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  • Pernille
    replied
    Re: Not an infection

    Usually they want to know why I can't eat certain things. I explain that I have a chronic condition that is like a severe allergy or an auto immune disease. Whenever I say it is a bladder disease people suggest cranberry juice ... I explain that diet is the only way to control it. I found that the comparison with Crohn disease or psoriasis helps most people to understand.

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  • jen74
    replied
    Re: Not an infection

    I just tell people when they ask, that IC is like having the worst infection you can imagine that there is no cure for. It is true in a sense (at least for me) I believe that IC is an underlying infection that is just not heard of( some strange pathogen doctors are not familiar with). Most women I talk to that ask, the ones that have actually had UTI's before seem to grasp it. I mean they know how horrid a UTI is even for a health person without IC, well I tell them IC is 1000 times worse in every aspect, then they can comprehend what I am talking about usually.

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  • theclownster
    replied
    Re: Not an infection

    Hello! I like Donna's suggestion and it works well with most people. I am very blunt with others and tell them that this is a chronic condition that is not cured. I will often share that is a lifetime condition that is life altering, there is no cure, just remedies to help with the symptoms. I can be more direct when I need to be as some people just don't get it no matter what I say. In the beginning comments from others about what to do used to really annoy me. Now, I just let it go easier. However, I still correct them because I think it's important for others to know this is not just an ordinary infection.

    Wishing you the best as you find what's comfortable for you to share,
    Jennifer

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  • ICNDonna
    replied
    Re: Not an infection

    I usually just tell people that I have interstitial cystitis, which is not an infection. And I usually include that it would be nice to just have an infection.

    Donna

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  • earthlady
    replied
    Re: Not an infection

    I usually would just say I had painful bladder syndrome and there were some foods I couldn't eat. For some reason no one ever asked me what it was so I guess they just assumed I had a painful bladder and left it at that. When I initially said I had interstitial cystitis EVERYONE asked '"what the heck is that?" I got tired of explaining, so I went with painful bladder.

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  • jen74
    replied
    Re: Not an infection

    I just tell people it is like an infection that just does not go away. I personally believe that IC IS a bacterial infection in the bladder wall itself that just is very hard to diagnose( even my doctor believes this). I just explain to people that IC is like having a UTI, but multiply it by 1000 in terms of pain and symptoms.

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  • krist656
    replied
    Re: Not an infection

    I just say I have bacteria-free inflammation. I think it explanes good and if not,...

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  • dg2901
    replied
    Re: Not an infection

    A simple "i'm not dealing with an infection; thank you for your concern" is a good enough explanation for some. Fortunately I'm past the explaining to everyone phase, however it got to where I had to get very in-your-face graphic with people to make them either understand or stop offering their suggestions.


    Diana

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  • domv
    started a topic Not an infection

    Not an infection

    My friend just said to me: "Have u tried the medication cipro? My mom had a bladder infection problem and that really worked for her." Do I even bother trying to explain that what I have isn't an infection?
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