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Re: Marla - National Lupron Victims Network/very longFrom: anonymous@obgyn.netSat Aug 29 14:59:47 1998
I have been reading a lot of the posts about lupron. I haven't responded but I would like to throw in my opinion. For me, Lupron was the best thing that i ever did in 1994! I had been having tremendous pain at the age of 17 (it all started in 93) and my gyn really felt that I could have endo but the laps didn't show any at all. After a while and nothing helping, we decided it was time to try to treat it as if it were endo. Within a month I was a different person! I couldn't believe it! The hot flashes and mood swings were more difficult to deal with for my family than it was for me. They had to live with me reacting so differently. After 6 months I went on BCPs continuously. Within 6 months or so the pain came back with a vengence. In July of 1996 I went back on the lupron. I felt better and then I would have bouts of pain. I had a lap last Sept and it showed the endo. I have had a total of 32 lupron shots (a record as far as all I have heard about) and my gyn discovered that my estrogen isnt' suppressed anymore. We figure that it must have been close to a year b/c that is when the endo was present. He had me stop the lupron and I am back on danazol. I am only 22 and I am going to have my left ovary and fallopian tube removed very soon. I cannot handle the severity of the pain. Things have only gotten worse. I cannot blame it on the lupron at all. Once I stopped the lupron I felt no effects. In fact, after about the 3rd shot my body just got used to the change in estrogen levels and I didnt' even experience the side effects anymore. I cannot say that the lupron would work for everyone and I cannot say that everyone on lupron should stay on it as long as I have. I know that many of you out there gasped when you read that i have had 32 injections in a four year period. I know in my heart that I would have been even worse lately if I hadnt' had it. I was the one who was scared to go off it b/c I didnt' want things to get worse. I knew that the pain has gotten worse but the lupron was at least keeping it a little bit down. I cant' imagine my life this past year if I hadn't been on it. I take pain killersALL THE TIME (even on the lupron) and without the lupron? I dont' even want to imagine. I tried the depo provera in March and within 2 weeks was right back on the lupron. I had severe cramps and spotting. My periods had stopped on their own in 1994 (but in 1993 things began to slow down a lot). If I had been having periods......oh I don't even want to imagine what I would be going through. I have been in so much pain lately that I nearly passed out at the doctor's office. How much worse could I be? I would not be able to work or continue going to college. I had spoken with the drug rep who delivers my lupron to the doctors. a nurse in Ohio had called him for me. I live in Maine and through many phone calls she got the right one. They agree that we don't know what the results would be after more than the 6 month treatment period. The studies were only done on a 6 month trial. Many have spoken badly about my doctor keeping me on the lupron so long. I am the one who could have said no. I didn't know what else to do and he wasnt' trying to have me be part of some study! He is a unique doctor and he IS out there to help me. I am sorry that so many of you have had bad experiences with gyns and lupron. I am lucky to have such a great doctor. He is even frustrated and no one knows what to do with me anymore. I just want you all to think about the fact that maybe the bad things you have experienced after using the lupron may have been a coinsidence. If you had still been on it, you may have still had the same results you have now. We won't get anywhere if people are so insistant about something and can't see beyond their own opinion. If a woman asks me about lupron I will honestly tell her about my experience and she most likely will feel much better soon. I dont' tell anyone that it is a guarantee! I know we all react differently to these drugs. I feel bad for some of these doctors. If you are not in the medical field it may be difficult to really understand what these docs really feel. Most of them are gyns for a reason. I know many doctors and they aren't in it for the money (ask them about their loans and you will find out that many of them don't make the money we assume they do for several years!!)....they want to help heal and treat people. The hippocratic oath states that they won't do harm...yes, some do but we cant' forget about those who don't harm. If we as a group want a solution found for this horrible disease then we have to try the things that are out there! The docs can only have so many resources! I too have had some bad experiences with doctors but as a medical secretary who works with many docs and as a student wanting to go into medical research (wanted to be a doc myself), I see that they really are trying to help. I want everyone of you reading this to try to understand my sincerity. I am not trying to push anything on anyone. You should be able to tell that by now. I just want us to try to see more than our own side to things...that's all. If any of you want to write to me directly you can send it to Jenn: medterms@watchic.net Please dont' send any rude or degrading mail. It won't do any good. I am tired of reading some of the posts that seem to put someone down for what they are saying. Jenn
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