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just received an IC diagnosis

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  • just received an IC diagnosis

    Hi everyone. I have been reading the posts on this site for a long time but never posted myself. I am having a hard time lately so I thought maybe I'd give it a shot.

    I am a 29 year old living in Alaska. I first started having bladder issues in 2007 after a bad kidney infection. At that timethe problem was confined to frequency and lasted about 2 months. My primary care doc chalked it up to damage from the infection. I had episodes of frequency on and off for the next couple years, but never sought treatment.

    The real trouble started last August. I can literally remember the second it began. I was at my desk and realized I had to pee, so I went. However, I still had to pee. My doc thought I had an infection and put me through a couple rounds of antibiotics, which did nothing. Over the next couple of months I had to pee about every 15 minutes.

    My primary care sent me to a urologist, who put me on several different overactice bladder mess, but nothing worked. I had an in office cystoscopy and urodynamic testing. Everything was clear. I asked the urologist about ic but he said ic was a very rare disease and it was very unlikely I had it.

    Around January my symptoms began to improve and by March I was totally symptom free. I thought I could put the whole terrible episode behind me.

    Unfortunately two weeks ago the frequency returned full force, but this time with abdominal pain that got worse as my bladder filled. I went to a different urologist and was prescribed Elmiron. It took 4 pharmacies to find one that had it in stock I only have a two week supply, and I am worried I will not be able to refill it. The urologist also prescribed another overactive bladder med. I am following the diet as well.

    I am really struggling with this. I can't handle the thought of going through this again. It took my life away last time. I couldn't hike or bike or go to the gym or do anything I like to do. For the past two weeks even sitting on the couch hurts. Work is hard. How do I cope with this?

  • #2
    Hi, Sam ~ I'm sorry you're having such a terrible time but it's wonderful that you've found a doc who will treat you if it is IC. ( that's gotta be a challenge to find a doc familiar with IC!) Please don't give up hope. Many of us were in such pain/discomfort that to make it through hour by hour was agony and we wanted our "old" lives back. To my amazement, I AM living a much more "normal" life once again. I have my moments, but I think mostly because I've gotten too lax with my diet and am definitely finding out my trigger foods. Also, we're preparing for my Mom's 90th birthday this Sun so I've been on my feet way too much and am paying the price. (She's well worth it, though!)

    Keep doing the good work following your doc's advice and generally with trial and error, you'll see good results and this frustrating part of your life will be under control soon.

    Blessings and isn't it wonderful to have this great site to share, get info, and ask questions!!!! Keep us posted how you're doing.

    P.S. I understand completely remembering the moment everything went haywire! Hang in there!
    Last edited by nanawaggs; 07-08-2011, 04:58 AM. Reason: Corrected to read "I AM living a much more normal life
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret


    • #3
      to the IC Network. I know you'll find a lot of support and information here.

      Are you following an IC diet? If not, I suggest you begin today --- that single step can help more than anything. You'll find the link to the latest food list in my signature below.

      Warm hugs,
      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


      • #4
        THE STRICT IC Diet really makes a differance.. Hang in There..It will get better.. It took me over 6 months before I started getting relief.. but it does come.. have faith and take each day at a time. And work was hard.. I am a manager in retail and work 55 hours a week.

        God Bless,


        • #5
          Really feel for you, and have read there is hope of a new generic Elmiron. I spoke with the manufacturer of Elmiron and they said it will make it again soon. Praying your supply in Alaska arrives soon. I found relief from rescue installations for awhile. There is so much information out here and am learning it is individualized.

          Trust you will feel better again!

          Diagnosed IC March 2011
          Vulvadynia,Pelvic floor dysfunction. Adhesive tissue repair, rectocele repair 8/11
          Tried:Rescue Instillation "heparin,lidocaine cocktail" ( Happy Hour ) discontinued after 12
          Physical therapy
          Hydroxizine25mg @night
          Amytriptolyne 20 mg@bed
          Zolpidem 5mg @bed

          Today: Nutritional Balancing Program. No longer on any medication. Diet& supplement specific.

          "You have to laugh to keep from crying"
          "long road,little wheel, it takes a lot of turns to get there..."