I have recently turned 22 and for the most part have considered myself healthy- with the exception of some issues of anxiety and IBS. I have not been diagnosed yet with IC, but have been struggling with what I though were possible UTI's for the past 6 months- but besides the first time, everytime I have gone to get tested (about 1x a month), the tests have come back negative. My symptoms were not exactly like a UTI- it never burns when I use the bathroom, but I have a constant pressure that before I did not want to describe as pain because it does not fit what I have known before as "pain." On my worst days, I just feel completely wrong- almost like there is something inside my body that is too big and wants to explode, or like I am carrying around poison that is just making my body feel awful. I become reclusive and try to stay away form social activities, my friends, etc., and just do my best to continue to go to work and fulfill all my normal routines. Forcing myself to be "fine," however, has come with a severe physical and mental toll.
I recently went to see a gyno-urologist. She told me my bladder is working fine and that I have no detectable infection. She set me up with an appointment to get an ultrasound to check for other issues, but then asked me if I had heard of interstitial cystitis and suggested that might be a factor. I said "kind of" because I have read the name before, but in reality she sent me out of her office with really no idea, until now when I have done some online research.
I have not been officially diagnosed with IC, and many of the things I have read on here I have experienced in the past 6 months- the funny feelings of knowing something isnt right, constant pressure, increased urgency, doctors and other people not taking your symptoms seriously, and the downward spiral of confusion and depression of not thinking that anything is going to cure you. After reading many of these stories, I am thankful I have only dealt with this for 6 months and not years- I can't even imagine.
Although I am relieved to hear that others are experiencing this, I am also terrified. Hearing that you may have an incurable disease is not easy at 22. So many thoughts are racing through my head- how will this affect my life? how will this affect future relationships? will i have a normal sex life? I am a huge fan of adventure and traveling, and am worried if this is going to change my possible plans of living abroad.
Right now I'd really like to hear words of encouragement. On my worst days, I find myself really down. I honestly begin to think I'm never going to feel "normal" again. I find myself jealous and angry being around my friends who are feeling fine. I can't believe I've ever wasted time or worry on every petty issue I have in the past. I know that during this process it is crucial to be positive and take one step at a time, but I think that I am still grieving for the life I feel like I may have lost.
Would really appreciate some words of encouragement. I just want someone to tell me it is possible to improve and feel like myself again, because right now I am having trouble remembering what that feels like.
Thanks for your support,
Jessica
I recently went to see a gyno-urologist. She told me my bladder is working fine and that I have no detectable infection. She set me up with an appointment to get an ultrasound to check for other issues, but then asked me if I had heard of interstitial cystitis and suggested that might be a factor. I said "kind of" because I have read the name before, but in reality she sent me out of her office with really no idea, until now when I have done some online research.
I have not been officially diagnosed with IC, and many of the things I have read on here I have experienced in the past 6 months- the funny feelings of knowing something isnt right, constant pressure, increased urgency, doctors and other people not taking your symptoms seriously, and the downward spiral of confusion and depression of not thinking that anything is going to cure you. After reading many of these stories, I am thankful I have only dealt with this for 6 months and not years- I can't even imagine.
Although I am relieved to hear that others are experiencing this, I am also terrified. Hearing that you may have an incurable disease is not easy at 22. So many thoughts are racing through my head- how will this affect my life? how will this affect future relationships? will i have a normal sex life? I am a huge fan of adventure and traveling, and am worried if this is going to change my possible plans of living abroad.
Right now I'd really like to hear words of encouragement. On my worst days, I find myself really down. I honestly begin to think I'm never going to feel "normal" again. I find myself jealous and angry being around my friends who are feeling fine. I can't believe I've ever wasted time or worry on every petty issue I have in the past. I know that during this process it is crucial to be positive and take one step at a time, but I think that I am still grieving for the life I feel like I may have lost.
Would really appreciate some words of encouragement. I just want someone to tell me it is possible to improve and feel like myself again, because right now I am having trouble remembering what that feels like.
Thanks for your support,
Jessica
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