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Newly Diagnosed

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  • Newly Diagnosed


    Found This Message Board A Week Ago And I'm So Relieved. I Reread The Success Stories Constantly. They Make A Huge Difference When I'm Scared. Here's My Story:

    A Year And A Half Ago Was On Vacation At The Beach. I Felt Like I Had A Bad Urinary Infection. Had Not Had One In 20 Years. So Of Course I Drank Tons Of Cranberry Juice. When I Got Back Home I Saw My Gyno And She Gave Me Antibiotics. It Didn't Go Away So We Tried Another Round Of Antibiotics. The Pain Was Up To My Rib Cage And My Lower Back. I Peed Constantly!!

    I Was Sent To A Uro. She Said She Was Going To Fill My Bladder Up. I Said How Much Do I Have To Drink? She Said We Use A Catheter. I Almost Died As I Heard On The Web It Was Extremely Painful. I Brought My Ipod And Just Blasted It In My Ears. I Could Barely Hold Anything. She Said I Had Ic. Never Heard Of It. She Gave Me A Prescription For Urelle. I Started Out With 3 A Day. Then Gradually 1 A Day. For The Next Year I Took 1 Urelle At Bedtime And Had No Problems, Nothing!!

    Then Urelle Was No Longer Being Made. I Went To Different Drugstores And Could Not Get My Hands On It. So I Took Nothing For A Couple Of Days And It Came Back With A Vengence. I Called The Uro And She Prescribed Pyridiem. That Did Nothing. She Wrote A New Script For Urelle And Said It Would Be Back In Drug Stores Within A Week. She Gave Me Samples Of Urelle.

    I Finally Was Able To Buy Urelle And Now The Damn Thing Doesn't Work. I'm Taking 3-4 A Day. Pain, Pressure, Backache And Peeing Constantly. I Can't Believe How Good I Felt For A Year And A Half And Just Two Little Weeks Without Urelle Changed Everything For Me. Did This Happen To Anyone Else?

    Now A Couple Of Questions: I'm Seeing The Uro Again This Wed. I Called And Said I'm In So Much Pain And Nothing Is Working.
    What Do You Think Would Be The Next Meds, Elmiron? Is It Best To Nip This In The Bud Quickly? My Doctor Is A Uro But Not An Ic Specialist, Am I Better With A Specialist? I Also Live Near Lij Where
    Dr. Moldwin Is. Has Any Seen Him? What Were Your Thoughts?

    I Also Have Fibro/cfs But Have Taken Care Of That Awhile Ago. Function Quite Well And Family And Friends Don't Even Know I Have It.

    Again I See Dr Day After Tommorrow. I Want To Be Equipped When I See Her In What To Ask Or Say. So I Would Be Eternally Grateful For Anyone's Suggestions.

    The Following Are Meds I Am Taking Now: Nadh For Cfs ( An Over The Counter Product) Ultracet One In The Evening For Fibro Pain, Elavil 40mg At Nite Which Was A Godsend For The Fibro Pain.

    I'm Such A Private Person But I Said I Have To Talk To Someone And What A Great Bunch Of People I Have Found!! Should I Discover Something Helpful I Promise To Pass It Along.

    Thanks So Much,


  • #2
    there is elmiron, hydroxzine, urised (work like urellle) instill treatmentd.. What is so hard about this disease, is we all react different to each med.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Mine started almost 2 years ago with the pelvic pain, frequency, urgency, weak stream. I wasn't officially diagnosed with IC but my doctor explained that it might be. The PST (potassium sensitivity test)was inconclusive. At that time my Uro prescribed lots of antibiotics, Elavil & Flomax and wanted to do Cystoscopy with hydrodistention but I got scared thinking it was major surgery. I haven't been back since. I only wanted the elmiron. Now, I no longer have health insurance and cannot afford the Uro fees. Currently, I experience perineal pain, pain in my buttocks, left leg/thigh. pelvic pains, full bladder pains. Pains during/after ejaculation. Abdominal pain.
      I started taking the prelief a week ago, but not sure if it really helps. I've given up my morning coffee and all the other things I enjoy eating & drinking. I'm losing my mind and all this is making giving me anxiety & panic attacks. I feel crippled & disabled. I just don't know what to do. I want to marry this girl but I can't share my disability and my male disfuction in the relationship. Can anyone help me?


      • #4
        Momere, welcome! I'm sorry you are flaring right now, but please don't give up hope, there are lots of IC meds to try, and I'm sure your doctor will start you on those soon! So hopefully soon, you will be feeling like your old self again!



        • #5
          The Patient Handbook at will help you learn about treatment options. There are too many to note them all in one post. Are you following an IC diet? That can be so very important to help control your symptoms.

          Warm 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


          • #6
            Will Colonoscopy cause a flare?

            Hello Everyone,
            I am having a colonoscopy on March 29th and I am worried about it causing a flare. My gastro has prescribed MoviPrep for the preparation. I am also worried that I have to stop my Elmiron 48 hours before my colonoscopy. Anybody have any problems with this? Thanks for the outlet!