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Re: Help please...From: Ana (anonymous@obgyn.net)Sun Jun 23 09:13:33 2002
Hi, I will put my story as short as possible and then tell you my experience with both the surgery and the lupron. I have had endo since I was 12, I was misdiagnosed until I was 16 though, when I finally passed out on my family room floor and my mom rushed me to the emergency room, and even there 2 more doctors misdiagnosed me. FINALLY someone looked at my catscans and saw what was up. I had cysts on my ovaries that were being mistaken for my ovaries cuz they were bigger then the ovaries themselves. About two weeks after this I had my first lap. I then went on lupron. After about six months I went off of Lupron. Within a year my pain had come back and I was back in surgery. I had my second lap, almost exactly two years after my first. After this lap, my doctor put me on Loestrin (birth control pills). Okay, now for your ?'s . . . I only read one other person's response to this e-mail so if I am just reiterating the same stuff everyone else said, I am sorry. A lap is an in-out surgery. You go in, they do it, you go home. Any surgery, anyone ever has is going to cause some pain obviously, it is just different for everyone. My first lap was supposed to last 30-45 minutes, but once they got in there they found that my organs had grown attached thanks to the endo, so it ended up being four hours long. I was still allowed to go home the same day. I was in SEVERE pain for a few days. But I was up and walking within about 5 days. My second lap I guess lasted for about an hour, unfortunately though the anastetic (sp???) caused my blood pressure to drop EXTREMELY low, I believe at one point it was like 40/10, so they kept me in the hospital over night this time. However, after this lap, I was up and walking the next day, the pain was not bad at all. Realize that unless your dr does this lap, she may never have a clear idea of what is going on with you. My dr originally thought I was no big deal, just one lap and I was done, after my first lap he said I was the worst case of endo he has seen in 20 years. As for the lupron, it is another one of those things that is different for everyone. It made me better while I was taking it, but the hot flashes and mood swings were killer. I never want to go back on it, but would be willing to if my dr said that is what he thought would be best. The biggest help with my endo has been taking birth control (not continuously). Endo is not something one day you just wake up and everything is fine again. It is going to take time. FINALLY I am feeling great. For the past 8 years I have felt like crap, couldn't walk during my period, things like that, and NOW I am 100% better. I hope that happens for you sooner then 8 years from now, but I know it will eventually. I hope I was of some help. Sorry it was so long. If you need anything feel free to e-mail me at anonymous@obgyn.net GOOD LUCK TO EVERYONE!!!! *HUGS* ~ANA
>----- Original Message ----- Chiara, I have to say I am so sorry for what you are going through. And sorry to hear that you are dealing with it alone. I had a nurse that I think, thought it was all in my head. That was a hard thing to deal with. Having someone not believe you when you feel pain that is so unbearable and indescribable. Here is my experience and I stress this is just MY experience. I do realize that everyone is different and different things work for different people.. Let me try to briefly tell you my history and story. I had abdominal pain in my right side starting when I was about 13 I would get it for several days about once a month. My mama was smart enough to figure out it was most likely during the time of ovulation. Then when I was about 18 the pain increased and was more frequent. I had had horrible periods from the very beginning of them. But at 18 along with this pain (feels like a burning where my ovary is almost like a raw open wound) I started developing ovarian cysts this led to my first OBGYN visit. She put me on birth control to get the cysts and periods (which had started going about 30 days on 10 days off 30 on...) under control. The pain continued to get worse and worse and since endo was in my family (my mother had it and had had a complete hyst) she performed a lap. that provided relief from the chronic pain for about 2 weeks and then it was back to the same old stuff. Cysts, chronic pain, horrific periods... The surgery itself was not too horrible it was my first and only surgery so I have nothing to compare it to. It took me about 2 weeks to recover enough to be up and around and about 6 weeks to get to full capacity. (I must be a wimp though because it sounds like most girls bounce back from this surgery a lot quicker) =0) Anyway I tried BC for about a year and got no relief and still had irregular bleeding. I then tried Depo-Provera and that just caused major depression, a little relief but it was not worth the altered personality. I then tried depo-lupron and that was just as bad as far as depression and maybe even less relief. Another side affect that my doctor did not bother to mention was what is called a suto (sp?) tumor that is not really a tumor but acts like one and is really hard to get rid of apparently. Fortunately I discontinued the shot before that happened to me. I went back on BC and ended up feeling worse than ever. I never had relief from the pain and it just got worse and worse I had cysts rupture which is a scary thing if you don't realize what is going on. So I decided in December to go off of the everything. For about 3 months I had almost complete relief my periods were irregular since it was my first time with no form of bc in my system in about 3 1/2 years. The pain eventually returned but I still think that in the long run I am doing better than I ever was on anything. (sorry that was longer than I expected. I just thought since you said you have no experience it may be helpful to hear someone else's story.) Feel free to email me if you have other questions or just need support. roo@fbg.net I am not a huge believer in much of anything that they have found to help with Endo because nothing has worked for me so far but I know it has worked for others. I do know that getting pregnant helped my sister-in-law who had it horribly and every doctor I have been to for it tells me that if I could just get pregnant... Unfortunately I am not married and not getting pregnant any time soon. I guess maybe non of this was helpful but know that others have been there and know your pain. I am so sorry for you having to deal with this. Oh and about the cervix thing my doctor always did the same thing and it hurt like heck. I want to cry just thinking about the pain I had a hard time sitting after that for days it seems. Ugh. I do not miss those doctor appointments. Keep us posted on how you are and good luck! - Sarah
> From: Mstrskey@aol.com (Chiara)
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