WELCOME. I started this blog to share my personal experiences with Interstitial Cystitis (also known as Painful Bladder Syndrome), and hopefully lend support to anyone suffering from Interstitial Cystitis (IC) or any chronic disease. Please check out my posts.
I hope everyone is staying safe during this difficult time.
People with Interstitial Cytitis (IC) can relate to the list above.
CLICK on the image below to take a short quiz about IC! Test your knowledge.
Picture above transcribed – I have Interstitial Cystitis (IC). It’s a chronic, incurable, painful and debilitating bladder disease. Only half of all IC sufferers can work full-time. Research has shown it causes a quality of life similar to that of a cancer or kidney dialysis patient. But it is poorly understood and can take 2 plus years just to get a diagnosis. It is very difficult to treat…so please take IC seriously.
MY INTERSTITIAL CYSTITIS STORY
I was diagnosed with Interstitial Cystitis (IC) in 1995. After a year of going from doctor to doctor, I finally received my IC diagnosis. I was so happy to have the name of this disease that had been tormenting me for months on end. I just knew that with the disease identified that I could get the needed medications, treatments, etc. and get back to living my life.
What I was not prepared for was the feeling of isolation and lack of substantive help from the medical community I would encounter as I struggled to get a handle on this disease. Fast forward 20+ years and I am still trying to elevate my day-to-day life where I can be pain-free.
I am constantly researching the latest, greatest and even wackiest ways to “beat” IC. I just know there are answers out there. I say answers with an “s” because I think I may respond to something you may or may not or you may need two to four things to get these symptoms under control where I may need some other combination. I am even willing to say I believe there are CURES out there waiting for us to find them or maybe the more “medically correct” way of saying this would be to say I believe we can find ways to get this disease in remission.
One of the main reasons I have this blog is to document how something is or is not working for me when it comes to getting IC under control. I will NOT give up.
I also want to hear from you, the readers, and find out how you are doing. I think if we collectively pull our stories of successes as well as our failures on this blog, maybe we can start to make a real difference and “BEAT” IC!