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Looking For Support/Ideas

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  • Looking For Support/Ideas

    I have been watching the forums for a while but this is my first post. I am a male, I developed IC 15 years ago after bladder surgery. It took a while to get diagnosed, but eventually I was. I had two hydros back then, neither helped my symptoms, and took elmiron for a year (lots of headaches) but kept on it. I did infusions at home, and eventually things settled down and got better.
    I remained in remission for more than 10 years till this past June when for no reason I can tell, I began to flare again. I have tried pain meds, elmiron (worse headache, so bad i had to stop it), cystoprotek (made things much worse), and have backed my diet down to pretty much a few vegatables, brown rice, chicken, almond milk (the vanilla kind), lots of water (evian) and not much else. I tried cystistat infusions as I thought that was what did the trick last time, but they made things MUCH worse, and have recently begun heparin/lidocaine/bicarb. The first one did ok, and I was able to get through the night only getting up three times, but now not even three days out things are worse. I have begun seeing a pelvic floor therapist, but that does not seem to be helping.

    I have a good uro and a pain person, but here I am flaring to beat the band and hoping for any relief at all. Any one out there with some magic? Let me know. I would love to have some relief, if only for a night or two.


  • #2
    So wish anyone of us could wave a magic wand, cause none of us would be here. Glad you had your remission for so long. You are positive you have IC? Maybe something else is going on? Have you had it checked out? Could be an infection? Don't know just throwing it out there.

    Hopefully you will get many other suggestions on here, in the meantime it sounds like you are doing everything you can to calm it down, and you know that takes a little time. Sure you will hear from others. Really hope you feel better soon and keep up with the docs who helped you before (hopefully they are still around!). Maybe it will go away again as quickly as it returned. Wish you well, let us know. Jill, wife of Bob


    • #3

      thanks Jill, I very much appreciate the good wishes and encouraging words. I am at a bit of a low ebb here. I am reasonably sure it is ic, (as sure as anyone can be about a disease with a thousand faces...) I had a fun cysto that showed an inflamed bladder but nothing else, have had a number of negative cultures, and feel poorly towards my urinary system in general, i will not be including my bladder on my Christmas list this year.

      You are right though, these things do take time, a solid two week flare with little relent is upsetting, you just sit there and hope this does not become your new normal.


      • #4

        Hopefully you and your uro can come up with a new treatment plan that will work for you wish you the best.
        <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


        • #5
          If you worsened just three days after an instillation, it could be that you have developed an infection. Any time we have anything inserted into the bladder it increases that possibility. Another thought --- when I did heparin instillations, I did them at home and did them twice daily for a while. They did help for a long time. If it seemed to help for those three days, it might be worth learning to do them yourself so you can up the frequency.

          I hope you find something to help you soon. I know it's miserable.

          Warm well wishes,
          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


          • #6
            My uro

            said lots of hot baths, this will relax the pelvic floor. I too was in remission for a while. I find exersise for my pelvic floor very helpful. I also get severe back pain.
            I recently went to a naturopath and she gave me some supplements that seem to be really working for me.

            Diet does take time...I hate that. Its been since September for me. I am now seeing the fruits of my labors. Dont stop searching for what will work for you.

            jean ann


            • #7
              Just curious, what exactly is "an inflamed bladder" and what do they attribute that to? Was IC mentioned by you or them? I know a bladder can get inflamed from many things, but...Did you get to see the pictures of it? Did they rule out other things they might have been looking for? If not, ask for the pics and maybe take it for a 2nd opinion. That is kinda vague isn't it? You need to be your own best advocate, never be afraid of asking questions. Wish you well in your search for an answer. Jill, wife of Bob


              • #8
                An inflamed bladder is when you bladder looks red and irritated, which is an IC bladder. It is very possible for people to have a diagnosis and then have a long remission. What wetonepdx is describing sounds very much like IC to me. I was diagnosed in Feb 08, with serious symptoms beginning on 12/27/07. After talking to my Dr and going over my medical history with him it is pretty obvious that I have been displaying IC symptoms for years. Not to the extent as I did in 07. I always had low pelvic pressure and pain, in fact I had several surgeries trying to find the cause of the pain. Now I know it was my IC.

                I am glad that you had such a long remission, and sorry that IC has come back to torment you. I would look into the infection idea. I know from experience that our uti's don't feel like the one's I had prior to IC. I thought I was having an awful flare, even went to the hospital (I have only done that one other time and that was when they were trying to diagnose me) then it turned out to be an infection. I felt like a dufus! All I can say is keep trying until you find something that helps. Are you taking hydroxyzine the antihistamine, I think it helps me a lot. Makes you sleepy too so helps with sleeping through the night. Also, not sure if you have tried any of the antidepressants that can help but it might be worth giving that avenue a try as well.
                Good luck I hope you find relief soon. Don't give up, something is going to have to help!
                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