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  • Frequency/Urgency gone - Burning still here

    I believe that my frequency and urgency have pretty much gone away, especially on good days. The past two days I have only used the restroom 4 or 5 times all day long. I don't feel like I have to use the restroom either most of the time. My problem is the burning feeling. The past two days have not been bad, but it is still there, any suggestions besides Tums and Prelief? Since my frequency and urgency have gone down, is it only a matter of time before the burning goes away or is it here forever?
    Diagnosed with IC - March 2007
    Diagnosed with vulvodynia - June 2007
    -Lots of prayer
    -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
    -Taking Prelief as needed (stopped because of pregnancy)
    -IC diet

  • #2
    Elavil helped me with burning. Also changing to a birth control pill with more estrogen also helped.

    For short term: gel ice pack? drink 1/2 tsp of baking soda dissolved in 8 oz water (if you don't have issues with sodium), rinsing with cool water during/after urination.

    Glad you are feeling better & hope you have even better days ahead-
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #3
      My uro did not want to put me on Elavil because of weight gain, and also I am going off of Elmiron in two days because we are trying to conceive. I am assuming Elavil would be a drug I would not be able to use during this time. Am I right? Any other medications that will help the burning and able to be used during pregnancy? Thanks for the other suggestions Kadi, I will try them.
      Diagnosed with IC - March 2007
      Diagnosed with vulvodynia - June 2007
      -Lots of prayer
      -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
      -Taking Prelief as needed (stopped because of pregnancy)
      -IC diet

      Comment


      • #4
        Hi Kristi,
        Yeah, I did gain weight on the Elavil. Gained 35 pounds, have lost 12, still working on the other 23

        Check with the doctor on the baking soda, okay? It's really high in sodium & I don't know about its use in pregnancy. Some patients have remission during their pregnancies, I'll pray that you're one of them!
        Good luck!
        Kadi
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          You didn't mention how much you are drinking. Not getting enough water to drink can cause burning because the urine becomes concentrated.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            Donna,
            I don't keep track. All I drink is water, but that might be it. How much should I drink?
            Diagnosed with IC - March 2007
            Diagnosed with vulvodynia - June 2007
            -Lots of prayer
            -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
            -Taking Prelief as needed (stopped because of pregnancy)
            -IC diet

            Comment


            • #7
              You are my exact oposite.
              I get rid of burn - it is urgency that drives me crazy.
              (however no frequency - I can hold forever.. strange right)

              This is what I did for burn:
              - Sit on the heated pillow (Sunbeam) you can get it in any pharmacy
              - Chinese herbs (did not take care of urgency but eliminated burn 100%)
              the standard mix for UTI worked... if you want to go in path of alternative medicine check your local ITM practitioner.
              - Puridium (but it is a temporary fix, not great in the long run)
              - warm baths (temporary fix)
              - backing soda w/water
              - exercise
              - some diet modifications (usual suspects)

              I believe it is additional estrogen you might need, I had no experience with
              that but some people are using gel

              Comment


              • #8
                The burn has gone away for now, yea! I have had quite a number of days in a row where I have felt almost normal. Besides the itch here and there, and yesterday I ate Chick Fil A and the next time I used the restroom it burned as I was peeing. But then I drank alot of water, took some TUMS and felt better. The last time I had a bad day was in the middle of June. A little over a week ago I went off Elmiron to try to conceive and I was so concerned about how bad I would feel after I got off that medication, and I have been blessed by God that I have felt okay. Thanks for all of your suggestions!
                Diagnosed with IC - March 2007
                Diagnosed with vulvodynia - June 2007
                -Lots of prayer
                -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                -Taking Prelief as needed (stopped because of pregnancy)
                -IC diet

                Comment


                • #9
                  What are the other RX meds? I thought I read somewhere recently that Urised was taken off the market and I think that's the only other burning med I'd heard about. I'm in the US by the way -maybe these other meds are in Canada or Europe?
                  The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                  First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                  Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                  Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                  Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                  BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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