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any tips or suggestions

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  • any tips or suggestions


    I just registered and have no idea if I am doing this message right.

    It would be great to hear from other people. I am so frustrated and discouraged.

    And I need some advice! Cause like when I'm in school - I just go to the bathroom before and after every class, and that seems to work okay.

    When I'm just at home or whatever, I just go to the bathroom when I need to.

    But the problem is: I NEVER get to do anything fun, because if I wait to go to the bathroom even a couple minutes once i have to go, it hurts me so bad for days! Also I get so scared of situations this might happen in!

    I am just having such a hard time with this. Also I just feel so alone! I've never met anyone with IC.

    I was just wondering if someone could give me any tips or suggestions?? Espceially about the part about having to go right away or else alot of pain. It is frustrating because the other day we were stuck in traffic. And I had to go to the bathroom, but it was about half an hour before we could get to one. It hurt so much. Then I was over at a friend's house, and they only have one bathroom. My friend's brother was taking a shower, and I thought I would pass out from the pain trying to wait!

    I'm normally a really easygoing person; but now I'm afraid even to get in cars or anyplace like that where there's not a bathroom immediately accessible! Am I just crazy or does ANYONE understand this?! frown

  • #2
    Welcome! I'm sorry to hear that you have IC, especially at such a young age. I was diagnosed last year at the age of 27, but I have had bladder problems on and off since I was 17.

    Do any of your teachers know you have IC? If not, you might want to talk to them about it or talk to a guidance counselor about it, so you can have free access to the bathroom when you need it, even during a class.

    What treatments are you trying? There are medicines that can make you have to go less often. I take one of those meds (ditropan) every other day or so and it definitely helps me.

    As far as the long car rides, you might want to keep something to pee into in case of an emergency. There are "travel johns" available in the IC store. I haven't used one before, but others talk highly of them. I keep an emergency kit in my car (disposable tupperware, paper towels), just in case. It makes me feel better to have it there.

    Hang in there,
    Nicole blink


    • #3
      Hey Sue --

      I feel for you. I really do. Just like Nicole from Atlanta, I too am no longer a teenager. But I also definitely know what you're going through -- since I've had IC since I was 14.

      All I can say off the top of my head is -- you are in such a better place than I was at your age...though it may not look or feel like it. When I was in my teens I didn't know what IC was. In fact, it took me five years until I heard of it and another 7 years before I was officially diagnosed. I had no one to talk to or ask questions of -- and you have no idea how helpful knowing about this illness and knowing that there are others just like me can be.

      That being said, I'm not sure I remember all the issues you brought up in your post. Nicole had some good ideas. What I do remember quite vividly is that your post sounded exactly how I have felt and often still feel today. The good news is that I have improved my condition over the years through knowledge, support and experimenting with various treatments.

      I would be more than happy to help you in any way I can. Please feel free to e-mail me whenever you want.

      All the best...
      [email protected]


      • #4
        Hey, I totally know what you mean about having to go to the rest room all day long. I am homeschooled now so I don't have to worry about going during classes, but I do work and it seems like I am always running to the back room. I get that horrible pain too and something I found that helps me is taking a warm bath (w/o bubbles) when I get home. Something else I found that helps is drinking only water. I still have to pee all the time, but the pain after holding it doesn't seem to last as long. I am sorry that you are going through this, if you need anything privae message me or email me any time.

        [email protected]
        I Love Apples...I Miss Apples