Continuing a talk about Endometriosis…

posted 3 years ago in Wellness
Post # 3
Member
989 posts
Busy bee

@bethbooth:  I had extremely painful and heavy periods, and after years of trying different pills and prescription painkillers for that time of the month, I had a diagnostic laparoscopy. No endo was found, but I had a few adhesions – like my bowel was stuck to my appendix (might explain why I would have a BM only once a week, post laparoscopy it was the same time every day for months). My Mum had had endo and although it was only a tiny patch, it caused her so much pain. Once it was removed, the pain stopped. After that, I went on Implanon which significantly reduced my pain, but I had random bleeding, until I was bleeding all the time (about 18 months in). I now have the Mirena and very little pain (random cramps) and no periods at all. It’s coming up to the 5 year mark, so it needs to be replaced. I felt funny about getting an IUD, but it’s been the best thing for me out of everything I’ve tried.

Can you see a gyn and ask for a laparoscopy? 

Post # 4
Member
3693 posts
Sugar bee
  • Wedding: August 2013

Six months ago I went off the pill and got a copper IUD. I love being off hormones, but I think I now have endometriosis. My mom had it, and had a hysterectomy in her forties. I’ve gained eight pounds since going off the pill, all in my midsection — I am so bloated and sore. I have pretty much constant abdominal pain, sometimes dull, sometimes crampy, sometimes sharp, and many times it’s a burning pain. The pain is much worse around the time of my period. I’m nauseous a lot, and I also have a lot of diarrhea. Exercising (like riding an exercise bike) makes the burning pain come back. 

I had a colonoscopy last week, and they had a hard time inserting the scope because my sigmoid colon is fixed in place by what they think are adhesions. Since I don’t have diverticulitis and I’ve never had abdominal surgery, the doctors are assuming that it’s caused by endometrosis. They won’t know for sure unless they order a laparoscopy, and I’m not sure if they will or not (and if they do, I’m terrified to have one because I can’t take narcotics (they don’t work for me like they’re supposed to), and I really can’t take any more time off from work).

Post # 6
Member
729 posts
Busy bee
  • Wedding: October 2013

@bethbooth:  I have endometriosis, and some of what you describe could be endo symptoms. Symptoms vary from person to person though, so it’s hard to say. It also depends on where the endo is, if it’s there. I have rectovaginal endo (among other places) so for me, sex is often incredibly painful. However, if you don’t have endo there, it might explain why you don’t have this problem.

A couple of points:

Retrograde menstruation is one *theory* of endometriosis and what causes it, but from what I’ve been told/read lately, it’s been largely debunked. My surgeon explained to me that RM happens in a lot of women – way more than the ones who end up with endo.

Truthfully, no one knows for sure what causes endo, but I wouldn’t bet too much on medication. There are a lot of other factors at work that have a stronger case, such as genetics. (That’s personally where I’d put my money, but that’s just me.) Endo isn’t actually a “new” thing – it’s been around a long time. However, women’s healthcare has been on the backburner a long time too, and changes in medical technology have made *some* progress in diagnosing.

In any case, a lap is your best bet. Endo is famous for not showing up on tests such as ultracounts or CTs. I have stage 2 endo (at last surgery) and have never had anything (except light powder burns in one spot) show up on any tests. They are pretty unreliable in most cases.

Feel free to PM if you want to talk more. I’ve been dealing with this for 16 years, and I do a lot with an advocacy/support network.

Post # 8
Member
471 posts
Helper bee
  • Wedding: November 2015

I have the Mirena IUD and yet I have stage 4 endo. I was suppose to have my left ovary and tube removed last month, but the doctor is having me see an Gyno Oncologist because the endo has attached itself to my bowels, parts of one of my kidneys and my broad ligament. I can’t wait to have the surgery to move on from this nightmare. My periods are better now with the IUD (I’ve had it for almost 2 years) but the constant pain in my hip and lady bits area is driving me f’n mad. 

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