Re: [Lupron (There are endo success stories)]
From: Pooh (anonymous@obgyn.net)
Tue Feb 29 13:53:49 2000
Well I have decided to give Lupron a try. I'm hoping that I will be one of
those lucky ones that Lupron can help. They did tell me that I have a lot
of endo scarring and adhesions so I may still have some pain. Hopefully
after the Lupron they can clean the rest up and I might enjoy some of those
pain free days you all speak of.
Hope that all is well and you all have a pain free week.
Pooh and Tigger
-----Original Message-----
From: anonymous@obgyn.net <anonymous@obgyn.net>
To: Multiple recipients of list ENDO <anonymous@obgyn.net>
Date: Tuesday, February 29, 2000 1:24 PM
Subject: Re: [Lupron (There are endo success stories)]
>Hi Jill,
>
>l agree with alot of what you have to say,Especially regarding taking
Lupron or any another supressing hormonal treatment, just
>prior to having surgery,it defeats the purpose of finding all the endo.l
will only have surgery every 5 years,just to slow down
>adhesions etc and so far so good,<touch wood>l am so Happy to hear you are
Symptom and pain free.
>You are such a great success story and the ladies need to hear the good and
the bad.
>You obviously researched your doctor and have a great one to taking care of
you.
>Welcome back,its night to have you back especially since you are doing so
well.
>I hope it continues for you.
>Best Wishes,
>
>Belle.
>-----Original Message-----
>From: jill <anonymous@obgyn.net>
>To: Multiple recipients of list ENDO <anonymous@obgyn.net>
>Date: Tuesday, 29 February 2000 4:37
>Subject: Re: [Lupron (There are endo success stories)]
>
>anonymous@obgyn.net wrote:
>In a message dated 02/23/2000 7:06:50 PM Pacific Standard Time,
>p100acre@primenet.com writes:
>
><< I'm terrified of Lupron and I wish that I had another option. I start my
>injections in March. Does anyone have any good news about Lupron? I've
heard
>all the bad.
>Please let me know. >>
>
>Hi! My name is Linda. I am new to this group. I am the Past President of
the
>
>Chicago Chapter of the Endometriosis Association. I was diagnosed with
stage
>
>4 endo in 1990 after 21 years of suffering from cramps and bowel pain. I've
>tried everything there is try for endo (2-laparotomies, 4 laparoscopies, 3
>shots of Lupron, Danazol, OCP's, acupuncture, homeopathy, chiropractic,
>herbs, etc. )
>
>I am very fortunate to be completely pain free for the past 7 years. I no
>longer have cramps! There are endo success stories. Endo is such a
>devastating disease with heartbreak after heartbreak. Like me, the success
>stories leave the group because once they put the pain of endo behind them
>(or get pregnant) they want to have time to live like a normal person.
>
>I personally do not believe that endo grows back like dandelion seeds in
the
>wind. If this was true there would be endo found in every single surgery
that
>
>every one of has had. There was no endo found during my last 2 surgeries
and
>
>I was not taking anything to suppress ovarian function. If this "grow back
no
>
>matter what you do thing" with endo is true than where was my endo?
>
>I am a firm believer in having surgery with an experience endo surgeon. Not
>every OB/GYN should be doing endo surgery! Endo surgery takes a very
highly
>skilled surgeon especially if the laser if used. You need someone that does
>endo surgery all day long every day. Some of the docs I have encountered
have
>
>taken a class on endoscopic surgery, stuck a laser in a bunny and then have
>declared themselves experts.
>
>Pardon the shouting here but I cannot stress the following information
>enough. I know this from first hand experience - DO NOT HAVE ENDO SURGERY
>WHILE TAKING DEPO-PROVERA, LUPRON, DANAZOL, OCP's OR ANY FORM OF HORMONE
>TREATMENT. Think about this! If you are having surgery to remove your
endo
>and it is being suppressed at the time of the surgery "IS YOUR DOCTOR GOING
>TO GET IT ALL OUT? ARE THEY SEEING IT ALL? WHAT IF HORMONAL SUPPRESSION
>SHRINKS IT. THEY DON'T SEE IT. THEY DON'T REMOVE IT AND THEN IT GROWS BACK
>AFTER YOU STOP TAKING HORMONES. IS THIS REALLY A RECURRENCE OF ENDO OR JUST
>ENDO THAT WAS ALWAYS THERE BUT WASN'T REMOVED? If your doctor only does
>surgery while you are under ovarian suppression find another doctor. There
is
>
>a reason why the top endo doctors will not operate on women undergoing
>hormonal treatment.
>
>The only reason I subscribed to this group was to see if anything has
changed
>
>in the 5 years since I walked away from my support group. Both of my
younger
>sisters have endo. My sister Mary had her 3rd endo surgery (she has 2 kids)
>on 2/18/00 and my sister Kathy
>(she has 3 kids) opted for hysterectomy a year ago. I still have my uterus
>and 1.5 ovaries. I have a daughter (she's 21) and so far she does not have
>any signs of endo.
>
>I would say that I have talked to hundreds (if not thousands) of ladies who
>have used Lupron. I have personally seen bulletin boards in several RE's
>offices covered with pictures of babies who were born to women that have
used
>
>Lupron. There are cases of infertility and endo but there are a tremendous
>number of women who have endo and children. I believe my mom had it and she
>had 6 kids.
>
>One of the support group leaders of the Chicago Chapter, Judith, took
Lupron
>and became pregnant with her son after years of trying. They decided to
get
>pregnant again right away and then she gave birth to twins. She is quite
>happy to be involved with her Mothers of Twins Club rather then running an
>endo support group. Judith says her success was due to having a
laparoscopy,
>followed by a course of Lupron and then a 2nd look laparoscopy with a
>hysterosalpingogram (blowing dye thru the fallopian tubes to see if they
are
>open). Only one of her tubes were open but she was fortunate enough to
get
>pregnant.
>
>I quit Lupron after 3 months because I did not like the side effects (joint
>pain, hundreds of hot flashes a day, night sweats (I had to take sleeping
>pills while on Lupron because I could never fall asleep. When I finally
>managed a couple of hours of sleep, I would awaken with my hair soaking
>wet.), Lupron turned me into a suicidal euunch. Even with rectal endo, I
>was lucky enough to enjoy sex but it was impossible due to vaginal dryness
>and burning while on Lupron. I could go from calm to the excorcist-woman
in
>
>3.0 seconds flat.
>
>This was all in the early 1990's before we knew there were permanent side
>effects from Lupron. They were just starting add-back HRT but not too many
>doctors were offering it then. If I had some estrogen then I would have
been
>able to tolerate it for the whole course. I would urge anyone considering
>Lupron to research everything they can before they decide. Go to EA
meetings
>and see what other women are saying. I would also be sure to get the shot
>monthly so quitting is an option.
>
>I have heard of the disturbing trend of women in the Chicago area getting
>their first shot of Lupron while still on the operating table and out cold
>during the diagnostic laparoscopy. What ever happened to freedom of
choice?
>
>I didn't mean to get on my endo soapbox. I just wanted to say hello and to
>mention some positive things. There is hope for a successful outcome with
>endometriosis.
>
>to powersurgette regarding recent email :
>
>i have a question about getting off longterm
>bcp's that I have been using to keep the endo
>from growing back. have had two laps to
>remove itin 1991 and 1995. May have to get
>off the pill due to a clotting disorder.
>worried about severe menstrualpain returning
>
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