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rissabA month ago during my period I realized that I couldn't lay on my stomach. It was very tender. About two weeks ago I found a lump above my csection scar. I had my csection 6 years ago. Some days it didnt hurt at all and some days it had a sharp pain go through it. I started my period again this past Sunday and the lump and area around the lump started hurting very bad. I have never felt a pain like this before. It is a sharp stinging pain and also feels like you are being stabbed with a knife. I had a catscan on Thursday and it showed a one inch mass. My OBGYN believes it is a lump of endometriosis above my scar and is going to take it out on Tuesday. Has anyone else had any symptoms like this? I am worried it is something else.
I have started homeopathy to svoid surgery, and found that I am cramping much more than I was before starting the remedies three months ago. I bleed EVERY day, and I have been finding that BC pills are not making me feel better, I just take them because I don`t know what else to do. I am contemplating surgery now because my symptoms have become to overwhelming. The pain is at it`s worst and is now impacting my whole life. Does anybody know if surgery will leave me infertile? or has anybody had initial symptoms of pain while doing homeopathy treatments to deal with the endometriosis?
RobertaRe: Laparoscopy (conservative surgery) — I have had laproscopy but like everyone else the results were temporary and the disease would slowly return. About 18 moths ago my doctor offered me an alternative procedure called NovoSure (Endrometial Ablation). It's designed for women with extremely heavy menses (which I fit into). It was a quick outpatient procedure (actual procedure lasts 90 seconds) performed at my hospital. My period has gone from 5 heavy days to three days with such light spotting I just use a liner. The pain has significantly improved as well. The pain is only severe every three months or so and the rest of the time I barely have any discomfort. This procedure has given me my life back! There are risks associated with any procedure so you need to talk to your doctor to see if it is appropriate for you.
Re: Pain during periods — I get it a week before to a week after generally, so two weeks! every month, its terrible, i cant move without being sick, and i usually faint with pain
Re: Diet changes — Funnily enough since finding out I have Coeliac / Celiac Disease my symptoms were a lot worse. Very painful each month and before and after. So despite having to go gluten free (no wheat, rye,barley, oats, spelt) etc it hadn;t helped. Periods v severe yet a lot lighter and lasted for 3 days. Strangely they appeared on time though post gf (when normally 35/40 days apart). I think that going gluten free and having low iron/ vit d deficiency due to Coeliac damage has in some way affected my hormones. Not sure how. Drs say my testosterone levels are raised and they want to recommend continuous combined pill with artificial progesterone (to prevent lining building up). Fingers crossed.
Re: Hormone Imbalance — I've been told my testosterone levels are higher than they should be (no obvious hairiness, yet classic loss of sex drive) and roscea type rash on face.
Re: Burning pelvis — i too have burning in my pelvis and ovaries and sometimes my back. right before i start my period. it is pretty isolated to my c-section scar. is this a symton of endomertriosis?
Re: Multiple Chemical Sensitivity Syndrome (MCSS) — can not tolerate bath soaps hair sprays cologne bleach detergents fabric softners any thing that has a smell. I cannot breathe need mt inhaler fast
Re: Random numbness in legs — Sometimes my legs will go completely numb from my buttocks down to my feet. It gets to the point that I can't even walk and it is interupting my daily life and my job. I can't stand having endometriosis but all I can do is deal with the cards life gave me and try to find some ideas that will work for me to help me deal with life. I haven't found anything that helps with numb legs yet but i am researching it!
Re: Extremely heavy menstrual bleeding — I used family planing pills, the pain was gone for a year. Bt since i stopped using the pills the last 2months the pain is back, heavy periods and much spotting after period should i go back to pills?
Re: Lupron Depot — I had my first monthly injection just last week. The plan is to be on it for 6 months with add-back therapy. I'm going to log my experiences here, as I go:http://lupronlog.tumblr.com/Fingers crossed it'll be OK...
Re: Skin rashes, hives — over a year with hives if any thing brushes against my skin welts,, just diagnosed with endo adenomyosis going to have hysterectomy
Re: Headaches/Migraines — Daily headaches...migraines with perioid or ovulation
Re: NuvaRing — I tried it only for a month and go off it...it didn`t provide any relief and was painful once inserted.
Re: Lupron Depot — I have had 3 monthly injections so far and it has provided much needed immediate relief from the Endo. My Endo was painful I was having difficulty simply disgesting foods as the Endo has spread INSIDE my bowels causing bowel obstruction. I have had regular bowel movements (while still being careful of what I`m eating - check out Endometriosis Cookbook on Amazon) for 6 weeks!!!! This is a miracle for me!!!! While the hot flashes and cold flashes and insomnia, memory loss, and mood swings are a pain to deal with...I`m not in pain! I`ve also been having Cranial Sacral treatments every week if not every two weeks which is surprising helping balance out the side effects so I`m feeling more normal. I have 3 more shots to go so we will see how it goes.
Re: Diet changes — I read a book called Endometriosis: A key to Healing through nutrition (i forget the author at the moment); really opened my eyes to how much food really affects your body. I had been fortunate in that I was diagnosed at age 16 and underwent two laporoscopies along with Lupron therapy and Depo. I went for about 4 years before my symptoms returned. After much debate and frustration, I decided to try this diet as a last resort before surgery again. It took about a month to really start to see a difference. As time went by, things just got better and better. I am still on seasonelle, which also helps, but sticking to this diet has drastically changed my life. I was experiencing painful cramps that woke me in the middle of the night, breakthrough bleeding, cramps throughout the month and irritable bowel symptoms. I actually have control back now. My periods no longer dictate what I do and when. They are actually "normal". I highly recommend this. You have nothing to lose and the science behind it makes perfect sense. By the way, I still eat meat, just no red meat and hormone free chicken and fish. You have to be diligent and strict the first month, then reintroduce the foods you took out to see which ones bother you, as everyone is different. Believe me, you'll know within an hour or so.
