No announcement yet.

not diagnosed but think l have IC

  • Filter
  • Time
  • Show
Clear All
new posts

  • not diagnosed but think l have IC

    hello im new here and would like to tell you my story l am 53 yrs old and have had bladder problems since l was 25 and got sterilised and they punctured my bladder by mistake they said, anyway over the years l havve steadily got worse about 5 yrs ago was diagnosed with stress incontinence and have recently been told its OAB the medication they have given me is same as for IC uro said l have urgency frequency and a lot of pain and at minute have had a flare for 3 weeks now and driving me mad hubby doesn't understand me at what im going through sorry to rant not used to this


  • #2
    Hi Agnes,
    Welcome to the board!
    It seems like there is some controversey even among doctors about whether oab and ic are symptoms of the same disease in varying stages or if they are truly separate. My doctor thinks they are separate and isn't even sure if I have OAB or mild IC. He differentiates the two mostly by pain. So the fact that my bladder hurts after sex and the fact that my bladder hurts when I eat certain things makes him lean towards mild IC but its not like there is definite diagnosis either way as at least for OAB its diagnosed by symptoms and ruling out other things via the cysto. Incontinence is almost always associated with OAB but that doesn't mean someone with IC couldn't have it too. OAB also usually responds well to bladder re-training and IC doesn't because they have too much pain to hold it. So PAIN vs leakage or feeling like you gotta run to the bathroom or lose it.

    An interesting thing I have read though that seems to differentiate the two groups is this:
    If you have two groups with frequency and urgency and ask them what is their biggest fear if they cannot find a bathroom the OAB group will predominantly say it would be the fear of wetting themselves or losing urine and the IC group will predominantly say the fear of having more pain. I thought that study was very interesting.

    Maybe it doesn't matter if they are going to give you the same medicine though I think in general they actually are not treated with the same medicine. The only one I can think of that is the same are the anticholinergenic medicines like vesicare, ditropan etc. Other then that, not sure. What medicine are they giving you?

    I have read Inflammation can cause OAB symptoms as well as bacterial cystitis etc. Maybe your doctor was looking for the hunner's ulcers that are associated with IC and didn't find them....

    Perhaps you could speak to him about it instead of his assistant and ask him why one diagnosis instead of the other.

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      Jeez a lou! Have you spoken with your doc about IC? That would certainly be the first step, print some stuff out and put it in his hands, some docs appreciate you saving them some research time. Give him this site info. Our uro actually told us to go home and research it online (we had never heard of IC) but not to believe everything. He went as far as telling us diet had nothing to do with symptoms (we no longer see him). Our male NP actually knew about IC, but had never had a male IC patient, and he is our savior. Wish you much luck in getting relief, and never ever despair over this. There is hope and help. And if you don't get it from one doc, move on. Hope you feel better soon.


      • #4
        I totally understand how frustrating it can be not having a definitive diagnosis. Are you seeing a urologist? If not, I think that could be a good step to take.

        In the meantime, you might want to give the IC diet a try. You'll find the link to the latest food list in my signature below.

        Sending warm healing thoughts,

        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