I have to share my story about IC because of the inspiration of others on
the IC Network site. I figure if they can write about it so openly and
honestly, so can I. My journey with IC began many years ago, twenty three years to be exact. I was a whole lot younger then – 24 years old. I had been living in Southern California where bladder problems were not known to me. I moved back to my home state of Pennsylvania and married. We moved close to a town where petroleum based products were manufactered. Living down wind from these factories presented some real challenges for me, because I have always seemed to be somewhat fragile healthwise. My bladder problems started then, along with allergies to molds and mildews. I saw my primary care physician every month or so and was constantly diagnosed with a UTI. The doctor would spin my urine and prescribe yet another antibiotic. Years went by. More antibiotics.

Eventually I was put on them therapuetically and took them like candy. The bladder pain remained. In 1989, I went to a urologist who suggested and hypothesized that my bladder opening was too small. He did regular and repeated dilitations. He then suggested a Meatal Plasty, which is basically plastic surgery on the bladder opening. I was always in so much pain, I decided it was worth a try. The surgery was ineffective and never brought about relief. For another fifteen years I struggled with why I kept getting infection after infection, although they never cultured my urine. (I learned the hard way that I should have never taken antibiotics without it.) It wasn’t until 1997 that I found a board certified urologist who suggested that it was possible that I had a rare bladder disorder called Interstitial Cystitis. He told me that he wanted to do a hydro-distension and take a look in my bladder to see. I can distinctly remember looking at the photos of my angry bladder and wondering how this could have happened to me.

About a year later, I went to see another specialist who claimed to be an IC expert. She also did a distension and asked me if she could use my bladder photos for her graduate student classes. I agreed, of course. I wanted everyone who was interested in IC to fully understand the disease and it’s effects.

I have had to make alot of changes in my life. I have learned to slow down and listen intently to my body and what it is saying. I am a single mother who works full time and is going to graduate school. I take online classes so that I can further my education without leaving my computer desk. I have days that are good and days that my bladder rebels. I have learned to take the good days and cherish them. There have been times when I had to convince myself that life is beautiful despite having a debilitating illness. I have learned to pace myself, laugh a whole lot, and be with people who inspire me and encourage me to continue to be the best I can be.

There are days when the couch is my best friend. I do work out three or four times a week and take yoga lessons. I want to help others understand this illness and I share my laughter and tears with those who fully understand. The IC Network has helped me tremendously.

I have found that one thing that has been a real source of comfort for me was to go out and get a pet. I find comfort in having my cat curl up on the couch with me to watch a tv show or sleep. I am into pet therapy as well as music therapy. I think it helps me to heal.

I have learned that life is worth living every moment. What a great choice, indeed.

Cindy S.
near Pittsburgh PA