ENDO Messages for August, 1998: Re: National Lupron Victims network-- Marla

Re: National Lupron Victims network-- Marla

From: Chandra (anonymous@obgyn.net)
Sun Aug 30 18:25:48 1998

Messages sorted by: [ date ][ thread ][ subject ][ author ]
Next message: anonymous@obgyn.net: "Re: Have a question Help me please."
Previous message: anonymous@obgyn.net: "Re: New Here...With Endo"

All:

Please do not let differences of opinion cause us to be adversaries. We all need each other to lean on. It's OK to agree to disagree, please don't be dogmatic about it. Please remember what it was that brought us all together in the first place.

Peace and Blessings,

Chandra Manassas, VA mrscmartin@hotmail.com

----Original Message Follows---- Date: Sun, 30 Aug 1998 17:03:16 -0500 Reply-To: anonymous@obgyn.net From: Druzgal <anonymous@obgyn.net> To: Multiple recipients of list <anonymous@obgyn.net> Subject: Re: National Lupron Victims network-- Marla

Don't worry. I am out of here.

I have never seen so much cattiness among a group of "fellow sufferers." We have all been through hell, but it seems more important to concentrate on (how was that phrased) - "pissin match"'s than getting to the source of the problems.

I belong to several discussion boards. Each of them have pro-Lupron and anti-Lupron. While the debate over its uses are common, it has never been contested from even those pro-Lupron, that those of us who do have the symptoms are simply trying to "blame everything you have wrong with you now, just because they happened AFTER you took Lupron."

I would never presume to know about any of your situations. The only difference between us is that I don't believe Lupron should be approved for the uses for which it is assigned. IF it were approved for those uses for which it is so commonly used, it would be a different debate from me. I am attacked because I don't believe that Lupron should be allowed to be used, because I am "trying to tell what is and is not right ... because taht's certainly how I read it. You *are* saying you know what's right for me."

What I am not saying is that I "know" what is right for anyone else. What I am saying is that this drug is not approved by the FDA for all the uses for which it has been and is now being used - specifically as I stated - infertility and fibroid shrinkage. I suppose that by agreeing with NLVN in the first place I should have realized that I was going to alienate myself from the board. That is unfortunate, because whether or not Linda is a fellow sufferer, the fact remains that I am a fellow sufferer, who no longer wants to associate herself with a "support" group.

It seems to me that the only place where any difference of opinion between us occurs is that I believe Lupron should not be used for those uses, and not allowed to be prescribed for those uses, for which it is not approved. I do not see what is wrong with that belief.

So in asserting my strong feelings on a drug which has effected so much influence over so many, and had horrible (yes HORRIBLE) effects on many women, I am instantly cut-down.

I am sorry that any of you had personal difficulties with Dr. Abend (yes - believe it or not, a dentist is a doctor too). Is she any different than a concerned husband who takes it upon himself (although his loved one went through the suffering - NOT HIM PERSONALLY) to research the facts to try to stop what he believes is an atrocity upon the human body?

Maybe she has the personality of a a**ho*e. I have no idea, because I have not been on the same side of the fence as those who have had "confrontations with her."

But I do know that in relation to her research, her dentistry status and non-Lupron status are irrelevant if anything. As a matter of fact, if you go to any scientific laboratory, they PREFER that those who do the research are not affiliated with or in any way have first hand knowledge of the drugs effects, because the study no longer can remain objective.

I don't care if she had Lupron or not. My husband never had it, but he sure as heck knows more about it than most of the women I've come across in the boards, because he reads about it daily. He looks up those abstracts and journals which are listed in the NLVN website, and he reads for himself what the studies have shown and what evidence is warranted or not.

How many of us have gone and researched this? We may have first-hand knowledge of what it has or has not done for each of us, but that does not make us "experts" unless we are willing to go the extra steps to look at the outside world as well.

My husband and I have spent hours reading about endo and about Lupron and about fibroids and about human physiology. While my college majors were English and Economics and his was Safety Science, it doesn't mean we are any less "qualified" to do research on this drug. Likewise, because Linda is a DMD, not an OBGYN or a general MD, does not mean she cannot do the homework that each of us should be doing, to learn more and pass on more information on something we believe is seriously wrong.

I have pains that wake me up at night. I have pains that cripple me during the day. Because I condemn a drug which has not been approved for which it is used for, does not mean that I have no idea what others are going through. If I had known even one person who had been through the severity of the Lupron effects when I was making my decision to take the drug, I would not have taken it. But unfortunately, I did not have the luxury of the "WEB" at that time, and there were no discussion groups to turn to, nor were there "fellow sufferers" with whom I could turn to decide my fate. At that time, I only had the words of a physician, who, like so many physicians today, was mislead by the manufacturers of the drug, to believe that the only side-effects were short-term "menopausal" symptoms.

I have loved the boards, because I have read everyone's input, responded privately to many who were having difficulties physically and emotionally, and made some lasting friendships through our mutual suffering. But I have never responded to posts to "pat someone on the back" for retorting to a fellow member.

It hurts to type this, because I feel I am being negligent to future women who join the board who might have a particular situation in which I could empathise with their difficulties, but I have to stop putting myself through the anxiety of retrieving my email - wondering who the next woman will be with her claws out, ready to defend something which was not attacked. I need to be selfish right now, and do my own research and plan my own health, and hope that everyone else can do the same.

I have seen others post their "goodbyes" onto these discussion boards, and I honestly never believed that I would ever be one of them. I stayed out of their discussions and took what information from EACH side which I deemed relevant and true for my own situation. I don't even want to sit and watch anymore, let alone participate. I have never been so disappointed and disheartened.

Good luck to ALL of you in your health and wellness. I sincerely hope that you each find the health that you are looking for and that endometriosis and fibroids find their way closer to the public's concern that they have been in many years. I hope that more conclusive studies can be done to end the debates on the Lupron controversy and I hope that a cure can be found for these horrible female difficulties.

Have a safe and happy life, whatever course you take.

Peace.

At 12:02 PM 8/30/1998 -0500, you wrote: >Tricia--
><applause>
>Well done, sister, well done. After 6 years of competitive debate and
>rhetoric, I must say that that was one of the best rebuttals I have
seen >in a very long time...
>Deb
>

Next message: anonymous@obgyn.net: "Re: Have a question Help me please."
Previous message: anonymous@obgyn.net: "Re: New Here...With Endo"

Women's Insurance Checklist from Auto Insurance Quote

use when must restrict search to only the endometriosis forum...
Enter search keywords:
	Returns per screen: Require all keywords: