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My Story

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  • My Story

    When I was first diagnosed with IC(about 3 1/2 years ago), I actually came to these boards/web page and also did quite a bit of chatting in the IRC channel...At that time I was relatively angry and really felt hopeless...(I am a male with IC and am 26 years old) Over the past couple years though I have done the best I could to educate myself regarding this disease I have, and to work with it...I have seen a few urologists, physical therapists, chiropracters, pain center etc. I must say, through all of this I have calmed down a lot and have actually come to grips with the illness and myself...through education of the to do's and not to do's I have actually increased my quality of life significantly....understanding the best things to eat, the right stretches and exercises to do(and seeing how those exercises directly benefit the problems that the IC causes) and a couple medications which actually help(i had been through so many meds at one point you could not even count them all)....for a long period of time I was angry and really never thought i'd see any progress or feel any stability...I'd just like to say that it is possible to attain quality of life out there to those people who are really suffering bad right now...and for me to say that should mean a lot (people who had talked to me a couple years ago knew how very negative I was and angry about being ill I was, and with my emotions being so out of whack I could not fathom putting together any realistic attitude of reaching quality of life and stability). Even though at the moment I am on disability, I have gotten back into doing light weight lifting and a good deal of physical training which has helped a lot(the stretches are so important), have bettered my relationships with the people important to me, and I am even going to be starting to do some work again for a medical office. Depression can really play an integral part of this illness... and I have learned it is very important to address that so that you can gain the most realistic outlook of your life possible, in a positive way, ie. getting the depression under control and going from there is so important. I want to thank the people who run this web site, the people who come here and share their stories and what has helped them, and thank the doctors who really do everything they can to research this disease and help those suffering. Understanding this disease is so important, if I were to give advice to someone new with IC, it would be to do as much research as you can based on the illness (and dont worry if certain aspects dont apply to you, there are certain variables that effect different people differently in some cases) understand your body and mind as best as possible.

  • #2
    Hi nice to meet you and to read your story. My ic is progressing and I am thinking of the insterm done. It will be done next month, it is all in place. Just praying. I am doing alot of research. I have had remissons and I wish I could get them back.
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie


    • #3
      hi bio
      wb was wondering what happened to you.. glad to see you came back to the boards... thanks for sharing your story, hope to chat again in the chat room
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        Hi bio, and what a great and uplifting post. Your message rang true for me in several ways. I, now also feel I have a handle on my IC, and living a fairly normal and productive life. Mostly reading and learning about the disease and with a lot of help, and information, and support from this wonderful network, it has done so much for me. The friends I have made along the IC path, and dealing with it, have made such a difference in my life and are such an important part of my coming to terms with IC. Great to read your post, and share in what is going on with you dealing with IC. Take care and a welcoming back hug, Iris. hi grouphug
        Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


        • #5
          Hi. Thanks for that great message. It helps so much to know that their is hope.
          West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
          [email protected]


          • #6
            Bio, I'm a 31 year old male with IC and I'd be really interested in what stretches you find helpful. Due to spasms, my pelvic floor muscles on my left hand side are twice as thick as the muscles on the right. Most PFD treatments are geared towards women, so I'm having challenges finding relief. I've often thought some sort of exercise or stretch would be beneficial, so if you could share with us some of the things you do I would really appreciate it.
            Thanks a lot for sharing your story. It's inspiring.


            • #7
              It was very nice to come to the boards this evening and read your post. I do remember you and that you were having a really rough time. It's good to know that you are doing better now.

              And thank you so very much for sharing your good news with us. It will give others hope that they will also have better days.

              Sending a warm hug,
              Stay safe

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              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Anyone who says something is foolproof hasn't met a determined fool


              • #8
                i used to have them scanned onto my computer, because my therapist had them printed out on paper for me...i'll have to try and find them and scan them for you....if i cant find them to do that, guess i'll just have to do my best to try and describe them hehe....thanks for the replies also.


                • #9
                  Welcome back to the boards! Glad that you are doing much better.

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