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    I had a cysto/hydro done in Aug and my urologist said that my bladder looked really good and he couldn't believe how much liquid my bladder can hold. My husband was in the room and the uro showed him my bladder and my husband even said it looked flawless. My question is, Can you still have IC even though my bladder looks good and can hold alot in my bladder? I have PFD and I am currently going back to the PT for my second round. I am not food sensitive, but I do notice that my bladder seems to be a little irritated if I don't drink enough water throughout the day but better once I drink. I do not get up to pee at night unless I have something to drink before I lay down and that is normally just one time. I have not had a potassium sensitivity test and frankly I am scared to have one. Any insight would be appreciated. Thanks.
    Kathy Strong

  • #2
    Are you certain you had a hydrodistention? These are almost always done in an operating room and family members would rarely be there. Did you have an anesthetic? It's not unusual for an IC bladder to look healthy and normal during an office cysto --- mine did --- but when it was distended with anesthesia, the IC was very visible.

    And yes, someone with good bladder capacity can still have IC.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Yes Donna, The cysto/hydro was done in a hospital in a special room that is designed specifically for the cysto/hydro to be preformed and yes, I had an IV anesthetic that made me go to sleep. I thought it was a little strange that my husband was allowed in but I am glad because it was more comforting and it seems like the hospital likes to accomodate people for their comfort.
      Kathy Strong

      Comment


      • #4
        Potassium sensitivity test optional?

        I don't want to alarm you in any way, but my urologist said to NEVER allow a potassium sensitivity test. He said they are testing for a pain level. He told me potassium is painful to all people, but VERY painful to people that have IC. He said it was not a very good way to diagnose because everyones pain level is different. I would just ask a few questions and possibly a second opinion before hand.

        My cysto was also normal. He put me on a daily dose of Elmiron. Will be several weeks before I find out if it helps.

        Let us know how it goes for you.

        Comment


        • #5
          Ic

          I thought you have cracks and scars on your bladder to have IC? MY bladder has scars all over it they showed me the pictures after I had my cysto-hydro under anestia. They put a camera in my uretha while i was asleep. So I am wondering from what I understand to be is that your bladder is scared up and thin layered to be diagnosed with IC. Donna I am confused can you help me with my question.
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

          Comment


          • #6
            When my bladder was stretched is when the thin lining cracked and it looked horrible. I don't recall seeing scars, but I have watched several of my hydrodistentions on a TV screen and my bladder looked very red and there was bleeding everywhere.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              Ic

              My bladder pics have big raised looking red lines or scars is what it looks like all over. Do you have to have those kind of pics for it to be IC? or can your bladder look perfectly normal and still have IC? Please if you know about this give me a reply thankyou.
              <center>
              <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
              </center>

              Comment


              • #8
                Linda,
                Your bladder doesn't have to "look" horrible for you to have IC. Mine didn't look that terrible, not as bad as many on here. However, I am diagnosed with severe IC and suffer pain constantly. (for four years) My hydrostention was done a while back so I don't know what it looks like now. IC is a diagnosis of exclusion, once they rule out all other possible causes, usually the diagnosis is IC.
                Hope this helps.
                Link to the patient information, everything from What is IC? to Disability
                http://www.ic-network.com/patientlinks.html

                American Urological Association Clinical Guideline
                Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                Comment


                • #9
                  Ic

                  I looked on the internet for pics of IC bladders and everyone of them looked red with streaks or lines, cracks in them. I also looked up pics of healthy bladders and they looked perfectly smooth and way different from IC bladders even the mild IC bladders you can tell there is a difference. So I got my question answered by looking on the internet myself.
                  <center>
                  <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
                  </center>

                  Comment

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