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It's been 9 years...and I'm only 21. At least I know...

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  • It's been 9 years...and I'm only 21. At least I know...

    Hi guys! Well, I thought I'd come on and add my story to the list. I've been having problems for 9 years--since I was in 8th grade. This summer, I had another, as I know to be now, flare up--horrible one. Once again--I got antibiotics. When they didn't work--as usual--she'd give me a different one and tell me I had an antibiotic resistant UTI. I asked her if it was normal for someone my age to be experiencing this. Get this--she said YES! Well, at 21, I knew better--I'd had it. I went to the urologist, who said it was NOT normal!!!! After many agonizing tests involving catheters--if I never see one again, it'll be too soon--he said I have interstitial cystitis. I've been taking elmiron and haven't had a flare up since. Also, my roommate and best friend's brother had been having a lot of the classic IC symptoms. After I was diagnosed with this, I told her brother that he had to see my urologist--sure enough, he has it too. It made me feel good that I could help him figure it out. It is horrible for me to think of when I was 14, visiting my dad (my parents are divorced) and my family in NY (I live in NC). I now can tell that my IC is definately stress responsive. I would constantly feel as though I had to go to the bathroom; it was the worst right after I would go. Only you guys can know what it feels like--it is that unexplainable, not pain, but horrible feeling, the urgency. My Urologist informed me that my bladder has shrunk as a result of my IC--something I readily notice when I am the one in the car always shouting for a bathroom stop. It's really embarassing when you are 21. One of my friends was like: gosh, you go to the bathroom so much! Thanks, I know that! You know? At least my medicing is helping. Also, I drink mostly water now--which I believe has really helped me. I am very angry at my primary care physician. Do you guys think I should say something? I've had her since I was 7, and I am going to stay at the same clinic. However, I refuse to see her anymore. She should have NEVER told me what I was experiencing was normal. When I told the urologist everything, he was flabbergasted (mouthe wide open--no lie) that she had told me that! She is the type that doesn't refer--she thinks she can handle it all. Well, thank you to anyone who has stuck with this posting this long. I hope that you guys find relief. My heart goes out to you who have severe pain--I have been blessed to have this only on rare occasions, though the urgency/frequency is not lovely either. Thank you!

  • #2
    Avoid the dr.....sometimes it just isn't worth the stress, especially if it's convient for you to see a different one.

    There are some dr's who think that they know all they need to know about EVERYTHING and when you run into a dr like that, it's just not worth our valuable time trying to re-teach them.....

    wishing you the very very best!
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #3
      Hi Jessi,

      I am also 21, and like you, I have had bladder problems most of my life, beginning at a very young age and then finally getting diagnosed when I was 20. I take morphine and Neurontin to control my pain, and have the InterStim implant to control frequency and urgency. You are very lucky to have Elmiron working for you! It helps so many people, it is a blessing.

      It is hard to be this young and to have IC, I couldn't even attend college, and when your friends are all leaving for college, what do you have left? But like anything else, you learn to adapt and to cope. Hang in there, there is hope. You are not alone, there are a few of us 20 something's around here, and anytime you'd like to chat, you can bend my ear wink

      Take care, and welcome to the boards!!!

      Hugs and love,
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!