Re: Acne — I am a walking monster at this point. Because I am trying to get pregnant, I cannot be on birth control (which helped) or any other dermatologist medication potent enough to be effective. My face is completely clear until my jawline, where all hell breaks loose. There are countless dark red pimples, most with whiteheads. If I notice a bump in the morning, it will have be a whitehead by noon.I exercise daily, eat all organic, all healthy, zero refined sugar or flour, zero soda or junk food. I drink many glasses of water each day, and actually consume no beverage other than water, except one small pot of dandelion or ginger tea. I've started drinking "green smoothies" (a different leafy green (kale, spinach, etc) blended with water) which I learned about on acne.com. Every day it gets worse and every day I feel more despondent.My hope is that getting pregnant will cure the endometriosis and therefore end both my pain and my acne.
barefootgardensRe: Reiki — I had my first healing a few days before i was due to have 3rd lap, had such an effect on my pain levels i cancelled lap and learnt to reiki myself. When I was having regular healings(fortnightly/monthly minimum) I had a full year completely pain free. Obviously I have a good teacher/healer and ability to heal myself. If you dont see improvements, gradual ones granted, then change healer.
barefootgardensRe: Goserelin (Zoladex) — it took my pain away apart from in the most severe places, they were getting better though towards the end of the nine months treatment period. Terrible side effects though, would never have it again.
barefootgardensRe: Birth Control Pills — when i have changed pill brands or restarted after childbirth all endo symptoms vanished completely for about two or three months but returned with avengence after that.
barefootgardensRe: Laparoscopy (conservative surgery) — Should just add to previous comment, it has grown back in exactly the same places.
barefootgardensRe: Laparoscopy (conservative surgery) — total relief for about a year
barefootgardensRe: Muscle Fasciculations (twitches) — cycle related, mostly at night, radiates from my lower spine into my legs. can be violent and painful.
barefootgardensRe: Chest Pain — cycle related, in the centre of my chest sometimes. very often under my right rib cage at the bottom sometimes left side too. Can feel like a cramping.
barefootgardensRe: Headaches/Migraines — cycle related, very severe, raidiating from the base of my skull. Accupressure helps a lot with this.
barefootgardensRe: Pain all the time — There is pain of some degree for roughly three weeks out of the months, ranging from moderate to severe.
barefootgardensRe: Feeling of pain like a knife up the bottom — haha yes!! only once or twice a month tho and usually in days before period is due.
barefootgardensRe: Urinary tract infection (UTI) symptoms — have suffered with uti's on and off, also have endo on my bladder.
barefootgardensRe: Dyspareunia (pain during sex) — Not so much during, only when its been a really bad day anyway. At its worst afterwards, cant move sometimes due to cramping, and stretching feeling.
barefootgardensRe: Fibromyalgia — no diagnosed but suspect so.
barefootgardensRe: Pain during periods — I tend not to get so much pain during my period, its a time of relief. Few days to a week either side are very bad though.
Opal RayneRe: NuvaRing — I started it about a month ago and started getting really severe migraines, to the point that I could not work or function normally. Plus, with everything that I have read and researched putting more estrogen in my body when endo feeds off of it, is not something I wanted to take a chance with. I have since stopped the nuva-ring!
claudRe: Burning pelvis — Feels like burning in my pelvis and ovaries and somtimes radiates towards my back.
charmsRe: Extreme fatigue — really terrible fatigue. sometimes even if I get a good nights sleep, i still end up dozing on the sofa after i've only been awake for a short while. Or sometimes I feel so drained I just dont have the energy to do anything. Everything feels like its a huge struggle to me.
miss_fit666Re: Laparoscopy (conservative surgery) — A comment to asexual: I went to get my tubes tied and an ablation and at my 6 week surgery follow-up I was told that I was full of endometriosis. Since my surgery (don't know if they cauterized lesions while they were in there?) I have had severe problems with my IBS!! I didn't know what endometriosis was when the doctor told me and he was in a hurry to get on to the next patient so I couldn't ask any questions. All I know is that I feel like I'm dying!! :o(
charmsRe: Feeling of pain like a knife up the bottom — A really sharp stabbing pain that just grips you. It tends to come in waves for me then it subsides. When it happens It makes me want to tense up but I try to stay calm and relaxed as I think it helps me get thru it much easier. Also if I can do some deep breathing then that helps sometimes to.
Re: Pain that radiates down the leg — pain from the pelvic region generating from the left lower quadrant running skin deep nerve pain irritating to the touch, clothes, movement, shower etc. Some numbness but an irritating sensation that is uncomfortable and annoying. Tends to be during or before cycle.
livingRe: Burping — I burp a ton after a flare up with endo. May go under gas though.
livingRe: Pain during periods — I am post hysto, new ovarian remnant that grew back. Tried all the progestine therapy, pain went, mind too though, cant touch that stuff. Off completely. Tried them all. Did well on Lupron. Now trying raising my Estrogen and trick the ovarie into auto-pilot.
KJSRe: Naproxen (Aleve) — This is the only medication that works for me. But I usually have to take 2-4 the first day.
chopsRe: Fibromyalgia — not diagnosed,but feel may have.Muscles,always feel tender sore,even after rest,sleep
chopsRe: Allergies and sensitivities — hayfever,rhinitis,creosote,paint,plasters
chopsRe: Pain that radiates down the leg — pain from groin and hip goes down to knee (leg feels numb in places)walk with a limp sometimes as so painful(burning,aching pulling,numbness)One of my worst symptoms,as always there,have enlarged ovary annd cyst on this side
chopsRe: Hot flashes — just finished 6 months of zoladex(hell)Have suffered from this since week 2 of injection.Occurs every 20-30 minutes,all day,all night,not easing,has gotten worse,also get palpitations at same time,very annoying,tiring.Affects whole body,not just top half
chopsRe: Endometrioma — left side very large removed(also tubes and ovary)
chopsRe: Extreme fatigue — feel totaly whacked out all the time,even if sleep enough
chopsRe: Ovarian cysts — large endometrioma removed + ovary on left side june 08,now rigt side is going same way
chopsRe: Chest Pain — rigt side,under rib cage....hurts
chopsRe: Urinary tract infection (UTI) symptoms — blood and protein found ,A.B's don't seem to have much effect.Pressure on bladder continuously,feels like bladder is full of barbed wire.Urine sometimes looks like petrol (like rainbow loking)!suffer from alternating urgency/retention,never feels bladder empties completely
chopsRe: Hip pain — constant pain(dragging,aching)Enlarged ovary and cyst found
chopsRe: The chills/freezing — zoladex induced!
chopsRe: Lower back pain — always,feels like nerve pain,pressure
chopsRe: Deep breathing pain — pain on right side,under rib cage (feels full,tight)
chopsRe: Adhesions — discovered during cystectomy op,pelvic area totaly covered,some adhesiology done,but now feeling pain after 3 months again
chopsRe: Painful ovulation — always had this and always on same side(9/10 times)
chopsRe: Nickel allergy — had this problem in teens,now avoid
endendoRe: Irritable Bowel Syndrome — I have had diarrhea since the early 1990s. I had a foot of my colon removed in '96 for a partial blockage due to malrotated colon/paraduodenal hernia. I am scheduled for my 4th colonoscopy in early April due to alarming symptoms (cyclical rectal bleeding and rectal clots). My endo has never (in 7 surgeries) been found in/on the bowel. However, the cyclical nature of the rectal bleeding makes me think it's endo-related. I have encountered many other endo women w/similar issues. However, I have to have another colonoscopy to rule out other things. The clots were the last straw. No colonoscopy since 2001. Time to get checked out. I don't expect them to find anything. I think it's endo-related.
endendoRe: Interstitial Cystitis — Thankfully, my treatment regimen (oral med plus bladder instillations) helps a lot. Still get flare-ups but much better than pre-diagnosis/treatment for IC. I highly recommend aggressive treatment of IC because it can really help!!
endendoRe: Fibromyalgia — Fibromyalgia can be very debilitating. Let's just say I'm glad spring is on the way!!
endendoRe: Multiple Chemical Sensitivity Syndrome (MCSS) — MCS is a huge problem for me. With all my diagnoses, this one has been taking center stage. It is horrendous! This is a HUGE problem!
endendoRe: Vulvodynia — This is a persistent problem that's non-responsive to the treatments I've tried. It would be nice to ride bikes w/my daughter but it's impossible. :(
endendoRe: Extremely heavy menstrual bleeding — No one should have to bleed this much. It's hard to fathom. Homeopathics help me a lot with this and with blood clots, though. I wish I'd found them sooner!
endendoRe: Extreme fatigue — I have struggled w/fatigue for many years. It's terrible!
endendoRe: Hip pain — IT band muscle is too tight as per the physical therapist.
As a separate but somewhat related issue, I have struggled with groin pain for several years now. (I blame all the surgeries for this pain). In any event, after 4+ yrs of agony (including multiple nerve blocks), I caved and had nerve cutting surgery. The results of the surgery were not good (long story) and I was better off before that last surgery.
Phantom pain is not fun! :(
endendoRe: The chills/freezing — I have Reynaud's Disease... an autoimmune disease that seem to run in the same circles as endo for some patients. I alternate between freezing and roasting. I don't ever seem to reach "just right". I have severe heat intolerance in summer and the winter aggravates my fibromyalgia and Reynaud's immensely.
endendoRe: Nickel allergy — Well... I'm not sure what if anything this has to do with endo but I do have both endo and a nickel allergy.
My allergy to nickel is severe. I cannot wear earrings unless they say "nickel-free" and even then they sometimes irritate my ears after awhile.
If I were to put nickel earrings on now (which I wouldn't do), my ears would start to itch, burn, and hurt immediately. Sterling silver won't work. It can have nickel traces or something, as it was explained to me.
The dermatologist told me that many common items contain nickel like car keys (some do, some don't), some eyeglass frames (I use titanium with no problem, as does my daughter who has nickel allergy too), and - yes - nickels themselves! Also, dental instruments can have nickel. The list goes on.
There is a testing kit to determine whether an object has nickel it it. My dermatologist had told me about it.
It's called: Allertest Ni (dimethylglyoxime test for nickel). For product info: 800-365-6868 or www.allerderm.com. (I don't normally list products here and I do not mean to be spammy at all but thought posting this here might help someone).
Anyway, when I tested my car keys I found that I was allergic to them. Other things I thought I might be allergic to were fine. So it is helpful to test.
You can always get keys made up that are nickel free (or at least try not to handle the metal part of the key).
Hope this helps someone. Nickel allergy has caused my ears to become severely infected. It is VERY difficult to find nickel-free earrings. Hypo-allergenic is NOT enough if you have nickel allergy.
SoniaRe: Coming off birth control — Would not have know there was a problem until coming off birth control bills. Suddenly really bloated & fertility problems
SoniaRe: Allergic reactions to foods — Big problems with wheat - try to avoid it 100% now
SoniaRe: Dioxins — I grew up on the edge of a farm that regularly sprayed the fields behind our house with god know what....
SoniaRe: Retroverted uterus — Retroverted Uterus I believe makes going to the toilet & sex more painful for me (combined with the endo adhesions) than it would be otherwise.
SoniaRe: Laparoscopy (conservative surgery) — Felt worse after, felt like I'd been butchered for no actual benefit.
SoniaRe: Acupuncture — Didn't notice much difference - more of a destress session.
SoniaRe: Vitamins / supplements — Also following Dian Shepperson Mills diet - didn't believe it at first but when I fall off the waggon I remember why I'm sticking to it. For me its 100% no wheat. Symptoms come back after one meal containing wheat and take about 3 months to get rid of again. Lower back pain, breast tenderness, painfull poo & sex, period pain, black yucky blood all dissapear when wheat free. Bliss!
missmotorcadeRe: Soy — i find that when i eat too much soy, my symptoms are significantly worse
EmseetwoRe: Dioxins — I was obsessed with dioxins in College, and recently ran into the book
by Sandra Steingraber called Living Downstream: An Ecologist Looks at Cancer and the Environment. I haven't finished it yet, but so far it's mad an impact and I'm wondering if living so close to the nuclear power-plant, several golf courses, and farms has played a major part in the cause of my conditions.
EmseetwoRe: Trauma — I was sexually abused/assaulted by a doctor at age three. I only recently allowed myself to realize it, tell my therapist, doctors and my husband. My newest health consultant believes that all of my pelvic conditions (Endometriosis, Pelvic floor Dysfunction, Interstitial Cystitis, Adenomyosis, painful intercourse, vulvadynia) stem from this early traumatic experience.
