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Having Doubts . . . and a question for you

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  • Having Doubts . . . and a question for you

    Please bear with me while I ramble a little.
    I seem to be one of the very lucky ones that seem to be feeling better all the time. I guess I am in remission. The last symptom I had (urinary retention) seems to be going away since I started on Crestor (for high cholesterol - strange, I know!)

    It's funny how when you get better you start forgetting to some extent just how bad the pain was before. I think it must be like childbirth. My sister said even though the labor was horrible, the memory of that pain fades away with time. I still have flashbacks occasionally of the most horrendous pain imaginable but I can quickly put it out of my mind. The point I'm trying to make is that now I find myself doubting my diagnosis. I didn't have a cysto with hydrodistention. I was diagnosed on a long history of symptoms and a vaginal exam. Part of me wants to tell myself, "oh you really don't have this dreadful disease that could come back at anytime". In fact I find myself testing the limits every day - eating pizza and chocolate - telling myself I can't have IC if I eat this stuff. But still scared to death to go off the elmiron and hydroxyzine. Then I feel like an idiot for taking medicines for the rest of my life for a disease that maybe I don't really have.

    Let me ask you guys a question and maybe I can answer this for myself once and for all. In a normal bladder - if you have a urinary tract infection - is the pain, excruciating? Almost unbearable to the point you wish you could die? Or is this kind of pain with a UTI uncommon in a healthy bladder?

    I know one thing I don't want to do is go to the doctor and have invasive tests run to try to help me figure this out. I am quite certain I do have a very bad case of Pelvic Floor Dysfunction and I don't want to do anything to make that worse.

    Well, thanks for bearing with me as I kind of "think outloud" here.
    Any comments or insights would be greatly appreciated.

  • #2
    HI I agree with you .....kinda outta site outta mind mentality......but if the pain was longer than a week (like a normal UTI with meds) then you probably have IC.....but are in remission for some unknown reason. Just remember.....don't go back to eating and drinking all the bad stuff....cause it can always come back at any given time.....and BAM could be worse than before...usually IS worse than before. Just feel thankful you aren't in pain.....and rejoice! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


    • #3
      Well, that happens to me mentally when I'm in remission. I sort of forget about the IC. Unfortunately, it does flare up occationally and reminds me all about it. Like right now! I was in a solid remission for pretty much a year, but a bout of severe stress brought on another flare during the holidays and I'm still trying to get back into remission.

      If you had UIT symptoms without a UTI...your bladder was not healthy. Clearly elmiron and the antihistamine worked for you. You could try reducing your elmiron or antihistamine and see if they still continue to work at the reduced dose.


      • #4
        It sounds like you may be one of the fortunate ICers who are helped significantly by elmiron. If that's the case, the symptoms may come back very quickly if you were to stop taking it.

        Stay safe

        Elmiron Eye Disease Information Center -
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        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


        • #5

          I am so glad to hear that you are feeling better! As for the UTI question, I think for healthy bladders UTI's just generally burn upon voiding. But for us IC'ers it is a much different story. I feel that unbearable pain all the time. Diet, meds, and all! Sure am hoping for a better day like your own! Let us all be grateful! And hopeful too, for the same!! What matters is that you got treated for your symptoms, and it worked. So don't feel bad about anything regarding your health. If you need assurance, from the cysto/hydro then one day you will be so compelled to do so. Yeah, and the whole testing the diet thing.... ooo.. highly not recommended! Might find answers you wish you hadn't! may the symptoms stay far far away!!! All the best !
          Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

          Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

          Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.


          • #6
            Janie...When I had UTIs before my diagnosis, they were very painful. Because I was diagnosed with IC via c/h, I think I may have always had a bladder problem. I think that I have always had to urinate much more than what most people would consider "normal", but the IC pain that sent me to my first uro did not begin until August of 2001 during a very stressful time in my life. I did not have a UTI then when tested. Because I think this is true, I cannot answer your question about the pain of UTIs with a normal bladder with any certainty. All I know is that UTIs are incredibly painful for me.

            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

            Where I can be found most days.

            Link to the ICN Patient Handbook:

            Link to the IC Diet:

            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


            • #7
              Janie I am glad you are doing well. I remember following your posts when I was first diagnosed. I agree with the burning feeling when others have a uti. I never had the burning feeling except when I was younger. Also, If you do not get better taking antibiotics for uti then you probably have IC.:woohoo:
              past meds:
              elmiron 100mg 3 x a day
              cystoprotek 6 a day
              elavil 10 mg
              Femcon fe
              non-shellfish vegetarian glucosamine HCL
              750mg once a day


              • #8
                Thank you everyone! As always the folks here at the ICN have been incredibly supportive and informative!! I think Donna might be right about me being one of the lucky ones with Elmiron. I've also gotten my allergies better controlled and try to keep my stress level down (as much as you can when you have a five year old :-)
                Sharon, sorry to hear that the UTIs were so painful for you too. I hope you don't get them anymore.

                Again, thanks so much to all that responded. I'm going to try to take Kirsti's advice and try to stop testing my dietary limits so much. Kirsti I hope you find your miracle soon and stop having so much pain.