A Message from IC Patient and ICA Board Member, Claudia King
My name is Claudia King, and I live with IC. I was diagnosed with IC in 2005, just a month before my wedding. But my journey started long before. I had constant bladder infections, painful urination, and lower back pain and pressure that felt like fifty pound hooks hanging from my hips. I also didn’t go to the bathroom very often, and when I did, it was a struggle. I had to push so hard just to pee. But, I thought all these things were normal, because it was what I had known since high school.
My path to a diagnosis was a humiliating one.
I remember vividly going back to my primary doctor after three days of antibiotics for a urinary tract infection. I was still in a lot of pain and experiencing urgency and frequency, so I figured I just needed another round of antibiotics. The doctor came in and very matter-of-factly said, “You don’t have an infection anymore. You must have an STD. We’ll run tests for them to see which one it is.” I was horrified, embarrassed, and in shock. I knew I didn’t have an STD, but this doctor wasn’t giving me any choice. In my mind, he was declaring me a person unworthy of anything other than a sexually-transmitted disease.
Tests were run, and they were all negative. For me, the damage was done. The humiliation and anger I felt couldn’t be erased. There were no apologies and no other help from the doctor, other than to say, “I guess your endometriosis is back. You should see your gynecologist.” Truthfully, in that moment, I was happy he was giving up on me and sending me back to the most compassionate doctor I knew.
I called my gynecologist, and when he had me run through my symptoms, he said, “You have interstitial cystitis. Come see me to confirm the diagnosis.” The next day, a potassium sensitivity test was performed, and it only took the tiniest amount of potassium injected into my bladder for the pain to set in and for the doctor to declare officially that I was now an IC patient.
My journey had only just begun.
I had no idea how IC would change my life. I was lucky enough to find one of the premier IC doctors, Dr. Robert Evans, nearby in Greensboro, NC. His kind, compassionate, cutting-edge care took me from a person who couldn’t work anymore to someone who felt more-or-less human on most days. But, I couldn’t have survived, especially in those early times immediately following my diagnosis, without the Interstitial Cystitis Association (ICA). The ICA was the first organization I came across that provided support and information and let me know that I was not alone. They gave faces to this terrible disease, and I was able to find a community of people that I felt really understood me and my journey. In the years since my diagnosis, during the numerous treatments and surgeries I have endured, the ICA has always been by my side. I have always known this was a credible source of information, a trusted place I could turn to for help. And I am so very grateful!
It became my chance to help.
I was so honored and proud when I was selected to join the ICA Board of Directors and work on the fundraising committee. My full-time job is fundraising and grant-writing for a nonprofit, and I knew I could take my skill set and help the ICA with its fundraising efforts. So, I am asking you today to support this amazing organization and all the work they do to help those with IC. Every dollar counts, and every dollar can help another patient just like me or just like you.
ICA Board of Directors