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Re: just diagnosed - recommended treatments?From: anonymous@obgyn.netMon Aug 28 23:45:23 2006
I strongly advise against Lupron. It's only a bandaid even if it works in that you can only take it for six months, then you have to find some other way to manage the endo (and at 29 you have probably 20 years till natural menopause). I've had an aweful time with the side effects (memory loss, mood swings, hot flashes, night sweats, insomnia for days on end...as I write this I'm drenched in sweat by another hot flash). ERC studies have shown that some of the side effects, like memory loss, can persisit for years in some people. Find Mary Lou Ballweg's books. The newest is _Endometriosis: The Complete Reference For Taking Charge of Your Health_ (don't skip the cartoon "Joe with Endo"), her earlier book is the _Endometriosis Sourcebook_. She is the exec. director of the Endo Assn. Also, this paper is a very good overview of the treatment options: http://www.morehead.org/wellconnected/000074.htm (I think someone may have pointed you to it already). Excision surgery appears to be the best chance at a "cure". If you haven't tried it, I'd research the specialists. Dr. R in Bend, OR: http://www.endometriosistreatment.org/html/history.html, Dr. R in Maine http://www.endoexcision.com/default.asp, the CEC in Atlanta http://www.centerforendo.com/, Dr. K in NYC http://www.gynecosurgery.com/. Dr. C in Los Gatos, CA http://www.pelvicpain.com/. I hear on another list that there's a good endo doctor in TN. The Endo Assn. (http://www.endometriosisassn.org) keeps a list of doctors who register with them as treating endo and they can send you a list for your state and make recommendations. There are a few other names at http://www.endo-resolved.com/specialist.html These specialists are usually out of network so insurance issues can take some work, but their offices are usually experienced with this part of the puzzle. All the doctors seem to have different approachs. For example, excision by laproscopic scissors, laser, harmonic scalple or vaporization, with or with out BC afterward. Destorying the tissue with laser seems to only work if the endo is very superficial, which there is no way to know beforehand. I've taken to asking for 5 year recurrance rates as a point of comparison. Here's something I wrote and posted here about a month ago: My research on endo has lead me to believe that excision surgery (with little laproscopic scissors) is one's best bet for not having a recurrance. Some specialists in this type of surgery (which is different than laser abalation and electracoagulation that run a greater risk of leaving deep parts of the implants behind) report five-year recurrance rates of 20% or a little less. That means 80% of the women they operate on stay free of endo pain for at least the next five years. I have also read a few interesting things on immunotherapy for endo that might be able to further reduce one's suffering and,if the endo in surgically removed, one's chances of recurrance. I've noted several mentions by women on this forum of some relief through diet. I assume this is in reference to the book _Endometriosis: A Key to Healing Through Nutrition_ by Dian Shepperson Mills, M.A. and Michael Vernon, Ph.D., HCLD. We all need relatively local doctors who can take care of the medical, specifically hormonal and pain management, aspects of our care. The Endo Research Center, http://www.endocenter.org/, has published a two pager on finding an endo doctor filled with useful questions to ask and to think about (but I can't find it on their website, I got it when I signed up for their forum, http://groups.yahoo.com/group/erc). They also have a fourm specifically for patient to patient referrals, http://groups.yahoo.com/group/EndoDocs. If you become an member of the Endometriosis Assn., http://www.endometriosisassn.org/, they will send you a list of endo docs in your state that have registered with them. And you can call and ask them for their suggestions. There's a list of surgeons at http://www.endo-resolved.com/specialist.html. Look up the websites for these people. I found the Q and A at Dr. Redwine's site, http://www.endometriosistreatment.org/html/questions.html especially informative. As are his newsletter articles. The Center for Endometriosis Care in Atlanta also has an informative website and their program director, Heather, seems to be one of the most knowledgeable people about endo I've ever spoken with, http://www.centerforendo.com/. I also recommend the website of Dr. Kanayama in NY, http://www.gynecosurgery.com/. And http://www.thomasllyons.com has a video on endo. For information about immunotherapy for endo, http://www.harmonywomenshealth.com/web/. And google "endometriosis and immune" for more articles and websites. The best single information source I've seen on endo was recommended in a post by someone on this forum...the paper is long, but more than worth reading the whole way through. http://www.morehead.org/wellconnected/000074.htm I want to thank all of you that have shared your experiences on this forum. Reading the posts, esp. on Lupron, has validated my experience and been essential to my ability to cope. (My two cents on Lupron: For all the reasons mentioned in this fourm and based on my experience of side effects, I would not do it again or recommend it when one has other options. That said, it did provide me relief and give me time to do this research and plan my next step with a clearer head than the endo pain was allowing me.) I hope this is helpful. I'd be happy to share more of what I've learned in my research.
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