Usually, I hang around the pain forum, but I've posted here before (I think...lol).
Our symptoms sound almost identical. I also deal with bad pain and IBS-like symptoms. I have severe endometriosis with TONS of adhesions, but I have not yet had a hysterectomy. Did you have your hyst because of endo?
I've had seven surgeries for the endo, and in each surgery, adhesions are removed using the most advanced techniques that are supposed to lower the chance of them reforming. Well, each and every time, the adhesions come back more dense and strong. In my surgery last year, the adhesions had re-arranged the anatomy of the GI tract. The ascending colon was pulled to the opposite side of my body, and much of the small intestine was pulled downward into the pelvis. Also, adhesions were sticking all of the loops of bowel together. So, it was a complete mess. The surgeon tried her best to remove the biggest adhesions, but afterward, she told me that little could be done to completely remove all of them. Initially, after the surgery, I had dramatic relief of all pain and IBS problems, but within 3 months, I started having all of my symptoms come back. Now, I never would know that I was ever operated on. Rather than re-operate, we are trying to control the symptoms. I can always tell when a new adhesion is forming because it feels like a pair of hands is literally in my belly pulling on my organs.
Unfortunately, adhesions can be impossible to control. Science still hasn't developed a fool-proof method of removing them and keeping them from re-forming. The biggest threat from adhesions is bowel obstructions, which I hope doesn't ever happen in my case.
I have found that the best drug for controlling my pain and symptoms is Lomotil. I have to take it daily to function. At least with it, I can function on most days. I also have to take pain meds on some days, but amazingly, that doesn't help my GI pain at all. But the Lomotil does. Have you ever tried Lomotil?
If you were diagnosed with endo, there could be some lesions still on your bowel that could also be contributing to your symptoms. Some doctors incorrectly believe that removal of the uterus and ovaries means that endometriosis will be cured. Not true! There are many documentated cases of women with endo undergoing complete hysterectomies with continuing pain and bowel problems. It is now believed that the endo lesions can produce their own supply of estrogen to keep them thriving.
I hope that this helps some. I really understand how crippling your pain is. I hope that you are able to find some relief soon, and I'm keeping you in my thoughts.
Hi again Ryleigh,
I'll e-mail you in the next couple of days..
Lomotil is a prescription antidiarrheal. It is stronger than Immodium. It contains diphenyloxalate and atropine. The diphenyloxalate is derived from opioids, but it doesn't have the analagesic effects. It hits the GI receptors but not the opioid receptors in the brain, thus slowing GI motility. The atropine helps slow gut hypermotility, but it is also added to prevent abuse. (Atropine is an anticholinergic and causes dry mouth and dry mucous membranes if taken in large amounts.) I deal with incredibly severe intestinal cramping, and the Lomotil is the only thing I've found that helps the pain.
Talk to you soon, Ali
Post Edited (luvdogs) : 6/18/2006 11:33:06 PM (GMT-6)