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Newly diagnosed with IC

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  • Newly diagnosed with IC

    I've been on a wild goose chase to find out what's wrong with me for about four months now.

    At first my primary care doctor suggested a kidney infection. Then kidney stones. Then an ovarian cyst. And then PID?! (they tested, I don't have PID!)

    Finally, a urologist was the only one to go in and do a cystoscopy, where he found an extremely inflammed bladder. Before the procedure he had mentioned that it sounds like it could be IC because it had been going on for so long and I had shown no signs of UTI's or any other type of bacterial infection.

    So now I'm on Elmiron and putting in the time. Waiting to get better and get my life back! It's terrible to be 17 and have a chronic thing that hurts and.. is super annoying all the time. It caused me to not go to prom!

  • #2
    ((((((((hugs))))))))) and I think the beginning is the hardest part of this disease but please just remember the more you know about it the more ways you can fight back. You will be able to get it under control esp since you caught it so early.. Heres the link to the ICN Patient Handbook it has a lot of helpful tips and info in it if you have any questions please ask.. Thats what we are here for to help and support one another

    we also have another 17 year old on the board maybe she will respond to your post to

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      Thank you!

      Thanks for the words of encouragement and handy link, I appreciate it.


      • #4
        I am sorry to hear that you have IC. You are so young and you should not have to worry about your health. I am so sorry that you missed your prom. Darn this IC!! I am 44 years old and it was so hard for me to go through all of the tests and recieve an IC diagnosis - I can't imagine how hard it must be to be only 17 and have to go through all of this. You must be a very strong person. You will find a lot of good information of this website. Everyone here is very kind and helpful so please post any questions that you have and let us know how you are feeling. There are many treatments that can help you feel better. I am wishing you well with all of my might. Linda
        Sudden onset of UTI like symtoms on Dec 27, 2006.
        Diagnosed with IC on March 12, 2007.
        Current Meds: 50mg Elavil
        "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown