# How do they test for endometriosis



## sherri

Does anyone on here know how the gynecologist tests for endometriosis, like to see if it is on a persons bowels and stuff?? Is there something special they have to do or can they tell by just doing a pelic exam??


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## 20960

ENdometriosis is tested by a laproscopic surgery they make a small insecion and then put a camera in to see if there is endometriosis tissue in the abdomen. Sometimes if its really bad they can tell from an ultrasound but ussually thats harder to see.


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## rockingirl

Beanie said:


> ENdometriosis is tested by a laproscopic surgery they make a small insecion and then put a camera in to see if there is endometriosis tissue in the abdomen. Sometimes if its really bad they can tell from an ultrasound but ussually thats harder to see.


However, you can have very small endometriosis that doesn't show up in laproscopic surgery, but can still cause you a lot of pain. If your gyno suggests surgery, you might as well do it just to rule it out. I had it, and it was no big deal. Just make sure you take off like a week afterwards, because they told me that I could go back to work after the weekend, and I still felt like death then.


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## AIRPLANE

Currently, the only way to check for endo seems to be laparoscopy. However, it needs to be done by someone who specializes in endo, as it can be difficult to recognize and properly treat. So it can be difficult finding a physician willing to do it. Even though the term 'endometriosis' was coined many decades ago, it is still poorly understood and proper training for it doesn't seem to be very widespread. Many gynos will prescribe birth control or other hormone meds, and if they don't work, they assume it can't be endo, which is often not the case. Many physicians also seem to think that hysterectomy and menopause will stop endo, which again is not always the case. In fact, some women with endo have actually developed it after hysterectomy.In many cases, endo is not diagnosed until there is difficulty becoming pregnant.Also, one of the issues endo can cause are adhesions, which can cause many symptoms, including IBS-like ones, as well as pain and Pelvic Floor Dysfunction, as the adhesions can be as high as the lungs and down to the recto-vaginal septum. And of course these can be worse during hormonal fluctuations, so the symptoms may be worse at some times of the month, but can be felt all of the time as well. Many physicians believe that the symptoms should only be felt during certain times of the month, which again is not always the case.I have been to two physical therapists who can feel the tightness in my abdomen, which they believed were due to adhesions. They both gave me suggestions for trying to treat them without success. Unfortunately, many physicians don't seem to be able to feel them, and if they could, you would think that this would be a possible indication of endo and warrant further investigation. Of course, adhesions have other causes as well but still can cause similar problems as endo.A good read on the topic is "Endometriosis And Other Pelvic Pain' by a Dr. Susan Evans from Australia, who has done numerous endo surgeries. There is a list of endometriosis websites near the end of the book. Some of them are:www.ecca.com.au (this is her clinic website)www.endozone.orgwww.endocenter.orgwww.endometriosisassn.org


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## Lookin'foraLife

Can they detect endo anywhere on the digestive tract through one laparoscopy? The area is so extensive....


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## AIRPLANE

Yes, finding all of the endometriosis can be difficult. That's why an endometriosis specialist is the best bet for the best possible diagnosis and treatment. I had an exploratory done at a University back in 1990. I was told that my insides were a mess but they didn't know why- said my uterus was enlarged and distorted so they thought removing my uterus would fix things. I did have my uterus removed years later with no real change except for not having to deal with long, very heavy periods.A good website for loads of information is HysterSisters- although it is supposedly for those who have had or will have hysterectomies, there is a wealth of info on just about everything for reproductive issues. There is one post by the site which lists a few physicians who were recommended by their readers for endometriosis. The list is short, but fortunately there are a couple of docs near me and I am considering seeing one of them later this year. I figure the worst that can happen is yet another brush-off, but after having this close to half of my life, I'm used to that and apparently so are a lot of other patients!Here is the link-Endometriosis Specialists/HysterSisters


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## Ashers86

I don't mean to interrupt the thread... just simple quick questions here.I've always been told it sounds like I have Endo - had an Ovarian Cyst at 12 (didn't deal with a gyno because of age), which exploded, and my GP ultrasounds me regularly if I complain of pelvic pain as apparently I can just as easily have one again.When I turned 14, I asked my GP to put me on birth control pills after hearing a few of my friends started it because it's helped lighten their periods. That was a miracle to me - the blood would run out of me like water and I'd ALWAYS have to double up to get a decent nights sleep... Not to mention that the pain/cramps have always been so intense that I could barely walk; throbbing in the joints of where my legs met my hips. I felt like a walking bloody sore!For the first while, it worked great! It got lighter, and the pain wasn't so bad... but then a few years later (17/18-ish), I started getting the side pain again as if I might have a cyst. Turned out to be a false alarm, but since then, the BC pills did nothing. When I turned 20, I got switched to a new one (supposedly also a higher dose pill - my GP likes to tell me that the pill won't help to prevent pregnancy







)... it also worked good for a few months, then pain again.Now I'm at a point where it alternates: one month it won't be a big deal... slow and short... but then every other month, I'll pour and throb and cramp up to the point where I want to crawl into bed for the rest of my period; I hadn't felt that way since waaaay back!Anyways, because of the cyst history and the pain issue, I've been told I could have Endo. To be honest, I get cranky as hell with PMS anyways, so I endure the pain as it being how my body naturally wants to work. Is there some other criteria to Endo though? Should I bother getting checked? I mean, if it's just the crampy periods... I'm used to it - I don't feel like wasting my time if it's not going to do me any harm. (I mean, look what else we put up with here!