EmseetwoRe: Lupron Depot — I went on a 3 month injection, and it ended two weeks ago. I haven't started my period yet. I probably wouldn't do it again, I had hot flashes and I forgot the simplest things too, like where I parked my car and people's names. I also gained 20 pounds while being on Lupron (and in the weirdest places too). Dry eyes, dry skin. Felt hot, old and tired.
EmseetwoRe: Cinnamon and Hoelin Chinese Herbs — I have just started this routine of taking Chinese herbs "Gui Zhi Fu Ling Wan Cinnamon & Hoelen Formula" (SunTen Brand). My new health consultant and massage therapist at ie3 in Grand Rapids instructed me to take 1-2 grams three times daily. She said it has 100% cured Endometriosis in several patients. I'm skeptical but I will try it if it doesn't make it worse or cost gobs of cash. Stay tuned, I'm only on week two of a six-month process.
zeptRe: Hydrocodone + Paracetamol (Lortab / Vicodin) — The problem with this is that although it's a good dissociative, the side effects are not worth it. I grind my teeth and get horrible headaches as a result. I have nightmares. I'm depressed and angry for days after taking vicodin.
zeptRe: Low immune system functioning — My first year working as a daycare teacher, I got severe sinus infections every single month. This is not normal even for first year teachers! And at the end of the year, I developed sudden acute pancreatitis and was hospitalised for four days.
19 years later, I still get sick within 3 days of being around another person who has a cold, and it always rapidly turns into a sinus infection.
zeptRe: Allergies and sensitivities — Gluten, yeast, eggs, tomatoes, mold, dust...
Allergies are an auto-immune illness. So is Endometriosis. When you have one auto-immune illness, you will find you have several others in tandem.
zeptRe: Pain that radiates down the leg — Always right before and during menstruation. For me, the pain feels like it's skin-deep. It doesn't feel like a pulled muscle, nor does it feel like a pinched nerve. The pain is along the inner legs from the labia down to the inner sides of my knees, and the pain is also felt on the top of my legs to the knees. Never on the outer sides or the back of the legs. It's very strange. It's always one of the first indicators that I'll be bleeding again soon.
zeptRe: Hot flashes — Happened just last night. I was laying out some clothes on the bed when suddenly my face and ears felt hot and stinging. I looked in the mirror and could tell my face, neck and ears were deep red and blotchy. Then a trickle - my period arrived.
Sometimes I get full body hot flashes. I've been getting these since I was in my early twenties at least. My mother always scoffs at me over this, saying I'm too young to get hot flashes (even now - I'm 37 - she still scoffs).
zeptRe: Extreme fatigue — About a few days to a week before menstruation, I find I can no longer function normally - climbing stairs or even bending over to pick something up leaves me winded as though I've been out jogging. If I'm riding my bicycle just before my period, I average at a crawl of 4 M.P.H., compared to my usual of 19 M.P.H.
Everything just becomes so physically difficult.
TragicRe: Goserelin (Zoladex) — unfortunatley only temp relief! Couldnt take it longer than 6 months but it stopped everything working! Not healthy but great for eliminating pain!
zeptRe: Pain during periods — To illustrate, sometimes it feels like a tow truck has hooked a rusty chain up to my uterus and is slowly pulling everything out. Sometimes it feels like a white-hot knife has been thrust into my pelvic region front and center to the lower part of my uterus, left to sit for a moment to cauterize, then pulled back out...
Sometimes the pain comes on so fast that I don't have enough time to take my next dose of Tylenol 3, and so I writhe on the floor crying for an hour until the pain passes.
stainesmassiveRe: Laparoscopy (conservative surgery) — Had three laps, it came back each time
stainesmassiveRe: Birth Control Pills — Bled continuously for two months on the pill, periods came in the middle of the cycle etc
IowaGirlRe: Birth Control Pills — This slowed the progression and eased the pain of ovulation since I wasn't allowed to have periods. Back to Back pills. So no more one week a month in bed or curled up in a ball on the floor.
Re: Percocet — Gave me extreme vertigo and leaves me in agony.
Re: Mirena Coil — Have not bled in nearly 2 years! Last lap showed no new endo implants.
Re: Diet changes — Going vegetarian (still eating chicken, though) and eating organic, hormone free products has really helped.
Re: Hydrocodone + Paracetamol (Lortab / Vicodin) — pain in the background but I'm so out of it, I don't mind.
Re: Fentanyl — made me puke, too
Re: Dilaudid — ALLERGIC had seizures in the hospital!
asexualRe: Homeopathy — The first trick is to spot a good homeopath, by asking around. I started treatment with a twit, then tried to self-medicate for a year - a very bad idea! The result: I became very very hairy and it might never go away. That was just from taking too much of the wrong thing for much too long. It changes hormone balance and regardless of what works for you, Mag Mur or Mag Carb in 30C is something everyone can try for pain. It should be available cheaply at a homeopathic pharmacy and I take 5 drops of the one at most 3 X daily on certain days of my periods and i hardly have pain, except during bowel movements (i get endometrioma there if i sleep on the wrong[open] side during the flow) some months. One may need it hourly on a particular day depending on the stage of endometriosis. I got off the pill and onto homeo treatment a year after my surgery, not without many doubts and fears but it has been nearly 5 years. At times it has been worse and I have had to change medications but I have not needed surgery or even a scan since. I have not even needed regular painkillers.
asexualRe: Vitamins / supplements — Going vegan helped my overall enormously. Soy does not seem to affect my hormones, it is my sole protein source because I have allergies, I just keep it GM-free and organic when possible. Hormone treatment wrecks my skin and for that taking evening primrose oil capsules premenstrually helps. It also helped get rid of a breast lump naturally once.
asexualRe: Acupuncture — I didn't notice much change with the thin needles, maybe it only helps with relaxation and that has many benefits. My last acupuncturist used thick needles that hurt like hell. I spent 8 sessions in tears, noticed an improvement but couldn't do it anymore. I would still go if I had someone to come with me or at least drive me from there while the reaction pain settled.
asexualRe: Natural Progesterone — Gave me other pain and skin problems
asexualRe: Natural Progesterone — It gave me other pain and skin problems
asexualRe: Laparoscopy (conservative surgery) — Thought I had a huge cyst that was going to make my ovary break off b4 surgery, then they found lots of stuff to cauterise.
