Re: Lupron (There are endo success stories)
From: Amy (anonymous@obgyn.net)
Tue Jul 11 11:40:21 2000
I just got my 2nd shot, and so far/so good. I haven't any major side
effects (except an insane urge to cry at the strangest times, usually
controllable). I've had 2 hot flashes. The pain, while not completely
gone, is manageable. I haven't had to take more than 3 pain pills in the
last 3 weeks. The pelvic/abdominal pain is completely gone, and the only
thing left is the lower back pain. I am very happy, and feel quite positive
that the next 4 months will go well.
Amy in LA
-----Original Message-----
From: CORY SMART [mailto:anonymous@obgyn.net
Sent: Monday, July 10, 2000 7:02 PM
To: Multiple recipients of list ENDO
Subject: Re: Lupron (There are endo success stories)
the only problem i had with lupron was if i was late getting in to get my
shot, my roomates and friends would BEG me to go get it done cuz i turned
nasty!! other than that i didn't have any negative sideaffects...however it
only helped me for about 4 weeks... syneril worked better for a longer
period and that one gave me hot flashes but i didnt feel it was too bad..it
lasted for 2-3 months. and here i am, still suffering 7 years later!! oh joy
>----- Original Message -----
From: Aimee <anonymous@obgyn.net>
To: Multiple recipients of list ENDO <anonymous@obgyn.net>
Sent: Monday, July 10, 2000 5:31 PM
Subject: Re: Lupron (There are endo success stories)
> At Mon, 28 Feb 2000, 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.
>
> --
> what can i do about the burning when starting lupron.if you have any hints
please email me.--aimee@vnet.net--Thanks
>
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)