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  • New to IC

    Hello everyone, I'm new to IC and feel lucky after reading all the stories here. I've had what I thought was UTI's on and off for a few years with all urine cultures and cytology coming back normal with the exception of trace blood in the urine each time I went. I saw my PCP a couple of months ago with what I though was another UTI, bladder spasms, pain in my back constant urination only to find out there was no infection but "trace" amount of blood. She sent me to a uro and I was lucky to have found him. He repeated the cultures and cytology which were all normal, CT scan normal as well. He did a Cystoscope and didn't see any inflammation I do have to say after that I was in severe pain for 3 days, called my uro got an appointment right away he told me it was IC and I had my first instill WOW what a relief for me. I am currently undergoing instill once a week for 6 weeks along with Visicare once daily. We will see how it works for me and decide what if any treatment will be needed from there. As I said I am very lucky that I found a URO that treats IC and I didn't even know what it was. I found this sight to be very helpful and too know I'm not alone when the pain flares....is priceless
    Last edited by greeneyes; 03-24-2011, 11:09 AM.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

  • #2
    Welcome to the ICN. I am glad you found someone that is working to help you feel better.

    Sandra
    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


    • #3
      I have the dmso instills also they help alot, now I have once a month treatments. I am doing o.k sometimes I have a stress flare, I stick strickly on my diet also. Anyway hope all works for you and I am happy you found a good uro. This is an excellent forum you will learn so much and the people here understand as well. Keep in touch.
      <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>

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      • #4
        Happy you are having relief!

        I am glad they are finallly giving you some relief. I think the hardest is not knowing what is wrong and being in so much pain for so long! I am about to start the same treatment for 6 weeks which they are calling "physical therapy" but putting something in me to do something to the bladder floor or something. I don't fully understand it yet as my first treatment is Tuesday and then I guess I'll know more--but it is encouraging to me to know that it is giving you so much relief. That way I have hope to have relief too soon! I am glad you found this forum as it is a big help to me too!

        "What doesn't kill us makes us stronger!"
        Nicki

        Elmiron 100 mg / 3 times per day
        Meloxicam 7.5 / 1 time per day

        Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!

        Comment


        • #5
          Thank so much

          Sandra thanks for the kind words ,Linda May I'm glad the DSMO helps you as well. Living with pain has not been easy but I assure you I've been almost pain free from my first treament. I have what I call soreness but I can certainly deal with that and finding this forum was great. Niki I hope you find relief in your treatment. I find my pain increases when its time for my menses so I'm hoping the DSMO keeps working when that time comes.
          Last edited by greeneyes; 03-24-2011, 02:05 PM.
          IC diagnosis 3 weeks ago.
          Vesicare 10 mg once daily
          IBS and Gerd-Zegerid
          IC diet
          Elmiron 100 mg three daily
          Hydroxyzine 25 mg at night
          Amitriptyline 10mg at night
          Diovan 60/12.5 daily
          Topral 50 mg daily
          Zoloft 100 mg at night
          Klonopin .5 twice daily

          Comment


          • #6
            That is good news!

            I am really glad that helps--I can also deal with just "soreness" if it isn't downright sharp pain like I've been having. You gave me a lot of hope--thankyou! Nicki

            "What doesn't kill us makes us stronger!"
            Nicki

            Elmiron 100 mg / 3 times per day
            Meloxicam 7.5 / 1 time per day

            Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!

            Comment


            • #7
              Originally posted by NickiPage View Post
              I am glad they are finallly giving you some relief. I think the hardest is not knowing what is wrong and being in so much pain for so long! I am about to start the same treatment for 6 weeks which they are calling "physical therapy" but putting something in me to do something to the bladder floor or something. I don't fully understand it yet as my first treatment is Tuesday and then I guess I'll know more--but it is encouraging to me to know that it is giving you so much relief. That way I have hope to have relief too soon! I am glad you found this forum as it is a big help to me too!
              Now it might take up to the 4th or5th instill to start getting relief, and then your uro can put you on monthly instills. It just depends if this works for you, alot of icers do get relief this way.
              <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
                Thank you!

                My first one is on Tuesday the 29th so I am really hoping at least for a day of relief maybe!!!

                "What doesn't kill us makes us stronger!"
                Nicki

                Elmiron 100 mg / 3 times per day
                Meloxicam 7.5 / 1 time per day

                Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!

                Comment

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