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  • My Story

    Hey Everyone
    I'm 15 years old and have had cronic blatter infections since i was four years old. I have had every test in the book and my whole body examined. This year i was diagnosed with IC. I'm the youngest girl they have ever seen with it and it's taking a tole on my body. I dont know how to deal with it anymore, though my family is there for me they just can't understand what i'm going through. I miss around 20-35 days of school every year or semester. Right now their starting off simple with blatter washes to see if that will ease the horrible pain. But even that hurts me. I've been reading up on what else they can do and am becoming scared that i may have to go through at such a young age wha you poor woman are going through now. I've givin up so many luxeries at 15 thatmy life is dull and painful. I can't have friends over for the night...cant party...cant have caffine...citris....or spicy foods, and mostly lay ion bed. How am i ever going to have a carrer? Please tell me that you understand and how you cope with it??
    Thanx Sincerly from carrie <img src="graemlins/angel.gif" border="0" alt="[angel]" />

  • #2
    Hey, sweetie. Go to the Patient Stories section of our website and read up on some good, positive stories. Your life isn't over and you may yet be able to go out and do all the things you dream of, OK?

    To give an example of something youthful this old 33 year old did that IC didn't stop me from enjoying: went to see one of my favorite rock bands, got right up on the rail at the concert, was standing there for probably 4 hours and IC didn't make my lose my spot! [img]wink.gif[/img] I didn't have to pee until after the concert and then got to hang out backstage for awhile.

    So, hang in there - this has just started for you (with recent diagnosis) and there are so many wonderful treatments available, OK? It takes time to find which ones work best for each patient, but don't lose hope, OK?

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


    • #3
      Dear Carrie,

      I am sorry to hear that you have to deal with this at such a young age! My heart goes out to you. I am 26 years old, and was diagnosed with IC when I was 21, but I remember bladder pain, frequency and urgency (needing to go NOW) when I was in my teens.

      What other treatments or medications has your urologist suggested for you? I tried a whole bunch of different medications when I first got diagnosed, but it was a medication called Elmiron that really helped me. I was even able to go back to school and finish university! Unfortunately we're all different....what might help one ICer might not necessarily help another, but it might be worth a try. I know the IC diet can be very restrictive, but it can really help IC symptoms as well. I try to stick as close as I can to it, and it makes a big difference.

      Please let me know if you have any questions. We have a board on the ICN for people in their 20s, and you are more than welcome to join us! You will meet people that have IC and are close to your age.

      Take care. Sending you a big hug! <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

      [img]smile.gif[/img] Alexa
      My story of healing and hope


      • #4
        We understand for sure. For right now, you are in the beginning of finding out what will work for you, so I know this is all overwhelming. Maybe soon, with the right treatments and medicines, things will be going better for you. Welcome to our board. Jo


        • #5
          Thank-you for replying to my post it's nice to know people know what i'm going through. Right now i'm on Ditropan (to stop some of the urgency) and am having blatter washings with DMSO and its mixed with someting else. It's good to here that some day i can still have a normal life...thank you for thakiong time out of your day for me!!
          Carrie <img src="graemlins/angel.gif" border="0" alt="[angel]" /> [quote] <hr></blockquote>


          • #6
            Hi Carrie,

            I'm 18 and was diagnosed with IC when I was 14. I started having symptoms when I was around 6 or 7.

            Believe me, I understand how you feel. It is hard to cope with a disease like this at any age, but especially as a teenager, I think.

            If you ever want to talk (about IC or anything else) you can e-mail me at [email protected], I would love to hear from you. I always like to meet other people near my age that have IC.

            I'm glad you found the IC Network. It has been an invaluable resource to me, I don't know what I would have done without it.

            There's a bolt club for teens with IC, I'm not a member, but I've seen it mentioned on the high school board. I just thought I would mention it in case you were interested.