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  • #1

    burning Pain after first Elmiron instill?

    Hi all,

    I tried to search for some answers about this but couldn't find much. Has anyone who has gotten an elmiron instill experienced extreme burning pain in their bladder afterwards? I had pain during the instillation, but immediately afterward, I felt GREAT! No pain and I had been having a bad morning! After about a half hour, I started feeling like I had to pee, but it wasn't painful as it is usually, just urgency. Then I did my best to hold it and lasted about another 40 minutes. When I finally did go to the bathroom, it was very difficult to start and I had to push, and now I am having the most severe burning pain in my bladder and urethra that I've had in months. Is this just a result from being catheterized or is it something in the instill?? I had 3 instillations of Uracyst in March and I don't remember having so much pain afterwards...any thoughts? THanks for sharing!!
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH
    Tags: None
  • #2
    My first few DMSO treatments were very painful. In fact, I was ready to say no more when one morning I woke up and realized I had slept all night without even one bathroom trip. That was enough to convince me to continue --- after a while the instills only caused discomfort for a few hours.

    DMSO isn't usually held more than 20 minutes.


    Donna
    Stay safe


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    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.

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    • #3
      Thanks Donna!! For some reason none of the uros I've seen have suggested DMSO, although I have a friend who said it made her better.

      The fact that this is hurting so much now makes me realize how lucky I've actually been the last few months, even though I've been thinking "why aren't I progressing?" I've actually been in a lot less pain since this started in Jan/Feb, probably thanks to the diet and Elavil. Funny how it takes a step backward to make you realize you'd been taking steps forward!
      IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
      Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
      Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

      Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
      Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
      Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
      Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

      Comment

      • #4
        The pain might be from an infection. Elmiron is very soothing going right into the bladder and shouldn't sting. The catheter does burn if you don't numb the area with lidocaine. It's really easy to get infections from the catheter though. Even if you're in a doctor's office. It sounds like you're having a great reaction to the medicine, but you might have a UTI.
        Diagnosed with IC 2002: started IC diet

        Elmiron, Atarax, and Elavil started in 2003 stopped in 2005

        PTNS tried in 2009 with no change in symptoms

        DMSO tried in 2010-2011 with some increase in pain then some reduction of symptoms

        Hydro in 2003 and 2007

        Heparin cocktail instills from 2005 to 2010

        Trying Uracyst starting November 2011 with some success

        Remission 2014 - present but still using Uracyst every few months and mildly restricted diet (no tomato, vinegar, wine, or citrus)

        Comment

        • #5
          Try drinking a teaspoon of baking soda in 8 ounces of water for the burning.
          I've had many Elmiron cocktails and only had burning once or twice. I think it's
          from the catheter and not enough lubrication.

          Comment

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