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  • Newbie

    Hello, I’m newly diagnosed. I’m 20years old and have had this disease for probably 3 years undiagnosed. I was originally diagnosed with endometriosis on my colon wall. I went to a specialist to have my endometriosis excised and came home with a severe IC diagnosis instead. I was misdiagnosed with endometriosis and pathology reports show only inflammation in my tissue. However, severe IC. This is all new to me and am thankful there is a network like this to learn from.

  • #2
    Re: Newbie

    Welcome! I’m glad you found this supportive network. I wasnt diagnosed until I was 36, but looking back I believe I had signs of it in my 20’s. I have been on and off birth control for the last 25 years or so and I have found that being on continuous birth control pill and ceasing my period has helped my symptoms tremendously. I would always flare right before I got my period and it would disappear within a few days of my period. For me it was not so much urgency and frequency as I would get a stinging sensation after I urinated in my urethra. When my ic became full blown, I had constant burning 24/7 what felt like my urethra but was most likely the base of my bladder. The good news is with proper treatment you can go on to live a pretty normal life once you figure out what works for you. It is helpful to see if you can track your symptoms. Is it constant pain all the time? Do you find it is worse at times than others? If you haven’t already started the ic diet, I highly recommend it! It took me quite a while being on the day before I was able to recognize what caused me pain and went It is helpful to see if you can track your symptoms. Is it constant pain all the time? Do you find it is worse at times than others? If you haven’t already started the ic diet, I highly recommend it! It took me quite a while being on the diet before I was able to recognize what caused me pain and what did not. The tricky thing about this condition is that for everyone their symptoms can be very different. Have you found a good urologist in your area yet? There is a list and I see specialists on this page. You might want to look at it and see if there is a specialist in your area. Not all urologist are up-to-date on the newest treatments. I think you will find wealth of information on here.

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    • #3
      Re: Newbie

      Hi Kda and welcome to the IC Network. Make sure that you watch our videos to start with... http://www.ic-network.com/videos/

      It's important to try to figure out what your subtype could be and we can help with that. For some teens, IC can begin after falls, sports, pelvic trauma. If you were, for example, a gymnast, ice skater, ... both involve repeated traumas to the pelvic floor muscles which could have created the foundation of your pelvic pain. In contrast, others, like myself, have early symptoms in our teens because we are IC subtype 5... aka super super sensitive bodies.

      So check out the first two videos and then if you have questions, don't hesitate to reach out!

      Jill
      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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