)Thoughts? I don't have a gyno still...


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## Cherrie

Hi a scope is "the only way to know for certain" (according to the Mayo clinic site), but there are other ways to check and see, although they won't be that certain: Pelvic exam and ultrasound may help discovery bigger area or cysts. And boy, the pain, can I relate! I personally feel that the scope (or surgery) is invasive and personally I wouldn't want to do it if it's not absolutely necessary. And plus, not everyone who has painful period has endo -- there's a fancy medical term for "painful period" (sorry I forgot what the term is), which is actually what the dr.s say that I have... You might want to ask your dr. about that and see which one s/he thinks you're most likely having...


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## AIRPLANE

That'a a tough one. I'll admit that I have had some procedures done in the past (from 1990 to 1998) that if I knew then what I know now, I wouldn't have had them done. But, as they say, hind-sight is 20-20. Plus, I had no computer then (don't know how many people did) so doing research was more limited then than it is now. And of course, no access to BBs such as this one and many others to get opinions or past experiences from others with similar issues, or help trying to find a physician who is best for your situation.And from what I've read, there are more treatments now than there were then for things like fibroids and endo besides hysterectomy, the pill or hormones. Sounds like there are much less invasive treatments available now, and hopefully more docs who bother to study endometriosis as it can be complex and so different from one case to the next.Would possibly having children be in your future? If so, being checked for endo by a properly trained doc might not be a bad idea, because endo, especially if it creates adhesions as it progresses, can cause a problem with conception. So, IF you have it, the sooner it is dealt with the better. If the doc is properly trained and removes the endo completely, and possibly prescribes preventative meds, or you try taking supplements, it won't necessarily come back. (There was recently a report about how lycopene can help with the adhesions from Endo- but it wasn't clear if it helped existing adhesions or just aided in preventing new ones) Also, I'm guessing that the unexplained pain in your side could be due to endo if the ovary thing didn't pan out. Or, at least that's what your doc is wondering and wants to check it out. On the other hand, if you are positive that having children is not in your future, you may be just as well off with a wait-and-see approach if your symptoms are really not that bothersome.I had an exploratory lap back in early 1991. It was no big deal. I was given a Lupron injection awhile before to make sure that I didn't have a period at the time- which was good. Yes, I did have hot-flashes! My periods at the time were very heavy and clumpy and were getting progressively longer- it was to the point that I would still be bleeding from the last cycle when I'd get PMS for the next one. And even with the largest tampon and a pad at the same time, sometimes I'd get home from work and found my protection failed me but when your periods are so heavy it's hard to tell when time has run out and you need another change already! I did have a problem with fibroids, but would have put up with the periods if my other symptoms-pelvic and side pain- and extreme tightness from near the lungs down to the groin- could have been dealt with.( I did have my uterus removed in 1998 but except for no more periods, my other symptoms remain.)Also, if you have Endo inside the uterus- I believe it might be called adenomyosis (sp?)- that could cause heavy periods. You do wonder if it would be ovarian related, but not necessarily a cyst- which you've had ruled out- because, (correct me anyone if I'm wrong) don't the ovaries alternate releasing eggs each month? If there were endo on one side by an ovary, maybe(?) it could explain your alternating heavy cycles and increased pain? I'm just theorizing, have not read of any specific cases of endo with alternating heaviness of periods.The docs who did the lap looked very puzzled- they said my insides were a mess but didn't know 'why" (maybe endo? I didn't mention it at the time because I thought it was their job to tell me what it was!) They also said my uterus should come out, but I decided to wait because I knew that wouldn't solve my widespread symptoms. I eventually gave in but my suspicions were proved right. But again, hopefully attitudes have changed and now some in the profession realize that hysterectomy, the pill, and hormone treatments with horrid side effects don't fix everything reproductive-wise!Don't know if I've helped with any of your questions. I'm thinking of seeing one of the docs on the HysterSisters list- although I admit I'm reluctant to do so with so many failed attempts in the past. I also wonder if they will say since I should be getting near menopause that it's not worth it- but from what I've read menopause alone will not fix any damage done by Endo if it has been severe enough or long enough in duration without proper treatment. For now, I'm trying supplements, some of which are expensive. I just started a new one I got on Ebay called Endo-Ex by Native Remedies. Also take a few others- including one called Neprinol and also lycopene capsules.


