Ten years is a long time, and for most people it will be marked by milestones: careers built, relationships formed, memories made, and new chapters begun.
For me, those years were measured in pain levels, cancelled plans, missed opportunities, and days when my bedroom became both my refuge and my prison.
My journey didn’t begin with a single dramatic moment when everything changed. Instead, what started as discomfort and a burning sensation, was treated as thrush, but the treatments seemed to make things worse.
It took a year before I heard the word “vulvodynia” for the first time, and that was only because I kept advocating for myself. I knew my body. I knew something wasn’t right.
I was in my early twenties, studying law, and trying to understand how this could be happening to me. At the time, there was a perception that vulvodynia mainly affected postmenopausal women. That didn’t match my reality, and I felt helpless with the uncertainty and lack of answers.
I dropped out of law school and started an easy part-time job because I couldn’t function as I once had.
I started on Amitriptyline, which made me feel disconnected, my world fuzzier. As the dosage increased, the drowsiness worsened. A few years later, I moved to the less sedating Nortriptyline, eventually increasing to 95mg with zero relief.
Occasional appointments with no answers. The pain worsened.
One consultation impacted me hard. A leading consultant at the time suggested reducing my work hours, or stopping completely and taking bedrest. She also said, “This is your life from now” and “You do realise you’re not going to see me again, don’t you?”
Now, I understand how these messages can become part of the illness experience, adding to hopelessness. The nocebo effect - the negative impact a clinician’s words or demeanour can have on symptoms and recovery.
I eventually stopped work and started taking that “bed rest.”
The pain became all-consuming.
I tracked pain levels daily because I had been told it might help. The pattern was 8, 9, or 10 out of 10, keeping my focus on the severity and ramping things up further. There were moments when the intensity became so overwhelming that I would black out.
The hardest part was not only the physical pain. It was the isolation.
People around me cared. But there’s a taboo around pelvic pain. Plus, pain that cannot be seen is difficult for others to truly understand. Even healthcare encounters sometimes left me feeling more alone.
I wore a mask of pretending I was ok (we can get so good at that right, when living with persisting pain)!
For years, I followed the advice I had been given. I rested. I avoided things that might make the pain worse. I spent so much time in bed because I believed I was protecting myself. I was referred to a sex therapist who didn’t seem to understand that sex was the last thing on my mind. I just wanted the pain to disappear.
I went through some dark times.
Eventually, something inside me shifted.
I reached a point where I decided enough was enough. I could not spend my entire life waiting for someone else to find the answers or give me permission to live again.
I tried diets, therapies, techniques, and ideas that promised relief. I spent energy and money, but gained nothing.
Almost 10 years in, came a turning point from an unexpected place.
A friend suggested self-hypnosis. At first, I dismissed it. I’d tried it before and it felt like a silly fad.
However, this time I found a script focused on values and self-compassion, not pain. I recorded myself reading it in what I thought was a ridiculous hypnotic tone of voice! I listened each night before sleep.
Seven days later, I went outside on my own.
To some people, that may sound like a small thing. For me, it was enormous.
A new routine began once or twice a week. With Google still in its infancy, I would slowly walk to the library to access the internet, explore what else I could do with my life, and find answers.
The pain had not magically disappeared. My body had not suddenly returned to how it was before. But something had changed. I had started to reconnect with myself and see that my life could become bigger than my pain.
It was the beginning of my recovery journey. No instant cure or simple solution.
Chronic pain is complex, and every person’s experience is different. But what changed for me was my relationship with pain. I began to recognise that although pain was part of my story at the time, it did not have to be the whole story.
When I was in the depths of that dark tunnel, I made a promise. When I found a way out, I would retrain, learn as much as I could about pain, and start helping others out of the tunnel.
Part two gets into the next part of my recovery and what followed.
