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  • #1

    IC Specialist

    Can anyone recommend a good doctor in Ohio, West Virginia or Kentucky? I'm desperate and having a hard time finding somone. I'm currently working with a urologist who is okay, but when my pain got unbearably bad during the last few weeks, their response was, "Sorry...there's nothing else we can do. You can come do more bladder instillations." I had done a series of 8 instillations (which didn't help) and I was shocked that their answer was to do more...I showed up for my appointment sobbing and in the worst pain of my life, and left feeling even worse. I've never felt so hopeless and frustrated!
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  • #2
    If you click on "Professionals" at the top of this page, then click on your state, you will find lists of professionals who have been recommended by other IC patients. Support groups are also listed there and they can be an excellent source of information about physicians.

    Good luck!
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    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: http://www.ic-network.com/patientlinks.html

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    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.     [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      Thank you so much!

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      • #4
        I went to Cleveland Clinic last summer b/c of abdominal adhesions/endometriosis...I know they are one of the best hospitals in the country for IC, so I'm seriously considering going back (even though it's a 5 hour drive). Has anyone else had a positive experience at Cleveland Clinic?

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        • #5
          Doctor

          I go to the Urology Group in Fairfield Ohio. I have had good results . I see Dr. Keys. He has been the only doctor that has been able to help me. Hope that this info will help you.

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          • #6
            So sorry hope you find someone to help with your pain! I live in Colorado and Flew out to California to see a specialist. I am trying to find a good specialist locally with no luck and have decided to fly back out to CA because it is so hard to find a good knowledgeable doctor that treats IC. You may have to travel. Good luck!

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            • #7
              Hi

              I am from Columbus and I was in the same boat you are in. My urologist told me that he has exhausted all treatments he is aware of and recommended I see a urogyno. Well-I made the appointment in Nov 2010 for July 2011. Yes! That is right. You can only get in to see her by a doctor's referral and then she decides if she takes your case. She did take mine and that was the first available appt so I went to the Cleveland Clinic in Dec 2010in the meantime. They have 4 doctors that just see females with uro issues and they tried different treatments that my uro didn't try. If you live far away they will do a lot of things over the phone so you don't have to go as often. I haven't decided if I am going to stay with them or not since it is so far away once I start seeing the urogyno in July.

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              • #8
                Made an emergency visit to my gynecologist today...he is wonderful...spent over an hour with me...he didn't seem very pleased with my urologist and questioned several things they have tried and suggested...he told me my next step is:

                1. cystoscopy...I'm looking for a new urologist b/c I just don't feel comfortable allowing my current doctor to do it

                2. Lupron...I have severe endo (which was confirmed during a surgery 4 years ago)...my gyno thinks I might have endo on/in my bladder causing my pain.

                Not sure which to start with...I've heard Lupron is a rough drug to take (I know it will increase my IC and endo pain for a couple weeks, and that thought is unbearable) and if it isn't endo causing my pain, that does nothing for the IC...just adds another set of side effects on top of IC...I know a cystoscopy will show IC, but I'm not sure if it shows endometriosis.

                The big question...What is causing the bladder pain? IC or endometriosis

                I will say my gynocologist is wonderful...called me in some pain meds (which I couldn't get my urologist to do, even though I'd been crying and coming in to see them several times during the last few weeks).

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