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Re: Having Trouble with Endometriosis Help!!!

From: anonymous@obgyn.net
Sat Oct 28 22:33:44 2006

Hi.

The montly shot is a drug called Lupron. There is nothing I regret more in this journey than going on Lupron. Search for it on this fourm and how will find many women posting on it.

Do you know about the endo specialists and excision surgery? If not, you might want to send your records to one of them and get a second opinion.

I strongly recommend Mary Lou Ballweg and the Endo Assn's book _Endometriosis: The Complete Reference for Taking Charge of Your Health_

I'm going to repost two of my earlier posts:

Dear All, 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 fourm. 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. 

--
Jenn
jennsierrabackpacker@yahoo.com


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.


At Sat, 28 Oct 2006, Charlene wrote:
>
>I have had endometriosis for years now, I have had 2 laproscopies and
>the last one they had found that my right ovary is exceivily plastered
>to the right side of my wall.  I have pains really bad during my cycle
>and during mid-cycle.  I have tried steriod to help cope with the
>problem of endometriosis.  Also was on the birth control pill for 3
>months at a time then stop for 1 week.  Nothing has worked for me.  The
>dr.  gave me some options and one was to give me monthly injection of a
>drug, can't remember the name of it, this drug will put me through
>menopause.  He also said the max time limit on it is 6-9 months.  Another
>option was to just remove the one "bad" ovary and hope that this will
>solve the problem.  Or last option is a full histrectomy, and put me on
>hormones.  This will also put me through menopause, I'm in my early 30's
>and have finished with my family.  I'm scared and stumped on what to do?
>I'm from a small town and any one that I have talked to about this has
>no endometriosis and I really have no one to talk to who have gone
>through any of this.  I'm looking for someone who has similar problems,
>and see how they have done things and what worked and didn't work for
>them.





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