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Vulvar Vestibulitis (567 members)

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I was diagnosed years ago.. then for the longest time, I had no problems will about a year ago. Its been getting worse. When I was first diagnosed, I was put on Amitriptyline. I took it one time and that was the last time I took that. I was a total zombie for 2 days. I could not function at all. Who can live that when you have to work everyday. Recently Im at my wits end. I have constant burning and the feeling of a bladder infection and pressure when I really dont.. Does anyone notice it seems to be worse in the summer/hot months for them?
What do you all do for the pain, what helps? Im soooo frustrated with this, its really affecting the quality of life.

Cathy311
Diagnosed with vv last week after 5 years of many doctors and gynos. I started gabapentin(Neurontin) 5 days ago and have had no relief. Gyno told me it could take up to 2 weeks before noticing any relief. The pain is level 10. Depressed, crying, etc. wish there was a magic cure :(

I was in a hot tub on my honeymoon, you could smell the bromine in it. being 22 i just wanted in the tub with hubby. my eyes burned and later having sex was excrutiating. i figured i had a chemical burn and it would go away in a few days. i'm 46 and have lived with this debilitating condition all these years. the OB GYNS always think it's my childhood trauma etc. I've gone to therapists for years. it fixed about 20% of the pain, the rest is NOT in my head it's in my vestibule. my husband now wants a divorce and can't stand to touch me for fear he will hurt me. it has ruined my life, no children, no infertile diagnosis and after 28 years, facing divorce. if this happened to men, i'm convinced they would find a cure so they could have sex again. i like sex, i just hate the burning, horrible entrance pain and have just about given up. i'm on strong antidepressants these days, and shall remain on them for many years. i've tried most remedys since there was no diagnosis in 1988 and no name for it for several years. my first breakthrough came when i switched from the Charmin toilet tissue, it was leaving small cotton balls after urination that i think clogged the bartholen glands and made things worse. now theres at least a name, some options, but none have worked for me.

Re: Elavil/antidepressants — PS from the comment right before this. following my childbirth, I also continued bleeding for over 4 months and starting 2 months post-childbirth I went to the OB/GYN who used silver nitrate to try and cauterize the burning. I have been traumatized by the whole chain of events. The silver nitrate was excruciating and I do believe that between the botch job he did with my episiotomy and then trying to fix things with the silver nitrate that he caused my vestibulitis. I live with this trauma every single day.

Re: Elavil/antidepressants — Amitriptyline helped with my vestibulitis. I started on 10mg, then on to 25, then 50 and 75mg was the highest I went. While it helped my vestibulitis pain by about 85-95% at the 75mg, I stopped taking it when I realized that it was also the cause of 1) major weight gain as in 70 pounds in the 13 months I took it, and 2) moderate depression.

sadly, after being off of the elavil for about a year at most - all of the pain returned and it is as bad as ever if not worse. Sex is impossible. I avoid intimacy of all kinds because my husband thinks that one time it will not hurt me anymore - and it is so so upsetting to go thru the whole situation - knowing that it will be excruciating, just at the point of him trying to enter, yet my whole vagina burns inside as well. It has caused quite a strain on our marriage of 28 years. I had a horrible childbirth, no anesthesia as I cried for, must have torn extremely badly as I was in agony below for months following the childbirth, as if the ob/gyn had sewn my episiotomy together way too tight and someone was always pinching me as hard as they could. Over the months small improvements came, so sex became possible, though always uncomfortable - and when I went thru early menopause at age 44 due to chemo for breast cancer I was left with severe vestibulitis. Life has been horrible b/c of this and how it has affected my relationship w/ my husband who does not understand that no matter how much I want to be intimate I can't and can't keep torturing myself emotionally.

Sorry to say, vestibulitis is as bad as ever, and I have remained as heavy as ever, now unable to lose the weight. Depression has been my constant companion since starting the elavil ( amitriptyline) as well.

Re: Pain with pressure (eg. biking) — pain when sitting for long period also

Kim75
Re: Estrogen/Lidocaine Compounded Cream — Improvement only temporary (for a few hours)

no.help.in.atlanta
Re: Yoga — PT focused on passive stretching of inner thigh and groin helped greatly

lilli
Re: Burning in vestibular area — burning in the area while and after urinating

roxyoursocks
Re: Corticosteroid cream (e.g. Clobetasol) — This actually worked like a charm at first, but then my symptoms came back after I went off it, and you can't keep using it indefinitely.

roxyoursocks
Re: Elavil/antidepressants — I was prescribed Nortriptyline, but after taking the first dose (only 10 mg!) I felt totally fatigued, I could barely think or function and spent the whole day in bed, so I stopped taking it. My doctor told me that reaction was really unusual, though. I think it did help a bit with the pain, but I felt so weird overall that it's hard to say.

lishalynn
Re: Pain without contact during period — Only after sex or cramping type pain recently.

lishalynn
Re: Cramping — Recent symptom, not sure if it's related or not. Severe cramps, similar to contractions, but not the same, about as painful though.

orca
Re: HPV — I had HPV 20 years ago and was cured of it completely back then. I don't think it had anything to do with my Vestibulitis which started 10 years ago.

trisha
Re: Estrogen/Lidocaine Compounded Cream — Improvement at least 75% But also has other meds in it.

abc1000
Re: Elavil/antidepressants — I took Nortriptolyn (sp?) for a while. I had a lot of weight gain that I could not lose until I went off the drug. It did not help with my pain.

happytracy
Re: Vaginal dilators — Very effective with a combination of other things such as Pelvic Physical Therapy (by someone trained properly in this) and the right vaginal creams and/or muscle relaxants. The key is to attack this with several things at the same time.

Magenta
Re: Pain on penetration — This would be during examination, as sex is out.

Liz T
Re: Elavil/antidepressants — Amitriptyline helped, but the side effects were too difficult to cope with.

Kittles
Re: Hormonal changes — I don't have changes during my menstrual cycle, but I have noticed longer-term (year+) changes.

marit_pk
Re: Yasmin birth control — I was taking Yasmin for 2 years. I was on it when I had my diagnosis. Blood test showed that 5 sex hormones were out of whack. They were normal before going on Yasmin & returned to normal after, both as confirmed by blood tests. No more birth control pills for me.

bellaestrella
Re: Elavil/antidepressants — Amitriptyline has done miracles for the past year However my pain is slowly returning if i miss any doses.

birdie
Re: Yasmin birth control — I was taking Yasmin birth control at the time I first began having vulvar vestibulitis symptoms; it affected me emotionally (the BC) and I became extremely unemotional (odd for BC). I started getting repeated UTI's (1x/month) and was prescribed Cipro each time. The UTI would go away...then the burning wouldn't. I tried using monistat the first time I experienced the burning and, after that, it seems the burning feeling has not gone away.

meredi
Re: Hormonal changes — Always worse right after my period.

rothko
Re: Elavil/antidepressants — i tried nortryptiline for about three weeks, but it made me *extremely* tired all the time, and i was having trouble finishing sentences and thoughts. i was pretty much useless on the stuff.

Dana
Re: Elavil/antidepressants — The anti depressant Desprimane really has helped me alot.

cheesemonger
Re: Pain on penetration — Dealing with this since 99. Elavil worked great, but now I'm trying to get pregnant, so I've had to ween off and pain is back...now even worse. I've tried food allergy route too with some success. And PT to stretch the pelvic floor muscles. Going to try the non-med route for a bit, and if it becomes too uncomfortable, switch to effexor (safe for pregnancy).

katiesparkle
Re: Vestibular redness — ummm i don't know if i have redness. i don't remember what it looked like beforehand.