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Confused and feeling hopeless

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  • Confused and feeling hopeless

    I am a 28 year old male. I have no offical IC diagnosis, My official diagnosis is prostititis. I have been to over seven urologists including a prominent ic guru at the cleveland clinic.

    I have had two cystos with distension. Both Dr.'s said my bladder looked mildly vascular. One said I could possibly have "early onset" IC. He said it was the most mild case he had seen if I had ic. I have had three Dr's say no to the thought of ic

    I have no pain with bladder filling. I pee about 12 times per day. Usually when I pee its 8oz or more. My bladder area never hurts all of my irritation is 100% penile. I have tried elmiron, nerve modulation ankle, ic diet, ditropan, pelvic floor physical therapy but nothing seems to help.

    I have no idea what to do next and am feeling very depressed

  • #2
    Welcome to the ICN. I am sorry that you are suffering and having a difficult time right now. There are other oab meds that some find helpful. Not all work for everyone. That might be a road worth trying.

    We have a few men on our boards these days, have you seen the men's forum? You might want to post there as well and get some input from men that might have some more to share with you. You are always welcome anywhere on the board, just wanted to share with you where you might communicate with men more.

    Sometimes it is very helpful to talk to a professional when you are living with a chronic condition. I know that I have found it helpful to me.

    I hope you find answers soon, I am sure you are very frustrated.

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      to the IC Network.

      I do have a suggestion --- if you can find a doctor who is willing to work with you to find a solution, try to stick with him/her --- it can take some time to diagnose IC, and every time you see a new doctor, it puts you back at square one.

      How long did you take elmiron? It can take six months or longer to become effective.

      Warm healing thoughts headed your way,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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:


      Diet list:

      AUA Guidelines:

      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.

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


      • #4
        I took elmiron for 1 month but started to have gi side effects gi doc says everything intestinal is fine.
        I wish there was a conclusive way to tell whether my difficulty is bladder or prostate related
        After stopping the elmiron the gi stuff improved a little bit.


        • #5
          I figured I would give you another welcome as well. I happen to be a male, by the way. I can't say for sure what you have got now. Regardless, I was diagnosed back in 1997. Anyway, I was told my prostate was inflamed at first. (and put on antibiotics for 2 months) That did not do any good. I was put on more for 2 more months.(no improvement) OK. I was put on more for 2 months.(although I finally stopped as I could tell prostate was not messed up)(then got IC diagnoses) Oh! Most dudes your age don't have prostititis.(although you still could) Besides, I never complained of pain and got told IC. Yep! I even viewed the picture of my bladder.(yuck!) Of course, none of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep. I would not mind peeing only 12 times in a day. (even though more than considered normal) Oh, well!


          • #6
            Does anyone here live in the North Florida area? I would like to find a Dr. who is up on all of the current treatment options. I have been given elmiron and took it for a month and it caused me to have several bowel movements in a day and the almost constant urge to defecate. Saw a gastro and everything was fine. Quit the elmiron and number 2 was no longer a concern.

            I have asked Dr.'s about rescue instills but all four I have seen have refused because I'm twenty eight and male. One Dr. told me he was an expert but the only option was elmiron. I'm miserable constantly feeling the need to urinate. I know I can get better but I need to see someone who is up on the latest treatment.

            Any suggestions for Doc's to see or have helped you in North Florida would be awsome