two years for my left leg to return to normal...but afterwards I favoured that leg and my hips etc. Once back to normal, I began rollerblading and engaging in yoga. My symptoms were mild at first and I mistook them as yeast/bacterial infections and lack of lubrication. Doing squats and trying to stretch my hamstrings was the last straw.
JudiRe: Clitoral pain — My symptoms came after the vulvodynia started...first ic like...then yeast infection like...then aching sit bones...then vv was intermittent...then clitoris swelled-up and felt like repeat / continous orgasms were occuring plus stabbing pains and then everything deflated and now the pain is fairly constant. Two things have helped...I work standing-up and I take neurontin.
JudiRe: Headaches — I can predict my headaches and avoid them (almost). If I avoid red wine, chocolate, caffeine, garlic, strong flavored cheese, and get a good nights sleep for 1-2 days surrounding the begining of my period then I'm usually golden. The rest of the time I can (and do) eat what I want. Wellbutrin seems to increase the frequency. The headaches give me stuffy sinuses, hot face, throbbing on one side, vision changes, and disorientation. Sometimes they effect my writing, speech, and sense of smell.
dcaryRe: Application of ice — I have used frozen Broccoli in the absence of peas. My husband of 16 years left b/c he did not think I was really trying to get rid of this awful condition so my friends and I tease the I am sleeping with a man named Brock O. Lee. Gotta laugh to keep from crying. I do both! Ice deadens the area and the relief is only temporary, but temporary relief from pain is better than NO relief!
dcaryRe: Low oxalate diet — I cannot say that I followed the diet 100%, but I was pretty good for about a year - took timed Calcium Citrate also, but did not get better. I was part of the Vulvar Pain Project, but I had had a partial vulvectomy and that is what they thought made it hard for me to respond to the treatment. It has, indeed, helped many others though. In order to see if oxalates are high, the urine must be captured separately - not a 24 hour pool. There were certain times during the day when my oxalates were normal, but they spiraled upward in the evening, night and early morning. If those samples had been pooled, my oxalate count would have been normal even though at certain times there were over 7 times the "normal" rate.
dcaryRe: Gabapentin (Neurontin) — I take 800 mg 3x a day. Sometimes I think it isn't doing anything b/c I am still in pain, but if I try to go without it, I realize that I am in far less pain with it than without it. It does make me dizzy and woozy sometimes - helps with the fibromyalgia as well as the vulvodynia - wish it made all the pain go away!
dcaryRe: Amitriptyline — The pain seemed better, but I took it for about 10 years and I ended up with very bad PVCs (Premature ventricular ccontractions). People livewith PVCs all the time, but I was having about 70 per minute around the clock. Thought I was having a heart attack. I now can no longer tale Amitriptyline or any meds of that kind.
freepressRe: Trigger point injections — improves pudental nerve problems that are sometimes in vulvar area, sometimes in back of top of left leg. Wish it helped consistently.
freepressRe: Desipramine (Norpramin) — Drops symptoms down to tolerable. Does increase the "spinny head" side effect I am already getting from gabapentin (neurontin). But I won't go off the desipramine; it is a definite help.
freepressRe: No underwear — No underwear when I'm at home when it's acting up. I agree with other person who says it just eases the symptoms a bit, not a solution.
After a while, I sometimes feel better with underwear on, kas if the tissues are getting too dried out from the air exposure, or something. I don't know what this part means.
freepressRe: Steroid injections — occasional cordtisone/lidocaine injections for pudendal nerve. It really helps someitmes, not others. I don't know why it's inconsistent.
freepressRe: Anti-depressant medication — disipramine helps some, I believe.
freepressRe: Physical Therapy — Go to therapist who specializes in pelvic pain. Of all the medical providers I have seen or currently see, she has the best suggestions about whom else I might/should see. Sometimes the PT helps; sometimes it makes it worse. Now i've learned that this is because of the Bartholin's gland; when she doesn't touch this, it's better. When she does, it's worse. Now we both know this.
She helped me learn how to recognize and relax my pelvic floor muscles.
freepressRe: Lidocaine — Used this as an injection with cortisone to calm down the pudendal nerve. Really helped sometimes, but try to do it sparingly, because of the cortisone.
freepressRe: Identify/avoid allergens — Based on experiences with a few topical products for other things (e.g., deodorant, skin cream), I'd believed I was allergic to propylene glycol on irritated skin, which the CDC says is a recognized condition. The last straw was when I discovered that what was bothering me wasn't a years infection but was exacerbated by the yeast treatment, and I saw that it had propylene glycol. That was what all the produts had in common. It's found in many medications, so I have to use a compounding pharmacy for estrogen cream, etc.
Did other allergy tests; didn't find anything relevant to vulvodynia.
freepressRe: Pain — Comes and goes ,but almost never completely gone. Worse when I site or walk. Better when I lie down. Mostly in vulvar area. Could be burning, sharp. When bad, it's also aching. I can't wear pants; can't have sex except rarely.
On touch at back of vulvar area (Bartholin's gland) pain is excurciating, like touching a raw nerve. This happens in med exams, pelvic physical therapy, etc.
freepressRe: Nerve-like pain — Definitely. This has been diagnosed as pudendal neuralgia. Pain can be at top back left of leg (ischial tuberocity). Can run down back of left leg. Sometimes virtuallyt o knee. Worse when I sit for a long period. Some help from acupunture, some from gentle stretching.
freepressRe: Pain worst before period — If I had a flareup, then it would last until my next period started. Then it would die down during my period.
Now that I've gone through menopause, my flareups are generally not as bad, but, on the other hand, there's not the relief that the start of the period would bring.
freepressRe: Pain during sex — Yes. But what I hate and fear more is afterwards; after sex, my symptoms flare up and can last for days or weeks.
freepressRe: Pain when sitting — At its worst, I have to lie down. Fortunately,, this has been more like a 4 of 5 at its worst since starting Gabapentin (neurontin) and disipramine several years ago. I recently found that some of this is caused by inflamed Bartholin's gland, which is at base on vulvar opening. Hot baths make this somewhat better. This was a great, great insight.
freepressRe: Dull aching sensation — eased by lying down, relaxation breathing and relaxation exercises to relax pelvic floor; can go on for days
freepressRe: Feels likes UTI, but tests negative — so sensitive to any pressure on bladder, though nowhere near as much burning on urination as with a UTI
DelphistarrRe: Application of ice — I am quite fond of the bags of frozen petite peas.
AnnitaRe: Acupuncture — Acupuncturists vary greatly by training and experience. If one person doesn't help you, perhaps another one will. Be sure they do your full body head to toe, that they address ALL your health problems (not just pelvic pain) and that they do your front and back. I have found acupuncture tremendously helpful, but I have an EXCEPTIONAL TCM doctor.
DelphistarrRe: Vestibulectomy — My chronic inflammation/itchiness was still itchy right after the surgery! So frustrating!! I wish I had never had it done.
DelphistarrRe: Clipping tissue (minor surgery) — My gyn thinks that I am still itchy because he missed a spot. I do not agree. I don't think getting rid of that area of skin helped the problem at all.
DelphistarrRe: Acupuncture — Worked for a year to keep the intense itching at bay, then when I stopped taking the Temper Fire herbs the itchiness came back full swing even when I went back on the herbs.
DelphistarrRe: Steroid cream — Works temporarily then causes burning and pain if used too long.
DelphistarrRe: Rinse with water after urination — I think it was the coolness of the water that helped calm down the inflamed skin.
DelphistarrRe: Gluten-free diet — A food sensitivity blood test I had came out that I had a severe sensitivity to gliadin, the protein that makes up gluten. I went on a gluten-free diet for a few months and it only made me depressed because I wasn't eating very much and it did not help with my inflammation itchiness symptoms.
DelphistarrRe: Discontinue hormones — Did not notice a difference
DelphistarrRe: Redness/inflammation — I look normal but have chronic inflammation, which the doctors found out via biopsy.
DelphistarrRe: Itch — I treated myself for yeast infections for over 10 years - since puberty - only to finally be diagnosed with "bad skin" a few years ago, never actually having had a yeast infection. However, since then I have had perinioplasty hymenectomy surgery (they removed my hymen and the skin on my perineum) which got rid of the pain I was having but did nothing for the daily insane itchiness of my inflamed vulva. I have tried every cream out there, including specially mixed concoctions, found out I am allergic to cortisone, sadly the only drug available for inflammation, and have tried only wearing cotton underwear, mild detergent, gluten free diet, food allergy and sensitivity diets, and nothing has worked. I can use tiny amounts of triamcinolone acetonide cream but if I use this too frequently the itchiness gets replaced by burning pain. I think my chronic itch is related to hormones as it gets worse right before my period and am going to look into this next.
DelphistarrRe: Bleeding — I start bleeding a little when I itch my vulva raw.
DelphistarrRe: Shooting pain upward inside the vagina — I always wondered if I was the only one with this sporadic problem. It does double you over, thank goodness it does not happen very often.
DelphistarrRe: Pain worst before period — I would swap out "pain" for intense itchiness.
DelphistarrRe: Pain during sex — I was not able to have sex or use tampons until I was 25 and had my hymen removed. I couldn't believe that I lived with the pain for so long and it took my gyn so many years to figure out that that was the problem.
DelphistarrRe: Constant burning — only when i am super-itchy and itch myself raw which turns into burning, especially during urination
DelphistarrRe: Dripping feeling — I also get the gush of fairly aroma-less white creamy stuff.
DelphistarrRe: Pain during period — I am only checking yes on this one because there is no "intensified itchiness before/during period" option. My chronic inflammation of the vulva definitely gets 10x worse right before and at the beginning of my period.
DelphistarrRe: Sensitivity to cold — I am cold all the time!!! My acupuncturist thinks it is because my heat is all going to my vulva, which is constantly itchy and inflamed. However after a few years of acupuncture treatment it has still not ultimately helped, although it did for the first year when I was on herbs called "Temper Fire" and then it just stopped working.
itsnotsupposedtohurtRe: Selective Serotonin Re-uptake Inhibitor (SSRI) - Low Dose — and the mess it made of my head...
itsnotsupposedtohurtRe: Acupuncture — No effect, I was very dissappointed.
itsnotsupposedtohurtRe: Steroid cream — no change.
itsnotsupposedtohurtRe: Lidocaine — The lidocaine based in crisco was great, the cotton ball trick was horrid; it picked up moisture and abraded me, and gave me a fungal infection
scRe: Discharge - with no infection — I have had a discharge for as long as i can remember as do most other girls i talk to. Unfortunatley all magazines, etc..make it sound like something is wrong with you if you do. I have found that not to be true, but very normal in talking to other women.
scRe: Sensitivity to cold — i am cold almost all of the time. sleep with an extra blanket on the bed even in summer and i live in florida. sleeping with socks on helps. I am of slight build, don't know if that makes a difference or not.
scRe: Headaches — almost every month around my period i have severe headaches that can last anywhere from one to three days. i have been diagnosed with migraines and have had bad headaches about as long as i can remember. my mother, my brother and my daughter also sufer with severe headaches
no.help.in.atlantaRe: Irritable Bowel Syndrome — I had this symptom for a couple of months, but it has recently subsided.
capri1Re: Menstrual period — I have more pain and burning before I get my period. Sometimes it continues to during which I think may be a result of the organic pads I use irritating the area
capri1Re: Acidic urine — I have a lot of burning with urination. The only thing that helps is if I drink TONS of water, diluting the urine.
capri1Re: Birth control pills — Not sure if this "caused" my vulvodynia. I had been on the pill for 8 years and just went off the pill about 7 months ago. I have not noticed any difference in my pain level unfortunately. I thought perhaps it would increase my sex drive, which it did for the month after stopping and has gone back to little to nothing of a sex drive currently.
capri1Re: Tight jeans/clothes — Tight jeans, nylons or tights are terrible. If I don't have pain the morning, guaranteed by afternoon I will have pain. I stay away from tight clothes
capri1Re: Bacterial infection — My first and only BV caused my vulvodynia, or at least that is what I believe. After being on antibiotics, nothing went back to normal. Plus, I had been on several antibiotics even as a child for bladder infections.
capri1Re: Antibiotics — My vulvodynia started after a bacterial infection and dosages of antibiotics. After the antibiotics, my vulva region never went back to normal. Now, after four years, I stil experience constant buring and painful sex.
tashaRe: Anti-fungal creams — Have to be careful not to let the creams near the labia or vaginal entrance, or will result in yeast infections. Often it's easy to misdiagnose fungal for dermatitis skin infections (and vice versa), and it's painful applying the wrong cream by mistake!
tashaRe: Tampons — I have to use the Lidocaine 2% gel if I'm too raw. Have to use tampons as pads result in moisture, which then results dermatitis or fungal infections on the skin around the vagina. So frustrating!
tashaRe: Birth control pills — I've just come off the pill, after being on it for 8 years (4 of them continuously). My symptoms started about 2-3 years after starting the pill, and was having normal pain free sexual intercourse before that. The symptoms gradually intensified. From what I've read, sometimes it can take a at least 3 months for your hormones to return to their natural state, so I really hope this will make a difference to my symptoms.
tashaRe: Stress — Stress and a low immune system definitely aggravate my symptoms if I have any at the time. Not the cause for me, as I have symptoms even when I have no stress.
MagentaRe: Tampons — Cannot use these, even the skinny kind. Bummer, as pads irritate me a lot too, though I use the organic cotton type.
MagentaRe: Ovulation — I feel between a rock & a hard place, because hormonal meds made vulvodynia worse, but ovulation and menstruation also do, along with sever cramping at both times.
MagentaRe: Stress — Not a cause, but an aggravating factor to be sure.
MagentaRe: Bacterial infection — I haven't had one in years, but a few times I had BV for no apparent reason & the treatment triggered problems. The creams burn and the oral antibiotics have bad side effects (GI, headaches, some can cause yeast)
MagentaRe: Genetic — I believe there is something genetic - I don't know if my mother or other female relatives ever had vulvodynia, but Mom had terrible periods, and my maternal uncle has fibro, as I do as well.
MagentaRe: Underlying skin sensitivity/allergies — I also have skin problems on other areas - on my hands and eyelids are currently the worst besides this.
MagentaRe: Steroid cream — Like a couple of the ladies who posted, I also had very bad rebound from this. I was given the stuff over a couple of decades for dermatitis of the area, and ended up "addicted" as it would be the only thing to relieve the itch when I flared. The flares kept going, & eventually I heard about steroid rebound and haven't touched the stuff since last May. I am still peeling and erupting, but I made the right choice and it will be much better eventually, I am told.
MagentaRe: Discontinue hormones — For many years I took oral contraceptive hormones and/or oral progesterone, estrogen patches, etc. to treat problem periods. During that time the periods got even worse and so did my vulvodynia. Finally, a year ago, I stopped and my pain has eased noticeably.
MagentaRe: Anti-fungals — The oral medicine would be 'no effect' except the two times I did have an infection (as opposed the doctors were just clueless) from antibiotics. The creams made it worse, much worse.
MagentaRe: Application of ice — My worst symptom now (other than my periods) is inflammation and vulvar dermatitis which causes intense itching, so there are nights where I have to bring a bag of frozen peas to bed to get any sleep.
MagentaRe: Acupuncture — I tried this a few years ago - I would get a few days where I felt better, and then the symptoms would return. I discontinued because not only were the effects not lasting, but I would have muscle spasms and pain when they inserted the needles as well. The herbs that were prescribed made me sick, as well.
MagentaRe: Antibiotics — I have to elaborate here - generally antibiotics haven't affected this, but Flagyl made it much worse, and I believe it kicked off the IBS as well
MagentaRe: Pain — I still have pain in the area, but since going off of hormonal treatment (Seasonique) which was treating my periods, I no longer have the degree of pain I once did. At worst, the continual pain was 4-5, now much lower. I can wear jeans again, but pelvic exams are still horrible
Holly86Re: Sensitivity to cold — i dont know if this goes for anyone else but i am always cold especially my feet, i can never get them warm.
BecRe: Acupuncture — Costly and unfortuatenly did absolutely nothing for me.
BecRe: Lidocaine — My doc prescribed lidocaine compounded with crisco :) I am to use it all the time to eventually desensitize the nerve endings. It was irritating at first even with the crisco. I am using it randomly so I have not seen any results. I tend not to use it when I am feeling OK. I really need to be diligent about using to see if I see a result. I am somewhat resistant to using topical things as I am afraid it will make everything worse.
KMGRe: Ovulation — Ovulation is the turning point for me between the better half of the month and the worse half
KMGRe: Stress — I think my chronic stress aggravates, possibly caused, most of my symptoms of an inflammatory nature, of which vulvodynia is just one.
KMGRe: Injury — The first episode began directly after a night (and I mean about 8 hours straight) with my new boyfriend. I think I really was injured afterward, though it was the last thing on my mind at the time
KMGRe: Strep B — I had a stool test done for candida, and there was none. However it did show very high levels of Strep B, and very low levels of "good" bacteria. Knowing how the gut can affect the vaginal area, I wonder. I have no way of knowing, but I wonder.
KMGRe: Identify/avoid allergens — Avoiding carbs, soy, and anything that upsets my digestive tract makes the biggest difference of anything I've tried. I doubt it's really an allergy, probably more like an intolerance. But it's a VERY restricted diet. Worth it, though.
KMGRe: "Clitoral distraction" with a vibrator or by hand — Very useful during sex, especially if used before penetration, too
sabisbarRe: B vitamins — Every time I've tried higher doses of B vitamins, I've gotten a bladder infection. I stay away from anything over a 100% daily requirement.
sabisbarRe: Vitamin E — I've never actually used Vitamin E, but any time I've tried an "organic" or "natural" oil, I've gotten a bladder infection.
sabisbarRe: Irritable Bowel Syndrome — Discovered by accident that it was the Zoloft I was taking as part of the vulvodynia treatment that was causing the IBS.
sabisbarRe: Coconut oil as a lubricant — Gave me a bladder infection!
hollyleafRe: Acupuncture — Acupuncture opened up some areas blocked from a car accident, but started a new pain area. Ciatica done my right leg. I have uterine fibroids that press on nerves I think. I was beginning to get some limited relief following my appointments, but ran out of money. Sigh...
hollyleafRe: Application of ice — When I'm a 8-10 pain level I live on ice, because its unbearable. I found out your supposed to use it only 20 minutes at a time or you can damage the tissue. So I may have made it worse. I especially have to use it a night, because the laying position is more painful
hollyleafRe: Low oxalate diet — I tried this 2 different times once on my own & then to please the drs. It didn't do anything, so I asked for a urine oxalate test. It was neg, so I stopped. Now I'm on a low acid diet. Hoping this will help!!
hollyleafRe: Transcutaneous Electrical Nerve Stimulation (TENS) — The Tens helped the most at first with electrodes in the crease of the butt & on the back. The problem is they don't stick well & fall off, especially on the butt where they help the most. I need pain relief the most to be able to walk & the TENS works better sitting still If I only use it on the back which sticks better, it just diverts my brain for a while,but doesn't help the actual pain. Now I have to decide if I should pay for it, since its not covered by my insurance.
hollyleafRe: Trigger point therapy — I did trigger point for the bladder that refers my pain. I have to use ice afterwards. It hurts all day then, so I don't know if there is any long term benefit??
hollyleafRe: Gabapentin (Neurontin) — I said yes to this because i tried Lyrica (similar) It first knocked me out, then vomited for days. each level up got worse, headaches nausea, dizziness, foggy brain. feeling insane. at 4 weeks I had a 15 minute break from pain. The Dr upped my dose & I felt like my body was being beat up &was so depressed, almost suicidal. Got off with terrible withdrawal that was worse the the side effects. I can't think of trying any more meds!!
hollyleafRe: Amitriptyline — Tried this in vaginal cream & was like a drunk. Got a little sleep, though couldn't stay awake during the day either. Cut my dose down, so then I was only constipated, had difficulty holding conversations, thinking, gained weight & was extremely depressed. Held out for 7-8 weeks to give it a chance. Didn't do a think except make my entire summer a nightmare.
hollyleafRe: Exercise — An add on to my previous. I'm in pain just standing & walking. Shopping or going anywhere with friends is grueling. I only do dancing at home in skit or nightgown, no underwear.
hollyleafRe: Exercise — When I get the courage & energy to start I can dance, with no underwear of course. I'm in pain to start, but it gets to a point my pain is barely there. It comes right back when I stop. I think its endorphines.
hollyleafRe: No underwear — Its better in the summer towear dresses with no underwear, but hard in the winter. Istay in my nightgown & robe all day when I can. It keeps the pain at a lower level, but as soon as i put on underwear it hurts so bad I cry. I hate underwear & pants!!!
hollyleafRe: Detoxification/Fasting — Did a medical detox with supplements & diet. started getting a little improvement till I added some foods & walked too much ( aggravates pain) I also did a foot bath machine which got a lot of brown/green garbage out of me. So I think it helped with getting chemicals out. But then Iadded some drugs for pain & undid it.
hollyleafRe: Antihistamines — I tried it a for a month to get some sleep. I was only getting 20 -30 minutes at a time up to 2 hrs a night. It gave me 4-5 hrs sleep, but groggy during the day & then began making me depressed. Was hoping extra sleep might help the pain too.
hollyleafRe: E2/E3 Bioidentical Hormones — This has made the vaginal tissue moist, but not the pubic hairs. So it is better for sex, but not for clothes rubbing the hairs. Its like a thousand little needle.
hollyleafRe: Acupuncture — It helped open up channels blocked from a car accident. It started sciatic pain down my right leg. This was a yr ago, so now I have that symptom too. I think it is connected to pressed nerves. I also have uterine fibroids pressing on muscles, bladder etc. It was beginning to give me some relief when I left my treatments for a while, but ran out of money.
hollyleafRe: Physical Therapy — My Pt listened well % was helpful in letting me know what wasn't wrong, but seemed to have more experience with vaginal pain. Mine is vulva. Did vaginal stretches & bladder triggerpoints that didn't help pain. But ultrasound helped lower the pain for hrs, maybe the rest of the day. My time is used up in PT now, so no more relief.. Doing the stretches, trigger points & kegels at home seem to make my pain worse all day. So I don't know what to do now?? Just do it off & on.
hollyleafRe: Steroid cream — Steroid creams were part of the beginning of all this for me. I found out they all have alcohol & citric acid in their base which burns like hell. What are these drs thinking???
hollyleafRe: Lidocaine — First cream did nothing,kept waiting for it to work. Now mixed with cromyln for allergy hurts worse fro 20-30 minutes , than settles down. Can't tell if it lowers much or for long,because you can only use it a couple times a day. It would be nice to use it all day & really see. But I'll keep trying because of the allergy part.
hollyleafRe: DHEA — Picked up my sex drive at 53. It wasn't worth trying sex with the burning. Crazy with all this pain to feel like a newly wed. Makes me more lovable.. Supposed to balance hormones.
Didn't help pain, but doing kegels that push oxygen into the pelvic area first & using my husband to do it on has made sex enjoyable again. The dhea helped motivate me to find what works.
hollyleafRe: Emu oil — Good for lasting moisture, unlike whats sold t=for women with chemicals that burn more. Get 100% only.
hollyleafRe: Calendula cream — My own compounds without over the counter additives helps heal the increased pain from the topical chemicals that drs have given me.
hollyleafRe: Identify/avoid allergens — Still working on these to see if it will help. Can't hardly eat anything, but still hoping for a break through. Gaining weight from eating all this rice stuff & no coffee for appetite control or energy.
hollyleafRe: Chiropractic — It helped find find referral points, but not with pain. Had to stop when out of money.
dgordonRe: Burning — I was diagnosed with vulvodynia at the age of 23. I saw at least 100 doctors for this condition. I had at least 15 surgeries for this condition from 1987 to 1995. The end result of all of these surgeries was that the pain moved from the outside on the vulva area to the inside of my vaginia. The pain inside the vaginia was so bad that I had to take large amounts of narcotics.
In 2007, I began to develop bladder symptoms such as pain in the urethra and constant pressure in my bladder. I saw a urologist at the University of SanDiego ( Dr. Lowell Parsons) who specializes in Interstitial Cystitus in February 2008. I was diagnosed with Interstitial Cystitus. Since I have been treating my bladder for this disease, the bladder symptoms have disappeared and the vaginial pain is so much better that I no longer have to take narcotics for pain.
My problem has always been Interstitial Cystitus. This disease can cause referred pain in the vulvar area and vaginia. I believe that many Vulvodynia suffers suffer from Interstitial Cystitus and by sucessfully treating your bladder, the vulvar pain will go away. I did not experience bladder symptoms for 23 years with this condition. Therefore, I believe that many women who believe that they have vulvodynia really have Interstitial Cystitus.
zallersRe: Undetectable microbe infection — All the tests usually come back negative, but then it varies from doctor to doctor and depends on test type. I noticed when I took antibiotics after giving up on other treatments again, the pain completely went away just while I was on the antibiotic (even though I supposedly didn't have an infection). The very next day without the antibiotic, the pain came back even stronger. Not sure if the antibiotic was really putting some kind of undetectable infection into remission or just affecting another pain/problem pathway (i.e. blocking nerve sensativity, interacting molecularly elsewhere in the body). I was so desperate, I considered buying my own lab equipment and running a more sensative culture/tests myself.
zallersRe: Feels likes UTI, but tests negative — Antibiotics to treat what felt like a UTI made worse too
zallersRe: "Clitoral distraction" with a vibrator or by hand — Sort of helps (more as a distraction) for a few minutes, but in the end didn't seem to make the pain any better/worse.
zallersRe: Susceptible to infections and colds — This category and first review refers to a kind of Vulvodynia that may be auto-immune related.
Holly86Re: Susceptible to infections and colds — whatevers going about i am sure to catch it, im always getting ill since haing vulvodynia
em0677Re: Underlying skin sensitivity/allergies — After being diagnosed with Vestibulodynia and treated for it and chronic yeast I was later diagnosed with lichen sclerosis or lichen planus. By the time the dermatologist came to check I was already being treated and had improved significantly. I don't know which came first but this diagnosis came years after.
em0677Re: Anti-fungals — I'm taking Diflucan twice a week. Despite the fact that all my tests come back "normal" taking it makes a huge difference, particularly when I'm having intercourse (not in a relationship right now).
em0677Re: Lidocaine — This one burned initially. That's why I got another kind from a compounding pharmacy that worked well.
em0677Re: Lidocaine — The first formula I had burned when initially applied. Second one was good. Think that was from a compounding pharmacy, but I don't remember because I'm not using it anymore.
Holly86Re: Irritable Bowel Syndrome — The ibs seems to make my vulvodynia worse at times. Im sure the vulvodynia brought on the ibs
Holly86Re: Chronic yeast infections — mine started from a bad water infection and have also had BV
Holly86Re: Birth control pills — I have also come of the pill for a couple of months but does not make any difference
Holly86Re: Stinging — My problems seemed to start with a really painful water infection. I was treated for the infecion but was left with this awful stinging after urinating, use to make me feel sick! Ever since the stinging does not happen too severly but i tend to get a lot of aching around the whole area. Also occasional stabbing pains and throbbing. This has been going on for 2 years. So sick of it!
no.help.in.atlantaRe: Vestibulectomy — My gyn said that doing this would cause me even more problems.
no.help.in.atlantaRe: Exercise — Can't do anything like this. How would I know? This is one of the most distressing parts of the burning and pain. Friction from walking, causes enough pain. Anything else would be excruciating. I've tried swimming but the chemicals in the pool cause the burning to be worse. I need to exercise because I have fibromyalgia but there's just no way I can.
no.help.in.atlantaRe: Anti-fungals — Caused more irritation.
no.help.in.atlantaRe: Physical Therapy — I get temporary relief from manual therapy on pelvic floor muscles. The longest length of time it has helped is about one week. I hope the longer in therapy the better the results. One thing for sure is that my physical therapist has been the most understanding and willing to listen to my symptoms than any of the drs. I've seen. I was referred to the PT by my gyn, but the gyn was not helpful in offering anything else besides the meds I was already on for fibromyalgia and back pain for 10 years before having this.
no.help.in.atlantaRe: Identify/avoid allergens — I have latex and gluten allergies but have had those for years. There may be some very mild association with eating a lot of gluten products. I don't know.
smarmorRe: Biofeedback — Nothing I have tried so far has helped. Would love to see a doctor more familiar with different therapies.
no.help.in.atlantaRe: Clitoral pain — This occurs in conjunction with a pain that feels as though my pubic symphasis is being split apart. One dr. told me that I just needed to have plastic surgery to the area to correct it!! Didn't go back to him.
no.help.in.atlantaRe: Shooting pain upward inside the vagina — This happens rarely but when it does, the pain doubles me over.
no.help.in.atlantaRe: Constant burning — The burning occurs without anything touching me or any movement at all. I sleep without undies and have to keep my legs separated by two pillows. I have tried putting firm pressure on the area through various means and that helps at times and at others it causes more pain.
no.help.in.atlantaRe: Pain when sitting — I can"t sit for any meaningful time at all. I have had to give up so many social situations because of this. Except for my closest two girlfriends I don't even try to explain and even they show some doubt at times. I can't go to movies, concerts, church or even a restaurant unless I can stand at a hi-top or at the bar. I can't go on any trips in car over 30 minutes. I can't do that unless I'm in the most comfortable pants I own. I have tried to "will" myself through all of these situations, but I always end up in worse shape than before. Since I've begun PT it helps for a few days before the pain returns. The longest relief has been a week, so far. I'm thankful for that and is the best tx I've found so far.
no.help.in.atlantaRe: Prickly feeling — I don't always have this symptom...it comes and goes with no obvious correlations.
no.help.in.atlantaRe: Labial swelling — Has been an issue for the entire time I have had this. I can't walk at a fast pace, certainly can run or get aerobic exercise, can't sit due to pain and can't wear any pants of any kind that are touching the labia.
no.help.in.atlantaRe: Hair-pulling feeling — Initially this wasn't an issue but, as PT has helped with other symptoms, this one has become more prominent.
IowaGirlRe: Constant burning — I can't even wear underwear anymore. THis came on a couple years ago out of the blue. I never had VV in the past. Treatments with antidepressant, anticonvulsants, physical therapy, aren't working. It seemed gabapentine worked temporarily. I was able to wear underwear for short periods like going out to movie etc. But it doesn't seem to be working. Having yeast infections definately make my symptoms worse. Lidocaine temporarily helps after I get over the burn I feel after application.
IowaGirlRe: Cramps after sex — this occurred when I still have my uterus. It was like being in labor so my doctor said. I never had a child.
TerriAllRe: Local anesthetic — Lidocaine 5% Helps a lot!
KittlesRe: Acidic urine — Occasionally it burns right after I have sex or take a shower--but otherwise urinating isn't painful at all.
KittlesRe: Contact (Ex: Sex, wiping) — Wiping doesn't hurt me, but sex? Yep!
KittlesRe: Tight jeans/clothes — I absolutely cannot wear tight pants or regular jeans. I must have spandex/stretch in them--won't buy anything that doesn't.
KittlesRe: Tampons — They do hurt when I insert them (5 seconds or so), but it's a quick pain and I can pretty much ignore it because of the convenience.
KittlesRe: Birth control pills — My VV was MUCH worse about ten years ago, when I was on a low-estrogen pill. I was on the pill for 18 years, and I've seen research that indicates that women on BCPs for more than three years have a much higher incidence of VV. I had pain from my first sexual experience, though, and that was several months before beginning the BCP at age 17. And now I'm *back* on the pill for HRT, sigh...
KittlesRe: "Clitoral distraction" with a vibrator or by hand — My lifesaver has been a back massager that I use on my clitoris during sex. Yes, it's awkward and kinda unsexy and sometimes literally gets in the way--thank goodness for a moderately understanding husband--but the throbs of the vibrator distract my body from the pain and make a huge difference for me. I can't imagine having sex without this, or with a lot of lubricant (we use Maximus, which is particularly thick).
KittlesRe: Calcium citrate — Did nothing for me, but I only have pain on contact anyway.
KittlesRe: Low oxalate diet — Did nothing for me, but I only have pain on contact anyway.
KittlesRe: Hormone Replacement Therapy (HRT) — I hit perimenopause early (around age 35) and needed HRT. I was strictly using bioidenticals until recently. I believe having the right amount/ratio of hormones has improved my VV.
KittlesRe: Testosterone cream — I use this in combination with Estrace and lidocaine and HRT, so it's hard to know what has caused the improvement.
KittlesRe: Selective Serotonin Re-uptake Inhibitor (SSRI) - Low Dose — I tried it for a few weeks, no improvement.
KittlesRe: E2/E3 Bioidentical Hormones — Like Alexandra, I hit perimenopause early, around age 35--after stopping birth control pills, which I'd been on since 17. I began taking HRT, was happy on Vivelle DOT and Climara Pro and believe my VV improved a little on them. But I've had to go back to a BCP because the estrogen levels in the Climara Pro were not enough to prevent hot flashes.
KittlesRe: Increase estrogen — Estrogen has helped me--topical and oral--though I'm by no means cured.
KittlesRe: Anti-depressant medication — I couldn't tell whether amitriptyline would help, because it knocked me out (sleepy). For a week I could barely get out of bed, and yet I gained 5 pounds, and I was a small person! I got off this immediately.
KittlesRe: Lidocaine — I use 5% on a cotton ball at night a couple times a week. It does sting me for 10-15 seconds, but I guess I'm used to it now.
I used to apply this before sex, but it numbed my partner and didn't seem to help me. I still felt raw after sex.
KittlesRe: Rinse with water after urination — I rinse after sex, rather than after every urination. (Rinsing after sex has almost eliminated my yeast infections.)
jsleatherburyRe: Give birth — Although I'm not entirely sure if this "cured" me, my vulvadynia and vestibuladynia were gone 6 months after the birth of my first child. It did take 6 months - I still had the same problems for those first six months. But I am thrilled to report that I am cured. I hope it never, ever comes back! I had it for 6 years.
KittlesRe: Lidocaine — My lidocaine is the pre-packaged kind (5%), though.
KittlesRe: Drinking large amounts of water — I had kidney stones a couple of years ago and have had to increase my water consumption dramatically to avoid a repeat. I've noticed no change in my VV.
KittlesRe: Pain when sitting — My pain level of four was at my worst, about a decade ago. I had to use a "doughnut pillow" to sit on bad days. Even now, I can't wear regular jeans/slacks--I must have spandex/stretch ones. I can (and do) sit all day at my computer now, though I wear comfy pants/sweats and keep my pubic hair trimmed so it doesn't catch in the hem of my undies. I've also been using Estrace/testosterone/Lidocaine for several years.
KittlesRe: Pain during sex — I'm able to have sex now only because of an understanding hubby and a back massager used on my clit. It vibrates my clit so strongly that it distracts me from the pain. I can't imagine risking sex without this "clitoral distraction" AND a really, really good and thick lubricant (we use Maximus). All of this, despite Estrace/testosterone/Lidocaine cotton ball treatment twice a week.
KittlesRe: Rawness — Especially after sex. Sometimes just from sitting. I avoid pants without spandex/stretch in them.
KittlesRe: Bleeding — Although I have early onset VV, I never bled from friction until I was in my late 20s. At that point, sex would abrade me, and even horseback riding (despite a sheepskin pad on top of my saddle). This was also a time in my life when I had difficult sitting for long periods of time. I now believe that hormones were a contributing factor--likely a birth control pill with hormonal amounts/ratios that were wrong for me. I began Estrace/testosterone/Lidocaine after this and changed BCPs, and I haven't bled since then.
KittlesRe: Hair-pulling feeling — I have to trim my pubic hair every couple of weeks, because when it gets longer than about half an inch, it gets caught in the elastic of my undies and it hurts. I assume it is part of my vulvar sensitivity, but I'm not sure. For the last few years I have also been using Estrace, testosterone, and Lidocaine a couple of times a week, and I think they have helped ease this as well, but a trim fixes the discomfort quickly.
jocasaRe: Anti-fungal creams — For about a week after treatment, my vagina burns even without contact.
jocasaRe: Not getting correct vitamin intake — Adding vitamin supplements of b-complex, zinc, biotin, and selenium as well as probiotics has brought the ph of my vagina within a normal range. Since then, the pain during sex has been greatly diminished.
jocasaRe: Laser treatment for venereal warts — Shortly after I lost my viriginity, I contracted a sever case of venereal warts, all of which were inside the vagina so diagnosis came after a couple of months. Twenty-five years ago, the treatment was laser surgery from which I still carry scars, and I trace the origins of my problems to this.
jocasaRe: Estrace cream — Estrace itself burns, but I use a compounded formula that works great.
BedeliaRe: Application of ice — Too hot and too cold seem to be triggers for my pain.
ZuluRe: Increase estrogen — After taking HRT for ~ 10 years, I got breast cancer.
The HRT helped my vaginal tissue stay healthier, but didn't help my pain.
SISRe: Burning — It started about 15 years ago and has constantly gotten worse as time goes by. Several doctors acted as though it wasn't there because they couldn't find anything in the lab. I was also told at one time that it was herpes but then it was recinded.
ZuluRe: Prelief tablets — Works great for bladdar symptoms
BedeliaRe: Burning — Burning, stinging, raw, all sort of go together for me. It used to be in the vestibular area and now it is external as well.
BedeliaRe: Stinging — I have external stinging quite frequently after uninating
BedeliaRe: Rawness — Rug burn is the description that best describes my pain.
BedeliaRe: Redness/inflammation — I think I feel more red and inflamed than I actually look.
BedeliaRe: Pain — I have had vulvodynia for 4 years, I have seen 19 health care professionals, I am 57 years old and sometimes you just have to cry. I have both physical pain and emotional pain.
booRe: Anti-depressant medication — Was on Effexor XR for 2 months - no improvement. Side effects - constipation and nightmares - ugh! Just started amitryptaline - hoping for improvement!
BedeliaRe: Generalized pain in vaginal area (contact or not) — I lie on my futon to keep the pressure off my vulva but then out of nowhere the pain can start without as much as a change of position. I do attribute this to nerve pain.
booRe: Labial swelling — sometimes it is difficult to run on a treadmill due to the discomfort, sometimes I can't wear my jeans...
BedeliaRe: Pain during sex — No sex in this household.
BedeliaRe: Constant burning — I can take a tepid soak and apply Lidocaine cream to relieve the burn.
BedeliaRe: Pain when sitting — Pressure seems to worsen my pain (blue jeans). A futon tips my pelvis so that I am able to sit for several hours.
jocasaRe: Anti-fungals — Removes infection, but causes more irritation and burning for about a week after use.
jocasaRe: B vitamins — B-complex plus selenium, biotin, and zinc has lowered the ph of my vagina and this has helped tremendously.
BedeliaRe: Headaches — I have had severe menstrual migraine headaches since I was a child.
jocasaRe: Burning — Sometimes when I wear pants.
jocasaRe: Rawness — In the past, before estrogen cream, I would often feel raw after sex.
jocasaRe: Itch — I itch every day, with or without the use of the estrogen cream. I have a history of yeast infections and bv, but am currently infection free and still itch. I have tried a variety of soaps to see if I'm allergic, but it doesn't seem to matter.
jocasaRe: Bleeding — When I was younger, I would crack open and bleed a small amount every time I had sex. Now, it rarely occurs.
jocasaRe: Pain only on contact — Touching certain spots in the vestibule area hurts, and after sex, if I haven't been using my estrogen cream regulary or been faithfully taking my vitamins, I can be sore until the next day. Sometimes, though, even though I can still touch certain spots which hurt, sex won't overall.
jocasaRe: Pain during sex — Until five years ago, sex was painful at all times to some degree. Then I discovered estrogen cream which works as long as I use it regularly. The addition of a certain combination of vitamins has lowed my vaginal ph to within normal limits as well, and I can sometimes enjoy painfree sex. When sex does hurt, my current boyfriend is adaptable and will either work with me to find a more comfortable position or stop entirely.
IowaGirlRe: Gabapentin (Neurontin) — It seemed to work for awhile. I could finally wear underwear but it's not doing so great now.
jocasaRe: Dripping feeling — I frequently have discharge. Up until 18 months ago, I had repeated yeast infections. Then, I started in on repeated bouts of BV, but now the discharge is present without any clinical infection.
ElyiarRe: Lidocaine — the 5% burned terribly - my doc said because it was alcohol based. So he gave me a 2% water based - but that doesn't seem to do anything at all.
Holly86Re: Dull aching sensation — I have suffered with this problem for over two years now. I ended up diagnosing myself after multiple docs and hosp visits. Currently trying some dif medication but am yet to find anything to releave help or cure this condition.
juniperRe: Chemotherapy — Hmmm...I was given injections of Methotrexate (spell ?) to terminate an ectopic pregnancy that would have killed me. Problems got worse after that. It could be grief/hormones (started taking Clomid to conceive again)--I never considered this drug that, from what I understand, is given to chemo patients.
juniperRe: Burning — I have been going bonkers for quite some time now. It all started when I was younger--maybe 6/7 years ago when I felt a burning sensation like I had to pee all the time. I went to several doctors--I've never tested positive for a bladder infection ever. Then, I'd start to get the burning feeling around my vulva and at the entrance of my vagina. So annoying! I was treated with rounds and rounds of yeast infection treatments as well as bacterial infection treatments--even though the tests didn't look like I had an infection, I never had discharge, and never had any strange odor.
Lately I went for a 2/3 month streak of the burning. I asked a friend who's a doctor what he thought--he sent me to a family practitioner who tested me, said there was nothing wrong, and that I should find another doctor.
I have been given "looks" by 3 different gynecologists, been to a urologist, and talked to 2 family doctors. I thought I was going mad--so I started doing research on the Internet. I had never heard the term vulvodynia before two days ago.
I have a burning sensation all the time, I will wake up in the middle of the night with it, and it is getting in the way of my sex life.
I'm perfectly willing to entertain the psycho dynamic/hormone imbalance possibilities also. I've had a long history of reproductive issues including being put on the pill at 15 because my testosterone levels were high, having an ectopic pregnancy and having to have it terminated--much to my husband and my anguish--having fertility treatments (taking Clomid)--and having an ovarian cyst removed as well as some endometriosis (spell?). I want children badly--we're trying to adopt. Is that my problem?
Anyway, I would love to figure out the friggin' problem. I'm looking into the diet thing--Acid/Alkiline etc.
I am so thankful for the Internet and all these blogs--at least I don't feel crazy anymore, and maybe we can all help each other
Re: Strep B — i heard that in some women it can cause no symptoms but in others it can cause ours!! worth taking a look at.. i think i will!!
Re: Calendula cream — i no this is posed 2 b natural but it did sting me quite a bit that i had 2 wash it off.. vaseline works best 2 protect the skin
pchicago91Re: Lidocaine — worked for me, no burning experience-thank God!
pchicago91Re: Pain during sex — my doc prescribed cream to apply to area prior to sex...it works. Inconvenient but a healthy sex life is important to me so I'm will to take time to apply cream, let it set and then have sex. Cream is called Lidocaine Ointments USP, 5%
NicoletteRe: Steroid cream — a sigmacort 1% applied when I can no longer handle the burning reduces my symptoms, but it does thin my skin as I have used it for many years on and off. But at this point in time its the only thing that has helped.
NicoletteRe: Tampons — even from a young age (before full blown symptoms emerged)have never been use them pain free
NicoletteRe: Bacterial infection — have always suffered from thursh/candida
NicoletteRe: Injury — sexual intercoarse def sets the contidion of worse, I believe I have had the condition most of my life but when I was younger it was only short periods of time that I had the symptoms. However after getting married and engaging in continual sexual activities the symptoms became continual and chronic
NicoletteRe: Genetic — my mother also beleives she experienced for a short period of time around the same age as me. Some of my mums sister also say they have experienced this condition but only for short periods of time.
NicoletteRe: Underlying skin sensitivity/allergies — I have never been diagnosed with any skin disorders but I firmly beleive I have some sort of excema/ dermatis. As I have skin disorders on my scalp and hands, and when my pain/burning in my vulva area is bad I can see a skin change, however when I have been to a dermatologist they cannot see it or its not there.
marit_pkRe: Biofeedback — A useful component of physical therapy. No need to insert anything. Don't get the electrodes wet & you may need to manage your pubic hair for best results (if the electrodes get wet or stuck to your hair it can throw the readings off)
marit_pkRe: Pelvic floor exercise — There's 2 good books about this on Amazon now - "Heal Pelvic Pain" & "Pelvic Power," if you're interested
marit_pkRe: Vestibulectomy — Had it done 2 years ago & I feel much better now, but physical therapy was required to address the muscular component afterward - the nice thing is PT also addressed the residual minor vestibulitis that remained after surgery too. The residual wasn't much though so mostly it's for the muscular.
marit_pkRe: Acupuncture — Doesn't work so well on vestibulitis but seems do so something for a broader pelvic pain
marit_pkRe: Physical Therapy — I feel so much better now - I also got a vestibulectomy BEFORE starting PT so that makes PT itself more tolerable.
marit_pkRe: Itch — This is now under control & came under control after using topical estrogen & going off birth control pills
marit_pkRe: Nerve-like pain — This also improved with physical therapy & some massage - tingling sensation ran down my left leg all the way to my ankle.
