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IC Event in Scranton, PA!

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  • IC Event in Scranton, PA!

    Interstitial Cystitis Symposium
    Saturday, Februart 22, 2014
    Registration: 10:30am
    The Commonwealth Medical College (TCMC)
    525 Pine Street, Scranton, PA 18509
    Free & Open to the Public

    Questions? Contact:
    Sonia Lobo Planey. PhD
    [email protected]
    I'm Taddy & here is a glimpse into my world & how I deal with this ridiculous and mysterious disease.

    My symptoms started in Feb of 2008, while in college at Penn State during which I was filming Season 2 of A&E's "Paranormal State." As one of the original cast members, I learned early on how difficult it was to travel and spend so much time in haunted, abandoned buildings with no bathrooms! I went to doctors with symptoms that felt like a UTI even though there were no signs of infection present. At the time I was prescribed all of the standard antibiotics for UTI's, plus I was drinking a ton of Cranberry juice...which only made things worse! After that a urologist put me on various medications like Vesicare and Deterol for overactive bladder. Those did nothing. In March of 2009 I underwent a bladder biopsy and found out that I have a mild case of IC. My urologist's explanation was that being on all of those different antibiotics caused my bladder to become inflamed.
    Diagnosed with mild IC by a bladder biopsy in March 2009. Before my diagnosis I was put on the standard antibiotics prescribed for UTI's. After they did nothing I was prescribed medicine such as vesicare & detrol for overactive bladder. After those did nothing, the result of IC came back... the doctor thought that being on all of those antibiotics made my bladder inflamed. Today I am still struggling with frequency and urgency. Physical therapy has been the only thing to help me with the pain. Yoga also helps my symptoms too. Figuring out what to eat has been a constant struggle for me.

    If anyone lives in the Pittsburgh area I'm looking to start a support group of ICer's. Anyone PLease feel free to message me about anything!!

  • #2
    Re: IC Event in Scranton, PA!

    Sorry I missed this. Anything new like this coming up? I'm trying to connect with other PA folks with I.C.


    • #3
      Re: IC Event in Scranton, PA!

      Hi. I'm in PA. My IC has been under control and I consider myself very fortunate. My original diagnosis was made in 1998, by a urologist who told me to get couples' counseling because my marriage was sure to end. After walking out of his office, and through much trial and error, I found that hydroxozine helped me almost immediately (prescribed initially by Dr. Erickson when she was at Hershey Medical Center). I think that because I have so many seasonal allergies that I was producing an excess of mast cells in my bladder - makes sense doesn't it?

      All was well since May 1999. Unfortunately a yearly exam completed by an intern missed that I was entering menopause. Jump ahead a few months and due to a real UTI and some other issues due to menopause, my vaginal ph was thrown off. I was prescribed Boric acid vaginal suppositories along with bio identical cream, and ta da-bring on what seemed like a major IC flare. Burning, pain, frequency - you name it, I had it.

      After being seen by a NP - who was really trying to be very helpful - thought that I needed to just continue on the meds and also prescribed Effexor. Unfortunately, the internal meds were still creating havoc and the Effexor (after 6 doses) made me hypersensitive and have suicidal ideations. Luckily my neighbor was an ER doctor and immediately recommended that I come off of the new medications. He also prescribed Ativan which helped me settle, sleep and think rationally.

      As I began the process to find a new IC doctor, i was seen by an 'expert' who determined that my symptoms were all from yeast. He prescribed 6 months of Diflucan-2 a day for a month and then maybe 1 every 3 days...but nothing to treat the vaginal atrophy. In fact he didn't even address it.

      However as luck would have it, I was able to be seen in Sept. 2013 at The Pelvic and Sexual Health Institute by one of the PAs. (I would add that while this is a well known practice, the office and exam rooms really need to be cleaned.) After reading my health records, the NP determined that the flare was probably caused by being burned -due to the atrophy- by the Boric Acid and that I was allergic to something in the estrogen cream. She also prescribed 30mg Cymbalta...less side effects than Effexor.
      I also felt that someone really understood what I was saying!!!

      From there I just needed time. Because of some other issues, We increased my dosage of Cymbalta to 60mg. She has also prescribes compounded Estrodial and Testosterone cream.

      During the initial reoccurance in 2013, I was also prescribed Uribel which did wonders when I needed it.

      I still have moments of post traumatic stress from this episode, but they are brief and fleeting.

      I do understand that we are all different but yet so alike-we all want our normal back. I remember early on (in 1998)speaking with another woman who had IC after going through treatment for cervical cancer. She told me she would take the cancer back rather than have IC. That was such an eye opening conversation. I also attended a conference - totally about IC. Talk about being in a room where everyone knows your pain but yet still feeling very alone.

      While this latest flare was going on, diet was key. I went bare bones with food and water and had tremendous relief. I would recommend that everyone start there.

      I also came back to reading posts. I had to stop for a while early on as they were overwhelming and I could not see the positive messages or words of hope. So as you read, venture slowly.

      While I do not know if I can help, please PM me or simply ask-I will try to do whatever I can.

      Warm regards.