Endiometriosis, Gatrointestinal Difficulties and Wanting Bowel Resection--help!

[Mya Symons]

It's my understanding that many women with ME/CFIDS have Endometriosis as a symptom. I need some help from those with experience.

A few years back, I had a hysterectomy. Later, I found out I had undiagnosed Endometriosis. I have had problems with old lesions and scar tissue for years now. Apparently, my bladder, uterus, ovary, and sigmoid colon were attached before the hysterectomy. My ovary is still attached to my sigmoid colon and I have scar tissue inside the walls of my colon. It is not moving the way it should. Sometimes I do not go the bathroom for days. When I do, and it passes through the sigmoid colon, it is very painful. Sometimes the pain literally floors me. I have to take a medicine that induces diarrhea every day to get everything through the sigmoid colon.

I have gone to a gastroenterologist who went in with a microscope. He decided that there was enough room on the inside. Thus, now I am having a problem convincing my doctor that I need something else done. My only choice would be to have part of my sigmoid colon removed and get a bowel resection. I am so uncomfortable and desperate enough now to want this done.

My problem is I don't know what to do next or how to convince my doctor. I think I need a doctor who would be willing to examine the outside of the colon, instead of just the inside. Perhaps an endometriosis specialist.

Has anyone else gone through something similar or have advice on how they would proceed if they were in my situation?

 

[ahimsa]

I have not gone through any similar problems myself. But I did have severe pain from endometriosis for many years. I'll share my experience and hopefully some of it can help you (not sure what parts will be relevant -- hope I did not type too much).

At first I tried all kinds of natural treatments (e.g., changes in diet, evening primrose oil) and also lots of pain killers (started with ibuprofen and then went to prescriptions like Toradol/ketoralac, which I took too long, probably was not good for me). I had pain all month long, even not during my period, and it escalated to "screaming in agony" level pain during my period. I tried to stay under the heating pad during those times since that helped the pain a bit.

I looked into various other treatments (e.g, GnRH agonists, drugs which block hormones and put the patient into medical menopause) but I thought those might not be a good idea for a patient like me, one who was already trying to deal with ME/CFS and Orthostatic Intolerance (NMH).

I finally went to an endometriosis specialist. I had laparoscopic surgery in 2000 to remove the abnormal endometrial tissue (by excision, cutting out all the endometrial lesions that were found, not laser/burning). That worked for me.

I have had only minimal pain since my 2000 surgery. It's funny that the painkillers that they gave me after surgery would have been much more helpful all those years BEFORE the surgery. Before surgery I practically had to beg for pain killers. After surgery I barely needed them.

The soreness from my surgery was NOTHING compared to my endometriosis pain. But surgery is visible and so any pain is "real." Pain that can't be seen is somehow not as "real."

I share this point because I think maybe that's part of what's happening to you. Your doctor can't see anything that could be causing you such pain so he is dismissing it too lightly. Doctors need to believe patients more often. it seems reasonable to me that your pain could be from endometriosis lesions and/or scarring and adhesions from former lesions.

According to my surgical report my endometriosis lesions were primarily near my right ovary and tubes. I was lucky in that I had no bowel involvement because I think that this kind of problem is fairly common among endometriosis patients.

I think a good endometriosis specialist might help you. Not an OB/GYN who does this on the side for a few patients but a doctor who sees only patients with endometriosis. The doctor who did my surgery has retired but there are others.

Best of luck! Endometriosis is a very tricky disease. And it is yet another illness, just like ME/CFS, that is often minimized or trivialized by doctors. It also gets little research funding. Very sad.

PS. I've never had a hysterectomy. Many people (though probably not most folks on this forum who have a bit more medial information) think that surgery for endometriosis means a hysterectomy. So that's the only reason that I'm adding this point.

 

[perchance dreamer]

I was fortunate in that my endometriosis went away after menopause.

 

[CantThink]

Please ask your GP/PCP for referral to a gynaecologist that specialises in endometriosis. You will probably need a laparoscopy which is keyhole surgery to look at your pelvic/abdominal cavity and this would allow them to look at your colon from the outside. They can do this as a 'diagnostic' laparoscopy in order to establish what is going on right now, and then they would decide post op on a course of action and operate later with say a bowel specialist present if your bowel needs specific attention. Sometimes they do cases in one go - so the treatment (excision) is performed at the same time... It really depends what they find.

The problem with having left your ovaries is that while they are useful for hormone reasons, the same hormones can cause the endometriosis to continue to grow after the hysterectomy.

Another thing you might find helpful is to look at an endometriosis forum for your country as it is possible you might be able to attend a centre for endometriosis in your area, and that information/recommendations you are more likely to find on one of those forums . If you can find an endometriosis specialist or attend a centre for endometriosis, you are more likely to get taken seriously as they are used to dealing with these type of complications.