Today, I bravely open up about a deeply personal journey, sharing my story and the profound shifts my life has undergone over the past five years. For months, I’ve dreaded this moment, knowing the emotional weight of reliving and articulating the silent battles within my world. Yet, the time has come to cast light on a real condition that profoundly affects countless women, rendering everyday life unbearable for many. This is a story of resilience, despair, and ultimately, finding hope amidst chronic pain.
Navigating Life with Vulvodynia: A Personal Chronicle of Resilience
My life irrevocably changed on December 11, 2005. What began as a suspected yeast infection quickly escalated into an unimaginable nightmare. Following treatment with Terazol cream, I experienced a severe allergic reaction, possibly to the cream itself or its latex applicator. The sensation was immediate and horrifying – an intense, searing inferno unlike anything I had ever known. It felt as though I was seated directly on a blowtorch, my most intimate areas doused in battery acid. The agony was so profound it brought me to tears, rendering me utterly incapacitated. Sitting, walking, or finding any comfortable position became impossible. A visit to the doctor offered no solace; prescribed steroids did nothing to quell the relentless burning. A chilling gut feeling told me this was far more serious than a mere allergic reaction. Sadly, my intuition proved correct.
This agonizing ordeal unfolded during the festive Christmas season of 2005. My eldest daughter, Olivia, was just seven, while Bridget was a mere fourteen-month-old baby. Simultaneously, I was working full-time at a demanding public practice accounting firm in Edmonton, AB. The task of simply making it through each workday became an Herculean effort. I found myself frequently retreating to the bathroom, succumbing to quiet tears. My world was cloaked in misery. Desperate for any relief, I brought an ice pack to work, sitting on it throughout the day in a futile attempt to soothe the relentless burning. In those darkest moments, I wished for an end to it all.
The Frustration of Unheard Pain: Battling Medical Dismissal
Perhaps the most devastating aspect of this period was the utter lack of help and understanding from the medical community. Doctors repeatedly dismissed my suffering, insisting that I “looked normal,” my tests were “normal,” and they could find “nothing wrong.” The suggestion that my pain was “all in my head” ignited a fierce anger within me. I wanted to scream. I felt profoundly betrayed by the very system I had always trusted to provide care and relief. Given the intensity of my pain, I believed I should have been hospitalized. Yet, time and again, medical professionals offered no tangible solutions. It was an isolating and infuriating experience.
The constant, intense pain, coupled with the medical indifference, pushed me to the brink. I distinctly recall calling my mother at the end of December, confessing that I wanted to end my life, that I could no longer endure the torment. After three weeks of unrelenting agony and no effective support, I yearned only to escape the pain and reclaim a semblance of normalcy. I couldn’t bear to be in my own body. My mother, recognizing the gravity of my despair, immediately flew from Ontario to Edmonton the very next day. Her presence offered a glimmer of comfort, a reassuring sign of unconditional love and support in my darkest hour.
However, her arrival brought its own set of challenges. I desperately needed to articulate the terror and confusion I felt about my body’s sudden betrayal. One day I was healthy and functioning, the next I was utterly debilitated. Yet, when I tried to express my fears and concerns, she offered unhelpful platitudes like, “Be positive” and “Think positive.” Her words, though well-intentioned, only exacerbated my feelings of isolation and despair. I retreated inward, sealing off my emotions and suffering in silence. Perhaps she simply couldn’t comprehend the depth of her daughter’s pain; I may never truly know.
A Glimmer of Hope: Self-Discovery and a Path Forward
It was at this point, feeling utterly alone and misunderstood, that I decided I had to find my own way out. In a strange twist of fate, I even chose a date to end my suffering. Paradoxically, after setting this date, a peculiar sense of relief washed over me, knowing that the pain would soon cease. I convinced myself I couldn’t endure another month like this. Looking back, it’s astonishing to realize the immense strength I possessed. I navigated those dark depths for five long years. While I am no longer consumed by suicidal thoughts, I can assert with absolute conviction that it was the lowest, darkest period of my entire life. I pray I never again experience such profound despair.
A pivotal moment arrived the day I purchased The V Book by Elizabeth Gunther Stewart from Chapters. As I delved into its pages, particularly the chapter dedicated to Vulvodynia, a profound realization dawned: this was precisely what I had. The relief of finally understanding the “why” – why my body was in such agonizing pain – was immense. More importantly, the book unveiled potential treatment options, offering a much-needed beacon of hope. The very next day, armed with newfound knowledge, I approached my family doctor and requested a prescription for Nortriptyline, a tricyclic antidepressant commonly prescribed for nerve pain. This was the first concrete step towards genuine recovery, a validation of my symptoms that I had desperately sought for so long.
