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My name is Ronni and I have IC.....

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  • My name is Ronni and I have IC.....

    That is how I feel most days! Long story short, I have been thought to have MS, Lupus and RA. So far, none of the testing has confirmed or ruled out any of those, so I decided to take my symptoms one at a time and see specialists. I started with a urologist for my frequent UTI's and incontinence. He did some tests and diagnosised me with stress incontinence and IC. I hadn't even heard of this before. He explained that the UTI's actually flairs--that would explain why my urinanalysis always came back with just slightly elevated white counts. And I just thought I was getting really good at recognizing a UTI coming on--LOL. He also said that my bladder, either because of the IC or genetics has an unusually small capacity. I started taking Elmiron, and I haven't noticed any significant changes.

    Last week, I couldn't sleep--not that I normally do sleep, but I was in a lot of pain, so much that my husband took me to the ER at 3am. I promise it felt like I was in labor. I was admitted for further testing, as they thought I had a kidney stone, but alas nothing showed up. My PCP came in and said she didn't think IC was the cause, and when I asked her to check with my urologist she had me discharged home. SO, here I am still in pain, my urologist has been out of town, so hopefully will hear back soon for some relief.

    That's my story.......for now anyway.......

    Prayers for calm bladders,


    35 year old female
    Married with children
    Total Hysterectomy in 2000
    Several autoimmune issues: asthma, photosensitivity, ezcema
    Diagnosed with IC May 2011

  • #2
    Hi, Ronni ~ I'm so sorry you've had to find your way to the ICN but you're in the right place for support and information to help you through the rough roads IC may lead you.

    I sure hope your doctor gets back soon and can begin treating you for this pain.

    Take care, keep us posted and prayers that you'll soon feel much better.
    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.

      Elmiron can take up to six months or more to become effective so don't give up yet. You didn't mention diet --- if you aren't on an IC diet, I suggest you begin today. You'll find the link to the latest food list in my signature below.

      Warm healing thoughts headed your way,
      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

        I started the IC diet in May. I really hope the Elmiron kicks in soon.


        • #5
          Ugh...just 12 more days

          So, URO nurse finally returned my message from Wednesday regarding my continued pain. All they said was to keep taking the Elmiron, Vesicare and Ibuprofen, which I have been doing anyway.

          I have an appointment the 13th, if I make it that long.


          • #6
            Boy I sure hope they give you something for the pain while you're waiting for the Elmiron to kick in. Ibuprofen can be a real irritant for some people with IC and doesn't always cut it anyway. Is your dr. against temporary pain medication? I don't think I would have made it in the beginning without a pain med.


            • #7
              I just don't know what I am going to do until that appointment. I drag myself out of bed for work, struggle through the day just to be able not to sleep at night from the pain...then start over again. I can't afford another ER visit so I guess I will just suffer through.


              • #8
                Can you phone the dr. and tell him you need something stronger than ibuprofen? Sometimes I don't think they realize how much pain we are in until we make a fuss. I learned that I had to speak up and tell them how bad the pain really was, and that I needed something.