Living with Vulvodynia (pt 2)
“Once you have a baby, it will get better!”
“Have you considered psychological support?”
“Wow, your partner is wonderful to put up with that.”
“I really can’t explain why you would be experiencing this pain.”
“This really shouldn’t hurt…”
I truly feel like I have heard it all. As someone with pelvic pain, not only am I fighting to be believed, but a layer of shame seems to exist over every interaction I have about my experience.
In 2018, I was diagnosed with vestibular vulvodynia and pelvic floor dysfunction. Leaving the hospital after that appointment, I felt some hope. Someone had finally believed me. Someone had told me that no, the pain isn’t normal and isn’t something I should have to accept. I really felt like a weight had been lifted.
I wish I could say that was the end of my journey, but in a lot of ways, it still feels like the beginning. I have had burning, tearing, itching, sharp pain in the pelvic area since I can remember. The first time I really remember feeling it acutely was when I was 12. I was getting ready to go to a pool party with my friends, and I happened to get my period that morning. After attempting and being unable to use a tampon for an hour that morning, I sat on the side of the pool that day, watching my friends.
Since then, I have gone through countless boxes of tampons, trying to find the right size, position, or method to make using one comfortable. I unfortunately never got there. When I turned 15, I was seen by a pediatric gynaecologist who told me I needed a hymenectomy. This, they said, would clear the obstruction I felt when trying to use a tampon. I underwent the procedure. I can’t say for sure if it helped, but I can say the burning, shooting pain did not stop.
Unfortunately, there was no real follow up or exam for my pain. I began to operate under the assumption that this was a common feeling, and that I was making a big deal out of a “normal” experience. I listened to stories of my friends’ sexual experiences for years, being terrified of when it would be my turn. To add to this, my sexual education at school was rooted in an abstinence-only belief system. Not only was I afraid of the physical impacts of sexual experiences, but I had a layer of shame to work through as a result of that system. Aside from abstinence, our curriculum did very little to focus on sexual health and wellbeing. We did not discuss sex for pleasure, and in fact, sex was very much something that women (or in this case, girls) had to be aware of, and gatekeep.
My feelings around my body and my sexuality were very complex in my late teens. I knew abstinence only education was problematic. I found solace in sex positive feminism online, and developed an intellectual interest in sexuality theory, queer theory, and the history of sexuality and gender. This made its way into my academic life, and I eventually pursued a Master’s Degree in Gender Studies, where I worked in queer theory whenever I had the chance.
Despite finding support in this area of my life, I maintained a significant fear of physical intimacy. I knew penetrative sex would hurt. The times I did attempt it, I felt I was having to hide away a piece of myself. Invisible pain is hard that way. While the pain itself was challenging, knowing that my pain was impacting my capacity for intimacy was the hardest part for me to reconcile with. And yet, at the same time, I feel I was still in some amount of denial. I was repeatedly told by health care professionals and folks I confided in that “sex hurts the first few times.” Because I was rarely engaging in penetrative sex, I figured it made sense that it would hurt until I did it more regularly.
Sometime in 2017, I had a very painful routine pelvic exam. After explaining to my doctor the pain I was experiencing, she referred me to a specialist. Although there was a long waitlist, I am glad someone finally listened. That brings us to 2018. Since then, I have been seeing a pelvic floor physiotherapist. I have been put on, and taken off several medications in an attempt to decrease the nerve pain I am experiencing. I have cried a lot of tears, and seen a lot of different specialists.
I’m lucky to live somewhere with access to health care, but a fragmented medical system has been a major barrier. I often feel I’m telling the same story, over and over again, to each practitioner I see. Vulvodynia also does not always have a known cause. In my case, I am still searching for the root cause of my pain, and it can feel hopeless. A number of medical professionals and specialists have closed my file, because they could find “nothing wrong with me.” It has been suggested to me that “the pain is psychological.” It’s been a frustrating experience.
It would not be fair to blame any one practitioner. In fact, I know many have tried to help. In a medical system that historically has not valued women and gender diverse folks’ bodies and experiences, it shouldn’t be shocking that vulva pain or vaginal health remains somewhat a mystery. Systemically, we need significant change. It took me over 10 years to get a doctor to listen to my pain and take me seriously. I might be much further in my journey if I had been followed up with at 15, or had a doctor tell me that pelvic exams and pap smears should not be excruciating.
When I reflect on the past 12 years, it is easy for me to feel angry. I feel that I was failed by the medical system. I feel I was failed in my sexual education at school. I really feel like I was failed by a culture that refuses to take “women’s issues” seriously. I wish I could say something uplifting, but the truth is that I’m tired. I’m tired of being sent from specialist to specialist, explaining the pain I experience, and being told there’s nothing biologically wrong. I’m tired of my pain impacting physical intimacy with my partner, who I love very much. I’m tired of “the look” when I tell people about this pain (the pitying look, usually followed by “wow, I can’t imagine dealing with that.”). Sometimes I break down. I think it’s important to acknowledge that we don’t always have to accept what is happening to our bodies. It is okay to be angry.
Since getting diagnosed, I have tried to keep up with recommended treatments. I see a pelvic floor physiotherapist every two weeks. I use dilators to help with vaginismus, and have made significant progress with my pelvic floor muscles. Despite the hope that this would improve nerve pain, that remains largely unchanged. I have found some relief in alternative medicine, such as massage therapy and osteopathy. I continue to work on my mental health with a qualified professional. I wish this was the part where I could say that I am resilient and committed to fighting and finding a solution for my pain. The truth is that I have had to work to establish a better relationship with the pain, and work to accept that there might not be a perfect outcome.
I have a lot of unearned privilege. I am a white, cisgender woman. I have a stable job with good health benefits, which help me to afford some of the treatments I find helpful. I am in a loving and supportive relationship. I have support people, including my family and my friends who believe me and who support me wherever they can. I have access to a car, and can get myself to and from appointments. Not everybody has these privileges, and it is important that I acknowledge that I am well positioned to get some of the help I need.
I do have hope. I have hope for a better medical system, that takes women and gender diverse folks’ pain more seriously. I have hope that the health care system will be more responsive to the holistic health needs of patients. I have a lot of wonderful health care practitioners in my corner, without the resources needed to be more holistic. I hope that will change.