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When Bladder Pain Takes Over
By Jill

My experience with interstitial cystitis (IC) began when I was 32 years old. How?? It was a chemical accident. I regularly swam several hours a week. One unfortunate day in 1992, the club staff bombed the pool with massive levels of acid and chlorine, but they forgot to put the ‘closed’ sign up. Normally, a pool is closed for 48 hours after treatment like this. I swam in it within hours and developed bladder symptoms that day.

I will say that I had a history of bladder sensitivity. I also have a strong family connection with bladder problems. My grandmother, aunt, mother, sister, cousin and then some have all had various bladder problems, though only my grandmother and I ever received a diagnosis of IC. The others were told that they had ‘honeymoon cystitis’ or ‘very sensitive bladders.’

As an adult, my symptoms began with frequency and urgency. My first diagnosis was ‘chemical cystitis.’ Yet, over the following year, I had more and more flare-ups. First once a month, then twice a month, then weekly until finally I had symptoms every day. It became a struggle to work and, many days, just driving in the car would leave me in tears.

I didn't understand what was wrong with me. I had no idea that the bladder could hurt so badly and was worried that it was cancer. I felt alone and isolated, as if no one else could understand the despair that I was feeling, especially in the middle of the night when I was unable to sleep. It was devastating. But, in the summer of 1993, I experienced hope when I finally met another IC patient.

This is worth saying several times. Talking with other IC patients is so important. It reminds us that we're not alone and it can tap into a body of coping skills and knowledge that some care providers may not be familiar with. For example, my first IC friend told me about diet and how important it was for me to protect my bladder by NOT introducing irritating acidic foods, like coffee cranberry or soda. I drank cranberry juice by the gallon that first year. Arrghh! No wonder I got worse. I was pouring acid on the wounds in my bladder every single day. By stopping that alone, I was able to reduce my dietary flares dramatically.

The second thing that she gave me was permission to stop and rest. I was forcing myself to walk, to exercise (Did I say that I was an exercise nut?) and to be with family or friends, despite the fact that, many times, it exacerbated my pain. Why? I didn't want the IC to ‘win.’ But pain is a signal to our bodies that something is wrong. We would never run a marathon on a broken leg, so why do we try to run a marathon on a broken bladder. I realized that I had never stopped and just rested. I finally gave myself permission to say ‘no’ if my bladder hurt. What a concept.

These two pearls of wisdom helped me survive and gave me the chance to see that there was hope. Believe me, I needed it. It just seemed that 1993 was not the year for me. Despite my position as a fund raising manager with a major non-profit organization, my boss didn't believe that I was sick. I was told that I came from ‘weak stock’ and that I didn't ‘look sick.’ I was constantly defending my need for doctor visits. That summer, I lost my job. Oh, did I also mention that my boyfriend left? He just couldn't cope with having a sick girlfriend.

Yet, in the face of this adversity, a lot of really good things happened to me. My family became closer than ever before. My parents are my heroes. They didn't pressure me to attend family events, holidays or parties. They gave me time and let me heal.

A big part of my recovery was doing a daily voiding diary to help me track how I was feeling. By doing that, I was able to see my normal monthly flares and to stop worrying about them. For example, I learned that I usually flared when I ovulated and before my period. But, I could also see that those flares always resolved and that they weren't worth a frantic call to my doctor every month.

It's now 2004, and twelve years since the onset of my IC. My life is pretty darn good. Yes, I still have symptoms on occasion. As long as I watch my diet, pace myself AND catch flares early, IC rarely interferes. The biggest limitation that I have is that I'm not a fan of riding in a car over a long period of time, but I've I even managed to make several long plane flights.

Through these years with IC, I have had to make some important (and often hard) life decisions. It helped me walk away from some poisonous relationships that weren't helping me during a time for recovery in my life. Most of all, it helped me to believe that, regardless of my affliction, I could make a difference. I still had my hands, my brains and a new, renewed sense of determination. I am very proud of what I’ve accomplished.

— Jill Osborne Founder, Interstitial Cystitis Network (http://www.ic-network.com) Reprinted with permission.