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Re: Just be Dianosed Today - Do not like doc's Treatment planFrom: anonymous@obgyn.netFri Nov 26 03:21:59 2004
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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