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The story so far

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  • The story so far

    Ok, yes, I'm also male, which I believe is not nearly as rare as people think. I spent a good year or more working through what I thought was a prostate problem, and I believe there are/will be many more that follow this path.

    Essentially, here's the highlights:

    1-Not a very healthy diet at all, so there's the foundation for trouble.
    2-Received a UTI from an encounter with a woman I knew very well. No need to judge me, as I've now beaten myself up for this for four years. I was single at the time and we were coworkers, so I've never said anything. After going to the weekend non-emergency clinic, they gave me 10 days of an antibiotic, although I didn't really test positive for anything.
    3-Weeks later, still had some symptoms. Visited a GP doctor and did 30 days of Cipro, while still not testing positive. Also, a normal PSA test. Sounding familiar?
    4-A few month later, saw a much better doctor (still a GP) who diagnosed a slightly enlarged prostate. Still no positive test for bacteria, another 60 days of Cipro...convinced I had some sort of deep infection, took enormous amounts of Cranberry pills to try to rid myself of it. You know where this is going...
    5-After apparenly a normal sized prostate now, but bladder pain and nighttime frequency so bad I was barely sleeping at all, I saw a urologist who immediately said no infection, but here's 30 days of bactrim anyway. And this guy was head of the department and teaches Urology! Fortunately, I stared at the bottle so long it just seemed taking it would make things only worse, and the side-effects of bactrim are pretty scary. So I didn't take them. I began a more natural path.
    6-Tried the "broccoli treatment", which made a difference. What I now know is that the natural quercetin in the broccoli was helping the inflammation.
    7-Tried again another Uro, who was a specialist in newer technologies for surgery, etc., and seemed to be as more open-minded. He gave me a non-acid diet to try (basically the IC diet), along with prescription-strength alleve, and immediate relief.
    8-Unfortunately, took a job that required me to commute and move, which has put me in my current situation of burning hip pain (at the "points" of my hips), possibly from constantly tensing my muscles. The move also took me away from this Uro, which I regret, but after much diet modification I have made many improvements on my own.
    9-Ordered Cistoprotek, which after 45 days is starting to reduce the duration of my flares, and giving me a pretty normal life back while I'm sitting/lying down. Of course, I've put on weight, but I've realized that if my stomach is full, symptoms seem to also be better, so I have to fight the urge to eat salty things all the time. Also, I get Evian in bulk, but I know that may sound familiar too...
    10-So the current situation is that I have a life, and a job I can do without being on my feet all day, all blessings, especially a super-understanding wife. My next step is to try to add bovine-colostrum to the Cystoprotek in an effort to rebuild some of the damage. I'm also considering some way to take my diet to the alkaline.

    Anyway, everyone has helped me here more than you'll know! The depression from feeling constant pain and "brittleness" has been almost unbearable. I haven't posted much as I'm semi-reclusive about these things, but I felt maybe my story will help someone else find some success.

  • #2
    I learned more about my Ic by searching on the net along with the help of this forum.

    Are you seeing a Uro now? there are different treatment plans for IC.

    The thing is every icer is different and it may take awhile to find the right treatment plan for you.

    Do not give up hope, I almost did! this forum is great for info, venting and for support.

    We all know and understand what you are going through, and I know at times it can be frustrating.

    I have tried numerous times to get Oprah or Dr. Phil to do a segment on thier show to no avail.

    I would not wish this desease on anyone but, I bet if one of them big talk show host ever got Ic; they would not hesitate a second on doing a segment on there show.

    It's a shame too, the world needs to no about this depilitating desease.

    Did you know that there are dr's that don't know about this desease.

    Everyone knows about cancer, hepititis, ect, did you know that when Ic is at it's worst it is compared to cancer.

    I was diagnosed last year and suffered tremendously the first Uro (frankenstien) would not give me pain meds I suffered three of the longest months in my entire life.

    By the time I found a second Uro he could not believe my condition I looked like a train ran over me.

    Thank God almighty he found the right treatment for me and I am doing allright.

    So, please do not give up; if I would have done what I almost done I would not be writing you this letter.

    I pray that you will find relief soon, keep in touch and let us know how things work out for you.
    <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


    • #3
      I have to agree that IC is under-diagnosed in men. Just a few weeks ago I had this discussion with my urologist.

      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
        If I'm not mistaken Evian has sodium in it, you might want to check into that if you are staying away from salt. I hope the cystoprotek continues to help and you keep getting better. For the tight muscles you might want to try some basic yoga or pilates. There are a few books sold on this site that have instruction for which poses to try for relief. I personally love Isa Herrera's book. It is called Ending Female Pelvic Pain, if you can locate it in a library and find the poses they do help.

        wishing you the best,
        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


        • #5

          Thank you, this is good information. The sodium may explain a lot as I seem to be attracted to salty fries and other unhealthy things as the salt seems to help symptoms. I will keep that in mind. I've also recently has good luck with Fiji, although most regular brands like Aquafina, etc, that have "Potassium Bicarbonate", or similar additives on the label are worse on me than most sodas.
          Yoga does seem like a good way to go. I used to do some for weight loss, and picking that up sounds like a good suggestion.


          • #6
            Just want you to know that you shouldn't feel bad about the thing with the coworker. As far as I know, a UTI as not an STD (and since you never tested positive, you probably didn't even have one). You can get them after sex, but they're not catching. And even if it would - stop feeling guilty and beating yourself up over it. You were consenting adults, you had fun, it had some unforeseen and unfortunate consequences.

            About all the rest - hope you'll be feeling better soon.
            Not diagnosed yet

            More than a decade of 'bladder issues'
            Main symptoms: burning pain in urethra, urgency, frequency
            Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
            Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
            Starting physical therapy soon

            Getting married 7/7/2012