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Diganosed with IC last June.. Is it getting better?

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  • Diganosed with IC last June.. Is it getting better?

    Hi all,
    I was diagnosed with IC last June via cystoscopy. I had spots of inflammation and one place where there was pinpoint bleeding.

    I feel like things have SLOWLY started to get better.

    I saw a PT for ~ 5 weeks in the beginning who also diagnosed me with PFD. I think that this has pretty much gone away but it still feels weird down there when I sit for long periods of time.

    I can drink alcohol, eat sugar, etc. without it bothering my bladder. I do get twinges of pain now and then but I cannot seem to relate it to anything I eat. Also, I can go all night without having to urinate and have pretty much from the beginning.

    Do you think I can completely heal from this?

    Also, does anyone get sore spots on the tip of there tongue? I am beginning to think my PH level is too high and that is what is preventing me from fully healing.

  • #2
    Congrats on your progress! You must have a very mild case of IC if you can drink alcohol, etc. and go all night without getting up. You are very fortunate. Can you share what treatments besides PT you have used? I was diagnosed in October of 2010 and am on Elmiron (400 p/day) and 20 mg. of Elavil. I think I am just now starting to feel better. I'd love to know what has worked for you. I understand that there is no cure for this, however you do seem very close!!
    Hugs to my IC pals!

    Wife and mom of 2 kiddos (11 & 13). I am 51 years old
    Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
    Elmiron instills gave me 2 full months of total remission until January of 2011
    Started Elmiron on 10/22/2010 (200mg twice per day)
    Started Elavil 20 mg. in 2/2011 - 8-2012
    Started 25 mg. Hydroxyzine in July 2011 - 10-2012
    Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
    Tums with any possible caution foods, now I take nothing but Hyophen if needed
    Started running in February of 2011, yoga in 2012 to current
    Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
    No longer using any supplements
    Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!


    • #3
      What meds are you taking that are making you feel better since it sounds like you don't really "need" the diet.

      I think people can go into remission or be mostly symptom free, and maybe for quite long periods of time depending on what they are taking. But its not curable unfortunately YET, hopefully soon, someday.

      Its really unusual to have a high ph, unless you are ill, most people have a low ph and tend towards acidic. Did you buy some test strips? They are usually good for both mouth and urine but read the label and make sure.

      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


      • #4
        I am taking a multi-vitamin (food based) and a probiotic.


        • #5
          I have been seeing the term "food based" a lot lately. Where do you find multi vitamins that are food based. I would like to research them further to see if I could possibly take them. I have always taken a multi in the past, until IC. I am a picky eater and now I am more limited. I feel that I really need the extra help.
          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