My IBS started right after surgery, anyone else had that experience? Could IBS and food allergies have been caused by the burning off of endometrioma on my bowel walls?
asexualRe: Birth Control Pills — Made me feel crap, didn't help and tricycling was much too painful in the second month. I was weary to get off it when it was suggested by a homeopath but I was so relieved when I did. I am so much better and never needed surgery again, I don't even have a gyne anymore, haven't felt the need to get a scan!
asexualRe: Diet changes — I have always been vegetarian, going vegan REALLY helped - i figured the hormones and chemicals in the milk and dairy must have made it worse. I have stopped using chemically treated female hygiene products and TP (read up the link between Dioxin and endoM). My doctor also remarked that petrochemicals (thus detergents, thus all liquid soaps you expose your skin to) have some type of estrogen that affects hormone balance in women. I tried to go for handmade oil-based soaps and eco-friendly cleaning products and observing the difference now.
bikerkittyRe: Lyme Disease — Causes hormonal allergies, which in turn cause endo.
bikerkittyRe: Hormonal allergies — see the work of Arnold Kresh, and Deborah Metzger. harmonywomenshealth.com
Dr Kresh was an amazing doctor, sadly he passed on years ago. He published several papers on hormonal allergies being the cause of this disease. And after hormonal allergy treatment it did improve many of my symptoms and slow the reoccurance of endo cysts.
The crazy allergies appear to have been caused by Lyme disease which hides in your T-cells and causes your immune system to go nuts trying to fix you.
bikerkittyRe: Acupuncture — this help temporarily
bikerkittyRe: Chi Nei Tsang — this helped temporarily.
bikerkittyRe: Laparoscopy (conservative surgery) — having it lasered off would help for about two years. (I started with stage IV endo), but eventually I had andenomyosis (endo in the uterine wall) so while there was no endo to laser off I still had pain, so they did a supracervical hystorectomy through a laparoscopy site.
bikerkittyRe: Hysterectomy — I had a supracervical hystorectomy, leaving one ovary. I also did allergy treatment for the hormonal allergies. It has not reoccured in the last decade. I recently have had an enlarged ovary possibly due polycystic ovary syndrome, or hormonal fluctuations of some sort. The hystorectomy was the best thing ever! I only wish they would have tried it first.
bikerkittyRe: Physical Therapy — After my 10 surgeries and eventual hystorectomy, I ended up with a lot of scar tissue. I had a specialized PT who worked on breaking it all up. It helped a lot. But it was only helpful after I was "cured". Would not have helped on it's own
bikerkittyRe: Deep breathing relaxation exercises — breathe through that pain!
doesn't really make it hurt less, just keeps your from screaming.
bikerkittyRe: Massage Therapy — temporary help.
bikerkittyRe: Birth Control Pills — Since the problem was allergies to my hormones, this made everything MUCH MUCH worse. I vomited constantly and had my period continually for 3 weeks. Tried progesterone only after my first surgery. Caused symptoms to worsen quickly. I was allergic to estrodil, progesterone, and LH. Most people my doctor treats for endo have hormonal allergies.
bikerkittyRe: Percocet — made me puke
bikerkittyRe: Diet changes — didn't eat meat the week of my period, helped quite a bit. Tried going vegan, didn't help at all. No longer have caffiene which prevents the bloating and some pms symptoms (I have one ovary left so I still get this if I drink caffiene despite being "cured" of endo).
bikerkittyRe: MSContin — made me puke
bikerkittyRe: Fentanyl — made me puke.
bikerkittyRe: Trigger Point Therapy — helped briefly but expensive and didn't last long.
bikerkittyRe: Anti-depressants — Since I turned out to be allergic to seretonin, this was HORRIFIC. It made me suicidal, nauseous, and generally very unwell. And I got really tired of doctors telling me I was attention seeking or depressed, since it was not in fact all in my head.
bikerkittyRe: Infertility — ended up getting a subcervical hystorectomy, since I ended up having andeomyosis (endo in the uterine walls). Only wish I'd done it sooner.
bikerkittyRe: Fibromyalgia — Fibromylagia just means they don't have a real answer, you should get a lyme test from Igenex.com if you have this diagnosis.
bikerkittyRe: Multiple Chemical Sensitivity Syndrome (MCSS) — better now that I treated my hormonal allergies
bikerkittyRe: Allergies and sensitivities — I have severe allergies. One of the main current theories is that endo is caused by hormonal allergies. After treating those the endo improved. The allergies (at least in my case) appear to be caused by Lyme disease since it hides in your t-cells.
bikerkittyRe: Extreme fatigue — Was really from Lyme, though every woman I've talked to with Lyme also had endo.
bikerkittyRe: The chills/freezing — I don't think this is related. It's now resolved for me after treating my hormone allergies and having a subcervical hysterectomy and I still have this. It is possibly related to Lyme though.
stajeRe: Surgical scarring — My endo didn't start until I had my tubes tied and I think it was made worse by having laser ablation surgery. I'm not sure why, but I think the scarring or possibly the general physical disruption created the environment for the endo the thrive.
stajeRe: Laparoscopy (conservative surgery) — Had laser ablation and it didn't make any long term difference. I actually think it made it worse in the long run, creating more scarred areas for the endo to adhere. Would recommend others to look into surgical extraction.
stajeRe: Hysterectomy — I had a supracervical hyst and the removal of both ovaries (due to scary cysting) Seems to have totally stopped the pain, I do take HRT and I don't know that the Endo has stopped (since I'd need surgery to know) but I do know that I feel about a million times better!
stajeRe: Birth Control Pills — This worked as long as I never took an "off" week.
EmseetwoRe: Vitamins / supplements — see "diet changes" above
EmseetwoRe: Laparoscopy (conservative surgery) — Had it, they found some little deposits and burned them off. Came back soon after. It wasn't really worth the time off work, recovery time, and the anxiety related to having a surgical procedure performed. Good for doctors to see inside however.
EmseetwoRe: Tylenol with codeine — I had some tylenol with codeine left over from a former surgery... it helped, but made me drowsy, of course. I napped for six hours unintentionally.
