UOL: Treating Vulvodynia— What Didn’t Work

Kelsey Fay is an internal event planner and coordinator at a local video game company in Edmonton, AB, Canada. She is passionate and vocal about her support of underrepresented and minority groups. She strives to continue learning, growing, and educating herself in areas where she can help spread understanding and ultimately compassion in the world.

Today Kelsey shares Part One of her journey in healing vulvodynia.

Author’s note: I use ‘woman/women’ and she/her pronouns.

From a first-hand perspective, this story is my experience as a cis-gendered woman. By no means do I want to imply that women must have certain body parts, appearances, or biological function. Gender is a spectrum.

The first time I felt intense pain during penis in vagina or PIV sex, I was on a camping trip with my boyfriend the summer after graduation in 2012, while having a sexy little tent shindig.

I thought it was a yeast infection, so I went into my small-town clinic and got some meds. But the pain just continued to get worse, not better. So two weeks later, I was back in the clinic, getting a full STI screening. The doctor decided to ‘proactively’ treat me for a variety of STIs without waiting for results, including antibiotics which—shocker—inevitably led to an additional yeast infection. It was more medication and no relief.

This was only exacerbated by my toxic relationship. My boyfriend was manipulative and emotionally abusive. I was just 17 years old. He was calling me an ‘unfaithful slut’ because something was wrong with me, and ‘it was clearly my own fault’.

So I continued having incredibly painful sex with my abusive boyfriend, trying to prove my loyalty.

‘Sex’ that would leave me sore, raw, often with sores across my vulva. ‘Sex’ that would leave me dreading the simple act of sitting down in my chair or going for a walk.

The clinic physician was pumping me full of round after round of medication because I was only 17; clearly, he believed I couldn’t be trusted to know my own body or have ownership of my sexual health. I had to be lying about my sexual partners.

Even at 17, I knew something was wrong.

I was honest about my sexual experience. Yet I was being called a liar, both directly and indirectly. I was hearing loud and clear from every angle that as a woman, never mind a young woman, I couldn’t be trusted to know my body, have autonomy & ownership of my health or advocate for myself.

As I moved onto university the following year, I returned to a new clinic. I continued experiencing everything from hypersensitivity, vulvar fissures, intense labia swelling, burning, increased yeast infections, and the previously mentioned sores that I can only compare to something like having vulva canker sores.

It seemed so random. Sometimes I would be fine for weeks or even months. And then suddenly I would have what I’ve since learned to call ‘flare ups’ that would leave me sitting on ice packs and dreading all movement.

My new university doctor immediately sent me to a gynecologist for evaluation. Progress! The gynecologist talked with me for 15-20 minutes, examined me, and immediately had a diagnosis for me: vulvodynia.

“Vulvodynia, simply put, is chronic vulvar pain without an identifiable cause…some women experience pain in only one area of the vulva, while others experience pain in multiple areas.” According to the National Vulvodynia Association (NVA), “The most commonly reported symptom is burning, but women’s descriptions of the pain vary. One woman reported her pain felt like “acid being poured on my skin,” while another described it as “constant knife-like pain.”

More progress! My pain had a name. Surely this meant that it could be treated. Oh, boy was I ever wrong.

Research out of the NVA tells us, “Health care providers who treat vulvodynia do not have evidence-based guidelines to help them select the most appropriate treatment for each patient. Although there are 30 possible treatments to relieve symptoms, there is little, if any, controlled research on most of them. Thus, the burden is on the patient to determine the efficacy of each treatment, a trial and error process that often takes several years.”
Ok, so maybe not. Let the trial and error begin.

First, the doctor prescribed me lidocaine gel; a topical numbing agent (it’s the thing you often find in toothache treatments). I was directed to apply 15 minutes prior to intercourse, and voilà: penetration without pain!

Let me tell you my thoughts on treating a women’s sexual health issue by numbing them. It’s horrific and inhumane. I don’t know who decided this was a good idea, but they should be fired. No, seriously.

So you numb the area, removing all pain. Cool. Except you also remove all pleasure, because you’re numb. I suppose if the only intent was so that women could be a pleasure sheath for a penis, that would be fine.

But we can all unanimously agree that women are taking back and owning their pleasure, so that is certainly not the intent.

I feel like it’s relevant for you to know at this point that my gynecologist was a man and numbing me so I could ‘tolerate’ sex was his first choice in treatment. Make of that information what you will.

The second issue with numbing as a treatment option is that you don’t have the ability to tell if you’re being injured. Like going to the dentist; numbing allows them to work without causing you immediate pain. But when the numbing comes off the pain, swelling and wounds are still there. So my sex would be pain (and pleasure) free, but I couldn’t feel if I was micro-tearing, swelling, or developing sores. The aftermath being my symptoms were 10x worse and lasted over a week. Perfect. Hard nope on that.

Onto the next treatment which was a form of antidepressant with the intended side effect of nerve numbing. You already know my thoughts on numbing, but I also had a prior history of mental illness which my gynecologist failed to consider or monitor. After six weeks of constantly feeling ‘off’ with no pain relief, I gave up on treatment number two.

I felt so alone and absolutely hopeless; I was frustrated and in immense pain with no light at the end of the tunnel. When society tells you that your value as a young woman is in being sexually desirable and available to your male counterparts, dealing with a vulvodynia diagnosis is a one-way ticket to absorbing the internal belief that you are worthless, undesirable, and broken. Vulvodynia wasn’t just impacting my physical health. It was also impacting my relationships, emotional wellness, mental health, and self-worth.

I wish I could tell you at this point that I had a mindset shift and proceeded with both self-compassion and self-advocacy. But instead, I continued forward in frustration and pain. I had started to understand my body better, and in turn, began understanding what was triggering my worst flare-ups.

But eventually, because of the state of my self-worth, I still settled into an abusive and radically conservative marriage with a man who—at the time—I felt loved me despite my ‘brokenness’. Sex was something that I did as a wife to ‘serve and take care of my husband’.

Physically, we never ‘fit’ together well, which meant that sex was always painful for me. And this was the human I was supposed to be ‘sexually bound’ to forever. My 3rd ‘treatment’ during marriage was excessive clitoral stimulation during sex as a coping mechanism to numb out the pain. Which worked about as well as any other form of numbing had.

After 4 years of marriage, I ended it for a variety of reasons, including our sexual relationship. I left a partner who held a worldview about my sexuality that didn’t serve, heal or benefit me.

When I left I opened the door to understanding my body and its trauma along with my sexuality, sensuality, and a deepening knowledge of feminine health from a more whole and complete perspective. I would end up spending over a year, after my marriage ended, making peace with and becoming friends with my clitoris again.

artwork: victor yrigoyen

Kelsey is happily divorced at 26, after 4.5 years of marriage, and believes in stating so proudly, to minimize the stigma around divorce. Kelsey now practices ethical non-monogamy and is currently enjoying thriving relationships with multiple partners.

Unmentionables Out Loud is a monthly series centered around our mission to break the silence surrounding taboo topics. We’ll share your real and raw experiences— the things we still don’t talk about enough to open our minds and hearts to greater knowledge and empathy. We’re passing the mic to YOU. Let’s get loud.