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I Am Back From Hydro/cysto

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  • I Am Back From Hydro/cysto

    Just got back from my 5th hydro/cysto, still kinda drugged, had to give my phenagran (sp) because I was so sick. She said everything still the same.

    The funny part was, she came in to see me before the procedure, and she said she loved me because I was so well read regarding IC and she had to be on her toes when she saw me. She came in and gave me a big hug.

    She went to a big conference, and said the main dr. for IC, got up on stage and said, "We do not know what causes IC and I do not know of any treatment that will fix it". Sad Sad Sad

  • #2
    I am glad all went ok with your hydro. I am not suprised at all about what your doc told you about the doctor saying they have no clue about IC or it's origin. At least he was honest though. Hey, like my gastroenterologist said, urologists are like 30 years behind the gastro's, and he even told me that the gastro docs have so much more to learn when it comes to the digestive tract, so that does not sound good for the urologists. I hope they come up with some kind of idea to help us better with this disease one day soon, but I am not holding my breathe if you know what I mean.


    • #3
      glad all went well. I hope that your hydro helps you.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        I hope this helps you. Feel better soon.

        (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

        [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
        :angel: IC Angel Volunteer Coordinator :angel:
        :) Contact me via PM or e-mail if you would like to help
        I have learned all about life in 3 words: It goes on! :D--Robert Frost
        PCOS 7/85
        RSD 7/94 :headbang:
        Endometriosis 9/98 :toilet:
        Antiphospholipid antibody syndrome 9/99
        Kidney stones--too many to count
        Factor V Leiden mutation 10/02
        IC 6/03 :evilsmile
        Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
        "Spirit is an invisible force made visible in all of life"--Maya Angelou
        "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]


        • #5
          I'm glad everything went okay. I hope it helps with your symptoms and you feel better very soon.

          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus