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Re: HelpFrom: Alyson (anonymous@obgyn.net)Wed Feb 28 10:10:32 2007
Angie, Your situation sounds similar to mine. I know that it can be maddening to go from doctor to doctor looking for answers. I kept doing the same and they all kept saying "Its not the endo, try Lupron". I finally went to see a reproductive endocrinologist and he started to say the same thing (except the Lupron part). It kind of ticked me off at first, but when he explained that my description of pain was more indicative of fibromyalgia it all started to make a little more sense. It is so easy to want it to be the endo. Its the thing that can be seen, that seems to have options for treatment and you know that it has caused you pain before. But, fibromyalgia is a real thing. I never realized how real until I was recently diagnosed and am now (after taking some meds) able to really differentiate between the fibro pain and what feels more like the endo pain (like it did way back at the beginning of this journey). I am certainly no expert on fibro as I was just diagnosed and am trying to learn as much as possible. I am guessing that the meds you are on are possibly something for sleep and a mild anti depressant? It is usually suggested to take those at night to avoid those dizzy and drowsy side effects. You may want to check into that. IBS is very common with endo sufferers and fibro sufferers. If you are having that much pain with it it would probably be a good idea to go see a gastrointerologist. There are meds for it, but treatment also involves dietary changes as well. Also, the pain meds have a tendency to constipate so you have to find a way to counteract that effect too. I encourage you to do some research on the fibro and if you don't already have one, find a good rheumatologist that will help come up with a treatment plan for you. There is also an issue called chronic pelvic pain syndrome and pelvic neuropathy involving physical changes that occur in the pelvic area causing chronic pain. Your nerves actually physically change and send constant pain signals to your brain as a result of all of the irritation (endo, ibs, fibro). It has been my experience that the gyno is often great at dealing with the endo, but is at a loss when it comes to all of the other issues. So, don't be surprised when you go to see him if he doesn't have anything new to tell you. It doesn't mean your pain isn't real and you are not really sick. It just means he can only deal with your endo and you have alot of other issues going on right now that are likely causing your pelvic pain in addition to the endo. You should tell him about the fibro and IBS and see if he is familiar and ask if he can work as part of a team with the rheumatologist, and GI doc to get you feeling better. Check out these links: http://pelvicpain.com/learn.html http://www.mayoclinic.com/health/fibromyalgia/DS00079 http://www.fmaware.org As I mentioned, I am still working on learning about this stuff as well. The pelvic pain web site is great because it lists all of the issues that can commonly cause pelvic pain in addition to the endo. So, you can take a look at all of that and see what you think applies to you. Especially stuff about thyroid, fibro, ibs, etc. Feel free to e-mail me off list. I'd be happy to share advice as I find things out. Alyson
At Tue, 27 Feb 2007, Angie wrote:
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