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  • Cystoscopy: interstitial cystitis?

    Posted by szito330 on December 8, 2009 at 8:50 pm

    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

    sara.anne replied 15 years, 2 months ago 3 Members · 3 Replies
  • 3 Replies
  • sara.anne's avatar

    sara.anne

    Member
    December 8, 2009 at 11:47 pm

    The site Pat recommended is a good one. Here is another:
    http://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
  • 's avatar

    Guest
    December 8, 2009 at 10:56 pm

    Suzanne..here’s a really good site on IC
    http://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.
    http://forums.wrongdiagnosis.com/showthread.php?t=7280
    Maybe you can connect up with someone there?
    Pat

  • Szito330's avatar

    Szito330

    Member
    December 8, 2009 at 9:18 pm

    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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