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

My flare-ups consist of pain that feels like my bladder is made of hellfire and I'm peeing out acid and broken glass every 15 minutes.
Publish date:
March 21, 2016
peeing, UTI, Cystitis, Misdiagnosis, Interstitial Cystitis

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?

I looked into it further and found a list of food/drinks to avoid:

  • Coffee
  • Chocolate
  • Alcohol
  • Citrus and cranberry juices (oh, you mean what doctors told me to drink everyday for the past five years?!)
  • Soda
  • Spicy foods

I made an appointment with a urologist to get some tests and determine if IC was really what was going on. At first, my urologist got a little mansplainy and dismissed the notion that I could have IC, noting that it usually doesn't affect people until a much older age. However, once I explained my history and symptoms, he said it sounded like that's what I had.

I had a urine test and an ultrasound to check my kidneys and bladder for growths or other abnormalities, a process which required me to drink a large-soda-sized cup of water and hold it for 30 minutes before my appointment, then fight back tears and suppress the urge to pee all over the exam table while a technician pressed into my already-painful bladder with a transducer covered in warm gel before letting me get up and run to the bathroom for one of the best pees of my life. I would have several of these exams in the following years, and will probably have many more in my lifetime.

After tests came back normal, it was determined that I did, in fact, have IC. (In some cases, a cystoscopy will be done which involves inflating the bladder and viewing the inside with a scope. My urologist determined the evaluations I'd had done were sufficient for my specific case.)

It's now six years since my diagnosis, and I'm still learning to live with IC. I have occasional flare-ups. These usually consist of pain that feels like my bladder is made of hellfire and I'm peeing out acid and broken glass in small amounts every 15 minutes. It also causes pelvic pain that extends to parts of my body that I refer to as "the undercarriage," back pain, nausea, bloating and occasionally, my old friend, bloody urine. These flare-ups can last anywhere from a few days to, as my most recent one did, a couple months.

People with IC experience a range of symptoms on a spectrum of severity. There are people like me with occasional flare-ups to people who live with this every single day. Avoiding flare-ups comes down to a lot of trial and error and learning what affects your body. I've found I need to avoid anything really acidic or spicy, chocolate, and make sure I drink water pretty much constantly to keep my urine really diluted. I should also note that three years ago, I cut gluten from my diet and have had far fewer flare-ups since.

There are also activities I have to avoid. My most recent aforementioned flare-up was caused by a new workout I tried for three days that involved a lot of jumping. Jumping is out of my life forever (goodbye, plan to master a backflip on a trampoline). Same goes for sex without at least a one-day recovery buffer in between.

When I do have a flare-up, all I can do is grab a heating pad, take an anti-inflammatory, drink water and wait. Oh, and AZO Urinary Pain Relief pills are my best friend. They turn your pee this fun, unnatural shade of bright Tang orange, but they also eliminate the pain and urgency of peeing, which is a miracle that makes me praise Jesus out loud while sitting on the toilet every time it kicks in and I'm able to urinate without crying.

While IC and its treatment are not fully understood and are ever-evolving, it has a large support community. There are tons of message boards with people sharing their experiences, questions and solutions, which is great when you're up at 2 a.m. with a new symptom, wondering if you need to go to the hospital. There are even support groups you can join to talk to other people dealing with IC.

Obviously, I'm not a doctor, and this is just my experience. But I wanted to write about it because if someone had told me about IC sooner, it would've saved me years of needless pain and pill-taking. If you suspect this is something you might have, talk to a doctor and don't accept, "You just have UTIs" as an answer. Be an advocate for yourself.