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I would appreciate hearing from you who know first hand.

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  • I would appreciate hearing from you who know first hand.

    (sorry this is long there is a question at the end I promise)

    so for the past few months I was experiencing a slight to moderate burning after I urinated. At first I thought it was just a bladder spaz because when I was about 4 years old I was diagnosed with an overactive bladder so when I didn't drink enough water I would first experience a burning and then it after a short time my bladder would seize up and make me feel like I needed to void but couldn't. But the burning never lead to needed to void a lot, I still only go about 6 times in a day. Now I haven't experienced these symptoms in years so I thought it was odd and when the burning persisted off and on for months I went in thinking maybe it was an infection, when the tests came up negative they sent me to a Urologist. He viewed my records of going into the doctor for UTI infections and in the past 2 years only 1 or 2 out of the 14 were actual infections with bacteria. He came up with the conclusion that it was probably IC, he had me do an ultrasound to make sure there was no blockage or masses (which there weren't). No I didn't get fully diagnosed, his analogy was that hopefully with a diet change they symptoms will get better and I wont have it on my record making it hard to get insurance later on.

    After finding all this out I started doing my own research because I'm not completely convinced, and the more I read the more confused I get. I have a tender bladder, at most, it did get worse the week after he told me I probably had this, don't know if it was because of the initial stress or because he stuck me on a maintenance antibiotic (which I stopped taking out of a hunch and bladder pain is almost gone) . and the only symptom that makes sense with possible IC would be the burning in the vaginal area after I void. And the burning is mostly bearable, I don't have an over urgency to void, sex seldom hurts for me, and I cannot pinpoint which foods cause the symptoms. So from all you that know what it's like to have IC first hand, do you think its something else? or is it just possible that I caught the IC early on?

  • #2
    Anything is possible - it may be that you caught the IC early or it could be something else. I have mild IC -- I've had only one major flare-up (9 days) and 4-6 minor flare-ups since diagnosis. Most I could pinpoint to foods/spices that I ate and only one was after having sex (non-food related). I had months of IC type symptoms after that; only to discover that I had bi-lateral kidney stone blockages and needed immediate surgery to install stents. I didn't know the difference as I was new to IC, and it was hard for the doctor to determine from my symptom descriptions that it wasn't IC. Now that the stones are gone, and I'm feeling better, I have gone off of all IC meds and watch things I know are triggers and I'm doing very well. Symptoms and a cysto with hydro diagnosed the IC - so I know that I have it, but it is mild right now. Good luck and I hope you get some definitive answers.

    * ITP - autoimmune blood disorder - spleen removed 1978 and in remission since
    * MS- diagnosed Jan-2010
    * IC - confirmed by cysto and hydro Nov-2010 - currently taking no medication
    * possible adenomyosis - suspected by urogyno May-2010
    * low Vitamin D levels - taking 2000 IU daily
    * sleep issues - 1/2 alprazolam


    • #3
      Thank you for your input. It's good to hear of someone who has it that doesn't have it bad. I'm so scared right now, I'm worried what this will do to relationships and my daily life in general. I'll deal with the symptoms I just hope that my loved ones wont have to deal with it. I really don't want the day to come when I have to tell my fiance that I can't have sex because I hurt so much. And my parents aren't exactly understanding, my mom doesn't seem to think sex is all that important in the first place.

      Is there any knowledge that a damaged bladder like this could lead to dire issues later on? like bladder/kidney failure?


      • #4
        It's possible that what you have is IC --- you need to be working with your physician to determine exactly what's going on with you. I hope you get an answer soon; it's very frustrating not knowing.

        Stay safe

        Elmiron Eye Disease Information Center -
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        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.

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        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


        • #5
          I agree with Donna in the meantime stay on a IC diet till you know for sure.
          <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>