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Re: LUPRON HELP!!! From: anonymous (anonymous@obgyn.net) Wed May 9 13:03:16 2001 Messages sorted by: [ date ][ thread ][ subject ][ author ] Next message: Pauline: "Re: PAULINE & ANGELS NERVE DAMAGE??????" Previous message: Bernie: "Eye Problems" In reply to: Julie: "Re: LUPRON HELP!!!" I had my first surgery three years ago next month. My doctor opened my up, said, yep you have endo and sewed me back up. Nothing was excised. I was told I had a low tolerance for pain and that the endo that was present was minimal. This from a female doctor. IN any event, I had my first Lupron Depot shot in recovery. Three nights later, I was having night sweats. by the time I had the second shot, I was having a hot flash every 45 minutes. I had one in front of her so she put me on PremPro. Neat. The whole reason for treatment with Lupron is to deprive the body of Estrogen, which supposedly causes the Endometriosis to bleed during menses. what is PremPro? Estrogen. So, I bled for the next three months straight. Whatever good it might have done in the fist two months was probably eradicated by the PremPro in the last month. I had one more shot with her. That was when I was told I had a low tolerance for pain. I could not believe my ears. I could barely remember my name some days, was having a hot flash every 45 minutes (the PremPro made me bleed, but did not offer any relief for the hot flashes and short term memory loss), my work was suffering and my personal reltionships were suffering and she's got the nerve to tell me I have a low tolerance for pain? New doctor time. In any event, I gave up after the third shot, called my GP and told her what was going on. She referred me to another doctor, Dr. Papsakelariou. He's in Houston. And he's wonderful. He's registered with the Endometriosis association and is one of about 5 doctors in Houston that is. He had a much different opinion of Lupron and GNRH Inhibitors in general (like Lupron). He performed a second surgery four months after the first one. I'm sure the Lupron was still in my system and, looking at the photos of the surgery, changed the appearance of it to a translucent to white tissue from the reddish nodules it normally presents in. Makes it much harder for the surgeon to find it in that state. Most good doctors and experts agree that treating with GNRH inhibitors, like Lupron Depot, prior to and after surgery is not only not necessary, but not the right thing to do. Endometriosis has been found in MEN who have been placed on hormones after prostate surgery. It has been found in women who have had hysterectomies. It has been found in pre-menstrual girls. Deductive reasoning would lead me to believe that GNRH inihibitors have NO PLACE in treatment of this disease. I don't have M.D. after my name, but I can think. I have been essentially pain free for 2.5 years. However, it is back. I'm afraid I'm looking at more surgery and really depressed that this might be a lifelong thing. But I will NEVER allow another doctor to put me on Lupron Depot. Aside from the things it did to me, I have read many journal articles and personal stories where it has caused severe bone-loss and many other problems. My best advice to anyone reading this message is to become as educated as you can about your disease. I did not do that prior to seeking a doctor for treatment. I lucked out with the second doctor. But the more educated you are, the less wool a bad doctor can pull over your eyes. And you will know by treatment recommendations if they are experienced and educated enough on this disease to treat you. Find a doctor that specializes in treatment of this disease in your area. If you're lucky, you will have a few to choose from and your insurance won't be a hindrance to your choice. You can find out which doctors are registered with the Endo Association by visiting their website and doing a search in your area. If you are not comfortable with your doctor, don't be afraid to fire him. You'd take your child or aging parent to a better doctor if you though they were not being thorough enough or listening to your complaints. So, do it for yourself too! At Tue, 8 May 2001, Julie wrote: > >At Wed, 31 Mar 1999, D wrote: >> >>Hi, is there any more of you that have some input about what happened >>after lupron treatment. I really need your stories. Any successes? Any >>endo coming back? How fast, was it worse? Thanks and God Bless! :-) >>Happy Easter. >> >>-- >>"D" >>I am new to these boards, but I would not suggest taking Lupron unless you have to. I have had endo for 8 years, since I was 12 years old, I am 20 now and have been through it all. I took Lupron for 6 months and it did not help one bit. I had my third laproscope and they removed the endo, then I took the Lupron. I thought it might be helping me because I was pain free for 2 months, but then, just as I got my hopes up it came back. I have had 4 more surgeries, have had 3 d & C's, 2 hysteroscopies, and have taken many hormones and meds. Also, I have been taking Clomid to try to get me to ovulate. My cycles were regular for two months of the Clomid, and then bam! I am hurting again. I have been bleeding for 45 days, and finally today I stopped. The bleeding was very heavy and I was borderline anemic. My doctor just doesn't want to mess with me anymore. He has a huge ego and thinks he is the miracle worker and he thinks if he can't fix it nobody can. He tells me to just wait until I can' >t walk anymore and until I am vomiting so much I start vomiting blood and then he will do something. This is how it is every 3 to 6 months. He lets me get so bad I start to go crazy, I can't walk and I vomit blood, then he will do a laproscope and take it out. Endo never goes away. I have a friend who had a total hysterectomy and has had to have it removed by 3 different surgeons 3 times since then. I know how it is to have recurring severe endo and cysts. I want a child, but I am to the point that a hysterectomy sounds pretty good. Although, this is not really a smart choice either, because it can still come back afterwards. Right now, if someone killed me I wouldn't care. I beleive that Lupron just puts you through meopause to try to prolong endo. Sometimes the hot flashes, nausea, and other side affects were hardly better than the endo pain. At least you become somewhat used to endo pain. After the treatment is over, it is just a matter of time before it comes back just as bad, if >not worse than before. Next message: Pauline: "Re: PAULINE & ANGELS NERVE DAMAGE??????" Previous message: Bernie: "Eye Problems" In reply to: Julie: "Re: LUPRON HELP!!!"

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