It's not there right now.
marit_pkRe: Buzzing sensation like vibrations in pelvic area — This also improved with physical therapy
marit_pkRe: Pain when sitting — I feel much better now that I've started physical therapy.
nobblybumRe: No underwear — its good when Im having a really bad day but only relieves the sypmtoms, definately not a cure
nobblybumRe: Anti-fungals — I blame antifungal cream as one of the major contributors to my condition, i was continually prescribed them over a long period of time (due to Dr's incompetance) which caused a major skin reaction
nobblybumRe: Steroid cream — was one of the worst things i used on my vulva, caused a rash and i believe permanent skin damage
nobblybumRe: Emu oil — I did get some relief from this and it helped as a lubricant for sex but I stopped using it after I heard it could actually be quite bad for you if absorbed through the skin over a long period of time. I now use organic rosehip oil which is messy but works well and doesn't irritate
akprincess72Re: Menstrual period — burns more/worse than normal during.
akprincess72Re: Soap — Doesn't cause it, but doesn't help either.
akprincess72Re: Tampons — never used them, too painful!
akprincess72Re: Water contact — the only thing that doesn't really sting
akprincess72Re: Lidocaine — even the buffered lidocaine stings!
akprincess72Re: Bacterial infection — wish I had a 'maybe' button here...
akprincess72Re: Genetic — My mother has some symptoms as well.
akprincess72Re: Injury — I was a virgin when I married the 1st time & got it a yr into the marriage. There wasn't too much 'use' in my case.
akprincess72Re: Prelief tablets — I'd really give it 4.5 out of 5, but it noticeably helps. Mr Dr recommended it, it takes the excess acid out & this helps calm my flare-ups. I have IC also & my whole world is happier when less acidic urine is what contacts my sensitive skin!
akprincess72Re: Dry off from excess moisture — Helps with my chronic yeast... don't know if it helps my VV, but doesn't seem to be hurting.
akprincess72Re: Vestibulectomy — I had it in 93, it helped though the recuperation was difficult. It has been suggested a 2nd time, we'll see, not deciding yet. It was nice to have a full ten 'normal' years though!!!
akprincess72Re: Low oxalate diet — Certain foods give me a requisite & timely response, never good of course... I avoid the ones I can & take Prelief if I know I am eating something that could cause a flare up.
akprincess72Re: Application of ice — As said by others, okay for bad attacks, I just use it when I really need to & there isn't any other option!
akprincess72Re: Increase estrogen — Estrogen & I do NOT play well together...
akprincess72Re: Anti-depressant medication — Just started amitriptyline yesterday, hoping it helps!
Cara_RougeRe: Soap — soaps or other bath products (shampoo / conditioner / etc) with oat protein, almond oil or avocado oil - anything I'm orally allergic to - will make the pain worse.
akprincess72Re: Rinse with water after urination — Helped soothe the stinging
Cara_RougeRe: Food allergies — Almonds makes it worse.
Cara_RougeRe: Identify/avoid allergens — I have lots of allergies and am 99% sure that my sudden onset vestibulitis was caused due to an allergy to a homemade soap I was gifted 4 years ago - it was made with oats. Even though the rest of me didn't react to the soap my vaginal skin definitely did, even though I didn't realize that was the cause of the pain 4 years ago. I recently tried the soap again and the pain came back immediatly, even worse than before, so I've found the root cause of the original pain.
I now check all shower and bath products I buy to make sure none of them have anything in them that I am even slightly allergic too - Oat/Avocado/Almond etc - as those items will only enhance the pain if I use them and any treatment I'm currently trying will be rendered useless.
Cara_RougeRe: Gabapentin (Neurontin) — I've only tried this as a compound cream - didn't even consider taking it orally, hadn't even heard of taking it orally for this. As a compound it didn't do much for me though even though it's gotten good results for others.
Cara_RougeRe: Amitriptyline — Taking it orally definitely helped (oh the tears of joy during sex!) but the side effects were awful. My GP had it made into a compound cream for me and it seems to be helping quite a bit, slower than taking it orally but I don't get any side effects!
Cara_RougeRe: Anti-depressant medication — Amitriptyline worked wonders orally but I got all the nasty side effects so my GP had it compounded into a cream which has been great as well. The process is slower but I think it's working.
Cara_RougeRe: Physical Therapy — MY physiotherapist showed me ways to monitor the pain and to understand where it was coming from. Was a great help mentally to have someone explain it and physically help me towards understanding and hopefully fixing the problem.
Cara_RougeRe: Premarin — It could have lessened the pain but I couldn't tell as it was prescribed for another condition - Lichens Schlerosis - which is definitely helped with.
Cara_RougeRe: B vitamins — I get monthly B12 injections andn take multivitamins daily, haven't noticed if it's affected anything though.
Cara_RougeRe: Burning — only after sex.
Cara_RougeRe: Stinging — only after sex.
Cara_RougeRe: Rawness — only after sex.
Cara_RougeRe: Redness/inflammation — only after sex.
Cara_RougeRe: Tearing/ripping feeling — During sex it feels like my skin is tearing off with each inward thrust.
Cara_RougeRe: Pain only on contact — same as zallers comment but the pain worsens depending on length of contact, the longer the pressure the more excruciating the pain.
Cara_RougeRe: Pain during sex — Using a vibrator barely causes any pain, only having penis in vagina sex does. Likely because with a vibrator the pressure is moreso at the forward / clit side whereas during sex there is more pressure on the back / anal side which is where my pain is located.
Cara_RougeRe: Dripping feeling — Sudden gushes of fluid, no pain involved though, just a gush of fairly aroma-less white creamy stuff.
RoxiRe: Burning — I have had constant and unrelenting pain in the vestibule as well as the clitoral hood, and the vulva. The pain is unbearable at times, and brings me to tears with the burning, stabbing, tearing, and throbbing sensations. I have an incredible doctor, very understanding, who has placed me on neurontin (gabapentin) after trying everything from lidocaine on cotton balls, interferon shots, topical steroids, calendulla cream, baking soda sitz baths, to boric acid, and even manual pelvic floor disfunction therapy. I developed these symptoms after breaking my pelvic bone in a car accident while pregnant with twins. That was a year ago, and I still have not found relief. I have not and can not even bear the thought of attempting sex, as I cannot even wipe the area after urinating without tears.
hmboydRe: Low oxalate diet — Before looking over high oxalate foods I would have horrible "pain days" randomly and after reviewing the lists at those times I found that a specific item on that list was related to all the "pain days" (green tea) i have not drank it since and no excruciating pain days!
hmboydRe: Botox injections — the botox injection helped a lot with the pelvic floor muscles (pelvic floor myalgia)
lucymolly18Re: Burning — I only have serious problems with sex or paps. So far my very limited sex life has been the most painful thing I have yet to experience. There aren't really words to describe this pain, especially since it's supposed to be wonderful I am currently working with a doctor to help figure things out, but I agree with cdhen they are very quick to give you meds and that's all!
zallersRe: Genetic — I don't necessarily think there is a gene (or mutation) that causes vulvodynia directly, but perhaps one that pre-dispositions certain individuals that could be totally unrelated to V. For example: Bladder infections run in my family (and there are gene-expressed protein structures that allow the walls of the bladder to harbor bacteria better than others)... bladder infections could allow/lead to V in certain circumstances. Other predispositions could be more molecular like susceptibility to stress related hormone imbalances. Genetic factors could still be determined either way.
zallersRe: Injury — I checked Y, because I think this is a possibility even though I think there are other causes more likely. "Rough Sex" or lack of lubrication could cause a type of injury over time. I wondered if when I was younger and more adventurous that some kind of nerve pain could have built up and caused re-triggering even under ideal conditions. I know there is association research that shows pain upon first intercourse and down-the-road vulvodynia.
Sometimes I wish there was a "Maybe" checkbox as opposed to Y and N (Because I don't always know 100%)
scRe: No underwear — i agree that the underware acts as some protection, but they must be 100% cotton. i also change mine several times a day as necessary especially during hot weather
juliagooliaRe: Hair thinning — I think this is from my meds though -nortriptyline...
juliagooliaRe: Non-lubricated or aggressive sex — this would hurt most people... ak
juliagooliaRe: Acidic urine — DEFINITELY AFTER SEX - URINATION SUCKS
juliagooliaRe: Soap — the REN one I use has orange flower in it (I think it's that one -I think orange flower or grapefruit -it's soo mild though)
juliagooliaRe: Soap — i now use all sulfate free products (from shamp and cond. to body wash (REN -from Sephora) -it's making a difference!!
juliagooliaRe: Sitting — Definitely -sitting too long KILLS ME... I dread family dinners where we don't move to a sitting area -i.e. couch so i can scoop my pelvis underneath myself -> no pressure
juliagooliaRe: Birth control pills — I've been on and off of the pill and it doesn't seem to make a difference.
juliagooliaRe: Low oxalate diet — just made me miserable - i like food waaaaay too much -that and gave me tummy trouble... I find when i poop too much it just causes more flare ups for me
juliagooliaRe: No underwear — this does help but then your pants just start to cause the same problem... i def strip down when i get home and change my undies often -2/day -no thongs and def have to do cotton w/ no lining -they can't be tight
juliagooliaRe: Acupuncture — what's myofascial release therapy?
I was def more relaxed when I did this...
juliagooliaRe: Anti-depressant medication — Was on nortriptyline for over a year -am just getting off of it now... Was on amitriptyline -both didn't help much... I'm better off without them as the side effects made managing my pain worse
juliagooliaRe: Lidocaine — hey -itsnotsupposed to hurt - what do you mean you got it in a crisco base?
juliagooliaRe: Lidocaine — awful -burned like hell
Re: B vitamins — just started them.. 2 a day.. at this min i would try anything!! i cry myself 2 sleep most nights!
Re: Hair thinning — I have had vulvodynia for 5 yrs. now and although it doesn't controll my life I know its there. I am curently single and don't think I could have sex as my condition varies daily. After I shower I put a thin layer of vasoline,then clobetasol and estrace.I do this every other day...if I skip to many days I end up with a flair up. Sure wish this would go away !
ktrout30Re: Dry off from excess moisture — I use a hair dryer on the cool or warm setting to dry myself off down there after a shower or working out. Being dry and not touching anything has somewhat helped the severe pain.
ktrout30Re: No underwear — This helps me at night usually - give me a rest from the burning so sometimes I actually wake up feeling normal until I put on my underwear to go to work.
cdhenRe: Burning — I have my good days and bad days. I wish the doctors would do different tests like checking for changes in hormones , check for high levels of oxalates, etc. I feel like they are too quick to just give you medication. I don't feel like they take the time to really help you.
Re: Pain when sitting — I find that I can greatly reduce my overall pain by standing while working.
Re: Lanacane — improves instantly but wears off after a few hours.. can reapply straight away
Re: Emulisfying ointment — used as a soap subsitute can work well 4 part of the day.. not harsh at al!
Re: Antibiotics — i believe antibiotics cause this!! n only disguise problem
fansterRe: Low oxalate diet — did nothing for me, unfortunately
bellaestrellaRe: Anti-anxiety medication — Amitriptyline improved my condition with vestibulitis.
MaudyRe: Steroid cream — I ended up with an external yeast infection that ran down the back of my legs and no help with the symptoms.
MaudyRe: Lidocaine — I used it before intercourse. It made it so I didn't feel anything at the time but the three days I felt like I had been punched.
MaudyRe: Emu oil — I use it when I have itching or dryness.
MaudyRe: Itch — I itch if I sit for too long or wear certain fabrics. Due to my skin being sensative (all over) I do not take bubble baths so I am not soaking already irritated parts in soapy water.
MaudyRe: Pain only on contact — My pain is only on contact. When I get my pelvic exams I'm usually out of commision for the rest of the day because I'm in so much pain. Sex is the same way. I am able to wear pants and sit without any pain.
MaudyRe: Pain during sex — My husband and I have not had sex in over a year. The pain is so severe I usually burst into tears.
MaudyRe: Prickly feeling — Sometimes it feels like I have a pipe cleaner inside of me and I can't figure out how to get it out.
MaudyRe: Burning after contact with sperm — I thought at first that it was a reaction I was having to the sperm and KY jelly but now I'm realizing that it is just the sperm. Since I am also allergic to latex I have not found a cure for this.
itsnotsupposedtohurtRe: Lidocaine — try in crisco (or other neutral) base!
itsnotsupposedtohurtRe: Amitriptyline — Also loopy and freaked out - no pain relief.
itsnotsupposedtohurtRe: Vitamins/Nutritional supplements to restore health — Omega 3-6-9 oils - seem to help dramatically. But only sometimes.
itsnotsupposedtohurtRe: Antibiotics — I think too many antibiotics brought this on!
itsnotsupposedtohurtRe: Lidocaine — Burns like hell in standard bases; got a Lidocaine in Crisco base - saved my life.
itsnotsupposedtohurtRe: Rinse with water after urination — I think this helped. Maybe just reduces yeast infections?
sinatraRe: Physical Therapy — One way to find a specialized PT is to go to the APTA women's health web page for a list by region. It isn't a guarantee. As a PT who does do pelvic floor PT I sometimes get patients who have not had good experiences elsewhere. Go by your gut. If you call to make an appointment tell the secretary you will make an appointment AFTER you speak to the PT. If the PT won't make time for you or you get a bad feeling...don't go.
Usually vulvodynia is related to an overactive pelvic floor and kegal exercise can make it worse. If the PT assigns you kegals and tells you to keep doing them even if you feel a little uncomfortable....red flag.
marfaithRe: Buzzing sensation like vibrations in pelvic area — That is a good way to discribe the sensation in the abdomin that will also run down the leg.
DanaRe: Monostat / yeast creams — seems like after taking this i had severe burning and have had constant irritation ever since, now dr. are saying I have vulvadinia... when I've never had any problem before that. not sure if that was the cause but never been the same since.
janaRe: Gabapentin (Neurontin) — Controls itching and burning. I HATE taking medicine. It does make me a little woozy. I am a teacher and can't be off my game. I take it all at night. By the end of the day, it wears off, and the symptoms return. I am taking 800 mg./day. I had vestibulectomy 9 weeks ago. Dr. wants me to continue Gabapentin for at least 6 months. No weight gain.
janaRe: Vestibulectomy — I had the surgery nine weeks ago. I am just not sure, yet. This week, I have had the same symptoms- burning and itching. I am still taking neurotin. It helps to control the symptoms, but it helped prior to the surgery, too. I often see posts that state that it takes several months to see results, then I see posts reporting immediate results. I am very worried that my last resort did not work. I will post again.
pondwoodRe: Yeastguard suppositories — I've been using thses suppositories over 5 years now,,,they are made of Tea Tree Oil,(natural anit-fungal) 1 at bedtime for flare ups,
it's very soothing,,, it helps get you thru the bad times
pinkladyRe: Food allergies — I was diagnosed with food allergies & Lyme Disease in 2006, This was after years of suffering with what I thought was yeast infections I know it was Lyme Disease. The Vulvodynia is all but gone, unless I eat food that I should not. Lyme disease causes Vulvodynia
caraRe: Amitriptyline — I gained a lot of weight, and it made me tired all the time.
lianna_giselleRe: Trigger point therapy — I've had vulvodynia since 1985, though it became chronic in 1987. I saw at least a dozen different doctors, including "specialists" at university hospitals. Tried many different things, from using topical tea bags to applying cornstarch to Mycolog cream, then the low oxalate diet + citrate and other dietary manipulations. Antifungals and an anti-Candida diet and allergy desensitization program have helped tremendously, as has proper physical therapy. High oxalate foods can still cause flare-ups but it's easier now and I can cheat periodically. I tested out allergic to estrogen which probably explains the flare-ups with using it. Most herbs are irritating, as is anything highly acidic. Antihistamines help a great deal. Sex is tolerable and even pleasurable these days as long as things feel basically okay. Of course, my pain is more centered around the clitoris rather than the lower vestibule (upside-down). I haven't wanted to use antidepressants and supplements really didn't change anything. These days it's more about hormones (going through menopause), allergies, stress reduction, and keeping the pelvic floor muscles strong but relaxed.
Re: Steroid cream — steroid cream works well but after i stoped using it for a few days my redness and itch came right back....no matter what I do it always comes back....other wise I'm very healthy.
Re: Acupuncture — I go anyway but it doesn't seem to help..but it does help my lower back problems
Re: No underwear — It changes every day from week to week...I soak use estress and clobetasol and I put vasoline first... do this at least 4 to 5 times a week. It keeps it at bay but the second I go a few days without application it comes back and worse than before. I am healthy otherwise.
zallersRe: Dripping feeling — Discharge definitely made it worse in most cases. I considered measuring the pH for quite some time, but never had much luck. The reactionary pain may have had nothing to do with what was in the discharge itself, but perhaps just a reaction to a substance. The burning seemed to react to almost everything (water, even air at it's worst).
jonquilRe: Trimovate cream — Trimovate is a combined steroid, antibiotic and anti-fungal cream. Prescription only. Apply thinly twice a day. Can be used indefinitely if only a small amount is applied (pea-sized over whoole vulva) Worked for me!
jonquilRe: Dripping feeling — Heavy vaginal discharge that drips first thing in the morning as I get up - almost like effect of gravity!
McTwirlyRe: Stinging — I am considerably better, these ratings are "at my worst". There is no listing for the deep muscle pain (pelvic floor attached muscles) which I would rate minor but often present.
greenpantsRe: Gluten-free diet — Eliminating gluten made a major change in my overall pain. It used to burn all day every day and be very sensitive to movement, contact, urination, etc. Going gluten-free didn't cure me, but it did reduce my pain by maybe two-thirds overall.
greenpantsRe: Vicks Vaporub on feet — I do this when I have a really bad flare that's keeping me from sleeping. Often I'll have a low level of pain in the arches of my feet as well, and rubbing my feet with something tingly helps soothe my perception of the pain overall.
greenpantsRe: Nerve-like pain — I have pain in my feet too! In the arches of my feet. I think the nerves that go to the groin must end down in the feet. Sometimes I rub Vicks Vaporub on my FEET for relief (NOT on my vulva!).
zallersRe: Cleansing and de-sensitization — For vistibulitus (pain on contact in the corners), washing out in the shower with fingers (NO soap) hurt a little initially, but ultimately became less and less painful over 30 seconds and the rest of the day (possibly via de-sensitization).
zallersRe: Hormone Replacement Therapy (HRT) — I think it may/can be temporarily helpful, but permanently worse (unless on it forever) with possible side effects. In some cases, it can help balance the body enough to continue on it's own without HRT. My experience was only for a limited time.
DanaRe: Constant burning — I have had Vulvadinia for two years now and I've seen over 10 doctors now... I have had the constant burning and sometimes stinging some days better than others but no day is a normal day. It's just the degree of how bad it gets.... I recently went to see a new dermatologist in Santa Barbara 3 hrs from my home... and she prescribed anti - depressant for me and the burning for the most part has helped alot. I notice that when I am ovulating it seems to burn more.
RitaRe: Post-childbirth — I was sexually fine and my vulva was healthy until the birth of my second child. The trauma of a forceps delivery, vulva haematoma and then it abscessing 10 days later and needing further drainage all caused severe pain and nerve ending damage.
RitaRe: Pain worst before period — vulvodynia has changed my life, how I now have to live my life, and how I deal with my daily plans so it doesn't impact on my life tommorrow or next week. Pacing my daily activities is vital. That, and persistence in finding medical practitioners who are willing to help rather than ignore my pain...
aliRe: Olive oil as a natural lubricant — I suffered for many years with painful intercourse. I thought I had chronic yeast infections, which I treated with antifungals. It wasn't until I started taking celexa and singulair, that my symptoms started to improve. Now, I have very little pain, especially when I use olive oil for lubrication.
rothkoRe: Acupuncture — i'm a great believer in acupuncture, but so far i haven't found a practitioner who can deal with the problem. it works great for other problems i have, but i've never had any luck with it for the vulvodynia.
rothkoRe: DHEA — one of my various doctors' pet theories was that taking DHEA would make my body produce more androgens/testosterone and thereby improve my symptoms. didn't do a thing for me.
rothkoRe: Gabapentin (Neurontin) — this is a LIFESAVER for me. before i started taking it, i had a terrible generalized aching all over my pelvic region and down into my thighs. sitting was difficult because staying bent at the waist like that was too painful after a while. walking only made everything worse, and i didn't have a car at that time so i had to walk and take the subway everywhere -- daily life was awful. i've been on gabapentin now for at least six, maybe seven years, and i don't know what i'd do without it. it's made SO much difference for me. i'm currently taking 1600mg.
(of course, it does nothing for the vulvar vestibulitis, sigh...)
rothkoRe: Physical Therapy — had some very good results with this. it'd be even better if i were able to follow through on daily exercises -- but it really wears me out emotionally.
rothkoRe: Transcutaneous Electrical Nerve Stimulation (TENS) — this is the one thing that gave me the most improvement. it's definitely promising -- my problem is that i just can't stand plugging myself into the machine for an hour or two every single day on a purely emotional level. can i just have one day where i can ignore it all??
DanaRe: Ovulation — seems like when I'm ovulating the burning and stinging is more intense... even when taking the anti depressants.
DanaRe: Emu oil — helps a little with the dryness
DanaRe: Anti-depressant medication — After trying may ointments and creams I went to see a new dr. an she recommended Desipramine which I've been taking for almost 2 months and it has really made a differance in the burning and stinging feeling... It has not compeletly gone away but 3 weeks out of the month I have feel almost normal.
DanaRe: Steroid cream — I tried the steriod creams but didn't really do anything to help the irritation.
DanaRe: Desipramine (Norpramin) — I just started taking this for about two months now and I had the burning / raw / stinging feeling every day some days worse than others but with this medication it has helped a lot. I feel normal with no burning for most days but still have symtoms when ovulating.
