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  • Frustrated

    I've had IC for about a year, diagnosed this past July. I had a good few months earlier this year (IC went into remission for no reason I can tell). Things got bad again in June and I was diagnosed by urologist in July. She started me on Elmiron and added Elavil a month later. I am also taking Enablex. My main symptom is frequency- I need to go about once an hour. I have intermittent pain- feels lime my bladder is full of acid when I need to go. My urologist says the Elmiron should e working by now, but Ive had little improvement. She would like to try Interstim, but I am having trouble getting approval from my insurance.

    Are there any other treatment options out there that I'm missing? I'm so sick of this. And yea, vie been following a strict diet.

  • #2
    So sorry for your frustration!

    I am so sorry to hear about your struggle. I can somewhat sympathize although I'm coming up on a year of symptoms in a few months. Just diagnosed about a month and a half ago. I am also no Dr., but I would definately try some other things before interstim. That seems like a very big commitment that should be tried after many other things like diet, other meds, physical therapy, TENS units, etc. I just read the book "The IC Survival Guide" by Moldwin and it lays out all the options in plain english. Maybe it will help?? I have just started physical therapy and it has really helped my frequency!! I am amazed! I have gone from 15 urinations in a day to 8 in two weeks. I have also had a series of "cocktail" instillations that haven't helped yet, but I don't think they are necessarily supposed to until a few weeks after the last one so I'm hoping for relief soon (today was my last one!). Best wishes to you!! Hang in there...


    • #3
      Hi Sam,
      Elmiron can take up to 9 months to reach full effectiveness, so July to now might not show if it's going to work or not. I do home instillations (marcaine, sodium bicarbonate, heparin, sterile water) and those have given me back a good quality of life. I would look into those before Interstim which is very expensive, invasive, and has a so-so success rate. I'd also try physical therapy first. I also had Interstim recommended to me, but decided to try these things first and I'm doing well today.
      Wishing you better days soon,

      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!