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"Choosing To Live Is A Wonderful Choice"
By Cindy S. (Submitted February, 2005)
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