I didn’t think much about my chronic UTIs until my doctor suggested it might be caused by my illness.
At the time, I didn’t think much of it when my doctor told me that I had a urinary tract infection (UTI). I was more concerned with getting my prescription of antibiotics that would make the sensation akin to peeing razorblades go away. Besides, so many of my friends that were cis women or trans men tossed around phrases like “Oh, turns out I have another UTI,” that having one myself didn’t seem especially noteworthy. I followed my doctor’s instructions and noticed a huge improvement in my symptoms by the next day.
The problem was that, not even a month later, I woke up with symptoms of a UTI again. I constantly felt the need to pee and when I did, it burned. Within a few hours, my body began to ache too. It didn’t seem possible to me that I had another UTI, not after just getting over one, but when I woke up with a mild fever the next morning, I knew for sure.
When I saw my doctor later that day, she brought up the fact that I might have recurrent urinary tract infections, which I’d never heard of before. According to the Mayo Clinic, a UTI is exactly what it sounds like, an infection in your urinary system. The system itself encompasses your bladder, urethra, kidneys and ureters. You may get diagnosed with recurrent UTIs if you have two or more UTIs in a six-month period or three or more during a year.
My doctor and I talked about my treatment options for recurrent UTIs and I went on with my life. I continued to get a UTI every so often, at least one or two times a year, and would have to make a trip to urgent care to get it taken care of. I read over the pamphlet the doctors gave me on how to prevent future infections by practicing good hygiene and peeing after sex and such, but the UTIs still came.
It wasn’t until years later at an appointment with my specialist for my chronic illnesses, specifically POTS, chronic fatigue syndrome, and autoimmune disorders, that I found out that there might be a reason for my frequent infections. Some illnesses have been linked to people becoming more susceptible to infections, with urinary tract infections.
POTS, a form of dysautonomia which is a group of disorders of the autonomic nervous system, has been linked to urinary tract dysfunction. In the third edition of Clinical Methods: This History, Physical, and Laboratory Examinations, Michael J. Reichgott says that two-thirds of people with dysautonomia experience “nocturnal frequency…urinary tract infection, or bladder outlet obstruction” more than the average person.
Urinary tract infections are one of the most common infections and given that 40 to 60 percent of people with vulvas get a UTI at some point during their life and that 25 percent having recurrent UTIs, it makes sense that people with some sort of compromised immune system would be especially susceptible to them.
Another possibility of why I, along with many others, suffer from recurrent UTIs comes down to genetics. Urologist Doreen Chang, M.D., of the New York-Presbyterian/Columbia University Medical Center, says that some people are just more likely to get UTIs due to the “stickiness” of bacteria to the cells. The bacteria sticks to receptors, called toll-like receptors, which help regulate your immune system.
My doctor asked me how many UTIs I though I’d gotten since I first became sick in my late teens and I honestly didn’t have a clue except that it was a pretty large number. He was fairly certain that my bladder issues were as a result of illnesses. While my autoimmune problems are still currently undiagnosed, my doctor believes rheumatoid arthritis is one of the culprits which, according to Linda Fugate, PhD., says is associated with recurrent UTIs due to the inflammation.
I’ve been a lucky streak lately in that I haven’t had a UTI in a while. I’m keeping my fingers crossed it continues because they are not fun and exacerbate all my illness symptoms. It’s likely that recurrent UTIs will remain an ongoing problem for me and others with chronic health issues. Short of antibiotics, there isn’t a lot that can be done for it. I guess in the meantime I’ll just keep drinking my cranberry juice.