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Re: Endo and Interstitial CysitisFrom: anonymous (anonymous@obgyn.net)Tue Jan 9 01:17:42 2007
Alexis, I have only been dealing with endo for about 7 years, but 5 of them were without med insurance. I was diagnosed (or as close as you can be without surgery about 7 yrs ago) then lost my insurance and suffered for six years. Once I had insurance I was recommended to a specialist and after our initial exam then an ultresound my dr decided to going in for surgery. Supposed to try to save my right ovary, remove a number of endo lessions as well as remove 5 cysts. Once I got into the or, they realized that the 7cm tumor on my right ovary was the least of their problems. They spent 2 1/2 hours trying to just clean up and save my right ovary and were unable to do any other work. They now suggest either a total hysto or a minimum of 3 more surgeries for the hope of keeping my uterus although the likelyhood of conceiving is slim to none. I have come to accept all this and had a pretty good notion this was the case for more that a few years. Yet, I'm in my 20's, ok 30 in a few months :-) , but keep believing technology could easily change in the next few years. OK, enough rambling. The point is that I qualify for a study on thalidomide - used in the past for leprosy, cancer, rheumatology, HIV, Crohn's disease, etc. Due to my Stage IV diagnosis, I can usually qualify fairly easily for such studies, but as severe as my symptoms are, they only last 1 - 2 weeks a month - not chronically. However, when they hit I have vomitted, blacked out and burned myself with hot water to ease the pain. OK, truly enough rambling now. 2 points... 1. If you are in that much pain, the act that has given me the most releif is the hot bath. For me, this means literally sleeping in the tub for 3 to 4 days, running burning hot water about every 30 minutes. I'm fairly sure this only works because the burning hot water hurts so much that it takes the pain away from the end0. This may not be the most healthy solution, but I have found that it is the most effective; as well as, not putting me in a position to take pain killers/narcotics on a regular basis. 2. In addition, I would be more than happy to get you in touch with someone I believe is truly involved to help women like us. My dr is the head of Advanced Laparoscopy and Pelvic Pain at the University of NC, Chapel Hill. I have been extremely impressed with him. He is personnally conducting 2 studies on endo and I really think that no matter where you reside he will be able to help you. Anyway, please call or email with any questions or if you just want to talk. Thank you for letting me ramble and I wish you the best! Meredith Dohrn mdohrn@gmail.com 919-946-4026
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