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I finally know what is wrong with my bladder

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  • I finally know what is wrong with my bladder

    I had a cysto/hydro & botox yesterday. The doctor was shocked that he could only stretch my bladder to about 450cc. Before the hydro I could only hold 265. He said my bladder was full of glomerulations. In his words "oh you definitely have IC" He said " I was more amazed at how small your bladder is. I asked if he took pictures and he said there wasn't much to see because it was to bloody.

    The surgery took over 2 hours and I was put to sleep. When I woke up I was in a lot of pain. They gave me morphine to help with the pain along with an instillation of lidacain and barcarbinate. Then I began to vomit from the anesthesia. It was a horrible day. I had to be there at 6 am and didn't leave until 3pm because I was so sick.

    At least now we know what the problem is. Before I felt like we were just guessing. Now we know and we can deal with it.
    IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets

  • #2
    I am sorry you had such a bad day. My bladder is just under 200ccs awake. so I know how you feel having a small bladder, I know there are alot of us here with that and even smaller bladders.
    I wonder why it took 2 hours to do the hydro.
    Feel better soon, I am sorry you have IC, but have an answer as to what is wrong.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      I can totally relate. My bladder is 350cc UNDER anaesthesia!


      • #4
        I am so sorry it was a rough day for you, but I am glad finally you know what is going on with your bladder. Hopefully now you can figure out how to make your bladder feel better.

        Sending hugs, Trishann


        • #5
          My little bladder is 150cc under anesthesia - so awake it's almost nothing - I can hold it until almost 100cc, but after that it's dancing like crazy.


          • #6
            I also wonder why it took so long. Usually a hydrodistention takes less than ten minutes. Are you counting the time you were under anesthesia?

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            • #7
              I had more than just a hydro done. He did 32 shots of botox and removed a few cysts on my vulvar area. Those areas are actually what hurts the most today. I was scheduled for 2 hours in the OR and it took 2 and a half.
              This was the first time he did the botox in dartmouth on his own. My doctor has had all his training in cleveland. He is young but a great person.
              IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets


              • #8
                sorry wanted to write more but hit the button first oops. I was to out of it when he was in the room after the surgery to find out what our next step will be. They were to busy trying to make the pain go away. What do they do for small bladders has anyone heard??
                IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets


                • #9
                  unfortunately, nearly all patients have a small bladder. I read some where that normally an IC/PBS bladder is 650cc or less. All they can do is try to treat your IC symptoms, they cannot do anything for us having a small bladder.
                  'The will of God will never take you where the Grace of God will not protect you.'


                  • #10
                    ICDonna, what is the difference between a "hydroinstention" and an "office cystoscopy" or are they the same thing? I had water input to my bladder wherein the uro looked around with a camera. The procedure lasted between 5 - 10 minutes. He extended my bladder to 550 cc's. Thank you.


                    • #11
                      An office cystoscopy is when they just use some numbing medicine and look at your bladder real quick with the scope. They have to put some water in it so they can look. I had this done this past week, was not fun but not too bad. A hydrodistention from what I understand is when they knock you out in the hospital and actually distented your bladder with water and look with the scope which is when they can see the pin point bleeding and the uclers if you have any. This is what my uro wants to schedule in 6 weeks if I don't see improvement with the Macrobid that he has me on now. Sounds like you had an office cystoscopy and he just told you how much water he used to look into your bladder.

                      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