Re: just diagnosed + treatments, Lupron, and returning to work
From: anonymous@obgyn.net
Tue Aug 29 01:03:33 2006
Wow. Great post! Thanks!
I have been on Lupron almost a month. In fact, I go for my 2nd shot
Friday. I am having a lot of hot flashes and insomnia too. I have been
very "ill." In fact my husband gave me a massage with relaxing oils b/c
I "needed to calm down" :) I am not looking forward to returning to work
next week. I am worried I will yell at my students b/c I have no
patience these days. Also, I am getting a ton of break outs. Did
anyone else taking Lupron get tons of acne? I have not experienced the
joint pain (knock on wood). I am taking my vitamins and extra clacium
for the bone density loss. Maybe it will help.
I remember reading where someone said it took 12 weeks before they
weren't sore. That is a bummer. It will be 6 weeks Thursday and I
still hurt. I so do not want to go to work but I have no choice. Go or
don't get paid :( I am worried about the standing up for 8 hours a day
thing. I can only be out and about for 2 hours before I have to go home
and rest. How will I survive 8 hours? What has been other's experiences
on going back to work? I feel it is too soon but I know the school
system and my principal don't think so. They don't understand. They
only know it puts them out and that they have to pay a sub to come in
and take my class until I return. The lady at the school board actually
ripped me a new one for having surgery so close to the beginning of
school and wanted to know why I didn't do it sooner or wait until I
wouldn't miss work, the jerk! When I told her I had two large cysts that
burst and I had no options but to have the open incision she calmed down
some. Unsympathetic people need to be able to experience our pain for a
little bit so they will see what we are going through, don'tcha
think?!?!?
Mollie :)
At Mon, 28 Aug 2006, anonymous@obgyn.net wrote:
>
>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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