IT HAPPENED TO ME: I Have a Chronic Condition that Was Misdiagnosed as UTIs for Six Years

March 21, 2016

When I got married at 21, I'd never had sex.

Prior to entering the wild new frontier of sex-having, I went to my doctor for a standard physical and asked every question I could to strategize a plan to avoid a UTI, or "honeymoon syndrome," a euphemism that is both inaccurate and insulting in its attempt to be cute. She told me all the basics: pee before and after intercourse, wipe front to back, etc. I followed these instructions religiously.

Yet, about a month after I got married, I was experiencing some very unwelcome feelings during bathroom visits: burning with urination, a threat-level-midnight need to pee only to have a couple drops come out, and having that feeling occur every 10 minutes. Not knowing exactly what was going on, I decided to wait it out for a day to see if it went away before contacting my doctor (first mistake).

It wasn't until the next morning when I noticed a frightening amount of blood in my urine that I decided to go the doctor. By the time I arrived at my doc's office, I was in so much pain that I passed out in the waiting room. My urine sample contained enough blood that it was dark red. As I placed the sample cup in the little cabinet in the bathroom, I quietly giggled at the horror the next patient would experience should they open the cabinet and see my sample in there amongst the others.

My doctor tested my sample and said there was a small trace of bacteria, deemed it a UTI, and sent me on my way with a prescription for antibiotics.

This scene would continue to play out over and over again for the next five years (thankfully, minus the blood and passing out): severe discomfort, arrive at various doctors' offices/urgent cares shaking from pain, urine sample, trace amounts of bacteria (or no bacteria), antibiotics "just to be safe," drink water and cranberry juice, wait it out. Repeat.

This was happening multiple times a year and no one could tell me why. And, more frustratingly, doctor after doctor acted like it was not a big deal even though it was really affecting my life.

I was in constant pain. Taking rounds of multiple antibiotics — sometimes back to back — which is never good, not to mention the physical side effects. I was also doing this while taking birth control in an attempt to prevent pregnancy and was never told that antibiotics can cause the pill to not work. It's a wonder I didn't get pregnant during this time. Or, maybe not, considering every time I had one of these episodes, it rendered me untouchable.

At this point, I was taking cranberry capsules every morning and night and had a low dose of antibiotics on hand that I was supposed to take every time I had sex. Symptoms would rise and subside, but never fully go away.

Finally, I'd had enough. Enough pills. Enough dreading going to the bathroom because of the pain. Enough of this disrupting my life.I started doing some research online. Normally, this kind of poking around ends with being told you have cancer or your parts are rotting off, but fortunately, this search resulted in a life-changing discovery.

I stumbled upon a condition called Interstitial Cystitis (IC) or Painful Bladder Syndrome. IC is a chronic condition marked by pelvic pain, urgent and frequent urination, and pain when urinating (sounds remarkably like a UTI, no?). While IC exhibits symptoms similar to a UTI, it's not caused by an infection and is treated very differently, which means antibiotics won't help.

The exact cause is unknown, but it's suggested that a weakness in the bladder lining, or epithelium, can allow substances in urine to cause irritation to the bladder wall. Substances such as acidic foods and drinks. Like cranberry juice and capsules.

That night, I immediately ceased taking cranberry pills. The next morning, I noticed an instant difference. No painful peeing. What. The. Heck?