A Healing Journey Through the Dance of Life
Exactly twenty years ago this month, I went on a date with my first urinary tract infection. She unceremoniously made an appearance several days after losing my virginity. I’ll never forget going to the bathroom and suddenly feeling like I was peeing coal-fired Ginsu knives. Nor the putrid fish odor, the urine streaked with crimson, nor how it worsened for days every time I peed. Most of all, I remember the confusion and shame. I knew exactly what I had done to precipitate this event, but I had never even talked about sex with my parents, and getting treated by my doctor was no less awkward.
Little did I know that this was the start of a decades-long dance with a relentless foe – one that would push me to the brink of despair, force me to question my own body, and ultimately lead me on a transformative journey towards holistic healing. This is the story of how I found resilience and radiance through integrative approaches to dance conditioning, a journey that has not only healed my body but also empowered me to help others along the way.
Uncovering the Layers of Chronic Pain
As the years passed, the bliss of nearly every intimate encounter was marred by pain that would rip through my body and my life. The cycle of intimacy, searing pain, awkward doctor visits, and antibiotics became a nightmarish Groundhog Day that plagued me through most of my sexual relationships.
Feeling so out of control of my body created a dark resentment towards it. I scavenged the internet for every blog post, video, and discussion board related to bladder infections, amassing a graveyard of supplements, each proclaimed as the conventional or natural panacea that eliminated UTIs every time. And every time, the panacea would fail me.
At this stage, I wasn’t aware that I would need a more comprehensive, holistic treatment for my UTIs. As the infections came faster and harder despite my valiant efforts, something else began to go wrong. The antibiotics didn’t work as well, and it would take days and sometimes weeks to get my urinary symptoms under control. I passed through a conveyor belt of urologists, each leaving me further from answers than before.
Discovering Interstitial Cystitis
During one late-night research session, I came across an ad about recurrent urinary symptoms that asked if I had heard of Interstitial Cystitis. A light bulb went off in my head – could there be an actual condition where you have infection symptoms but no infection? Suddenly having a name to put to this purgatory triggered something I hadn’t felt in years: a glimmer of hope.
My urologist swiftly shut this down. “There’s no way you have IC,” he declared. “You’re much too young.” I walked out of his office deflated, but a few months later, a compassionate gynecologist looked at me with compassion and remarked on the tough road I must have traveled. She asked if I’d seen a specialist called a urogynecologist who could test me for Interstitial Cystitis. This was the first time I began to realize something very important about doctors – no one has a monopoly on the truth.
The Road to Diagnosis and Treatment
At my first urogyno appointment, the doctor explained that many of my symptoms were spot on for IC, but she’d need to perform several tests to confirm the diagnosis. This was when I realized that as painful as the illness process can be, the road through holistic treatment for UTI and eventual healing ain’t exactly a walk in the park.
First came the infamous and now-debunked potassium sensitivity test, which involved catheterizing and instilling a potassium chloride solution. The result was akin to having burning acid poured into my already irritated bladder. Then they checked me for pelvic floor dysfunction, involving electric probes placed into each of my three nether orifices. Any sense of dignity disintegrated quickly that day.
But at least I didn’t leave that office empty-handed. The doctor declared me an IC sufferer and prescribed a medication called Elmiron. It was little understood why Elmiron works, but I would likely be on it for life as IC is a progressive condition. To my amazement, the Elmiron appeared to get my urinary symptoms under control, and I was seeing a break in the clouds.
Intimacy Challenges and Pregnancy
But another obstacle emerged from the shadows – my body had created so much fear of sex that I developed vaginismus, a condition where your pelvic floor tightens and spasms with pain during intercourse. Even when I felt confident enough to be intimate, the pain was an even more of a deterrent.
Around this time, a friend told me about the idea of psychosomatic and spiritual traumas manifesting as chronic pain or disease. I began to realize that there was likely an energetic component to this pain. It forced me to ask myself, is my body trying to communicate something? The idea that sex wouldn’t hurt one day was impossible as long as I was with my ex, but the idea that another man would accept my body for its limitations was even more implausible to me.
In a last-ditch attempt to save our marriage, my ex and I flew to St. Lucia for a relationship retreat. We returned home uncoupled, and I was staring down the barrel of navigating the divorcee dating world as a single mom with a mountain of medical debt and a skeleton in her sacred closet.
But then, I met my current partner, who became the sturdiest support system of my second life. And with our deep love and commitment came intimacy – a lot of intimacy. As such, my painful dance with urinary tract infections resurfaced.
