ENDO Messages for February, 2000: Re: [Lupron (There are endo success stories)]

Re: [Lupron (There are endo success stories)]

From: anonymous@obgyn.net
Tue Feb 29 13:17:04 2000

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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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