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## Ashers86

AIRPLANE - Not sure what to say, but I totally understand what you're saying.You may have something there with the 'alternating' with the ovaries too... I really don't know too much about this stuff though so I don't feel obliged to comment (loss of words).BTW, the tampon and pad - I've been there too! That's what it used to be for me just to go to school...


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## AIRPLANE

Understand completely.And usually, endometriosis is in areas where blood forms every month, just like inside the uterus, but it can't escape. That's what causes pain and inflammation and leads to adhesions which sometimes results in fertility problems, although I still get the impression that endo somehow can cause heavier periods as well.Whatever you decide, good luck and IF you end up having a lap I hope it's done by someone who is good at diagnosing/treating endo. Ask questions about their experience and how they treat endo, if it were to come to that, and what their success rates are. Do they often have to do multiple repeat surgery on the same patient? If the last answer is yes, I might try someone else!


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## Guest

Hi there,I just wanted to get my message across to suffering women out there. I was misdiagnosed with IBS for years. I changed my diet drastically and nothing gave me any relief. I was wasting away and my life was spiralling out of control. Some days I couldn't get out of bed and other days I was in such constant pain that I became a monster. My saving grace was a wonderful doctor who booked in for surgery the next day after my consult! He found endometriosis and adenomyosis (which is not too commonly known...but the reason for my post!)He removed it all, I was in recovery for 2 weeks and a month later I am back to my normal self! Adenomyosis is where the endometrium grows inside the uterus walls and it can cause a lot of pressure on the bowels, which causes you to frequently run to the loo with the runs. Painful, cramping runs. It is almost always misdiagnosed as IBS in young women. So my advice is this: If you have been diagnosed with IBS, have never had food intolerances, have always had heavy periods and are at the point where you are thinking about ending it all - go see a GYN specialist....preferrably one who specialises in Endometriosis. If you'd like to discuss it more - I am more than happy to chat or provide further info. I just want women to know that heavy periods - and doctors misdiagnosing it as IBS is NOT NORMAL!- Belle


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## Cathy in CA

Hi all... Wow...I sure wish this forum was available when I was younger and suffering from severe endrometriosis! My awful periods started at age 8 then bad Ulcerative Colitis around age 14 so, between the 2, I was in the hospital a lot. I didn't know any other young girl so chronically ill, in pain and fainting from anemia, and every month the 2 worst weeks increased my diarrhea... I was always so embarrassed. I married at 22, not diagnosed with endrometriosis yet until a surgeon first visually saw it when I was 23. Naturally I wanted to have a baby so I found a gyn-ob doc who respected my wishes about holding off on a hysterectomy. I want to advise all of you to be your own advocate. Speak up when you know something is different. My doc doubted my belief that it was growing on my bladder, but because of my always necessary previous surgeries, he decided to check me with a 30min laparoscopy, a relatively new technique then. But he ended up doing full surgery for over 2hrs because it was all over my bladder; potentially dangerous if left there. So I was right. Eventually though, I told him I was tired of the pain,hemorrhaging,anemia, and knowing that having only 1/4 of 1 ovary and one bad fallopian tube left put me in a very low possibility to become pregnant, not to mention I was making my poor sweet young husband afraid to make love to me because of intense pain. One thing I don't see anyone mentioning here is that removing the uterus is not a cure... it's the ovaries that promote the hormone changes that influence the endrometrial cells to slough, so it's necessary to have an oophrectomy. I think that nowadays the whole thing can be done by laparoscopy which is a much shorter recovery (plan on 2 weeks or so). I was only 27 when I finally gave into the surgery and very soon was amazed at a life without 10-14 days of a heavy,agonizing period. Then I was just left with challenging bowel disease because that was a whole other entity of it's own. I want to also say that not everyone has such a severe case as I did. There are varying degrees of it and oddly, it doesn't always correlate to the level of pain. Many women have babies. Besides the joy of a baby, the long rest from menstruating can really help endrometriosis, which is why BC or other hormones that stop it for a long time are tried. By the way, 18mo after my total hysto/ooph surgery, we welcomed our first adopted baby girl, and then 20mo later a second, from Korea. They looked nothing alike, but I was often asked if they were twins-ha! It helped that during those hard years of surgeries, we were already on adoption lists and getting higher to the top. So, except for my ongoing medical problems(now-IBS+RA), I've been very very blessed. I wish the same for all of you. Cathy in CA(California)


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## AIRPLANE

Another thing about endo- also adhesions with or without endo- is that many physicians refuse to consider them until women have difficulty getting pregnant, as Mary Lou Ballweg mentioned in one of her books. In other words, it is OK for women to suffer unless it interferes with the continuation of the species- THEN the medical community will consider investigating!


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## *Amz*

They do a laproscopy to find out if you have endo and where it is. Im going for one sometime, just got refered to a gyno.


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