adhesions, ovarian cyst tangled in them, hormones, constant pain,

From: Elayne (
Sun Feb 6 22:54:45 2005

Hi, Has anyone had a similar situation to mine? I have lots of adhesions from many surgeries since I was a child with Hirschsprung's disease.

Surgeries include partial colon removal (with peritonitis afterwards), temp colostomy, appendix, gall bladder, two ovarian cysts, then complete hysterectomy with edometriosis. I recently got out of hospital after emergency admission for severe pain.

Had 8 cm ovarian cyst (though I supposedly don't have an ovary left) that had squashed my ureter, causing it to back up and enlarge my kidney. They put in a temporary stint (I'm learning all this new medical language the past few weeks) to keep my ureter open. I was taken immediately off estrogen and put on norethindrone to shrink the cyst, which it did. But because the hormone caused a severe depressive episode, I've had to go off it.

I'm still having abdominal pain, the cyst has shrunk but is expected to return since I can't take the hormone, I'm having mood swings, etc after going off estrogen so suddenly. Gyn doesn't want to do surgery because he said he couldn't even find where the ovary was a few years ago when he did my hyst and edometriosis removal. So I feel very stuck, still having abdominal pain. Surgeon thinks I would most likely end up with a permanent colostomy if I had to have surgery again because it was too easy to perforate the bowel since everything is so adhered together. I asked if he could call in a dr that specialized in adhesions to help with the surgery if I needed it, but he said there weren't any dr's that really specialized in that. Since I will probably need surgery within the next year, I'm afraid because there doesn't seem to be anyone who knows how to deal with the adhesions without me ending up with a colostomy or peritonitis, etc etc. I can tell my dr is truly scared to do surgery on me again because of all the probable complications.

Is he correct, or is there a better solution or type of surgeon? I'm really afraid actually, and don't know where to turn. Has anyone been through a similar situation, and what happened? I am glad I found this site, and that I'm not crazy, and these pains do exist (I know they do, of course) even though so many dr's have brushed it off as just irritable bowel or just because I'm a woman they think it's in my head. Can anyone relate?

Thanks alot for reading, sorry for the long post.


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