Irritable Bowel Syndrome Message Boards

Sorry to butt in here ... I don't read the diet board much these days -- because I actually don't have IBS, I have endometriosis. (But I still hang out here because I am sad and pathetic.) I do remember a lot of your past posts because your symptoms were so close to mine. And, like you, I had godawful attacks that nothing seemed to help. For a long time I was eating nothing but bread.

So ... I have to ask ... was your endometriosis surgically confirmed? Because there is NO WAY to diagnose endometriosis except by physically looking at it and having a pathologist confirm. Because you say that you had a "slight" case of endometriosis, this makes me think that you probably did have a laparoscopy, since you also can't stage endo without the surgery.

You might find this article on intestinal endometriosis interesting. I would also highly recommend all of the information on the website of the Center for Endometriosis Care -- I actually just had surgery with them. It was a 1700-mile round-trip and cost several thousand dollars, but I felt that it was my best shot at getting rid of my endometriosis.

Anyway, when I was at my sickest, I was having really bad D, pain, and cramping. I wouldn't say that nothing helped, really -- I took scads of Imodium and Levsin, and without them I would've spent all day in the bathroom. BUT, I had to take massive quantities to get to the point of them helping. When I went off my birth control pills (late July 2005), I began experiencing horrific painful attacks about once a week -- sometimes more, sometimes less -- where I had ungodly awful awful awful pain in two localized spots, one on the left and one on the right. I was able to eat less and less and had to pop more and more pills. I started having vaginal bleeding during these attacks, went to my doctor, got sent to an ob-gyn for possible endometriosis, and underwent a laparoscopy (December 2005). I had a LOT of endo, and, in particular, I had lots of scarring around my appendix, which was stuck to the bowel wall.

Post-surgery, it took a couple months but the D pretty much went away except during periods. Unfortunately, the horrid cramping attacks continued, though they didn't happen nearly as often. I stopped having the localized pain on my right side after surgery -- so I guess that it was the appendix that caused that pain. The left side was still painful but wasn't nearly as bad. The pain, however, didn't improve much and just got worse as time went on. That's why I ended up deciding to have surgery again, this time with the best expert I could find. The jury's still out (I'm only a week post-op), but, they did find a ton of endometriosis -- I even lost half of my right ovary. In particular, I once again had a lot of it in the cul-de-sac area -- endo in this spot almost always causes bowel problems. This is also one of the toughest spots to get the endo excised, and usually if you've got it there then unless you have a good surgeon it comes back.

I did end up going back on birth control pills back in April/May-ish because I was so miserable, and after 3-4 weeks I don't think I had any more of the horrible cramping attacks. I went off them again six weeks or so before surgery to make sure that the endo would be at its most visible and I did have a couple of those attacks, but not bad considering how often I used to have them. I've got my fingers crossed they are gone for good!!

Anyway, I guess I sort of wrote a novel here, but the bottom line is that I hope you're dead positive you've got the endometriosis totally ruled out for the source of your pain. I never thought that I had endo -- even when they were wheeling me in the OR for the laparoscopy, I figured it would be just like all the other tests I had where they came up totally empty. Somewhere on the website, Heather has a list of disorders that need to be ruled out before IBS is diagnosed -- I wish I had made sure I diligently ruled them all out rather than just airily dismissing them as "Oh, I'm sure I don't have that." Endo can definitely present itself as mainly GI symptoms, even if your periods don't seem that bad.

Oh, and as far as anti-spasmodics go ... Levsin didn't work that great when I took it as-needed -- it wasn't until I was taking it regularly (every four hours) that I really noticed a difference. Towards the end I also took about 3x what the doctor told me to

but I will of course not recommend that. I rarely take Imodium or anti-spasmodics anymore (and I can eat real food, too

).

I hope you can find *something* to help. No one should have to live like that.

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jen

"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC

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