My first bout with cystitis came about when I was 23 years old. I was living in a small university town. The doctor proscribed sulfa, said almost nothing about how I was presenting, did not ask how I was feeling and sent me on my way with a prescription. A day later, I had an all over body rash and felt extremely nauseated. I called the doctor who suggested I take Benadryl. Five days later with symptoms getting worse, I went in whereupon he declared I had the three-day measles and told me to continue the sulfa drugs. A few days later, I went in again, and he realized that I had a severe sulfa drug reaction. In the meantime, I had lost 8 pounds and felt weak and exhausted.
My cystitis bouts would continue through my thirties, forties, and fifties. Sometimes they would occur in monthly clusters and sometimes there would be months in between. Antibiotics were always proscribed and predictably, a few weeks later, I would have a reoccurrence.
Sometime in my late thirties, I called my mother after a series of infections as I was feeling defeated. Often these bouts of cystitis were accompanied by extreme achiness and fever. My mother was an RN and had always emphasized drinking copious amounts of water to flush anything out of our systems including the common cold. She suggested I drink 8 plus ounces of water every hour over a 24-hour period and that it would literally flush the bacteria from my bladder. I proceeded to set an alarm that evening, woke up every hour, drank 8 ounces of water and tried to sleep for 50 more minutes. Miraculously, the symptoms had abated by morning. I had a method for dealing with my infections that worked to a certain degree. If the infection was more acute, I would take antibiotics but always accompanied by drinking copious amounts of water every hour. It was a merging of tactics, but I was happy that it even helped.
It has been quite a journey and mostly I had to figure out a protocol that worked for me without much help from the medical community. I was always searching for the “root cause” but that was never forthcoming.
I am so excited about the evolving advocacy being developed here and hope that it lessens the frustration and pain for other women in the future.