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Do you think this may be IC or not?

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  • Do you think this may be IC or not?

    I have had problems for years now. I finally have my doctor realizing that it is not all in my head but I have to tell him where to look. I have had many UTI in the past which come quick (within 1 hour of feeling it come on my urine is red with blood) but overall I have not really had one in about 2 years. I still have the pressure of always having to go, pain during sex but not when I go pee. Just have a cystoscopy and cystometrogram done. Well that really hurt. The Urologist was really good and took the time to try not to hurt too much. So far all I know is that my bladder is really inflammed and swollen. My capacity was 5cc, not good. He put me on Macrobid antibiotics for a month and wants to see me in 6 weeks. I go to the bathroom at least 20 times a day and night. What should I ask when I go back? Could it be a bacterial infection for years without showing up in tests or not having a fever or anything else.

  • #2
    Sounds to me like you have IC... Although I'm not a dr. Is uggest your trying to find a specialist in Ic around your area. I dont think your dr know's much about ic. I had pretty much the same scenerio as you. I felt like I had uti's for over 2 years. I was giving antibiotics over and over again. No sign of bacteria in my urine. So I finally saw a specialist and I was finally dxd.

    I was recently on Macrobid... ughh I hate that med. It made me nausious and throw up. I hope that it doesnt have the same affect on you.

    Wishing you all the luck.


    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06


    • #3

      this sounds like you have IC to me. You're symptoms are pretty much the same as mine and I too had lots of uti's in the past.

      I also was told it was all in my head constantly so well done for finally getting them to listen to you.

      I was given so many antibiotics it was a joke and they made me feel terrible. It took me a 2 years to be diagnosed so it does take awhile so be patient! Some doctors dont recognise IC while others recognise it very well so it all depends on which dr you see really!

      I will get as much info together as you can and try the IC diet, maybe by some books??

      If it is IC it does get easier in time I promise
      Started with symptoms 2004 after a severe infection.
      Was diagnosed with IC Feb 2006 after cystoscopy.
      Diagnosed with vulvodyina and PN in july 2006.
      Dignosed with ME and IBS Oct 2006.
      Currently taking Amytriptaline 50mg, regular pain killers and birth control!
      Also doing IC diet and regular use of heat packs.
      Still struggling with IC and controling my symptoms so looking for some help

      also recently had abnormal pap, CIN III and just had LEEP done 2007


      • #4
        You do have signs and symptoms of IC. And some doctors do diagnose IC on symptoms alone, but either a cystoscope with hydrodistention (done under sedation in OR) or the PST (potassium sentivity test) done in doctors office are truly the only way to diagnose it.

        You can look in the patient handbook link above. It has great wealth of info. Also something else I would suggest doing while you are doing the antibotics is the IC diet. You can find out the list in the handbook
        God grant me the serinity to withstand the days ahead!!!

        My myspace link...


        In Memory of My Father (Lawerence) 1/25/2007

        Interstim Sept 2001
        1st InterStim Removal May 2005
        2nd Interstim Implanted May 2005
        2nd InterStim Removed March 2007
        Hysterectomy 1999
        Tubes Tied 1997
        C-Section 1996

        Me and my kids

        Taylor (my daughter) Me and my daughter My son Cody and Taylor


        • #5
          I have to agree that interstitial cystitis sounds like a possibility.

          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
            Thanks for everyone's support. Hopefully my family doctor is right and this urologist is a specialist in IC. I have been on the antibiotics since Friday and I feel worse now that I did before I went on them. I will give them a chance though. Hopefully when I go back I will get more answers, and hopefully some relief. Also wish my husband would understand that I am totally exhausted.