This article is part of Health's new series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
If my life had a theme song, it would be the one where Alicia Keys belts, “This girl is on fire!” But I wasn’t on fire—my vagina was.
For most of last year, that song played in my head as I visited countless doctors searching for a diagnosis that would explain the chronic burning and irritating pain that took over my pelvic area. Month after month, I found myself in another dull, brightly lit room with my back against the cold medical exam table, my feet locked in stirrups.
I knew the drill. The gynecologist would examine me and tell me whether or not I had an infection. And depending on the answer, they'd either prescribe me a cocktail of medications or simply shrug their shoulders and wish me the best. Neither helped.
I started experiencing these symptoms in February 2018. They were similar to the signs of a urinary tract infection—except it wasn’t a UTI. Instead, nearly every doctor I’d seen that year diagnosed me with a yeast or bacterial infection. Yet no antibiotic or antifungal prescription made me feel better, even after doctors would eventually tell me the infection was gone. With each round of meds, the fire only grew stronger.
It took a year of doctor visits, sleepless nights, the breakup of a promising relationship, and my own dogged persistence to find out why I was in constant pain below the belt. But getting the right diagnosis took way longer than it had to. In that fiery year, my work, personal life, and most importantly, my quality of life were all in jeopardy as I struggled for answers.
The burning and irritation begins
Everything was pretty great before my symptoms began. I was a busy reporter and cat mom in my mid-20s living in South Florida. I enjoyed travel, yoga, and time spent with family and friends. I took good care of my health, eating right and exercising (okay, sometimes). In November 2017, I started dating a nice guy who soon became my boyfriend. We fell in love. He was my first. I wanted to ride this high forever—but life, of course, had other plans.
Early that February, I paid a visit to the gyno after I'd started feeling a persistent burning sensation inside and around my vagina. The pain was raw and intense, and I could feel it from deep in my abdomen all the way to my vulva. In my early 20s, I'd experienced irritation and pain in my vagina, which a doctor told me was caused by tight pelvic floor muscles (the muscles that support the bladder, uterus, rectum, and vagina). But this pain was just so much worse, especially when I had sex with my boyfriend.
The gyno diagnosed me with bacterial vaginosis. It's a common vaginal infection, and the remedy was simple, my doctor said. All I had to do was take an antibiotic for several days, and I’d be cured.
And I was cured—for a short while, at least. The pain and burning came back soon after I had an IUD inserted inside my uterus. A week later, I went back to my doctor with the same symptoms. She prescribed me another round of antibiotics for another bacterial infection. I still felt the burn. I had the IUD taken out after a month. I thought that would help, but I was still on fire. Another round of meds later, I developed a yeast infection—a not uncommon side effect of antibiotics.
With no cure or even an explanation as to why I was having these recurrent infections, I stopped seeing my doctor. She couldn't help me, and I felt so helpless. Being the inquisitive reporter I am, I took to Google to seek help. But nearly every symptom led to cancer. Gulp. I knew I needed a second opinion.
Misdiagnosed by doctor after doctor
Four months, two gynecologists, and one urogynecologist (a doctor who specializes in bladder conditions for women) later, I still felt constant pain and irritation in my vagina, vulva, and pelvis. The burning would be so bad, sometimes I couldn’t sleep at night or go to work the next morning. One day, I couldn’t even pee. The urge was there, but nothing came out. I thought for sure I had a UTI, but a visit to a nearby urgent care center killed that idea.
“You’re fine,” that doctor said. God bless my boyfriend. He bought me ice cream the next day after accompanying me to urgent care. Cookie dough can go a long way, but it didn't get rid of the pain, unfortunately. Almost every doctor I saw that summer would diagnose me with an infection, either yeast or bacterial. I took antibiotics and antifungal meds for months. I'd stop seeing one doctor and move on to the next when it became clear they couldn’t help me and didn't know what was wrong.
I decided to take my health into my own hands, (thanks Google), by following every rule about preventing a vaginal infection. I’d change out of my gym clothes immediately after working out or avoid sweating altogether. I wore cotton underwear, drank copious amounts of water, and ate well. I also avoided sex with my boyfriend during my treatments. And honestly, it felt way too raw down there to even enjoy sex anyway. If we did have sex, my vagina would feel like an inferno for days after.
The cycle continues
Frustrated, I thought back to 2014, when I was in my early 20s. I had experienced pelvic pain and saw a doctor to find out why. He told me it stemmed from tense pelvic floor muscles, and he referred me to a women’s health physical therapist, Rivka Friedman, who I saw for two months.
