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Re: any body out there?From: Lorianne (anonymous@obgyn.net)Sat Aug 1 01:25:19 1998
Dear Jenn, My sister-in-law has both endo and IC. She is 21. My heart breaks hardest for you guys. I'm really the only one in the family who understands at least half of her pain. I don't lean on her, but I let her lean on me. I've been hoping to get her a computer next year for her birthday (next JULY). In the meantime, I can ask her questions for you if you want. Koneczny@erols.com -----Original Message----- From: anonymous@obgyn.net [mailto:anonymous@obgyn.net On Behalf Of medterms@watchic.net Sent: Friday, July 31, 1998 9:27 PM To: Multiple recipients of list Subject: Re: any body out there? I am 22 and I have been told that I have IC and then I don't and then I do. Then one month later at another cystoscopy, I was told that i don't have it. It is a very strange disease to diagnose like endo. I also get chronic UTIs and one of the criteria for IC diagnosis is to be free from infection for 3 months. That hasn't happened to me. i always get one even when on constant antibiotics. Now my urologist is sending me to another specialist in Boston. The last one dealt with children and this one is with women and incontinence and IC. Maybe I have it they say. even the specialist in Gyno at brigham & women's thought IC with the endo just from talking with me. IC is also dependent on estrogen!!!!!! Wow! I would like any info you may have. I know that there is a diet to go by but I can tell you that you must avoid many things that we use. No juice because of the acid and no fruit b/c of the acid. THis is only a very small part of it but these 2 things are supposed to be good for us. basically I could only drink water and milk. I havent' stuck to it for years because they can't make up their minds if I have it or not. I have had incontinence since I was a child but never got help for it (not even my parents knew) until 1993. I never got an infection until my gyn stuff started to go wrong with an ovarian cyst in 1993. Ever since, i have been on antibiotics continuously (with only a few months off) and now I have been off for a month and so far no infection. Even the big time hot shot urologists cant' figure me out. I had a stami-vesicle pexy done in March. this is a bladder suspension but not a total one. They think it came undone b/c it did work for one month. But one month after the surgery I had to go in for a lap. Then 3 days later the bladder started to leak again. How discouraging!!!!! I go to boston again on the 17th. Hopefully some answers. My urologist here in Maine says that other docs would have frowned upon the idea of him doing a suspension on someone my age! I ddon't care. I was in the hospital for a week instead of 2-3 days but now we know that it was due to major adhesions going on plus a change in hormone treatment. Anyway, I think I would do it again but do more if it will help the leaking. This wouldn't cure IC though. Just like a hystero won't cure endo. very similar huh?!?!?! the only thing about having a full suspension is that I could actually go the other way and have to use a catheter every single time b/c i would n't be able to pee on my own. Very confusing but I am 22 an d want a social life like many others my age. I don't even date b/c of this problem! Anyone else out there my age with this problem!?!?!?! Jenn
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