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Interstitial Cystitis (IC) Message Board

  • Newly diagnosed with IC

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    Old 05-06-2015, 04:43 PM   #1
    jck133's Avatar
    Join Date: May 2015
    Location: CT
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    jck133 HB User
    Newly diagnosed with IC

    I was just diagnosed with IC yesterday. My gyno/urologist did a cystoscopy on me and then pushed a solution into my bladder that is known to irritate people with IC. It hurt so badly, I burst into tears a few seconds in, and when she filled my bladder for the cystoscopy, she told me that I was feeling the urge to urinate well before people usually even know they have anything at all in their bladder. While the test was incredibly painful (I couldn't sit down all night!), I am hoping that at least this is a definitive confirmation that I have IC. I am going to another Urologist for a second opinion on Friday morning, but it seems like I have IC. She mentioned amitriptyline and and hydroxyzine. We have ruled out Elmiron, since I have had a lot of interactions to drugs in the past. I also have a history of food allergies and a variety of other autoimmune-type symptoms. Just introducing myself, and hoping to find (and give!) some support to others on here...

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    Old 05-18-2015, 08:31 PM   #2
    Invol's Avatar
    Join Date: May 2015
    Location: Richmond, VA
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    Re: Newly diagnosed with IC

    Welcome to the board. I'm new to this group but I've had IC for over a decade now. The best thing for me has been changing my diet. The second best has been amitryptiline. Over time, you'll find what works for you. Trust your body.

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    Old 08-09-2016, 06:16 PM   #3
    Join Date: May 2012
    Location: Bay County, FL
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    OH73 HB UserOH73 HB User
    Re: Newly diagnosed with IC

    Hi Jck133! Newly diagnosed myself (last month) and had a hydrodistention and cystoscopy under anesthesia this morning. Kudos to you for getting a 2nd opinion! I was surprised when you read your doc did the potassium solution push on you. That has been a no-go under AUA (American Urological Association) guidelines for a while. It causes way more pain than its worth and isn't supposed to be done any more - at least since 2009. I only found out because I researched the heck out of what was acceptable testing since I'm in a new, fairly small city and wasn't sure how up to speed the docs were. I hope your next appointment is much less painful and you get some good answers!

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    Old 08-09-2016, 09:58 PM   #4
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    Join Date: Apr 2016
    Location: Lawrence, Mass.
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    carolathequeen HB User
    Re: Newly diagnosed with IC

    I have had IC for 38 years.I have taken Hydroxyzine for many years and it helps.

    Dealing with any kind of stress makes symptoms worse. Recently diagnosed with

    bladder cancer and my pain from IC was unbearable. I am now having ptns

    treatments for the IC. Look into it. Wish you the best.

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