Navigating Treatment: Side Effects and Small Victories
Starting Nortriptyline came with its own set of challenges. The initial side effects were overwhelming; I felt like a zombie, perpetually “stoned” for the first week. The treatment protocol involved slowly increasing my dosage by 10 mg per week, aiming for a total of 150 mg. Yet, even in those early days, a faint glimmer of hope emerged. On the very first day, I experienced brief interruptions in the constant burning, a sign that the medication was offering some relief. For the first time in ages, I was finally able to sleep through the night, a profound blessing given my previous nights of restless worry. The pills induced a deep fatigue, but the ability to truly rest was invaluable.
Despite the ongoing struggles, I continued my job at the accounting firm, though I harbored a deep resentment for the toxic work environment. The presence of two persistent bullies made an already difficult situation unbearable. Thus, when the opportunity arose to relocate to Ontario in June, I embraced it with immense relief. The move meant finally being closer to my family and receiving much-needed support with childcare. My previous attempts to find medical help in Alberta had been utterly fruitless. I had consulted two gynecologists, neither of whom possessed any knowledge of vulvodynia or its treatment. One even mistakenly thought I was describing an “ear infection” when I detailed my condition – a stark reminder of the alarming lack of awareness even among specialists of female anatomy. It was anything but comforting.
A New Province, New Challenges: Work and Medication Muddle
Upon arriving in Ontario, I secured a job at a car dealership, primarily answering phones. This role was a significant departure from my background in accounting. I was accustomed to managing ledgers and numbers, not manning a bustling front desk. Picture me, then, on the loud speaker, paging individuals throughout the dealership to pick up various lines – a truly disorienting experience. Compounding this challenge, I had also just begun another medication for the pain, Gabapentin (Neurontin). A notable side effect of this drug was short-term memory loss. It became so severe that by lunchtime, I often couldn’t recall what I had eaten for breakfast. Trying to learn a completely new, unfamiliar job while grappling with significant cognitive impairment due to medication was, to say the least, not a pretty sight.
Unsurprisingly, the car dealership job didn’t work out. My trainer was a particularly unkind woman who refused to let me take notes during my training. It was an absolute hellish experience. I often wondered how she would fare trying to concentrate with her “v on fire” and her brain feeling like mush. After just four weeks, I was done. Thankfully, another opportunity at a local accounting firm presented itself, and I eagerly began working there.
I distinctly remember making a defiant decision to bring my donut cushion to my new job. These cushions, readily available at pharmacies and typically used for hemorrhoids, proved incredibly effective in alleviating pressure from my excruciatingly sore area. I did my utmost to stay busy and distract myself from the persistent pain, but it remained a constant battle. The bathroom still served as my sanctuary for tears. I even started smoking again, solely to gain an excuse to step outside, away from everyone, to snatch moments of respite. I meticulously counted the hours until the workday’s end, often leaving early, desperate for relief.
The Turning Point: Discovering Pelvic Floor Physiotherapy
A few months into my new accounting job, a ray of hope pierced through the darkness. Through online support groups, I learned about the potential benefits of pelvic floor physical therapy for vulvodynia, with some individuals even reporting complete cures. This sparked a renewed sense of optimism, and I managed to get an appointment with Caroline Allen, a highly recommended pelvic floor physiotherapist in Ottawa. My first visit with Caroline was profoundly uplifting. She conducted her examination and, with reassuring confidence, declared that she could help me. She explained that my pelvic floor muscles were in a severely compromised state, and treating such muscular dysfunction was her specialty. It was the first time a medical professional had offered not just a diagnosis, but a concrete path to recovery.
I began seeing Caroline once a week, a significant commitment involving a three-hour round trip. The sessions were intensive; she worked on my poor, sore muscles, often causing flare-ups afterwards that left me feeling as though I’d been “beat up.” Her treatment encompassed my legs, butt, stomach, and yes, my vagina. It’s a crucial point to understand that physiotherapy for the vagina is a real and incredibly effective treatment, as it is a muscle like any other, capable of dysfunction and requiring targeted rehabilitation.
After approximately four or five months of consistent, dedicated therapy, a miracle occurred: the horrific vaginal burning subsided entirely. While I still experienced other sensations like stinging and stabbing, the agonizing, relentless fire that had consumed my life for so long was finally gone. Caroline Allen, with her expertise and compassionate care, truly saved my life. I was not only improving physically but my spirit was soaring. The journey had been arduous, marked by despair and relentless pain, but I was finally on the path to healing and regaining control of my body and my life.
(To Be Continued tomorrow…)