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my college- aged daughter is newly diagnosed...

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  • my college- aged daughter is newly diagnosed...

    Hello all.. YOu are certainly some folks with a tremendous courage and compassion...My daughter, 19, was just dx this week, and also has severe endometriosis...She live in a dorm, with a bunch of friends, and is attempting to lead a normal college life- Fast food, sociaizing, studies, classes etc. She ha the potassium test yesterday and the IC is confirmed. Her Dr. is not going to put her on elmiron yet, but has recommended some anti-inflammatory (Ultram ?) and and anti-depressant med. I want so much to help my Emliy live a normal college life, but I don't know where to begin.. Any help? Thanks- Worried mom [img]rolleyes.gif[/img]

  • #2
    I am 18 and have IC. Feel free for either you or your daughter to e-mail me anytime.

    [email protected]


    • #3
      Although there are worse things than having IC, I imagine having a child diagnosed with it ranks up there with the worst. Along with treatments for her physical problems, your daughter is going to need A LOT of emotional support. With a concerned parent like you, she has already got an advantage that will make this nasty disease a little easier to take.

      This website addressed virtually every aspect of living with and treating ic. If you have any additional questions or concerns, please feel free to e-mail directly at any time.

      Gabi [email protected]


      • #4
        I in many many ways think that I was lucky to have lived all of my life with IC and no dx.....I believed that everyone lived in the pain that I did so I didn't let it stop me from finishing school, getting married, having children, getting divorced and then bring them up all on my own, both physically and financially. Since I didn't know that my pain wasn't normal, it just didn't get in my way. Until I was 45 I honestly believed that everyone in the world peed every 1/2 hour, even tho I was the brunt of all the jokes all thru my school and work years. And being pregnant, well, I just didn't go anywhere cuz I always needed to pee but since I didn't know any better, I didn't think much of it.

        I am soooooooooo glad that I wasn't dx'd until 45. I had been treated for many years before that but my uro was a total jerk who ended up ruining my life after 10 years of mistreatment.

        There are so many new treatments out there now that can be tried and your daughter is young so she hasn't had the chance for a dr to do more damage to her bladder. WHATEVER, be there for her, but allow her to find her own way too...... I find at times that my husband is enabling me and that's not a good thing. He's doing it cuz he loves me and doesn't know of any other way to help but it's not a good thing.

        Keep comin'.....we are here to help you AND your daughter. She's got one terrific mom [img]wink.gif[/img]
        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


        • #5
          Dear Mom,
          I am a mother of a son who has ic.(age 25)..feel free to email me.
          [email protected]


          • #6
            I'd like to welcome you to the IC Network. I know you'll find a great deal of helpful information here.

            The best advice I can give you is to learn as much as you can about IC. A good place for this is to read the information in the Patient Handbook on this site. You'll find it on the pull-down menu at the top of this page.

            Your daughter is very fortunate to have a mother who wants to learn and understand.

            Sending warm hugs,
            Stay safe

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            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.

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            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