EmseetwoRe: Diet changes — Cut out tomato, chocolate, coffee, tea. Doing better.
EmseetwoRe: Hydrocodone + Paracetamol (Lortab / Vicodin) — Found out that I am allergic to Vicodin... good times.
EmseetwoRe: Motrin — I took about 800 mg about twice daily. I took it to preemptively too.
EmseetwoRe: Dyspareunia (pain during sex) — See Pain during/after intercourse above...
EmseetwoRe: Discharge — During the other, non-period times of the month I have almost constant discharge. I'm not sure if that's normal, I don't even know what normal is! the testing was the same diagnosis as endendo below "white blood cells are high", scratching of heads and hmmms.
EmseetwoRe: Diarrhea — The first few hours of me period are spent on the toilet. Usually feeling like I'm falling apart. I take ibuprofin immediately and lay in bed with my trusty heating pad and a few bottles of water.
EmseetwoRe: Constipation — After the initial diarrhea, I am constipated for the next three days or so. Dreadful.
EmseetwoRe: Irritable Bowel Syndrome — The first few hours of my period are spend on the toilet, having diarrhea.
EmseetwoRe: Dyspareunia (pain during sex) — The first few times I ever had sex (16 years old) I doubled over, sat in the fetal position, crying. I actually stopped telling my husband about the pain for many years 6+ years, because it became commonplace (I don't recommend that at all, always keep open communication with your spouse).
The pain varies based on timing during the month, beginning, after my period. We average having sexual intercourse about twice a month. I initiate it, we do it on my terms only, and talk the entire time. Our sex life is a little less spontaneous, but much better quality.
EmseetwoRe: Low immune system functioning — I get colds often, just after the first few days of my period.
EmseetwoRe: Urinary tract infection (UTI) symptoms — I was just diagnosed with Interstitial Cystitis, which could be related.
GoobergirlRe: Hormone Imbalance — Progesterone deficincy in my luteal phase.
jerseyblueRe: Sugar — A while back I read that some researchers believe that sugar aggravates endometriosis. I asked an infertility specialist about it then and he scoffed at the idea. But there have been two occasions when eating sugary foods (ice cream, cookies) left me doubled over in pain, and both times it turned out I had a large endometriol cyst attached to an ovary and needed surgery. Maybe it's a coincidence, but I'm going to try to minimize the sugar in my diet and see if I feel better.
jerseyblueRe: Motrin — For years I got through very painful periods by taking ibuprofen twice in two hours, then every four hours like clockwork throughout the day for four or five days (waking hours only). While it got me past the pain, it also meant I never mentioned to a doctor how horribly painful my periods were. Too many years of seeing PMS-relief commercials on TV -- I had no idea that my periods weren't supposed to be that painful, or that I wasn't supposed to have back pain with them. If over-the-counter ibuprofen hadn't worked, maybe I would have talked to a doctor about the problem before the endometriosis did such a number on my innards.
jerseyblueRe: Laparoscopy (conservative surgery) — Too much scar tissue and adhesions inside me for them to do anything laparoscopically. The surgeons had to cut me open instead.
jerseyblueRe: Lupron Depot — Pregnancy temporarily stopped my endometriosis, but when it started up again I began six months of Lupron injections. Because of a family history of osteoporosis, my doctor gave me a very low-dose hormone pill to take for those six months. The Lupron helped shut the endometriosis down and as soon as the six months were up I started birth control pills to keep everything under control. The only downside to Lupron were hot flashes at night, which woke me up and led to fatigue and insomnia that persisted past the injections. Eventually I broke the habit of waking up in the middle of the night by stayed up way too late one night to get super-tired. It was like hitting a "reset" button -- it got me to sleep through what was left of the night, and I was OK after that.
taygirl4evaRe: Genetics — my aunt had it and now i have it. she told me to just suck it up or take a naproxen. i feel like saying you had endo and you are telling me to suck up the pain? it's not excruciating but it feels like i have bad period cramps about 90% of the day
taygirl4evaRe: Laparoscopy (conservative surgery) — had a lap and discovered i had endo..still had pain but after maybe a month or so after the lap.
taygirl4evaRe: Naproxen (Aleve) — even though i've used mostly a whole bottle so far of naproxen, it makes my pain worse but sometimes maybe if i didnt eat anything? it helped a little but not much. if i squeezed my stomach muscles i could always feel the pain.
taygirl4evaRe: NuvaRing — i have been on nuvaring for a long time before i even started having pains, and it's funny because that is one of the things they give you to reduce the estrogen in your body, but it didnt work for me!
mmoydRe: Diet changes — cut out gluten, most sugar and all caffiene
EFLLLRe: Laparoscopy (conservative surgery) — Helped with bowel pain (endo attached itself to bowel), but there's still endo in there and still have some pain. It was helpful, but cannot be done often.
EFLLLRe: Naproxen (Aleve) — Made me too tired. Can't go to work, so basically not useful.
EFLLLRe: Birth Control Pills — Tried 4 different ones. Cysts kept reappearing until the current pill, but now breakthru bleeding won't stop.
EFLLLRe: Hydrocodone + Paracetamol (Lortab / Vicodin) — Can only take and fall asleep. Not useful if going to work or school.
allison.l.dyerRe: Caffeine — Caffiene makes my symptoms TERRIBLE!!!!
allison.l.dyerRe: Birth Control Pills — Didn't know I had endo until I came off it after 10 years!
allison.l.dyerRe: Laparoscopy (conservative surgery) — HUGE help right after surgery! Unfortunately, with my stage of disease, the euphoria didn't last long!
allison.l.dyerRe: NuvaRing — Didn't know I had endo until I came off this (between this and BC)
allison.l.dyerRe: Lupron Depot — Wasn't so bad, but, I don't think it helped much. 5 months after coming off I discovered my endo was causing my ovaries and uterus to bind together
allison.l.dyerRe: Massage Therapy — I'm not sure where I would be without it. Helps to break up adhesions, possible link to increased fertility!
allison.l.dyerRe: Deep breathing pain — Pain when I take in deep breaths during certain points in my cycle
jehren29Re: Hydrocodone + Paracetamol (Lortab / Vicodin) — Pain is still there, I just don't mind it as much!
jehren29Re: Herbal treatment — Eastern medicine decotion, called the Leonorus Precious Eight, helped dramatically with dysmenorrhea, temporarily.
Pycnogenol supplement taken 3x day worked well temporarily.
jehren29Re: Lupron Depot — Took with Vivelle to curb hot flashes. Took for 18 months (not recommended), which led to terrible hormonal imbalance. Could not sleep! Had to take progesterone supplements and get off the stuff.
jehren29Re: Birth Control Pills — Helped for cyst, but not for endo.
jehren29Re: Tylenol with codeine — It provides temporary albeit drowsy relief.
AndiPanRe: Lupron Depot — Not enough time to adequately describe my experience with Lupron. I won't take it again.
AndiPanRe: Tylenol with codeine — Too too weak when pain's bad enough to need pain medicine.
AndiPanRe: Lyrica — Weight gain stunk. May or may not have helped headaches. Stopped after about two months.
AndiPanRe: Dilaudid — Just in the hospital. That stuff would make any pain go away, I think.
crizt333Re: Lupron Depot — Gained 10 pounds, had extreme hot flashes
crizt333Re: Constipation — only during my period
scroomRe: Lower back pain — Extreme lower back pain that feels like someone is scooping you out with a spoon. Occurs during cycle and mid-cycle.
chloesparkleRe: Laparoscopy (conservative surgery) — I highly recommend Dr. Camran Nezhat. nezhat.org
chloesparkleRe: Vitamins / supplements — Cutting out gluten and soy has made my healing process feel much more permanent.
rogue0703Re: Coming off birth control — YES YES YES!!
bullybabiesRe: Hip pain — had a "lap" in 2006, on continuous bcp's - seem to help, but if there is any spotting the pain is back and recently been having an aching pain in my hip and groin area (right side only) this is also the side i had experienced low back pain that radiated down into my hip and leg (sciatica) prior to the lap - now it's just in my hip and groin area
Stacey6162Re: D&C, Cone, LEEP surgery — I had cervical cancer and had surgery to remove it. The surgery was successful and I havent had the cancer come back. After my surgery is when I started to get the pain. I went for 3 years with the pain before it got bad enough for doctors to look into it. After seeing a GI doctor to rule out any stomach issues, a CT to rule out a tumor, a periocentesis to rule out PID, they finally cut me open and found around 10 spots of endo in my peritineum cavity, just under my uterus. They removed what they could see, and started me on the Lupron Depot shot. I had no pain for the first 3 weeks after surgery. When I first started the Lupron I didnt have any pain with the first shot. After the first one, the pain came back even though I am still getting the shots once a month. I dont know what to do anymore.
JeanetteRe: Bloating — I get such bad pain from excess gas and bloating that I make an effort to stay away from fizzy drinks!
JeanetteRe: Endometrioma — Had a 20cm chocolate cyst (endometrioma) removed in my second endo surgery.
endendoRe: Hot flashes — "Not now. Had them years ago from a birth control pill that my body did NOT like at all! Also had them years ago when I took danocrine."
endendoRe: Burning pelvis — "Yes, at times. This is one of those "hard to explain" categories for me..."
endendoRe: Hypothyroidism — "I have thyroid nodules. Dominant nodule was negative on fine needle biopsy but needs to be followed. Getting thyroid ultrasound next week on new "lump" that may be a cyst?? Thyroid blood levels are OK, though."
endendoRe: Low immune system functioning — "There is no doubt that I have this problem..."
endendoRe: Dyspareunia (pain during sex) — "This has ALWAYS been the case. It is just terrible. It's a major challenge. (See my dyspareunia entry above for more details)."
endendoRe: Sleep disorder — "Obstructive sleep apnea, fibromyalgia, depression-related sleep disturbances..."
endendoRe: Headaches/Migraines — "When I get headaches, they are TERRIBLE but I don't get them as often as many people I know (no migraines). So I checked "no" but I certainly have had debilitating headaches. Mine aren't tied to my cycle. They are usually sinus/allergy-induced or actual sinus infections... Also, MCSS causes me headaches. This isn't one of my most common symptoms, though."
endendoRe: Pain that radiates down the leg — "This is a major problem... After 6 abdominal surgeries, I began to have SEVERE groin pain that radiates down my leg. I had had 2 nerve blocks and had put off surgery for 4 years despite HORRENDOUS "off the charts" pain. I just did ***NOT*** want a 7th surgery. Finally, out of desperation... I agreed to surgery to cut the genitofemoral nerve. (An inguinal hernia had been ruled out in surgery #6). Long story short, the genitofemoral nerve AND lateral femoral nerve were both cut. This was NOT what was discussed prior to surgery. This affects my left leg... The kicker is that the surgery didn't give me ANY relief!!!! I had SEVERE post-surgical complications including "phantom pain" (similar to what amputees get). My doc tried several methods to treat this pain to no avail. I was referred to a special neurologist (I already has neurologist #1 treating my neuropathy). No luck. ***THE ONLY RELIEF I HAVE GOTTEN FROM THIS DEBILITATING PAIN IS ACUPUNCTURE!!!! ***"
endendoRe: Discharge — "This happens on occasion... I've had some "mysterious" issues where the gynecologist or pelvic pain specialist does a culture and says, "I don't see any yeast but your white blood cells are high". Then they typically scratch their heads in puzzlement and give me a (prescription) topical cream with both an anti-inflammatory ingredient and an anti-fungal ingredient... just to cover all the bases. They suspect it's actually "dermatitis" of the vulvar area. What fun! Apparently, I'm allergic to my own underwear when I dare to buy new stuff... no matter how many zillions of times I wash it before wearing it. With my dye allergies AND formaldehyde allergy (it's often used in treating garments prior to sale), it takes MANY washings to get all of the offending chemicals out! I may also be reacting to sanitary pad adhesives. (Trust me, it doesn't matter how thick a pad is. If I'm allergic to something, it will find a way to cause a reaction for me)! I've also had my share of yeast infections over the years..."
endendoRe: Bloating — "This happens in association with GI problems from food intolerance. I'm also bloated from having had 6 laparoscopies and 1 laparotomy. I haven't been able to wear jeans since the mid-1990s. WAY too painful... Loose pants are a must!"
