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Not an infection

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  • 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?

  • #2
    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.

    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.


    • #3
      Re: Not an infection

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


      • #4
        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.


        • #5
          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.


          • #6
            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.

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            • #7
              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,
              I speak of my personal experience only to provide support to others who have IC. I am not offering professional advice in any way. All patients are different and may respond differently to various remedies and medical treatments. These posts are based on my personal experience and are not meant to be viewed as medical advice nor do they replace the proper evaluation and treatment by a medical professional or healthcare provider. Please seek out treatment and medical advice from your doctor and medical team.


              • #8
                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.


                • #9
                  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.
                  Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
                  Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
                  Greetings from Denmark!