Uncovering the Ureaplasma Infection
After being UTI antibiotic-free and working to heal my gut for three years, I had no choice but to take 15 rounds of antibiotics in less than two years. Each time I took antibiotics, I could almost see my gut microbiome disintegrating. I was devastated that this plague had followed me into my new relationship.
One day, I noticed that part of my abdomen strangely rose up even when lying flat on my back. I sent a photo to a close friend who is a holistic doctor, and she asked if I’d ever been checked for endometriosis. After going on yet another research binge, I realized there could be a lot of answers here.
Several months later, just after my 38th birthday, I placed my delicate belly under the knife for the third time. The surgery was a huge success in the surgeon’s eyes, but there was no tissue found on my bladder as suspected. Despite a twinge of disappointment, I still felt a huge relief.
But soon after, we resumed intimacy, and I was hit with two more UTIs in six weeks. That’s when my new functional gynecologist said, “When we’re playing whack-a-mole with infection, when one goes away and another pops up, we ask, who are you angry with?” I commenced an expensive foray into energetic healing, but it didn’t stem the UTI tide on its own.
Upon getting treated for yet another infection, my second urogynecologist mentioned a bacterium called ureaplasma. I dove into the recesses of the internet and found that it is one of the most common sexually-transmitted infections, but because it doesn’t cause obvious symptoms for many, it’s barely on anyone’s radar. We found a cutting-edge urologist specializing in prostatitis, and lo and behold, our suspicions were confirmed – my partner and I both had ureaplasma.
The Search for a Holistic Solution
My partner was able to clear his infection with the first round of antibiotics, but for me, not so much. Two more infections hit in the month after finishing antibiotics. I expressed my concern over what repeated antibiotic usage would do to my gut health, in which I had invested years and a fortune to heal.
Right away, the urologist mentioned two UTI treatments I’d never heard of that weren’t yet available in the US – Uromune, a UTI vaccine, and an instillation cocktail of hyaluronic acid and chondroitin called iAluril, which touted the ability to recoat the bladder lining with its inherent GAG-layer components.
A year after administering these UTI medications, my infections were still a regular unwelcome guest in my home. Hope was quickly draining from my otherwise bottomless well of endurance. That’s when I worked with a new holistic doctor who used Applied Kinesiology or muscle strength testing to confirm my diagnoses and treat them with a specific plan.
At first, I experienced detox symptoms, but slowly, I began to feel some of the full-body symptoms abate. And this time, no UTIs after intimacy. UTI-free days turned into weeks, and I was elated to be having regular intimacy again. For four whole months.
The Biofilm Breakthrough
But it wasn’t to last. Several days after a moment of blissful ignorance during an intimate encounter, I awoke with that familiar building pressure. But what made this one different was how fast it traveled to my back. Not in twenty years and who-knows-how many bouts had it become this severe.
As I waited in the ER, I Googled “UTI test false negative” and came across an article on this very website called “Why Your UTI Test May Be Negative Even When You Have Symptoms.” This article was an exposé of the worldwide epidemic of false negative urine tests, and it confirmed that the bladder isn’t sterile – there are hundreds of bacteria in normal bladders alone. Then I saw a word I had heard before but never with regard to UTIs: Biofilm.
In layman’s terms, biofilms are like protective apartment building structures that form around bacteria, viruses, and fungi that have successfully evaded antibiotics and attached to the bladder lining. Repeated antibiotic use doesn’t penetrate biofilms and only creates more orphan bacteria to get adopted by the biofilm. This shadowy puzzle piece that had floated just beyond my grasp was beginning to coalesce into a cohesive picture.
Finding Hope and Empowerment
The next morning, we made an appointment with the functionally-oriented nurse practitioner listed on this site. As my incredible partner peppered her staff with insightful questions, they replied with remarkable expertise and compassion. I knew we were onto something.
This practitioner demonstrated jaw-dropping knowledge, like how a genetic mutation may affect how I coagulate blood and produce resistant biofilms, or that 90% of her patients also have a tick-borne disease, and that vector-borne diseases play a huge role in biofilm. She ordered a battery of urine, vaginal, and blood tests for me and my partner using advanced Next Generation Sequencing that would finally find the answers we were seeking.
And yet, I still cautiously hold my optimism at an arm’s length. Even Ruth admits that it’s hard to understand the connection between biofilms and my sex-related UTIs. This means we simply don’t know enough yet to ring the victory bell. But it feels incredible to celebrate the 20-year anniversary of my relationship with UTIs with a new general in my camp and a concrete plan to walk away from their reign of pain.
As long as there’s always one more option, one more resource, one more door to open, hope lives. And you never know – you can find hope in as hopeless a place as a chilly ER at 2 a.m. on a Tuesday night. And since you’re here, it appears that hope has already found you. Welcome to the journey.
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