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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.
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 ichelp.org/GiveHope! 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).