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So Many People with IC…So Little Awareness

My name is Sandra, and my IC journey has been a long one. I endured over ten years of doctor after doctor without any diagnosis. Eventually my physical condition got so dire I had to move away from my home town and pray I could get help. Finally, I found one of the kindest urologists ever who cares deeply about his patients. He committed to finding answers for me and tried everything he knew. Despite his expert care and persistence, I could still not get relief, until he sent me to a physical therapist that specialized in working with pelvic muscles. That was the magic moment I’d been waiting so long for. Physical therapy brought me so much of the relief I had so long sought.

In addition to physical therapy, diet has proven a crucial ingredient to my pain relief and treatment. I gradually learned what I could and could not have, and what a difference it has made! I do still get the occasional flare, but when they occur, they are nothing like the excruciating and debilitating pain I once had. With IC I get a lot more urinary tract infections, even though I never had them before, so I have a standing order from my doctor to bring in a urine sample to the lab for a culture periodically. And yes, I have definitively been diagnosed with IC.

I recently had my yearly check-up with my doctor, and even though I have the Hunner’s Lesions in my bladder, he was so thrilled with my progress. Neither of us knows why my treatments work or how long the relief will last. All I know is that I am thankful for the relief. My doctor is apologetic that he can provide no permanent cure or new treatments. He is such a busy and caring doctor who wants very much to help, and is frustrated by the suffering he sees every day in me and others like me, but he constantly tries to learn more about IC by traveling to many IC meetings specifically for doctors so he can educate himself and give the best treatment to his patients.

What I don’t understand is how there can be so many people with IC and so little awareness in the public. However, ICA is working tirelessly every day to change that and spread knowledge far and wide. I suffered for fifteen years and wonder what life could have been like if only I had been diagnosed earlier. I feel for everyone that battles with this disease. Know that with strength and perseverance, it will get better.

Sandra Schoonover