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allow myself to introduce.....umm....myself....

From: frenchie (anonymous@obgyn.net)
Wed Feb 25 15:04:26 2004


Ugh. I think my endo might be back. Bear with this horribly long message...there are a lot of questions throughout.

Okay - I should enlighten you gals with my history before asking my questions. About 3 years ago, I had horrible cramping that came on suddenly. There were a few episodes where it hit like a ton of bricks and I was incapacitated, moaning with my eyes closed, hunched over and praying for the pain to end, thinking that I was dying - in public places, no less - so I figured it was serious enough to go see my doctor. Yup, you guessed it - endometriosis was diagnosed by a rectal exam (pain) and with a sonogram (a big ol' tumor in my left ovary).

So, my gynecologist advised surgery, and in I went. He started with a laparoscopy, but since the endometriosis tumor was fully encased in my ovary, he had to actually cut me open (laparotomy), take the ovary out, take the tumor out, and stick the ovary back in. He also removed adhesions and some more endo elsewhere in my pelvis. I think. I never got a really clear answer from him on where it was and what exactly was removed. I love my gynocologist - he's been with me through a missed miscarriage/emergency d&c, a successful pregnancy, and this.....I would almost consider him a friend. But he has a lot of patients so I think he was spacing it on exactly what occurred in the surgery room. I did get pictures of my uterus, ovaries, etc. though. Cool. Anyway -- my pelvic cramping went away and I've been very pleased with the results.

OK.....so let's jump ahead to present day. I recently went to see my family doctor for some bladder symptoms I've been having since adolescence. I've been battling an urge to "go" when there is nothing in my bladder for years. I would almost describe it as painful, but that's not the right word. Discomfort. Fear that if I move, I'll leak urine. And when I try to go, hardly anything comes out. I've spent entire days curled up on the couch afraid to move, in pain...and entire nights lying awake in bed but getting up every 5 minutes to pretend to pee. I can manage the pain pretty well on my own by drinking a lot of water throughout the day, but sometimes even that doesn't help. And lately it's been getting worse. It might correspond with my periods, but I'm not sure yet - I'm tracking that now. My family doctor told me he suspects endometriosis in the bladder, and advised me to see a urologist. Wow! I never expected my two issues would be related. I also apparently had blood in my urine when they had me do the pee in a cup thing. The urologist gave me a CT scan, put a scope up my urethra and looked around, and did a urine culture. All came back normal. So he said that if I have endo, it might be outside of my bladder attached to the wall, and advised me back to my gynecologist. The urologist also told me that if I don't have endo, I might have interstitial cysticis, which is what I thought I had for years. If I understand correctly, they don't know much about IC and there are several treatments but no known cure. It's one of those things that when they rule out everything else, they call it IC for lack of any other diagnosis.

I've also had some trouble with my bowel movements, which are horribly embarrassing. I've only recently told my husband about the problem after 9 years of being together. Sometimes I am so constipated that when I try to go, even if the stool is "right there" almost poking out, all the pushing in the world won't get it to come out. I sometimes have to....and this is the horrible part....put my finger up my rectum and pull the poop out myself. Sorry for the graphic description but this is totally scary to me. I've never told a doctor about this. I just can't bring myself to say anything. Anyone ever heard of this being a symptom of endo, or does anyone have it themselves?

So here I am, wondering what to do. Should I go back to my regular OB/GYN? As I mentioned, we have a really great relationship, but I wonder if he missed some of the endo in the laparoscopy/laparotomy he performed. There is an expert, Dr. David Redwine, located just a short day's drive from me. I'm scared to ask for my records from my OB/GYN. Will he know I went to someone else? How will he take it? Any experiences with Dr. Redwine, or has anyone ever heard anything about him?

Also, anyone have experience with bladder endo, or interstitial cystisis? Do my symptoms sound familiar?

Any other doctors in the Northwest USA that you've had good or bad expereinces with?

Thanks a million,

--
Frenchie



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