ENDO Messages for July, 2000: Re: Lupron (There are endo success stories)

Re: Lupron (There are endo success stories)

From: Aimee (anonymous@obgyn.net)
Mon Jul 10 19:31:01 2000

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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

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