Interstitial Cystitis: I Always Knew It Was Not In Her Head

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Reader’s Question

This isn’t a question but feedback to Dr. Bierman. I admire the replies Dr. Bierman has given, but I hope for the sake of people suffering, that he will consider adding an addendum to his recent answer regarding sleeping problems and frequent urination.

For 15 years I had interstitial cystitis (IC). Urinary exams are extremely uncomfortable, and if you have IC, they are nothing short of torturous. I was finally diagnosed correctly. The only way it can be diagnosed definitively is under anesthesia, filling the bladder and examining the bladder wall.

Doctors are hesitant to do that. One doctor FINALLY did that for me. It turned out my bladder had pinpoint hemorrhages all over it. When the surgeon came out to show my husband the photos of my bloody bladder, he began crying and said “I always knew it was not in her head. No one would listen.”

One of the first doctors I saw on my long journey to diagnosis tried to “stretch” my bladder without anesthesia in his office. I was yelling for him to stop: the pain was unbearable, and when he didn’t, I kicked him and the nurse and the apparatus away and jumped up and ran to the bathroom, exploding with the water on the way. It was humiliating and embarrassing and traumatizing, and the doctor was furious and went to the waiting room and loudly told my husband that I was nuts and needed a psychiatrist, not a urologist. Actually, I was a very strong individual who saved herself from a ruptured bladder! My bladder had, besides having the hemorrhages, shrunken to 1/3 normal capacity, even under anesthesia. I didn’t dare go to another doctor for more than a year, despite the great pain I was in.

We tried everything. Nothing worked.

After 15 years, a compassionate doctor took out my bladder and replaced it with a bag.

GONE INSTANTLY was the anxiety, the fatigue from never being able to sleep more than 30 minutes, and gone instantly was what looked like obsessive compulsive behavior: running to the bathroom all the time. (Once, an airline attendant — before 911 — slammed me upside the bathroom door and demanded to know why I was going in there all the time.) Gone was my anger. Sex didn’t hurt anymore. My life totally changed for the better. Even my arthritis was gone (it can be induced by constantly waking up in the night, even in college students). And I could stand in lines, shop, watch a movie, go to a football game — ordinary activities that are impossible if you can never go longer than 30 minutes without a bathroom, and often not that long.

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The point is that people with IC LOOK crazy. They are not. And it remains a disease that even some urologist didn’t “believe in” or in some cases have not heard of — or at least that was the case 11 years ago! People in constant bladder pain present as crazy — anxious, desperate, preoccupied, frantic, obsessed. And they get written off by the medical community.

IC is a very cruel and debilitating disease, and it is made worse when people suggest it is all in our heads.

— Patty in Arizona

Psychologist’s Reply

Patty, thank you so much for sharing your incredibly moving story. I can’t agree with you more. Before we even consider making a psychological diagnosis, we need to rule out a physical/medical cause for distress. For you, Patty, you couldn’t get a proper diagnosis. An incorrect diagnosis can be as cruel as the disease. Thank goodness you finally were able to succeed at that.

Patty’s is a cautionary tale for us all. Do not be afraid to get a second opinion about distress that you are suffering. Don’t be overly eager to believe what experts tell you, including me. Question everything. Some people say you have to be a doctor to be a good patient these days. Maybe they’re right. Since we can’t be doctors in every medical specialty, then we have to do our due diligence and advocate for ourselves. Congratulations to your husband as well who stayed with you through thick and thin. You two are an amazing couple!

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