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Discovering hope and healing: My journey with IC/BPS


It happened out of nowhere.

One day in December of 2000, I was perfectly fine. The next, I had unbelievable stabbing and searing pain in a place that no one wanted to talk about.

I will never forget the morning “it” happened. I felt the urge to urinate, and afterwards, immediately felt like I needed to go again. I would urinate every five to ten minutes. I felt burning pain. Nothing alleviated my suffering or gave me relief.

I went to my physician thinking I had a urinary tract infection. He treated me with antibiotics that did not help. My pain got worse. As time went on, I was having difficulty sitting, standing, and lying down. I had trouble sleeping. Everything I ate seemed to make me feel more burning. People would look at me and ask if I was okay, but I did not know how to respond. What was I going to say? It hurts where I urinate!

My life was turned upside down.

Once an active young woman, I was no longer able to exercise. I also had challenges working and took countless sick days. At the time, I was looking for a new job but was unable to pursue one. My entire life was put on hold indefinitely.

I went to numerous physicians who seemed baffled. I found one doctor where I lived who treated IC/BPS. A hydrodistension finally confirmed my diagnosis. I was panic-stricken because I knew through extensive personal research that IC/BPS had no cure.

Over the next four years, I tried every treatment possible including dietary changes, medications, physical therapy, acupuncture, and bladder instillations. Some helped a bit, but never quite took my pain away. Eventually, I found a medication (Cystistat) that helped me and along with pelvic floor physical therapy, I was able to get better.

I felt hope the day I found the ICA.

I remember contacting the ICA years ago when I had pain. Everyone I spoke with was so helpful. It really made a difference to know that someone cared. Today, I have occasional flares but can live a more normal life. With the ICA’s resources, I researched and educated myself about IC/BPS and worked with physicians, physical therapists, compounding pharmacies, and a pharmaceutical company to resolve my IC/BPS pain. Throughout my journey, they gave me the tools I needed to learn how to navigate this complex health issue.

I decided I wanted to make an impact and joined the ICA Board of Directors because we are the only non-profit organization that exists to support the IC/BPS community. My hope is that the ICA can continue to advocate for IC/BPS research dedicated to the discovery of a cure and better treatments, raise awareness, and serve as a central hub for healthcare providers, researchers, and patients. I want to put an end to the debilitating pain that men and women suffer from with IC/BPS.

I am so honored to be a part of the ICA’s mission that drives us to provide invaluable resources to the IC/BPS community. As a nonprofit organization, the ICA’s growth and impact depend on the generosity of donors like you.

Your gift, no matter what size, can help us make a lasting impact that can change people’s lives. We sincerely appreciate your continued support, dedication, and commitment to all who live with IC/BPS every day.

Thank you for your consideration and your ongoing generosity.

Shelley Kardon
IC/BPS Patient and ICA Board Member

P.S. With your kindhearted contribution, YOU can help the ICA advance our programs and continue our critical work. Donate today with a one-time gift or monthly donation. Simply donate online at! Thank you.

The ICA is the only nonprofit organization dedicated to improving the quality of healthcare and lives of people living with IC/BPS and is a 501(c)(3) organization (EIN 13-3292137).