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Newly diagnosed and looking for answers

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  • Newly diagnosed and looking for answers

    I have a million questions as a newly diagnosed person. The more I read the more questions I have. First my story. In September of 2005 I started with right upper abdominal pain. I had a cat scan that was negative. They sent me to a gastroenterologist in November. In January 2006 I had a colonoscopy which was also negative. Three weeks later I suddenly had an incontinence and urgency problem, pretty much out of the blue. I've always had to go the bathroom a lot but never like this.
    I went to my gyno. In March he did an AWFUL cystoscopy proceedure in his office. He didn't know how to work the compter and then expected me to go to the bathroom in front of him. I refused. I continued to have the pain on my right side and had an ultrsound. He was supposed to refer me to a urologist from March until August when I finally called again for a referral. I belonged to an HMO and couldn't switch DRs. I say the urologist in September. They tried me on three different meds from September until December. I gave up at that point. My primary sent me to a surgeon for the right side pain and he referred me back to the urologist suggesting the pain was from the ureter. They did a bladder distension and biopsy at the end of February. I am on the 5th RIMSO. They still haven't checked the ureter or the right side pain.
    I thought things were getting a little better but now the incontinence is back!! Does anyone else have this problem? Also my husband has new insurance and I can go anywhere I want. I refuse to go back to my gyno. What is a urogyno? What is the difference between my urologist and a urogynocologist? Has anyone had any success with changing their diet? How long does it take?
    Regarding the rimso treatments I stay at the Dr.s with the catheter in for as long as I can take it, so far only 20 minutes, and they take it out. My bladder can hold only 200cc's. I've read where some people hold it for an hour and drive home. That would be beyond me at this point!
    The best thing so far has been finding this web site where I realize other people have the same thing I do. I NEVER talk about it with anyone but my husband and it is sometimes overwhelming, embarrassing and frustrating.
    Thanks for any advice!!

  • #2
    Donna ,

    I believe a Urogynocologist is a Gyn ( the one that does the pap smear and things like that), also they can take care of things that are related to the urinary tract. They can do both.

    Urologist is only specialist in dealing with the urinary tract.

    I believe that is what is the difference between the two.

    The pain can be many reasons and I hope they can find out what it is soon.
    Glad you got new insurance so you can go where you want to go.

    Having only 200cc I definitely can understand you about not able to hold it that long. I know it is aggravating when they don't understand that.
    Hope you new doctor will be helpful and compassion. Hope you the best.

    Hugs, Trishann


    • #3

      I'm going today for another rimso so I hope they can give me some direction on what else to do. I looked up the names of Urogyno's in my area and there is one. I am going to check around before I go to them because I want to be comfortable with the person and know that they are going to be helpful. I love the PA-C I see at the urologists office.


      • #4
        I see a urologist for my IC. One suggestion I have is to read the information in the Patient Handbook (see link in my signature). It will answer many of your questions.

        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