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Finally, a doc with an answer!!!From: Alyson (anonymous@obgyn.net)Sat Feb 10 22:14:24 2007
I just had the most amazing doctor's appointment this week and am finally sitting down to share. After a seemingly endless merry go round of doctors shrugging their shoulders at me, this one spent three and a half hours with me. He is a reproductive endocrinologist that I was referred to for lack of any other immediate options. I've been suffering with chronic pelvic, back, leg, and hip pain for quite some time now along with extreme exhaustion and some mild bowel problems. This explained that in many cases women with endometriosis who are suffering from chronic daily pain that have tried many treatments with only temporary relief are commonly suffering from chronic pelvic pain syndrome (often touched off by an initial disease or trauma like endo). I've actually read about it before and found some information on Dr. Cook's site (although he refers to it as Multi System Disease). It essentially involves an actual cellular change in the nerves in the pelvic region prompting a chronic pain signal being sent to the brain in response to the overall unrest in the area. (He used the analogy that the nerves are angry and letting you know about it) It also involves a collection of other issues that we've all discussed here like IBS, IC, fibromyalgia, and depression. He explained that often what happens with endo patients suffering from chronic pelvic pain syndrome is that when they are given an endo treatment (i.e. hormone/period suppression) that seems to work for a month or two and then doesn't seem effective anymore they are actually experiencing a placebo effect. The brain thinks "I've got the drug, I must be feeling better" and ignores those singals coming from the nerves. The endo pain is actually under control, but the brain slowly realizes that those pelvic nerves are still screaming. So, you feel the pain again, associate it with the endo, and assume the treatment isn't working. That has been my pattern, all the way up through Danazol and stopping short of Lupron. Which he, thankfully, insisted would just have the same effect for me. He suspects that my chronic hip and leg pain is likely fibromyalgia and referred me to a rhumatologist (can't for the life of me figure out how to spell that at the moment) and a urologist for my bladder pain. I am hoping something will pan out there. Surprisinlgy one of the first things he addressed was my history with sexual assault. He talked about a well studied connection between sexual abuse/assault and chronic pain from the basis that the lasting effects of the abuse/assault weakens the brain's ability to process and cope with chronic pain. That coupled with the depression leaves the body ill equipped to deal with the chronic pain signals. He felt that my extreme exhaustion and pain flare ups following activity were all linked to the depression. So, he prescribed a mild anti depressant often used for treatment of chronic pain conditions. I've taken it for almost a week now and feel so much better. I felt really conflicted about it at first. I didn't know what to expect of it and did not want to feel dazed, doped, etc. But I have to say, I have slept better than I have in ages, my pain level has significantly decreased, I'm not wiped out anymore, and the only side effect seems to be dry mouth in the mornings. I think the best thing (and saddest in a way) was that he offered to lead the charge in getting me healthy again, coordinating the doctors, etc. and he even sat down and wrote out a treatment plan for me. He was careful to reiterate that it is not in my head, it is a real, live, issue affecting women with pelvic trauma (endo, IC, IBS, etc.) It saddens me that such care has become such an infrequent experience these days. So, I'm off for blood work next week, the other docs the following two or three weeks, and a consult with a PT specializing in pelvic pain issues. This is the most hope I've had that I'll actually find a way to feel like myself again. Keeping my fingers crossed, Alyson
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Last Updated: Fri Jan 2 03:54:43 2009