Seven days after recording a self-hypnosis script, I was able to go out of the house on my own. Pain hadn’t disappeared, but there was now a light at the end of the tunnel.
I was curious. Self-hypnosis hadn’t worked previously, and this script had nothing to do with pain. What had made the difference?
I dove into pain science and reflected on people deemed “hopeless cases” I’d coached in the past. I began volunteering to help others who had long term health problems.
I now responded with self-compassion to negative thoughts, rather than impatience and frustration. I realised the script had been about compassion for others and myself, and focusing on doing things that were meaningful to me.
A year later, I began training in Cognitive Hypnotherapy, a framework underpinned by evolutionary biology and neuroscience.
I worked through my own trauma, reprocessing memories connected to sadness, shame, anger and out-of-date beliefs that had shown up as tension and anger throughout my life. A pattern I recognise now: adrenaline - cortisol - tension - health problems - pain.
Pain dissipated, and I slowly tapered medication.
I qualified and started as a generalist, wanting more depth before helping people with pain. I trained further in pain science with the Neuro-Orthopaedic Institute, and attended monthly meetings with pain scientists.
I noticed overlapping principles across cognitive hypnotherapy, pain science and best practice care. The most important: Treat the person, not the body part.
There is little correlation between pain severity and tissue damage. What else is happening in a person’s life, support, beliefs about pain, meaningful things in their life pain prevents them from enjoying, anticipation of pain, nocebic messages from clinicians, emotions such as fear, shame, guilt, can all amplify symptoms, as can some comorbidities, and past trauma.
That doesn’t mean pain is “all in the head.” Humans are complex and unique.
The biopsychosocial model: biology, psychology and social context are constantly interacting.
Just treating a body part misses the bigger picture of what else may be contributing.
I tentatively began working with people living with vulval pain. Unsurprisingly, when a person living with persisting pain feels like they’re not being heard or supported, a cycle of hopelessness, helplessness, anxiety or depression can fuel worse pain.
I was told by a GP “Just get married and have children and you’ll be fine” and a sex therapist told me “You’re avoiding finding a boyfriend.” Sex was not my priority, but this was the supposed care pathway.
Even when two people have the same diagnosis of vulvodynia, treatment plans need to be individualised, taking into account the factors that amplify their pain and working toward a life that’s meaningful to them. A good outcome-focused question:
“What’s the first small thing you’d like to be able to start doing?”
The nervous system can be primed for sensitivity over time during periods of stress and more adrenaline. A question to uncover key factors:
“What was going on in your life in the 1-2 years before the pain started?”
For some there’s something obvious, like the death of someone close, but more often it’s prolonged background stress or overdoing things.
In 2013, I presented at the Vulval Pain Society (VPS) conference for the first time, and began speaking at more clinical events, continuing to train in cognitive, mindfulness-based, somatic and trauma-informed approaches, including advanced EMDR, and trainings for pelvic physiotherapists.
I had not forgotten the promise made in that dark tunnel: if I found a way out, I would retrain and help other people.
Even now, for those who persist, diagnosis takes two years on average. Half give up, and many self-diagnose.
In 2019, I became a Trustee of the VPS, organising webinars and livestreams with clinicians and researchers. Our YouTube channel now has more than 50 videos for patients and clinicians.
After a period of stress in 2016, every pain I’d ever had returned at once - vulvodynia, sciatica, back pain, sore joints, and migraine. I’d take one step then breathe for a bit before taking the next. But this time, I had knowledge, therefore the unshakeable belief that I’d recover within 2 weeks and possibly sooner. I took myself through a deep therapy session and went to sleep…
The next day, I could walk fine.
48 hours later, everything had eased and I could run!
This may seem like a miracle but really, I knew pain science plus what I had to do and knowledge meant power.
My journey out of the dark vulvodynia tunnel had taught me determination, patience, self-compassion, how to advocate, and how patients and clinicians must work better collaboratively.
I now divide my time - guiding people with chronic pain through the tunnel with tailored programs, and coaching multidisciplinary clinicians in ethical, pain-science-based, trauma-informed care, therapeutic language, addressing imposter syndrome and burnout. How we show up as clinicians matters.
There is no one-size-fits-all or quick fix but my journey was needlessly long.
Multidisciplinary care is best practice, addressing the interconnected biopsychosocial elements. My personalised path out was self-hypnosis, cognitive hypnotherapy (the big piece), physiotherapy, yoga, pain science, trauma work, and time.
“Out” looks different for everyone: full resolution for some, less frequent or decreased pain for others. Regaining a sense of agency must be the focus so people can start doing more of what matters to them, rather than pain being in charge.
Despite my knowledge, I am still amazed by neuroplasticity and bioplasticity - the capacity for change.
The journey has taught me so much, and it is a privilege to now guide others. I am profoundly differently now, in a good way. The way I practise, how I advocate, how I guide clinicians to facilitate change rather than hinder it - the promise I made in that dark tunnel has shaped the life I live now, and for that I am forever grateful.
