My Journey with Pelvic Pain
I have had vulva pain for half of my life. Tampons at age fourteen were a definite no go. Penetrative sex a few years later wasn’t either. That’s when I really knew something wasn’t right. I had that perfect first boyfriend who I loved and who loved me. I had never been sexually abused and hadn’t experienced any physical trauma. There wasn’t a clear reason for my pain then and now, fifteen years later, I still don’t have one. This is one of the biggest challenges with chronic pelvic pain. The why.
During my undergraduate degree, at nineteen, I was ‘diagnosed’ by my family physician with vulvodynia and dyspareunia. I use quotes because those terms are simply descriptors not underlying causes of the pain. Vulvodynia means vulvar pain without an identifiable cause and dyspareunia means pain with sex. He recommended dilators but the concept of inserting something, when insertion was the cause of pain for me, was mind boggling and I promptly dismissed the suggestion.
During law school, when I was around twenty five, I started seeing a pelvic floor physiotherapist. She more accurately diagnosed me with vaginismus and provoked vestibulodynia (PVD). Vaginismus is the involuntary contraction of muscles around the vagina and PVD is pain at the entrance of the vagina (at the bottom of the ‘U’ as I always previously described it) upon touch. I started using dilators with her in the clinic and at home on my own. Pelvic physiotherapy definitely helped - to a point.
About two years ago, at twenty eight, I started having unprovoked pain. It’s a burning/stinging sensation that happens with urination and also just intermittently throughout the day. Again, no identified cause or reason. I knew I needed further intervention but was unwilling to consider surgical options at my age. So, I dabbled with prescription medications and topical compounds. They also helped - to a point. CBD oil didn’t help and I didn’t think I could function at work if I used THC. I have had MRIs, pelvic ultrasounds and a cystoscopy with hydrodistention (which, from a pain scale I would not recommend). All returning with normal results. I’ve seen a Gynecologist, Urologist, Urogynecologist, Anesthesiologist, Naturopath, and Sex Therapist. Most of them helping - to a point.
I am seriously thankful that nothing life-threatening has been found but it is incredibly frustrating not to know why I experience and live with chronic pelvic pain. It is beyond upsetting that the medical community is so limited in how they can assist. It feels unjust that as a young, working Canadian (without health benefits), I am forced to pay out of pocket for all my medications and paramedical care but don't have the option of paying to see specialists more quickly.
This journey has been long, tiring and lonely. It often feels like my body is betraying me. It makes me angry that my cis-female body experiences pain in the area I feel most feminine.
I don’t yet have a solution for my pain or a medical reason for it, but I have found a bigger reason for myself. I’ve decided that the reason I’m on this journey is to help other women and afab folks with chronic pelvic pain. To be an advocate and a supporter.
For this reason, I’ve decided to openly share my journey through The Pelvic Lab podcast. I created the podcast with the intention of providing education, resources and support that I didn’t have for most of my journey but desperately wish I had. I hope it will also encourage women and afab folks to feel more comfortable and confident speaking about their pelvic pain and more generally about sexual health and sexual pleasure.
I hope that we can continue to build on the feminist movement and all those who came before us by unashamedly using our voices to speak up about our anatomy, our pleasure and our pain.
*not medical advice
*women and afab = Women is inclusive of all people who identify as such.