endendoRe: Blood clots — "From the age of 13, I have had some really serious issues with blood clots. (I'm 39 now). This can be downright scary at times. Fortunately, the homeopathic remedy that manages my bleeding (from VERY, VERY heavy before to more manageable now)... also helps with the blood clots."
endendoRe: Back Pain — "I do get extreme back pain at times but this has been fairly well-controlled since I have been using acupuncture. I've had disc problems and kidney stones contribute to back pain. As far as endo, I believe it accounts for lower back pain on occasion. In the overall picture, this is not as much of a problem for me as some of my other issues but I have certainly had times where my back pain was very severe and it required physical therapy and massage therapy. Acupuncture seems to keep it at bay now... mostly."
endendoRe: Constipation — "Not often for constipation. I almost always have diarrhea. Sometimes with my IBS, it alternates but it's almost always diarrhea that is my big problem."
endendoRe: Pain during periods — "This used to be INCAPACITATING!! It is more manageable now (age 39) than in my teens and 20s. It's still an issue... just not as severe."
endendoRe: Pain all the time — "Pain all the time" for me isn't always confined to the endometriosis itself. I have many endo-related illnesses that also cause pain. It can be hard to pinpoint which illness is causing which pain. It's sometimes impossible to separate that out with so many overlapping symptoms with many related conditions...
endendoRe: Nausea — "Nausea with periods and sometimes with ovulation too... Nausea can also come with the IBS (associated with endo)/food intolerances. Also, when pain is severe enough (any time of the month), it can induce nausea."
Re: NuvaRing — very helpful - easy to use!
Re: Mefenamic Acid — Did not even touch the pain! severe cramping and GI distress
Re: Vitamins / supplements — This has been one of the most effective treatments for me - cutting out almost 100% of gluten and dairy. Also adding supplements described by Dian Shepperson Mills. very helpful.
Re: Naproxen (Aleve) — Didn't work well and caused bloating/gastro-intestinal distress...which basically means it made my endo worse.
briskladycupidRe: Cesamet (Nabilone) — Ceasmet (nabilone) is a cannabinoid medication that is traditionally used to treat the extreme nausea and vomiting associated with chemotherapy. It was also discovered to have beneficial pain relieving properties, and is gaining popularity in being prescribed for this purpose.
I started taking Cesamet (nabilone) back in June 2006 after fentanyl failed to relieve my pain, and I was taking large amounts of percocets and still in pain. The Cesamet has been a wonderful relief for me. To my quality of life, it means that I'm able to work 10-16 hour days and still function in the other areas of my life. It means that I'm up & around more often and not exhausted from trying to hide the true extent of my pain from others. Cesamet has been a wonder medication for me, although it has played around a bit with my memory and concentration abilities. But overall I'm happy with this pain treatment the most as it has made a real difference.
MelanieRe: Hysterectomy — I was very happy to have a hysterectomy to remove my cervix and uterus. After years of dealing with the pain of endometriosis and dysmennorhea (spelling?)the doctor found that I also had cervical cancer. The decision to have a hysterectomy was very easy to make! Now I am pain free and cancer free. I also got to keep my ovaries so I do not need hormone therapy!
MelanieRe: Naproxen (Aleve) — This for me (in the form of Aleve) mixed with Tylenol worked really well for pain control!
Re: Taijiquan (Tai Chi) — I am now pain free due to regular practice of taijiquan. See my comment above.
Re: Vitamins / supplements — After a major surgery during which I have been diagnosed with endometriosis I have changed my diet as directed by Diana Shepperson Mills who co-authors a wonderful book about endometriosis. Before and and after the surgery I felt like an open can of pop. I felt like my stomach was degassing - if that makes sense. I was also so bloated that I looked like I was 6 months pregnant Diana pointed out to me that I was eating too much of certain foods. She helped me come up with a diet that was customized for all my health conditions. While this diet alone did not eliminate painful periods it helped me improve my general health. This diet in combination with taijiquan helped me to be pain free.
Re: Taijiquan (Tai Chi) — I had a surgery due to an enormous chocolate cyst attached to my ovary. The ovary, cyst and endometrium, which was spread all over my pelvis, have been removed. Soon after surgery the painful periods started again. While surgery saved my life I found taijiquan the most helpful of all modalities in managing my painful periods. This modality requires patience and discipline. It is certainly not as easy as taking a pill. One has to practice on a regular basis. I found a specific exercise, don-yu, the most helpful. Many TTCS® instructors helped me to understanding this exercise better.
endendoRe: Meditation — Meditation is powerful. My husband and I took a class on it from my acupuncturist. My acupuncturist is a big fan of Dr. Jon Kabat-Zinn. Dr. Jon Kabat-Zinn has written books and made guided meditation tapes that may be very helpful for patients. :) Jeanne
endendoRe: Homeopathy — Homeopathy is fantastic! I am fortunate enough to have a close friend who has been trained in homeopathy and she helps me in selecting the homeopathic treatments that are appropriate for me. I would suggest finding a good naturopathic doctor for advice on which homeopathic remedies are best for one's condition(s). Homeopathy really works! It should not intereact with Rx medications but taking the wrong honmeopathic remedy or taking it too much can do more harm than good. Homeopathy is a great option for highly sensitive individuals who cannot tolerate Rx meds as well. I would not suggest relying solely on the conditions listed on the remedies; I would consult with someone who is trained in homeopathy when pursuing this treatment option.
endendoRe: Acupuncture — Acupuncture has helped me and many of my endometriosis support group members. I cannot recommend it highly enough. I suggest calling around one's area and finding a board certified/licensed acupuncturist. My acupuncturist uses thin, flexible Japanese-style needles that do NOT hurt. It relaxes me more than anything else and I have been going for over 7 years. Research on acupuncture has shown it can improve fertility as well. Since many women with endometriosis experience infertility as a symptom, I think this point is worth mentioning. :) Jeanne (from www.endendoatblogspot.com)
endendoRe: Chi Nei Tsang — A member of my endometriosis support group gets Chi Nei Tsang treatments and swears by them. She has tried many other treatments and this modality is at the top of her list of choices for treating her endometriosis! She just loves it. :)
© 2013 CureTogether. Data is submitted by members and does not constitute medical advice.