Re: Back from the CEC, questions about IC
From: Barbara (anonymous@obgyn.net)
Tue Nov 21 08:00:49 2006
Elisa,
Thank you for your response. I started yesterday looking for urologists
in my area that accept my insurance, just for a starting point. Thank
you for explaining more about what I need to ask when I start calling
them. I was worried like you said that they might not understand endo.
I really don't understand IC yet, so I need to get up to speed on what
it is all about too before I go talk to a urologist, since I think we've
all learned that it is up to us to be our own patient advocate to avoid
being misled about our treatment options.
Thank you again and Happy Thanksgiving to you too!
Barbara
At Mon, 20 Nov 2006, Elisa wrote:
>
>Hi Barbara~
>
>Glad to hear everything went well. When I had my surgery out of state
>years ago and returned home, I took the reports from that surgery and
>searched out Uro/Gyn Dr's. This way they seem to know a little more how
>these two areas cross over each other. Primary Urologists who didn't
>have experience with endo on the ureters wanted to put me on Lupron
>again and that was with a total and complete hysterectomy. What I found
>was to make sure when I called around I specifically asked if they dealt
>with Endo of the ureters and surrounding urological areas. If they
>didn't I just said "Thank you" and kept searching.
>
>I found a Chief of Urology at a Major Hospital that took my case on and
>eventualy re-configured my ureters when they couldn't be dissected
>anymore and needed to be re-imlanted into my bladder. I am hearing more
>and more urologists are getting better educated on this disease. My
>surgery was 8 years ago so I am confident you should be able to find
>someone if you screen them on the phone to save you the aggravation of
>an office visit that wasn't helpful.
>
>You rest easy. Sounds like so many people are happy with the CEC :)
>
>Happy T-Giving...
>
>--
>Elisa
>
>At Mon, 20 Nov 2006, Barbara wrote:
>>
>>Hello ladies, I am back from my surgery at the CEC in Atlanta. The
>>surgery went well and I am recovering at home now. Dr. Sinervo had to
>>remove my left ovary and tube, 25% of my right ovary along with
>>endometriomas (there was one in each ovary again), my appendix, and did
>>alot of work to dissect out my ureter. I had some on my bladder but
>>luckily none on the intestines. I was told I should seek out a
>>urologist to discuss treating Interstitial cystitis, which I don't know
>>much of anything about. Do any of you have any advice about how to find
>>a urologist to treat IC? I did a brief internet search on IC and am a
>>bit overwhelmed. I really thought my symptoms were all from endo so I'm
>>a little surprized that there's more to it. I really appreciate all the
>>encouragement and support you all have provided, thank you all so much!
>>
>>Pain free wishes to all!
>>Barbara
>>
>>--
>>Barbara Clowser
>>
--
Barbara Clowser
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