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My Story, not sure if IC or not

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  • My Story, not sure if IC or not


    I'm Karen from the Gold Coast Australia. Great to stumble on this website - I now know there are other people out there who no what I am going through. It all started after the birth of my third child - I was 31, now 36. I started with symptoms such as frequency and burning when visiting my GP they would give me antibiotics and send a sample off. The test always came back negative - I thought I was starting to go crazy!! after several years I was referred to a urologist, he performed a cystoscopy and filled my bladder (hydro) I had relieve for a whole 9 months! I then went back for another cystocopy and hydro - no relieve this time. I have three small children and I couldnt leave the house the pain was so bad when my bladder filled with urine. Although I have urgency and frequency I also have this dull pain in the perinium area. The Urolologist has commenced me on Detrotusil (think thats how you spell it) the symptoms have now settled down - although I still have a mild feeling all day. My urologist has said that as I am responding to anti spasm drugs that I do not fit the criteria for IC. My bladder appeared normal during both cystocopy's. He is thinking I have overactive bladder. He wants me to have a test done where they insert a catheter in to me whilst awake as well as the rectum to measure contractions in my bladder whilst it is filling. After reading the stories that people have been through in relation to catheters I'm inclined to decline the procedure. I find that if I am really stressed then the syptoms flare, also around period time and afternoon. I had to take two months of work over xmas as the symptoms were so bad - house bound really. Any advice would be much appreciated.

    Kind Regards


  • #2
    HI Karen,
    Welcome! and Glad you found this wonderful site of ours. It's a great place to find info, learn what others have tried and just vent when it's a bad IC day.
    I'm sorry to hear you are having such a rough time. It does sound like you have IC. The dr.s don't always have to 'see' IC to dx now......unless you have an old time dr. who only goes by the book........and if that's case I would say 'goodbye' to him and find a new dr.!
    There's lots of meds out there to help with frequency, urgency and bladder pain....Elavil being one of the great ones.
    Have you tried the IC diet? It's a MUST for people with IC! It helps SO much once you stop eating trigger foods & drinks, or trigger vitamins..etc.
    I hope you are able to get some relief so you can go back to raising your children and a more normal life. You can PM any of us if you have questions....lots of great ladies here! Take care and Good luck! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


    • #3
      You might want to think about seeing a different urologist for a second opinion. And I agree with Roxie that if you aren't following an IC diet, it would be a good idea to begin today. You'll find the diet in our Patient Handbook at

      Sending healing thoughts,
      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