My Interstitial Cystitis Story: I Didn't Give Up
My bladder pain began literally overnight. One day I had no symptoms, and the next day I was barely able to walk. How? Well, in my case, it began in a swimming pool.
I loved to swim, often several times a week. Unfortunately, poorly trained staff at my gym did a routine chlorine and acid adjustment of the pool water but forgot to put the “closed” sign up. I was later told that several women had reported similar problems, though my case was apparently the worst. The symptoms appeared later that night. It felt as if I had a horrible bladder infection with soon to be daily symptoms of frequency, urgency, and, for the first time ever, bladder pain.
My first diagnosis was “chemical cystitis.” My doctor thought that I had sustained a chemical burn or irritation. Yet over the following year, my symptoms worsened, and I was eventually diagnosed with interstitial cystitis (IC). I had “flares” first once, then twice a month. It quickly became weekly and then, finally, progressed to daily symptoms. I was unable to sleep through the night and had moments of intense frequency, but the worst symptom was severe pain whenever my bladder filled up with urine. Driving in a car became agonizing, particularly if I couldn’t find a restroom. “Holding it” was excruciating.
Like so many other people with IC, I didn’t understand what was wrong with me. I had no idea that the bladder could hurt so badly. Bladder pain is characterized by being relentless and difficult to ignore, and I certainly found that to be true. On some days, I couldn’t sit, stand, or lie down with comfort. All I could do was pace and cry. Naturally, I assumed the worst and suspected that I was dying of cancer, though my doctor was positive that it wasn’t. It was a devastating and frightening period of my life.
A life-changing phone call
Hope first came in the form of an IC support group leader, who, in just one phone call, taught more about IC than my doctor had in the previous year. 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 knowledge and coping skills that some care providers may not be familiar with. For example, that group leader told me about the IC diet and how important it was for me to protect my bladder by not introducing irritating acidic foods, like coffee, cranberries, or soda. I had been drinking cranberry juice by the gallon that first year in a desperate attempt to feel better. 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, and to be with family or friends, despite the fact that I was in horrible pain. Why? I didn’t want the IC to “win.” But, as she said, 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.
Help in dark times
These two pearls of wisdom gave me hope. Believe me, I needed it. Despite my position as a fundraising manager with a major nonprofit, 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, especially for those weekly DMSO treatments. I eventually lost my job and health insurance in a downsizing that targeted only disabled employees.
Yet, in the face of this adversity, good things were happening as well. My parents offered a steady supply of encouraging words, hugs, and patience. On the days when I could barely walk, they drove me to the doctor. They didn’t pressure me to attend family events, holidays, or parties. They gave me time and let me heal. Many people receive no support from home despite the fact that they are in pain. This is a great tragedy. We didn’t ask for IC. We didn’t cause IC. IC patients deserve compassion and respect, not accusation nor blame.
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