Dear Terri,
Did you get any help at all from anyone on this problem? Years ago I joined this group (the website adhesion group -- my gyn doctor never told me about adhesions even though my surgery was pretty severe) and finally, after threatening suicide had laporoscopic surgery for adhesions which relieved a lot of the pain I suffer over my pubis and through my left hip and leg. This was in 1999. The laporoscopy reduced the pain in my gut to a manageable level for about two and a half years, although I had rectal problems that weren't adressed by it. However, at this time, pain is back full force and I am completely desperate.
I have been going to pain management at St. Luke's in Manhattan where they have been treating me for lower back pain which I always said was related to my gut pain. I bave been in the ER several times for intestinal blockages. I have also had (failed miserably)electrode rectal biofeedback for rectal pain and and a prolapsed rectum (this was just finally diagnosed in 2004 at the Cleveland Clinic in Florida where I went after all the NYC doctors dismissed my rectal problems as nerves and pelvic platform instability.)
I am convinced and have told the doctors now for the last eight years since my hysterectomy in 1996 that my rectal pain and my gut pain seemed to be t wo different problems but they have just dismissed me. I keep telling me that when the gut pain and swelling kicks in my lower back goes out and that this started after my hysterectomy.
I am at my wit's end today, so I have come back to the adhesion society website. Your email talked about the lower back pain which has been crippling to me and associated it with adhesions which they know I have.
However, all the doctors seem to think that surgery for adhesions is not an answer. And now the colorectal doctor who was going to do the surgery to repair my rectum says he doesn't want to do it because of the constant nerve spasms. So I am left with the constant nerve problems as well as the problem of having my rectum go into spasm everytime stool enters it. I am desperate for any answers.
There is no support group in NYC listed in this website. Please let me know if you find any answers. I will let you know if I find any. I am going for some new tests (colorectal) on Monday which will determine whether or not the colorectal doctor will do any surgery to correct the rectum, but I am being told that the adhesions should not be so painful as I keep telling them they are.
My family doctor has sent me a thing on homeopathic medications to supposedly break up adhesions. I can't really believe in this; but I am pretty desperate. The PT people massaged my scar and my family doctor injected it and all I got was lots of nerve pain and no results at all, so I doubt this type of therapy has any validity.
-- Maureen Donohue