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Re: I really need advice I am not sure what to do?From: Alexis (anonymous@obgyn.net)Tue Sep 27 11:23:08 2005
At Mon, 26 Sep 2005, PennyDoll wrote: > >Alexis, sorry to hear about this. You're almost exactly in my shoes. I >had the fluid, the ultrasounds, CT scans, MRI's, you name it. In march >I had my right small cyst burst on my birthday, March 16th. It is the >worst pain from endo i've ever had. I had the surgery and removal of >left ovary and tube removed about half month later. (If you go back, >you canfind my full stories...or email me and I can try to help >you.)After that I was put on seasonal and told not to take the sugar >pills and continue the BC so I got no period so that it would put the >endo "at bay" my dr. said. Which was bull shit. My pains only gotten >worse, another cyst is on my right ovary to be removed next tuesday. And >endo does reduce chances of having kids.I got married to my husband on >July 28th, and im lucky if i can have a child. Im praying all goes well >this surgery, then we talked about doing IVF before I have to need >another surgery. Im also high risk as it is from pre-cancer on my >cervix. So I say, get a reall good specialist, who knows what they're >doing, it took me alot to get a good doc that i have now. As for the >Lupron, I don't believe in it personally.. I know a friend who took it >and it did nothing good. She gained a ton of weight, huge side effets, >etc. but each person is different. While your doing that, from my >learnings and wish i knew at your point, is use this forum. Then go get >a filing thing, and get research. Keep a diary. A journal of your pain >from day to day, etc. I've learned alot, and at a much later time. Wish >I had this a while ago. But now I know, and continue to go through it. >Learn about the drugs, be educated, start bringing a file to each dr. >apt. with you. I downloaded the pain journal notebook from >http://www.painfoundation.org, go to PDF files and download the pain journal. >Another person on here told me about it, and it helps alot. Easier to >show your dr. Plus it helps me. Sometimes I can't remember my own >name, nevermind how I felt 3 days ago. And make sure your man >understands, download some stuff for him to read. Mine didn't really >understand until I showed him some articles/ > >At Mon, 26 Sep 2005, G wrote: >> >>Alexis, >>Well i am sorry to hear that u have all of this pain. i wish i could >>tell that there is a black and white answer out there, but i don't think >>there is. as far as the cysts and the fluid i don't have an answer for >>that. I can tell u i have been on lupron for the last 4 weeks (just got >>my 2nd shot today). so far my pain is still there and getting worse >>every day. i am hoping that with this 2nd shot things will get better. >>the side effect are bad, but what do u do?!! just try and deal with them >>one day at a time. it is diffrent for everyone. there are some ladies >>on here that are also on lupron and doing great and there there are >>others that it didn't work for. it is a personl choice. unfortuanly >>there is no cure for endo! reasurch all u can about ur options and then >>go with ur gut. if u can may go see a specialist. hope this helps a >>little and good luck!! >> >>-- >>G >> >>At Mon, 26 Sep 2005, Alexis wrote: >>> >>>Iam 19 and have had severe pelvic pain since I was 13, I just thought >>>that I had painful periods and that I would have to learn to deal with >>>it. I began birth control pills for cysts on my ovaries when I was 15 >>>and have been on some type of contraceptive since. The doctor thought >>>that the cysts would go away and that I would not have anymore problems. >>>>From there I changed docs because the one I was seeing just wanted to >>>keep me on highly sedadtive pain pills. When I changed OB/GYNs he first >>>changed my dosage then placed me on a constant cycle of pills to stop my >>>cycle. When that didn't work he placed me on Depo-Provera. I have had >>>2 laps, and my new OB/GYN found Endo after the second surgury it was >>>under my uterus, I also had a pelvic full of fluid that he though would >>>be from cysts that had ruptured causing all my pain. My pain diminished >>>for about four months, but now it is back in full force and getting >>>worse every day. My doctors says my next step is Lupron. I have read >>>awful things about Lupron and that you can only use it for 6 months then >>>it all comes back. I don't think it is worth the damage and suffering. >>>I have also read about the infertility rates and how they increase with >>>the disease. I have been told not to wait too long to try having a >>>child.Should I be concerned about the large amout of fluid that they >>>always find? I have had 15 or so ultrasounds in which the tech alwys has >>>trouble finding my left ovary because of the of fluid and cysts like >>>masses. Every time I ask the doc about it he says that I must have had >>>a cysts burst. Why am I forming cysts if I have not had a cycle in over >>>a year and a half because of the medications. Should I worry that I was >>>told by the tech that my right ovary looked ok, but my left she just >>>couldn't find well enough to show me? I am at a loss right now, what >>>should I do next? My boyfriend and I are looking to get married in the >>>near future and have talked about how near it should be because of the >>>chances of bearing children! I am just worried that things are not all >>>ok with me right now, what types of things should I do next? Is Lupron >>>the way to go, and should I worry about my ovary that is all but totally >>>visable? I have thought about going back on the pill because the Depo is >>>kicking my butt. I am so emotional and tired all the time. I want to >>>feel normal again. If I go back on the pill will it help my chances of >>>having a child easier when I am ready? I am still new to all this and I >>>need advice. HELP!! >> >-- >PennyDoll27@aol.com >Kris >
-- Thank you for your advice. It is strange how linked we all are and we are capable of seeing it, but our doc's are having trouble seeing it. My doc says every case is different, and while I agree with him I feel that so many are directly the same that you can use others for a general understand of what may come. I hope everything goes well for you in the near future with your surgury and the possibility of an IVF. Keep me posted. Thank you again for your advice.
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