Cystoscopy: interstitial cystitis?

14 years 4 months ago #29136 by sara.anne
Replied by sara.anne on topic Cystoscopy: interstitial cystitis?
The site Pat recommended is a good one. Here is another:
www.ichelp.org/
The problem with ic is that there is no diagnostic test...it is just a sort of "if the shoe fits" deal.

Hope you get help.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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14 years 4 months ago #29134 by Patricia
Replied by Patricia on topic Cystoscopy: interstitial cystitis?
Suzanne..here's a really good site on IC
www.ic-network.com/
As for the enlarged veins...sounds like varicose veins to me and yes i'm sure that they could cause bleeding. I've found lots of information on men with this condition in the scrotum but not much on females??? Figures. Did find a site where others are discussing it and noone seems to have found answers.
forums.wrongdiagnosis.com/showthread.php?t=7280
Maybe you can connect up with someone there?
Pat

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14 years 4 months ago #29133 by szito330
Replied by szito330 on topic Cystoscopy: interstitial cystitis?
Forgot to ask another question: can gross hematuria be caused by IC or large veins in the bladder?

Thanks again,
Suzanne

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14 years 4 months ago #29132 by szito330
Cystoscopy: interstitial cystitis? was created by szito330
Following up to my original post of "Deciphering the Doctor's Descriptions":

The good news is that cancer was never mentioned, nor was anything seen on my left bladder wall (as in nooks or crannies or bladder filling defect).

But from the time I left my specimen until the cystoscopy, my bladder ached as if bruised. I have had this problem in years gone by, and today the phrase Interstitial Cystitis came up again.

Briefly, a urogyn at Yale diagnosed me with IC back in '06. I was to have 8 instillation treatments over 8 weeks. By week 2, the hour-each-way trip was wearing thin and I chose a uro dr. closer to home. He asked if the Yale dr. had done X-Y-or-Z to come to the IC diagnosis, as it is a diagnosis of last resort. The Yale dr. had NOT done them (as in voiding diary, etc.)

Now I am looking at IC again.I have treatment #1 tomorrow morning (a 20 minute drive this time!) And an Rx for Elmiron.

I know this is a bladder Cancer forum, not an IC one, but I am just curious about a thing or two.

First thing is the uro dr. today said my bladder has very prominent veins. That sounds unnerving. Any ideas, or just how God made me?

Second thing, I am concerned that things were seen on the CT urogram that were thought to be nothing today. How do I deal with this, or take the good news quietly and gratefully?

And lastly, any good resources on IC?

I have liked the camaraderie and thoughtfulness on this forum and once again thank you for your kindnesses to me in my days of fear and trepidation.

Suzanne

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