DanaRe: Burning — Had what seemed like burning 24/7 but then went to see dr. and she prescribed an anti depressant medication and that has helped so much... I almost feel normal on some days.
tositagainRe: Application of ice — I use ice for the bad attacks. It helps to have no sensation for even 30 minutes. I'll take it!
tositagainRe: Low oxalate diet — Definitely helped. I'm not pain free, but eating high oxalate foods will spiral me into major attacks. it's definitely not the healthiest diet, though. You really have to be vigilant about including as many of the food groups as possible. If you were ever a spinach lover, kiss Popeye good bye forever. It has the highest ox content of anything!
tositagainRe: Calcium citrate — I've had some success with Calcium citrate, but I understand that it's critical when during the day you take it. The tests to determine that are very expensive ($800+) and insurance definitely doesn't cover it. Still, I think it might actually be worth it on my really painful days...
tositagainRe: Vitamins/Nutritional supplements to restore health — I take 1200 mg. of guafenesen daily along with 800 mg of calcium citrate (W/O vitamin D) and it has helped more than anything. Also, I eat a low oxalate diet, the same that kidney stone patients eat.
tositagainRe: Nerve-like pain — I've had that same sensation of pain in my feet at the same time I have vulvar pain! i just thought it was one more weird thing about me. There has to be some connection, though, right?
georginaRe: Anti-fungals — Did nothing for me
georginaRe: Calcium citrate — Did nothing for me
georginaRe: Amitriptyline — Did nothing for me
georginaRe: Lidocaine — Did nothing for me
georginaRe: Low oxalate diet — Did nothing for me
dusty02Re: Chronic yeast infections — I believe this is what set off my vvs. When you get a yeast infection, treat it seriously and get help fast! I also often got vaginosis (bacteria) infections after treating the yeast, and had to take lots of probiotics for that.
dusty02Re: Acupuncture — I had great success with acupuncture, esp. after I had 5 days of intense myofascial release PT. My pain relief lasted several months until my hormones changed due to pregnancy. Then acupuncuture (altho different practitioner) didn't help a bit. I feared it forever too...I do not like needles and often pass out when pricked! But, I did it and it WAS helpful for a time. It's just expensive and I have now moved on to a more permanent cure... vestibulectomy.
dusty02Re: Biofeedback — This is good stuff. It helped me for a time. Is great for any vaginismus tightening, which most of us have if we have pain there. There is a lot more to it than kegels. There are whole muscle groups that can be worked and also massaged. The mental factor is huge here too. Good training for relaxation of the vulva, whether for having sex, giving birth, or whatever.
dusty02Re: Amitriptyline — made me feel loopy, no pain relief.
dusty02Re: Gabapentin (Neurontin) — Just made me feel kind of high... no pain relief.
dusty02Re: Acupuncture — This worked awesome for me, esp. after 5 days of intensive myofascial release therapy. Until I got pregnant. :(
dusty02Re: No underwear — Can help with reducing risk of yeast infections, esp. during hot sweaty months or activities. But, cotton is also the best thing to have contact with.
dusty02Re: Myofascial release — Try the Clear Passage program if you are in, or can travel to, any of their four locations: NY, LA, Gainesville, or DeMoines.
dusty02Re: Anti-depressant medication — just made me feel loopy and didn't help pain at all.
dusty02Re: Vestibulectomy — Well, just had it done yesterday so am recovering and won't know true results for months, after some more PT. I've tried about everything else, and this surgery has high success rates. I have spent years and thousands of dollars and I was ready for a more permanent fix. I have 'provoked vestibulodynia.' Acutally, a bunch of manual PT through the Clear Passage program, with some acupuncture, got me going great, until I got pregnant and gave birth via c-section, then all the pain came back. Hence, the surgery route. This surgery is a piece of cake compared to a c-section!
glendaRe: Amitriptyline — nothing except weight gain
glendaRe: Gabapentin (Neurontin) — Did absolutely nothing for me except made me gain weight and the more depressed I got.
SunshineRe: Gabapentin (Neurontin) — I am taking Lyrica which is the same as Gabapentin. Have been on it for 8 mths and it's starting to fail me. Terrible terrible withdrawal symptions.
SunshineRe: Acupuncture — I too have tried accupuncture and it did not help in the least. The accupuncturist didn't even know anything about VV.
SunshineRe: Antibiotics — I too believe in taking antibiotics for the flare-ups. Whenever I'm on antibiotics I am pain free. I even told my doctor the same thing and he agrees to give me antibiotics when I'm at my worst pain. Weird eh? The best antibiotic that I've tried is Biaxin.
SunshineRe: Anti-depressant medication — I tried amitripyline and couldn't stay on in because of the severe constipation.
marfaithRe: Irritated uretha — When I started out with symtoms I thought I had a uti due to uretha pain.
marfaithRe: Nerve-like pain — I have an odd itchy sensation on the left side of my abdomin that runs down my left leg into my foot and my toes burn when touched.
marfaithRe: Gabapentin (Neurontin) — It worked great for me for three years and then one day 9/20/08 it stopped completely! I can't believe I have to live through this again.
accRe: Constant burning — Wow, sorry Alison! Have you looked at the Treatments page to find some ideas of what things to try?
alisonRe: Constant burning — i have been in pain for 3 years and nothing has helped, it all began from a sting from bubble bath that just got worse. ive been told i have vulvodynia but all the doctors i have seen have no idea how to cure me. please help , im in agony all the time
moonymopRe: Calcium citrate — I take about 3-4 pills of Calcium Citrate 100mg and as long as I keep taking them the symptomes completely go away.
Re: Gabapentin (Neurontin) — been on gabapentin 4 8 months.. was brilliant 4 2 months... 80-90% improvement... then... BANG... stopped working... even tho dose increased.... back 2 square 1.... very confusing!!!!!
gt1628Re: Low oxalate diet — I found the low oxalate diet very helpful. It moved me from pain all the time to pain only on contact. I still follow it, but am unable to tolerate calcium citrate because it makes my pain worse for whatever reason. The woman who take timed citrate seem to feel much better than those who don't. I combined diet, estradiol and biofeedback and did really well, no pain, able to enjoy sex without pain until menopause and then my symptoms got worse so I added HRT and effexor xr. This helped a lot and I was able to resume sex and was w/o pain. recently I started having pain again with sex but I have to stop taking HRT because I now have early breast cancer. I'm dissappointed that it's been 9 years now since I went thru menopause and 30 years since I developed vulvodynia and there still isn't a a cure for this scourge of women.
gt1628Re: Hormone Replacement Therapy (HRT) — If you're post menopausal, have a uterus and have been on HRT for longer than 5 years you are taking a risk. I took estradiol 1mg and micronized progesterone every other month for 9+ years. I was just diagnosed with DCIS - the earliest stage of breast cancer that's non invasive - it will probably become invasive without treatment - surgery and probably radiation. So depending on your existing risk factors for breast cancer, overweight, no children, family history etc make this decision carefully. I now have to wean myself off HRT and undergo surgery and radiation. HRT did improve my quality of life - but if the trade off is breast cancer....Make sure you're having regular mammograms.
gt1628Re: Steroid cream — I tried steroid cream way back in the early 90's. It work ok for a while and then made it much worse. Stopping the steroid was hell. My advice - don't do it. Try bio feedback, estrogen cream - if estrace bothers you, get it compounded. It's probably bothering you because it contains propylene glycol - a known skin irritant - which is found in many creams, lotions and compounds.
hollynoelRe: Cymbalta — I am having great success with cymbalta. It's an antidepressant that people with fibromyalgia use. For me the two most common side effects are nausea and insomnia.
hollynoelRe: Nerve-like pain — I also experience pain in my feet at the same time I have vulva pain. Weird
zallersRe: Itch — Only when I would use the estrace cream as a treatment, otherwise not itchy.
zallersRe: Hair-pulling feeling — Not so much a pain but more of an irritation, and a dramatically uncomfortable tickle from clothing not experienced under normal conditions.
zallersRe: Clitoral pain — Sometimes it would feel more like irritation or uncomfortably scratched by underwear (not like a burning pain there for me).
zallersRe: Generalized pain in vaginal area (contact or not) — After trying multiple treatments to fix the "pain only on contact," it turned into pain ALL the time everywhere in the vulva. This interfered with my ability to walk, let alone stand or be awake enduring the constant burning pain.
zallersRe: Pain only on contact — Started with a type of vestibulitus where only specific spots would hurt when touched (intercourse, q-tip test, finger, etc.) but otherwise comfortable and no feeling of pain with day to day activities.
McTwirlyRe: Capsaicin Cream — It took a long time before I was willing to try this because it sounded so awful to put what is essentially hot peppers on tender tissue, but it is perhaps the only thing I've tried that gave immediate and identifiable results. It is compounded in an acid mantle base to eliminate any possible irritants found in over the counter Capsaicin. It burns like crazy for about 20 minutes and then, ahhh, I can wear pants and sit at a desk chair all day with zero burn. The mechanism is that capsaicin is known to counteract an over-abundance of a neurotransmitter called Substance P.
If you want to know how long the burn lasts, try it out on your thigh. Then try a bit nearer the site of your pain. When you have determined you can live through a high burn, try the tiny amount on the parts of your vulva that burn or sting. I also take a low dose of Amitriptyline twice a day, so the combination could also be a key. The Capsaicin works on what I would call "surface" burn or irritation.
I believe I also have Pelvic Floor Dysfunction, which is an issue best addressed by a competent physical therapist, not a 'surface' issue.
McTwirlyRe: Physical Therapy — Pelvic floor dysfunction is a big part of vulvar pain, surprisingly. Treatment of PFD is specialized and not routinely part of PT coursework. There are three courses taught in grad continuing education programs, but even those courses do not teach some of the techniques developed by the clinical experience of a handful of PTs nationwide.
PT has been one of the MOST helpful things for me, but finding the good PT is hard.
McTwirlyRe: Amitriptyline — Helpful and less intense & expensive compared to Lyrica. Works slowly over time. Side effect is weight gain/increased appetite. DO NOT take it with Trazadone, little known side effect can be pirapism (can't spell it). I have my best results when i combine this with topical Capsaicin compounded in an acid mantle base.
McTwirlyRe: Pelvic floor exercise — There is a difference between kegels and pelvic floor drops. The former did not help and actually worked against me. The later seems to help.
McTwirlyRe: Calcium citrate — I've taken Calicum Citrate since way before I started having vulvar burning, so it is hard for me to think it helps with that.
McTwirlyRe: Biofeedback — Did not help me. Might help some women. It was not until later than I learned the difference between a kegel and pelvic floor "drop" and I think the kegels contributed to over-tightning rather than relaxing the pelvic floor. I could sometimes lower the tension readings but not consistently. I gave it a fair trial, but I did not work directly with Dr. Glazer (he can work by phone) so I wouldn't rule it out if you have the time and money and persistence.
McTwirlyRe: Low oxalate diet — My Dr. prescribed a simple lab test to see if my oxalate levels suggested a need for the diet. The test requires saving urine in a plastic jug for 25 hours (in an ice chest to keep it cool). The results of the test indicated that oxalates were not a problem. I was happy not to go on the diet, which restricts a lot of good-for-you-foods.
McTwirlyRe: Application of ice — Ice alone was not helpful. It made me tighten up more and tension is not my friend.
zallersRe: Bleeding — Unfortunately, I would just try to push through the sex being told "it was all in my head," until the pain was just so unbearable I checked with tissue and sure enough I was bleeding from two different areas. This wasn't from rough sex and we were plenty lubricated.
zallersRe: Burning — The type of burning varied from moment to moment. Some days it felt like hot sauce, some days it felt like fire, some days just felt warm and irritated. I would try to fan it or apply ice to keep it cool, but it just wasn't a superficial kind of "burning." It was too deep and internal to cool.
zallersRe: Increase estrogen — By taking vitamins and supplements I was able to naturally help my body increase it's own estrogen. When I started hitting my periods again, my vulvodynia and vestibulitus slowly but surely went away after years of fighting it. My current NP thinks it was related to severe adrenal fatigue or mal-functining pituitary after too many years of being on the BC pill.
hollynoelRe: Gabapentin (Neurontin) — It also did nothing for me. I felt no relief whatsoever. Just made me gain weight.
