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I'm only 17

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  • I'm only 17

    I was scanning through the message boards and I noticed that everyone is a lot older than I am. I am only 17, but have had IC for two years. It's weird, I feel kinda alone because it doesn't seem like too many people my age deal with this. Are there any other teens out there who are going through this too?

    I Love Apples...I Miss Apples

  • #2
    Hi Kim

    Just wanted to let you know I responded to your other post on the Newly Diagnosed board.


    PS. There are some kinds of apples that most ICers can tolerate! Check under the IC & Diet board!
    My story of healing and hope


    • #3

      I'm no where near being a teenager anymore -- I'm now 31. But, I developed my IC at age I totally understand what you're going through. In particular, the lack of IC sufferers around your age. I had no clue what IC was until I was 20 (and I wasn't officially diagnosed until I was 26). Point is, even in my 20s, I felt that I was totally alone. Like I was the only one with IC at my age...even though I knew that wasn't true. But how to find them?! Where are they?

      Well, they are out there. Sadly, it's going to be a little harder to find kids your age. But here's what I did and it may help. Contact the ICA (and join if necessary) and see if they have local support groups in your area. See if the local head of your region knows of others with IC that are your age. See if he/she can make contacts on your behalf. And if you can afford it, go to the ICA National Conference they hold every two years or so. I attended the 2000 conference in Minnesota with the specific intent of finding other people in their 20's like me -- cause I just never found anyone! I even spoke with the head of the ICA about getting an empty conference room and making it known to all that everyone in their 20's with IC should take part in it. And you know -- it actually worked!! And from that meeting, I co-founded the ICA's 20-Something support group. So, there are ways around all this.

      That being said, if you're open to talking to an old dinosaur like myself -- I would love to hear from you at anytime. My mailbox is always open!

      [email protected]


      • #4
        Hey there,

        Even though I am not your age I just turned 31 I can relate to how you are feeling. I saw that they recommended to call the ICA to find support gruops. That is a big help. If you can not find one I am sure there will be many here on this board to try to help and support you. We all were your age and it was not that long ago. You are not alone please believe that and when you feel you are log on and chat it really helps.

        sending lots of hugs.
        Always wishing the best to all of you.


        • #5
          Hi the others have said, don't be afraid to post questions here..........many of us have had IC or related issues as teenagers.........

          (Did anyone else wonder why there was only 5 min between classes? Didn't EVERYONE have to go to the bathroom all the time like me? I thought what I was experiencing was normal for the whole human race! LOL..........never meention the time I had to just walk out of government class, directly out of the school and go home........I was in such pain.......when I saw the doc, he said, no bacteria, couldn't be an infection..........took me 20 more years to get diagnosed..........)

          Keep posting, hun, there are many other teens on the board...........XOXOX
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author

          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........

          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter

          *Let's Connect!*


          • #6
            Just a note of clarification. The ICA no longer sponsors support groups in the USA. Support group leaders, shortly after the Minnesota conference three years ago, received cease and desist notices asking that they all stop saying that they represent the ICA or are ICA sponsored for "financial" reasons.

            But, on both the ICA and ICN website, you can find a list of independent support groups. We're very glad that the ICA finally agreed to acknowledge the presence of groups that were not affiliated with the ICA.

            Anyway, our support group listing page is at:

            Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

            Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.


            • #7
              You probably feel all alone, out of control, and maybe that your life is over. I was 16 when I was diagnosed. I will be 21 in two months. Being diagnosed was a life alterning change. I didn't what was going, didn't know how my life was going to change, didn't know who to turn to. For three years I was lost. You are very fortunate in having found this site. These people have literally saved my life at times. It is going to feel lonely a lot of the time because other people cannot really know what you are going through. People here do. They have been there abd continue to be there. There is always someone to address your questions and concerns. There is always someone to cry, whine, and complain to. Believe me it makes all the difference. My suggestions to you are:
              1. Find a really good team of doctors if possible?
              2. Do some research. Knowledge is power!
              3. Learn to listen to your body, find what your flare up triggers are.
              4. Get a counselor in school to help you through school. I cannot stress that enough. Don't try to do this by yourself.
              5. Find a therapist or someone you can really, really, really trust to support you through this. You need at least one person besides yourself to count on. Talk about. Not to everyone because this is a very personal disease. Talking can ease fear, anxiety, stress,and confusion.
              7. Get in touch with your spiritual side. It will come in handy. Spirituality is whatever you make of it. Whatever helps you get through each day.
              8. Give yourself permission to be sick when you need to. (Easier said than done but very important)
              9. Don't give up hope!!!
              10. Use this message board as much and as often as you need to. That is what it is here for and it really can make all the difference.

              Sorry this is so long. I hope some of this helps you. I wish I had known these things back when I was your age. Email me anytime for whatever.
              [email protected]

              Stay strong and good luck!! angel
              IC-diagnosed August 1998 with cystoscopy and hydro
              IBS-diagnosed in 1998 probably had for majority of my life
              Fibro-Diagnosed in 2010
              Other conditions: Depression, High Cholesterol (irony)

              Primary symptoms: PAIN, bloating, frequency, urgency, fatigue

              Current Meds: Elavil 10mg at bedtime, Toviaz 4mg at bedtime, Lyrica 3x a day

              Failed meds: Vesicare, Detrol LA, Celexa, Vioxx, Celebrex, Ditropan XL, Elmiron
              "In the middle of difficulty lies opportunity."