News & Blog

My name is Sharon Hicks. I am a 54-year-old female who was diagnosed with IC about five years ago, but I’ve had it for about ten years. In those ten years, I have been seen by eight different urologists and two general practitioners. At the beginning of this journey I was diagnosed with kidney stones and my doctors told me that was my problem. Working together, we got rid of the stones but the bladder pain and blood that persisted and were horrible. Searching for an answer, I was passed from one doctor to another. Finally, after the fifth urologist I was diagnosed with IC and endured a gauntlet of procedures. Nothing seemed to help, but at least it did have a name – IC!

One of the first steps I was advised to take after my IC diagnosis was to change my diet. I had already learned to avoid certain foods, but that wasn’t enough – the pain continued. Then I was told that I was depressed and “maybe your husband is having an affair,” by my urologist, so the next course was to try counseling to deal with life because emotional stress affects IC. I’d been married for about thirty years at that time and had a great marriage, so that certainly wasn’t the case, but I did as I was told and went to see a therapist. After six months of treatment the psychologist told me to find a new urologist (I never once said a negative remark against my husband)! So I mentally went through the checklist: diet modification – check, therapy – check, no perfumes or soaps – check. Now what?

In March 2010 I was diagnosed terminal. I had lost a lot of weight and was down to skin and bones. My gastroenterologists and internists couldn’t figure out why I wasn’t able to keep food down. I was starving to death and fighting the IC at the same time. The doctors did exploratory surgery and still couldn’t find anything, so I was put on a feeding tube and even that didn’t work. Then finally my doctor referred me to an endocrinologist and with one simple blood test the mystery was solved. The illusive culprit? Celiac! It just goes to show we never know what our future holds.

This disease affects many women and men and usually changes their lives. Take me, for example. IC caused me to lose my career and I now receive Social Security Disability. Among the lessons I’ve learned is that we never know what tomorrow brings. With that in mind, I take better care of myself and don’t over-extend myself and stress when others need me. Most of all, I don’t have to apologize for doing what I need to do to take care of myself. My pain management doctor and I have built a great relationship, I research on my own every day, and I keep writing and encouraging the medical field to show more compassion for IC patients. I feel very optimistic that there will be a cure – it’s just a matter of when.

We have a choice. Give up or give all. We have to enjoy every day – IC or no IC.

Best wishes for a pain free life!
Sharon Hicks