How I Finally Found Relief for What Felt Like a Chronic UTI

This March, I grew tormented by the fact that I was peeing up to five times a night. Unbearably exhausted from interrupted sleep, I made an appointment with a urologist.

On the day of my appointment, I’d just gotten to New York City from a week in Miami covering a music festival, preceded by work trips to three different countries. I was working an editing job on top of a book proposal and a ton of freelance writing, and I was burnt out on a level I’d never been before, keeping myself motivated with two coffees in the morning and a cocktail at night. As a digital nomad (someone who travels nonstop while working remotely), I’d been crashing with friends in New York and getting very little sleep. I fantasized about a huge fluffy bed where I could sleep for days as I walked to the doctor’s office.

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“These issues tend to be stress-related,” he told me.

“Are you saying it’s in my head?” I asked. I was wary of doctors telling women that.

“No,” he replied. “I’m saying the mind and body are connected. But we’ll do a cystoscopy just to make sure there’s nothing in there.”

A cystoscopy is a procedure where a doctor puts a catheter up your urethra (sometimes after sedating you, but in my case, the urethra was just numbed), fills your bladder with water, and looks inside. When I came in for mine after taking a Valium the urologist prescribed, I broke down crying in the office. I hated how I’d turned into a zombie.

The urologist found nothing abnormal, but he prescribed me a drug called Amitriptyline, which was created as an antidepressant but numbs the bladder in lower doses.

The funny thing is, my perception that there was something very wrong my bladder became a self-fulfilling prophecy. The cystoscopy gave it the final push it needed to go from irritated to chronically inflamed. The next day, it constantly felt like I had to pee, even right after I peed. It was uncomfortable even to walk. It was as if something was eating away at the inside of my bladder, despite the Amitriptyline. I called the urologist the next day to ask him what the hell was going on, and he said my bladder was just irritated from the cystoscopy and would feel better within a day or two. Weeks later, when it didn’t, another urologist said it sounded like a UTI and gave me antibiotics. I took them and it seemed to clear up a bit, but two weeks later, it came back full-throttle. I eventually went Long Island to stay with my parents while I got this sorted out.

I then saw a urogynecologist (a specialist in female urinary issues), who explained that I likely had interstitial cystitis (IC), also known as bladder pain syndrome. I learned that IC doesn’t have a singular cause or set of symptoms; it’s a catch-all term for chronic bladder pain. It could involve deterioration of the bladder lining, dysfunction of the bladder nerves, pelvic floor dysfunction, and a number of other issues that tend to present differently for different patients, says Jennifer Linehan, urologist and associate professor of urology and urologic oncology at the John Wayne Cancer Institute in California. Sometimes it shows up as ulcers or lesions on a cystoscopy, but in many cases, it doesn’t. Linehan also tells that while the condition doesn’t have a cure, its symptoms can be alleviated with lifestyle changes, procedures, and/or medications. At that point, I was willing to try anything.

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So there were more meds that were ineffective on me. The pain continued. What made me even more depressed was that I was trying to maintain my burdensome work schedule on top of it all. One night, I lay in bed daydreaming about a vacation when something clicked: If this really was stress-related—like that first doctor told me—I wasn’t going to get better maintaining the stressful lifestyle I was. I booked an Airbnb in Venice Beach, California and planned a trip where I’d only work 40 hours a week—less than half-time for me.

My regular OB/GYN recommended a physical therapist in Santa Monica, so I booked several appointments with her, as well as an acupuncturist, a mind-body therapist, an energy worker, a shaman, and a reiki healer. Ironically, a lot of the money my workaholism made me went toward addressing a problem it probably contributed to. I may have been leaving behind my workaholism, but I couldn’t forego my type-A personality. I’d take my healing as seriously as I’d taken my work.

The day I arrived at my Airbnb, a weight lifted. For the first time in months, I took the entire afternoon and evening off. As I strolled down the boardwalk, I danced and sang to every song I heard. It felt like I was flowing through life rather than pushing against it. And the pressure and bladder pain, for those moments at least, faded.

For the next two weeks, I went on walks and talked to my bladder. “You’re the best bladder in the world,” I told it, “and I’ll buy you all your favorite foods.” I cooked for myself for the first time in years, strictly following the Interstitial Cystitis Network’s dietary guidelines. I stopped drinking the coffee and alcohol I’d relied on to get through the day, which had been irritating my nervous system along with my bladder. I cut out everything spicy, sour, or acidic. After making these changes, the pain faded even more.

With the team of healers I’d assembled, I explored how my lifestyle had contributed to my illness. (The most surprising discovery? My physical therapist told me about how the pressure I’d felt to suck in my stomach scrunched in my bladder.) By the end of my trip, I was only waking up to pee once most nights, and I’d begun to feel happy again.

One night in California, I accidentally clogged the sink in my Airbnb with fat from an oxtail soup I cooked. I kept checking to see if all the gunk was going down, and I couldn’t tell if it was, since it was moving so slowly. Then, I went out with a friend, and when I got back, the sink was empty. I realized that was what my healing was like. I could keep obsessing over my bladder and wondering if it was getting better and depressing myself, or I could distract and enjoy myself while it slowly healed.

One day, I realized it no longer felt like my bladder was full of acid. It didn’t feel entirely normal either, but it was getting there, and I was just so thankful I could function. I’m not 100 percent sure what did the trick, except that my diet played a huge role—the moment I strayed from the IC network’s list, the pain would come back.

One thing was indisputable: Stress reduction was a huge part of my recovery. “Stress increases oxidation—a chemical reaction in cells linked to inflammation—and free radicals (unstable atoms that can break down cells) in the body, and the stress hormone cortisol can contribute to inflammation, Linehan explains. This rings particularly true for me. I believe my IC stemmed in part from years of pushing myself and pushing myself until my sympathetic nervous system was in overdrive. But finally, nearly three months after moving in with my parents, I knew another way of living. I was ready to return to my life.

I feel grateful every time I can go out dancing without having to pee every ten minutes, eat in a restaurant without every dish causing flares, or have sex without pain. I still have days when I feel like shit, but now, instead of pushing myself to work and making myself feel even more shitty, I ask my boyfriend for a hug and I cry. Or I just stare at the ceiling and rest.

I’d always imagined that after I healed from this disease, I’d be reborn and rebuild an entirely new life for myself. Instead, I returned to my old life. The difference is, now I try and see the magic in it all. And when it’s feeling less than magical, I know how to ask for help. That way, my bladder doesn’t have to speak for me.

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