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Re: I am so scared to make a decision...kinda legnthy..i need some adviceFrom: Loretta (anonymous@obgyn.net)Tue Feb 28 22:43:57 2006
At Mon, 27 Feb 2006, angela wrote: > >At Mon, 27 Feb 2006, Jenny wrote: >> >>Boy, It sounds like your case of endo is about as bad as it gets. I >>wish I had some really great advice for you. I just wanted to say that >>with what you are going through, I can't understand anyone not >>supporting you taking pain meds for your very serious pain level. That >>totally puzzles me. >> >>Hang on to your husband. I'm really glad you have him for support. And >>I don't know, your case sounds so terrible, isn't there somewhere where >>they do research on really bad cases like yours? Just a thought. That >>takes a lot of time, money, effort, and LUCK, I know. I just feel bad >>knowing that you suffer so badly from a disease that is so hard to >>understand. >> >>~Jenny >> >>At Mon, 27 Feb 2006, Loretta wrote: >>> >>>I have had endo since 13,hospitalized many times then diagnoed @18. >>>Had a child at 15 that I had to let my parents raise as my boyfriend was >>>very abusive and i had no means to support him. At 18 I married and we >>>tryed to start a family, it was the most important thing to both of >>>us.My periods and pain had always been out of this world and i was >>>hospitalized with a ovarian cyst that was rupturing.They had found while >>>operating that I was covered in endo and was scarred badly , they said I >>>must have had alot of cysts before as my ovaries were a mess.I was in a >>>large teaching hosp in Vancouver Canada and the specialists said I was >>>so scarred that i likely wouldnt be able to concieve again. They did my >>>first laparotomy and tuboplasty to try to clear out my tubes. I tried >>>again for 2 years and my husband drifted to other women as he could not >>>handle all my pain,hospitalizations,surgery,then still, no kids.We >>>divorced. I married again and this one also wanted kids and we saw >>>another infertility spec who said he would repeat the tubo and put me on >>>fertility drugs. Did it,..had a tubal..i was DEVISTATED. I kept >>>getting large cysts and the pain got disableing. the short of it is, we >>>tried everything , nothing. That marriage also didnt survive. I am 40 >>>now. a dozen surgerys later,countless drugs...I now have stage 4 >>>endo,and frozen abdomin from all the scar tissue. One and a peice of >>>one ovary left (it still gets cysts on it!!)and had stage 1 cervical >>>cancer. >>>Almost every organ in my ab is stuck together in a tight ball, many >>>surgerys to free them but they gave up and said they cant tell one thing >>>from the other and if they tried again they may cut something vital and >>>it may hurt my bladder or I may be on a bowel bag. My bowel and >>>intestine is so scared that nothing moves at all, I can only eat 1 meal >>>a day and every night i have to drink a purgative that u take before >>>surg that turns it to "water" so it cleans me out cause passing anything >>>solid is excurciating. I bleed all the time but they cant even take out >>>my uterus cause of the scar tiss.when i get cysts there is nothing i can >>>so till it works itself out. By rupturing or whatever it does. Hormons >>>to stop my period dont work and make me sick. I am on injections >>>everyday of morphine and get hassled ALL the time from nurses and some >>>Dr's at hosptals i am admitted to.I have lost all my familys support >>>since taking the medication for pain. My husband of 10 years is the >>>only support i have and he wants me to take it cause he says he see's >>>thats the only way I have a life and can function.But they make me feel >>>like a loser for taking it. It lost the effect of making me a little >>>"high" LONG ago and my pain specialist says its the best thing out >>>there. My Family Dr supports our choice.I was in bed for a year from >>>pain and depresson before they used it. >>>But i feel so bad when they hassle me. The specialists told me if I >>>really insist they will try more surgery but I have to accept the >>>results if it goes bad, and there is a HIGH chance it could.If my bowel >>>is perferated I could die.If i keep on it i may last it out to menopause >>>and maybe some pain will let up. They say i may get a bowel blockage in >>>the meantime and i may have to have the surgery by emerg anyway. I dont >>>know if i should wait and see or go get it over and accept what may >>>come.I need someone's view that wont hassle me or my choices so far. I >>>do everything else to help myself in EVERY other way! I MEAN I DO IT >>>ALL! Diet,excersize(what i can)Meditation prayer,.... > >-- >i am new to the site and my endo is no where near as bad as yours i dont know a lot about it but read somewhere that eating meat and dairy products doubles the endos rate of growth , u may know this but i just thought i mention it incase u didnt. i dont really likre asking u my problems when u have enough of your own but u obviously are wise ton the subject. my problem is im 32 had 2 misscarages, not trying now for about another 2 years but i cant take the pill as my doctor said due to continuing migranes i may have a stoke if i keep on taking it cause i been on it for 15 years. but my specaislist said the tablets he could give me are like hrt and the side effects are no good as im so young but he did tell me that 5 years ago.they said i have pelvic endo i dont want periods as they hurt and keep me off work, so i dont know what to do next. i put on 2 stone in weight since getting ndo but i dont know if thats any thing to do with it. any advice i would be greatful thanks and i hope feel better , u could try a faith healer it worked for a friend i knew who had cronic arthritis, sorry about the spelling angela >
-- Hi Angela, Nice to see you in this forum. I am so very glad you found it at such an early stage in your diagnosis.If I had such a place to talk and recieve valuable,accurate,or at least helpful infomation as this when I was first diagnosed I cant tell you how much it would have helped me. I find that us who have gone thru every step of this struggle seem to have as much or more info than family doctors and heath professionals not in the field. I suggest you read alot, here,OBGYN.NET homepage has alot of links to excellent topics and info. Most anywhere on the internet that is a health forum has links to some info on endo. KEEP LEARNING! EDUCATION IS OUR GREATEST TOOL! I have to say though not everyone will have all the answers,we all have the same endo problems but to varying degrees and different treatments,outcomes and opinions. My advise, take what pertains to you and dont judge what or how others go about their own treatments or copeing stratigies.Ask and share,reach out and reach in.Take what u can use and put the rest on the back burner for future reference, u never know when u will need it. As for hormons and such, I am not very knowlegable in that forum, I never could take the birth control pill as I had severe migrains and blood pressure issues when I tried it.I tried a few types of hormons for fertility treatments way back,and otheres to stop menses, but had bad reactions with most or no sucsess. I am sure others here are better to chat with about that. I sure know alot about surgeries though !!! hahah Good luck Angela, u are on the right path...I am here when u need and ear Loretta
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