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New here but not new to IC

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  • New here but not new to IC

    Hello everyone I was officially diagnosed with IC in 1997 but started having symptoms in 1995. It was sudden, went to a picnic and ate lots of fruit salad. That night I had the constant urge to urinate. It was frightening to say the least, I had no pain so didnt think it was a UTI. I went to my regular doctor the next day, they tested my urine, no bacteria. Sent me for an IVP to check out my kidneys, no problems there. Sent me to the local urologist. This doctor told me I probably had urethritis and needed my urethra stretched. So he tortured me with steel rods down there and said that would cure me. I did feel better for a few months then started having symptoms of urgency again. He did the stretching with the steel rods again and I went away feeling that all was going to be well. A month later I had same symptoms, no pain, just the urge to pee constantly. This time he put me on a six week course of antibiotics to kill off that imaginary bacterial infection in my urethra.

    After that I would have symptoms but not severe and I didnt want any more steel rods stuck into tender body parts nor did I want to take medication that made me feel horribly sick. In 1997 I read an article in Good Housekeeping magazine about IC. The symptoms it described were very much like mine except for the pain. I didnt have that yet. I wrote to the ICA for more info and a list of doctors in my state that treated IC. I found an excellent urologist who performed hydrodistention and cystocopy under general anesthesia. He took pictures of my bladder and showed me the glomerulations on my bladder wall and diagnosed me with IC.

    The hydrodistention caused me to go into remission. I had some mild flares over the years that could be brought under control with diet and anti-inflammatories and ditropan. In 2006 I had my first painful flare and was put on Elmiron. In 2007 I had another painful flare and the uro added hydroxizine. I was in remission until last week. Im 49 and premenopausel so Im fearful that when I have flares they may be more uncomfortable now but hope and pray that Im wrong
    Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

    “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus

  • #2
    Hello Becky Jane and welcome to the ICN!

    Sorry that you had to join us, it sounds like you have been pretty successful in treating your IC over the years. Some people do experience IC flares when they have hormonal changes such as when they have their periods. Hopefully you will be able to get this latest flare under control quickly. Are you still seeing a urologist? Since the hydro worked for remission before maybe that could be a solution this time as well.
    You will find a lot of great info on this site. I have two links below, one is to the patient section of the site and there is a lot of info there and the other is a link to the new reccomendations for uros for diagnosis and treatment of IC.
    Again, welcome to the ICN. We are always here to listen and offer support.

    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom