Re: National Lupron Victims network-- Marla
From: Debra (anonymous@obgyn.net)
Sun Aug 30 20:57:28 1998
I understand your compassion for other women, and I can respect that.
Had you presented your case from a more matter-of-fact point of view, I
am sure that many of us would not have been as offended as we were.
Please understand, we are eager to learn. Many of us may have
misinterepted your intentions. (It is so easy to do via letters/email,
voice inflections can be implied where they are not) The fact is,
though, that it is no one's place to make decisions for other people,
especially those who are desperate for answers and healing. Maybe the
use of lupron to treat endo may sound extreme to some, but to others, it
is a God-send. Trust me, I have personal dilemnas with many forms of
treatment for different diseases, but it is far beyond me to tell
another human being what they can and cannot do to their bodies. For as
long as we live in a country were things like abortion, euthynasia, and
deadly personal indulgements are considered personal choices, the use of
Lupron should be as well.
I am sorry that you feel unwelcome here, for I know that on my part, at
least, that is still not the case. Yes, I do feel that your
presentation of your views were offensive, but that is your liberty,
just as it is my liberty to tell you that I feel that you offended me.
Let's be adults, okay? (Brutal honesty is my biggest downfall, but I am
not ashamed of that.)
Probably the best thing to do here is to not mention NLVN or Dr. Abend
again, as those subjects have seemed to have stricken a chord among
others. As I said before, you are entitled to your opinion, and free to
give it, but the general feeling was that you were trying to impose your
opinions upon the rest of us, and even were attempting to make our
decisions for us. That is where the offense was taken. If I am wrong,
I apologize, but if I am not, then I stand behind my feelings.
If you still feel that you must leave the group, then I wish you well,
and hope that you find the answers and treatments that you seek. I have
respect for anyone who can stand up for their opinions, including many
of the women who oppose the statements that you made.
Thank you,
Deb
>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
>>
>
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