Re: Just be Dianosed Today - Do not like doc's Treatment plan
From: Aimee (anonymous@obgyn.net)
Mon Nov 29 10:46:48 2004
I know that this message was originally posted in January, but after
seeing it resurface over the weekend, I feel that I must respond.
I know and understand that each person reacts differently to each drug.
Lupron was a "miracle drug" to me, although it might not have been for
you. The only side effects I experienced were weight loss and hot
flashes, which were welcomed "problems" considering all of my pain was
gone! I would happily be a spokesperson for TAP and lupron, however I do
understand that many women have had bad side effects. We have to
remember that many of the women who have used Lupron and had good
results may not be visiting this site because their pain is gone. They
are no longer in search of pain relief or support.
The six months that I spent on Lupron were the best six months of my
life since the very first day of my first period (at 14). I am about to
start my second round of the drug (once insurance approves it). My only
complaint is that when the six months ends, I am sure my pain will come
rushing back as it did the first time... I just wish I could take it
all the time!!! No birth control pill seems to work.
So, all I ask is to not judge people who claim Lupron is a "miracle
drug" and tell us that it is "morally reprehensible" that we or the
Endo. Association endorse the drug. You may be using a form of
treatment that is your "miracle drug" but it didn't work for me or the
other ladies that have found relief in Lupron.
We are all here to support one another, please don't judge or toss
accusations because of the treatment choices we have made.
At Fri, 26 Nov 2004, anonymous@obgyn.net wrote:
>
>At Thu, 16 Jan 2003, Anonymo wrote:
>>
>>Thank you for your response.
>>
>>I am afraid I cannot agree with the second way of looking at it that
>>you propose. For the Endometriosis Association to accept money,
>>especially
>>such large amounts of money at regular intervals, is a major conflict of
>>interest and calls into question everything they do for me.
>>
>>You say the EA hasn't relaxed or changed its position toward Lupron.
>>Again, I must doubt that.
>>
>>For example, I just reviewed their little "Do I Have Endemetriosis?"
>>online tutorial that was mentioned in a previous post. This would have
>>been a great resource that I would have referred people to, but when
>>the woman in the tutorial asks three women with endo about treatment
>>options, the first one says this:
>>
>>"Susan: About three years ago, my doctor performed a laparoscopy. He
>>found endo on my ovaries and my bowels, and he said he got rid of it
>>all. Well, about six months later, it came back. All the pain, the
>>irregular, heavy periods, everything. I didn't want to go through
>>surgery again, so I decided to take Lupron to control the endo. I have
>>to say, it's a miracle drug. I finally have my life back. I took it
>>for six months--as prescribed--and only had minor side effects like
>>occasional hot flashes and headaches. I've been feeling good for two
>>years now."
>>
>>To call Lupron a "miracle drug," to play down its side effects, to make
>>it
>>appear like a cure to endo is morally reprehensible in itself. But then
>>they
>>have no adequate response to this, just one of the other three women who
>>says
>>she disagrees and Lupron did not work for her and had side effects.
>>
>>It is clear from this example alone that the EA has gone to bed with
>>TAP,
>>and they have now lost all credibility in my mind.
>>
>>I do apologize to anyone who finds my statements overly harsh, but I am
>>not telling you what to think, these are just my opinions. I have seen
>>what Lupron has done to so many thousands of women and the highly
>>unethical
>>behavior of its manufacturer, TAP, and I can see no possible excuse for
>>accepting money from them. The EA simply cannot operate in an objective
>>unbiased manner when the interests of its members is directly in
>>conflict
>>with the interests of its corporate sponsors.
>>
>>The EA, unlike the ERC, has not been a source of information about the
>>criticisms of Lupron and TAP, and the lawsuits against TAP, and of
>>course,
>>they cannot be when they are funded by TAP. This in itself puts them in
>>the position of not doing the right thing for women with endometriosis
>>because it would not be the right thing for a pharmaceutical company.
>>
>>At Thu, 16 Jan 2003, anonymous@obgyn.net wrote:
>>>
>>>I am afraid that- that is true. TAP is definitely a sponsor of the EA.
>>>(see their website or past newsletters- ...from
>>>http://www.endometriosisassn.org/media.html- "This year's competition
>>>was made possible by an unrestricted educational grant from TAP
>>>Pharmaceutical Products.")There's two ways to look at it- Lupron is a
>>>horrible medication that doctors use willy-nilly as a kind of
>>>sledge-hammer approach to treating endo and the EA should have nothing
>>>to do with them.
>>>
>>>The other way is that at least some of its dollars is going to something
>>>good. The EA hasn't relaxed or changed its position toward Lupron
>>>so....
>
>I started taking Lupron when I was 14 and took it severl times until I
>was 19. I went to the head of the OBGYN center a PENN, who is and was
>very well respected in his field. SO my mother and I didn't question
>him, even when the Lurponn started to make me feel worse, he'd pat me on
>the head and say "that's normal hin it's go away" It never has! I
>complained about the huge change in my formerly super-fast metabolism, I
>packed on 30 pounds in the first month!!!! With no change to my diet,
>and I was still exercising as much as I could, "don't worry it will come
>off" I was told "your metabolism will go right back to normal" It nevr
>has! I had been in the middle of puberty, my breasts stopped growing, my
>height stopped (I'm only 5'2 now at 25 despite tall parents,my dad was
>6'7 ,my mom is 5'6, I shoul be about 5'10 according to growth charts) My
>breasts developed unevenly because someone was plying with my hormones,
>so I had to have corrective surgery. My DH has helped heal the pain
>about how I feel about not having perfect beautiful natural breasts,
>unlik others who opt for implants I never wanted them! I just wanted my
>own to grow and be the same size!!!!!!!!!!!! When I asked about that
>yup- pat on the head "don't worry it's not a big deal!!!!" well, it's
>not a big deal to you! You don't have to change for gym class, or go to
>sleep overs and try to hide that one side is a c/d and the other a
>AA!!!!!!!!!!!!!!!!!! Not a big deal, show me a woamn to whom that woud
>be :not a big deal!!!"
>My ongoing painful symptoms and fatigue have finally been taken
>seriously by a wonderful doctor and diagnosed as Fibromyalgia and CFIDS.
>Neither have a cure, but with his help I feel much better!!!
>Good luck to all of you!
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