Friedman evaluated my pelvic floor and worked to stretch and relax the muscles externally and internally, sometimes inserting her fingers inside me to loosen the tense muscles. On off days she recommended I use a dilator once every day for 10 minutes, and pelvic floor stretches to accompany the dilator therapy. She stressed the importance of relaxation; deep breathing, yoga, or whatever helped me de-stress. Later that year, I felt relief from my symptoms and stopped seeing her.
Now, with the symptoms way more intense and sex making them even worse, I started going to a local physical therapist for pelvic floor therapy. I couldn't go back to Friedman because her office was two hours from where I was living at the time. I hoped that a therapist closer to me could help me find the same relief. Instead, my symptoms actually got worse. This therapist incorporated kegel exercises into my therapy. Kegel exercises are designed to strengthen weak muscles; I needed to relax my tense muscles. When I vocalized this to her, she didn’t listen. That was the end of that.
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I started wondering if maybe the problem had nothing to do with my pelvic floor muscles. So I decided to see a doctor who specializes in vaginal skin conditions and infections. His office didn’t accept health insurance and was located nearly three hours from where I lived, but I was desperate.
That summer was the worst summer of my life. At first, the new doctor made me feel hopeful. He said he could cure me. But instead of getting to the root cause of my pain, he diagnosed me with a yeast infection. According to him, it was a stubborn strain that would require many meds to get rid of. Months later, he told me it was gone—except I didn’t feel any better and actually developed bacterial vaginosis. Ugh, the endless cycle.
Thank god for my family, especially my mom and stepdad, and my friends, who supported me emotionally and financially during this time. It was a huge help, because by now my relationship with my boyfriend was deteriorating. He wanted so desperately to fix the situation, but there was nothing he could do, and that frustrated him. All I wanted was his support, but the more I asked for it, the more he pulled away.
A gut feeling leads to an answer
So I continued living with the pain. It’s so easy to do so after nearly a year of it. Once you’re dealing with a chronic condition, you forget what it's like to feel normal. I tried focusing on my career and my boyfriend, hoping and praying that somehow the pain would disappear.
But it didn’t. In November 2018, my boyfriend and I ended our year-long relationship. It was heartbreaking; it felt like the end of the world. I remember us standing in the small kitchen of my apartment before Thanksgiving. He told me he couldn’t do us anymore. He couldn’t do us anymore? As if I was somehow in control of the situation and he was the one physically suffering? He could just as easily walk away and be okay. I opened the door, and he did just that.
I thought my heart was completely shattered until I lost my grandfather the next month. That was one of the worst moments of my young adult life. He was my second dad, my cheerleader, my mentor. So on New Year’s Eve, I made a promise to my grandfather and myself that 2019 was the year I’d get an answer.
Getting the right treatment
I got to where I am now by following my intuition. Deep down, I knew what I was feeling had to be related to my pelvic floor condition from years earlier. Once I came to that realization, I made a big decision.
After years of living on my own, I moved back in with my mom, who lives near the practice Rivka Friedman was affiliated with. Remember the therapist from years ago? I began going to her again for treatment, and I continue to see her twice a week for physical therapy. She inserts her fingers inside my vagina to relax the tense muscles and also works inside my pelvic area to ease the muscles around my vulva, inner thighs, and abdomen. It's been nearly two months since I started therapy with her again, and every day I feel better and better. Currently I'd say I'm 70% back to normal.
A couple of weeks ago, I also received an official diagnosis: pelvic floor dysfunction. This came from another doctor, who my mom found online after much research. He specializes in pelvic floor disorders. He told me that my specific condition, tense pelvic floor muscles, could make me more susceptible to infections and lead to issues with intimacy.
What causes some women to have tense pelvic floor muscles? Stress seems to be one possibility. Some people tense their shoulder muscles when they're under stress, while others tense their pelvic floor. I’m 100% sure I fall under that category. It can become a habit done automatically without even realizing it. Friedman is helping me retrain my muscles so they can relax into their normal state.
If a woman has symptoms similar to mine, my advice is to see the right type of doctor. An ob-gyn is great for pregnant women and to treat infections, but once you rule this out and you still feel pain, see a urogynecologist and/or a pelvic floor specialist. Also, trust your instincts. If a doctor isn’t helping you, you need a second opinion. Do your own research. It’s not all in your head.
Now I’m on a treatment plan to manage my symptoms so that one day I can feel normal down there again. Between physical therapy, Valium vaginal suppositories, and relaxation techniques like meditation and yoga, I’m on the road to recovery. I wouldn’t be where I am today if I'd had lost hope. Alicia Keys' song still runs through my head, but now I’m the one belting “This girl is on fire!” for all the right reasons.