Sarah HRe: Doxepin — This "cured" me. I tried about half of the treatments listed over a two year period. When I finally got relief, I was taking 75mg Doxepin/day, Zoloft (can't remember dosage), Seasonique (birth control), and 30 minutese intense cardio exercise every day. I believe the Doxepin was the drug that worked for me. Pain free for a year, trying to spread the word & help someone else.
mariaschultzRe: Local anesthetic — I have vulvodynia - the classic story of having been to what feels like hundreds of doctors through four years until finally one doctor told me my diagnosis. What a relief! The treatment for the condition here in Denmark is mainly Lidocain or Xylocain 5 % (the name here). I was of course sceptic, but I was, however, willing to try just about anything that had even a remote chance of helping me. So I started to put Xylocain 5 % on a little piece of clorine free cotton and leaving it on the sore spot (in my underwear) every night - the whole night!. I got an allergic reaction to it but normal zink ointment (Nappy Change Cream) helped a lot and I continued. It can help the discomfort to use Xylocain 2 % for a period of no more than two weeks and then go back to 5 %. The doctor told me that after two months I would be cured, so you can imagine my grief when I realized after two months that it hadn't worked. This was two months of not having sex with my boyfriend and using Xylocain every night! I called the doctor and she said that in some cases, if the vulvodynia is quite bad, it takes up to a year of using the Xylocain every night, so that I should just keep at it. This is the main reason why I am writing to you because I really wish someone had told me this from the beginning!
And now to the happy part of my story:
After five months of treatment, almost losing my patience, I am now more or less cured!! I can still get a little sore, but then I just remember to put on the Xylocain 15 minutes before sex and it's not at all necessary every time. I no longer have problems with biking, sitting on hard chairs, tight jeans and so on, which I had before.
So hang in there, there is hope!
accRe: Pain — Unbelievable pain when my doctor tried to do a pap smear. I almost passed out, and she and I were both crying.
accRe: Rawness — My vulvar tissue was blood red and so raw it was almost bleeding, very painful to sit or wear jeans, some days even painful to walk.
accRe: E2/E3 Bioidentical Hormones — I am taking a systemic E2/E3 (estradiol/estriol) formulation to try to counteract the effects of sub-menopausal levels of estrogen in my body (i'm 31) and prevent bone loss, hair loss, etc. So far I've noticed a huge mood improvement - feeling much more calm and balanced, less panicky. Too soon to notice a difference in hair, but my daughters said I smell different!
zallersRe: Clipping tissue (minor surgery) — Did not end up being the cause of (nor help cure) my vulvodynia as the doc thought skin tags were potentially getting in the way of sex and causing pain. However it did make sex in general slightly more maneuverable.
zallersRe: Antihistamines — Didn't work at all.
zallersRe: Selective Serotonin Re-uptake Inhibitor (SSRI) - Low Dose — Didn't work at all for vulvodynia, but it did help my IBS a lot.
zallersRe: Testosterone cream — Didn't really work, but I only tried it for 2 weeks.
farenfloraRe: Antibiotics — YES, for some reason amoxicillin helped take a lot of the inflammation and burning away, even though every test for bacteria came back negative. The problem was that as soon as I would stop taking the antibiotics (weeks later), it would come back with a vengeance the very next day. To this day, I don’t know if there was an undetectable infection or if somehow antibiotics just helped provide pain-relief through an alternative interaction.
zallersRe: Detoxification/Fasting — Didn't really work for the vulvodynia. I felt like I almost died when I tried to fast for a week. Some people are good fasters and some are not. I still believe in the principal, but it just was too harsh on my body. Maybe it was just a major "cleansing reaction." I think it may have helped with IBS and some other general health items though.
zallersRe: No underwear — This doesn't really work for me. I tried to do it religiously for about 3 months, and found that in the end it was actually making it worse. The underwear served as a barrier between my vulva and my legs rubbing too much causing more inflammation.
zallersRe: Exercise — During my worst pains of vulvodynia, the thought of doing ANYthing-- let alone exercise, felt impossible. The last 3 months before I was primarily cured, I forced myself out of the house to jog for about 10-20 min a day. The job itself was difficult, but I always noticed immediate pain relief on my walk back home. It wasn't gone, but it brought it from a pain level 4 to about a 1 or 2. That was enough to keep me going.
zallersRe: Dong Quai (Angelica sinensis) — Yes- but it is a combination of life changes including Angelica herbs that have re-regulated my cycles again, and thus diminished a lot of my vulvodynia and vestibulitus. I will add an update if anything changes when I try to ween myself off the herb into a more comprehensive adrenal support supplement. Ideally I want my body to be able to naturally balance itself on its own eventually. For now, I need some help back on track and this seems to be working.
zallersRe: Natural endocrine diet — Yes! -For 3 months I have comitted to eating perfectly and living perfectly as much as possible away from endocrine disruptors and anything un-natural. I've been determined to get my body healthy again by avoiding anything that could be interfering with it's natural balance. I eat 100% organic, no processed sugar, eat from all the food groups, and avoid high estrogenic food/herbs. In combination with natural vitamins/supplements, I have restored my hormonal cycle again in almost a perfect 28 day period which has significantly diminshed vulvodynia and vestibulitus. It has also helped with my hypoglycemia. Unfortunately it is not perfect yet, and I still have severe headaches.
zallersRe: Vitamins/Nutritional supplements to restore health — I have had vulvodynia for about 4 years, but severely debilitating for 1 year. I tried everything, but in the end a major player in its cause was an overall hormone imbalance affecting so many other pathways. Since I have re-gained regular period cycles by eating strictly whole foods from home, exercising regularly, and specifically taking high quality herbs and vitamins from a WomenToWomen program, I have been almost 95% pain free. It is truly a miracle. So many of the pain medications, medicines, and alternative treatments actually were making me worse, when really all I needed was to regain my bodies natural health via nutrition to allow it to balance and fix itself.
farenfloraRe: Local anesthetic — Worse than no result, lidocaine actually made the pain a lot worse! I was so hyper-reactive to anything at that time, pretty much ANY ointment of any nature caused more inflammation... even totally inert substances like Vit E.
farenfloraRe: Low oxalate diet — Small success! I tried it maticulously for a month, and I noticed mild results. Again it probably took me from a pain level 8 to a 7, which was better than nothing, but in the end- just not enough to make a difference. Even though I am alomst 95% pain free now, I still do get occasional flare-ups for about 10-20min after I urinate (seemingly when I'm dehydrated. I always wonder if my oxalate level is high that day or if it's something entirely else. At the time I was living in Thailand, and Calcium Citrate could not be obtained anyhwere, so that part of the diet I did not complete.
farenfloraRe: Acupuncture — Unfortunately, accupuncture also did NOT work for me, and I went into it very open-mindedly and hopeful! To be fair-- I do not believe the accupuncturist was very familiar with vulvodynia and so was only treating generally. There could be a different protocol for the right symptomatic treatment. Stay positive, stay hopeful.
farenfloraRe: Application of ice — YES! Also just cold wet tissue... constantly. But this was not a cure, just a very mild symptom-reliever at best. On a scale from 1-10, if I was at a pain level 9, it might take me down to a 8. So yes, it helped, but the difference between a 9 and an 8 was insignificant when it came to being functional.
farenfloraRe: Estrace cream — Estrace cream, and various other forms of estrogen creams did not work for me, even though one of the big players in my vulvodynia was a hormone imbalance (specifically menopausal levels of LOW estrogen, and I was only 24yrs old at the time). The estrogen cream made me very itchy like a yeast infection and has been described the same in other reports. The itchy sensation has been predicted to be a symptom of "healing," but I was also told estrogen could feed yeast, so I think this made me extra cautious. The burning vulvodynia pain may have insignificantly subsided, but was masked by these other side effects, so to be fair-- I only tried it for 1-2 weeks at a time. I did later address the hormone imbalance and low estrogen by naturally aiding my bodies production using herbs, diet, overall nutrition, and exercise. Based on the previous review, both our conditions had to do with a hormonal imbalance (specifically low estrogen) and were seemingly cured with better levels of estrogen. I would suspect if I could not get my body to produce a better estrogen balance on its own, I would have comitted to the creams/HRT longer and potentially had similar results.
SRe: Gabapentin (Neurontin) — Did not work for me- side effects were horrendous- memory loss, weight gain and it did NOTHING for my pain no matter how high I increased my dosage.
endendoRe: Acupuncture — I'm sorry to hear that you didn't find acupuncture helpful. While I have vulvodynia/vestibulitis myself and I have not found acupuncture useful for that specifically, acupuncture has been amazingly helpful to me in many other ways!!!
My acupuncturist uses very thin, flexible, Japanese-style needles. They do NOT hurt. In fact, I usually fall asleep and/or totally "zone out" (in the best possible way... better/more restful than when I sleep at night!) during an acupuncture session.
I have multiple chronic illnesses and therefore see a large number of specialists. With no disrespect to any of my other doctors, my acupuncturist has helped me with more symptoms than the rest of them put together!
I don't know how long you tried acupuncture or whether you have another condition(s) too. (For example, I have heard of doctors refer to vulvodynia as "fibromyalgia of the vulvar region").
I just wouldn't want anyone to get "turned off" of acupuncture by reading about it not being helpful for you.
It is so beneficial to my overall health for me to get regular acupuncture treatments. I feared acupuncture for many years before finally getting ‘desperate’ enough to try it. I wish I had tried it sooner! There are many conditions acupuncture can help and some conditions it can't.
If you have any other health issues besides vulvodynia, you may want to keep going to acupuncture. I've gone regularly for 7 years any it has helped tremendously.
Acupuncture is amazing for so many illnesses! Best of luck to you!! :)
accRe: Revive web-based treatment program — What an amazing program! My husband and I went through it and totally transformed our sex life. It takes you through very gentle communication and physical connection exercises, one step at a time, over a period of a few months. It brought us much closer together, and Lisa, the Ph.D. student conducting the program, was so supportive throughout the whole thing.
accRe: Estrace cream — This has been a life-changer for me! I went from raw, blood-red vulvar tissue that prevented me from going for simple walks every day, let alone wearing jeans or even think about having sex, to soft, pink tissue and a 95% reduction in pain!! It works for me because my estrogen levels are abnormally low. I use 1g of a custom estradiol compound cream every day, applied directly to the tissue. My doctor orders it from Women's International Pharmacy (http://www.womensinternational.com). The last 5% of my pain is from a small bit of what might be scar tissue from a silver nitrate burn performed by a well-meaning gynecologist who was not aware of vulvodynia as a condition.
accRe: Taijiquan (Tai Chi) — I've been practicing Taijiquan for 12 years, and while I can't say it has made a huge difference in my vulvodynia symptoms, the relaxation and energy balancing does improve my mood and overall health.
accRe: Application of ice — I was sitting on ice packs for a week after the birth of my first daughter - I had stitches that were excruciating to heal, and I had trouble walking for the first couple of weeks. The ice was a GREAT relief and helped me get through the unbelievable pain - my husband was getting me ice packs every hour for the first 3 days.
accRe: Acupuncture — I tried acupuncture but found no noticeable improvements.
© 2015 CureTogether. Data is submitted by members and does not constitute medical advice.