My Vaginismus Journey: a story that needed to be told

My Journey Begins: Realizing I'm Not Alone

My path to a diagnosis of vaginismus was like what many others with the condition experience – crooked and confusing with a few wrong turns along the way. It began when I first attempted to have penetrative sex. I knew the first time was supposed to hurt, but the sensation of my vagina being ripped open while simultaneously on fire seemed a bit excessive. When that pain never lessened, no matter how many times I tried, I knew something was up. I told my pediatrician, who upon hearing I was sexually active insisted I needed to be tested for STIs and forcibly stuck a speculum inside me, causing the same burning, searing pain. When I expressed this, tearful and squirming, she just said dismissively, “Oh yeah, this should feel a bit uncomfortable.”

Next, I went to my mom’s gynecologist who suggested “more foreplay” and “different positions.” Neither worked, and felt like pretty meager explanations for the level of pain I was experiencing. This wasn’t about lack of arousal or lubrication. It was something bigger, but I was beginning to think it was just something wrong with my anatomy, some rare issue that I had that no one else on the planet had experienced or was aware of. 

I began to do a lot of research on the internet, endlessly googling “excruciating pain with sex.” Eventually, I came across some descriptions of vaginismus and the symptoms aligned. I figured that was what I had, and began searching for a doctor who was familiar with the condition and could treat it. Finally, I found Maze, where I was officially diagnosed with vaginismus and began dilator therapy shortly after.

During one of my appointments, my doctor at Maze told me how common vaginismus is. I learned that it is estimated to affect 1 in 10 people with vaginas – most likely even more, but so many cases go unreported that it’s hard to know for sure. I was shocked. Why wasn’t anyone talking about this? If it was so common, how come every doctor I’d seen had seemed unaware of its existence? Why was information so sparse that I’d believed for so long the condition was unique to me? I expressed to my doctors that I wanted to speak out about it to spread awareness. They said they were contacted relatively often by journalists and publications looking to write articles on the subject who wanted to interview patients, but most were too embarrassed to speak publicly about their condition. I offered to be interviewed, and soon I was featured in articles in Cosmo and Self sharing my story.

I Was Inspired to Create My Film

After the articles were published, I began to receive emails from women all over the world who were also experiencing vaginismus. One was from a 15-year-old girl, seeking advice for telling her mom so she could get treated. Another was from a 35-year-old woman who’d never had penetrative sex with her husband and was starting to panic that she’d never have children. One was from a college freshman who told me her way of coping with the pain of penetration was to get so drunk she couldn’t feel it (something I did in my early college years too – and certainly alarming, because at that level of inebriation one cannot give proper consent). Another young woman from Czechia asked if I thought dilation could be done without the help of doctors, as professional treatment was unavailable in her part of the country.

Receiving these messages inspired me – they proved to me that this was a story worth sharing. I’m a filmmaker and that’s what I aim to do with my films – tell stories that I feel deserve to be told. It was a vulnerable subject to explore, but in writing the script, I felt empowered. In particular, I wanted to portray the experience of telling a new partner – arguably the biggest struggle of having vaginismus. What wording can be used to make it sound the least weird? How can I tell a partner I have this problem and ensure they’ll still be interested in me? It is frustrating to live with this condition when few have heard the word “vaginismus,” let alone know what it means, and I wanted to make sure that came through in the film. I wanted to expose the ignorance people with vaginismus have to deal with when the time arises to reveal the condition.

In the hookup scene, I pulled a lot of inspiration from my experiences revealing my condition to past partners. I’m bisexual and have experienced negative reactions to vaginismus from partners of all gender identities, but it was important to me that my main character in this film be straight, as the revelation of the condition tends to be the most dramatic within straight partnerships due to “sex” in heteronormative society being defined, literally, as penis-in-vagina penetration.

Debbie Does Dilators Becomes a Reality

Maze was an integral part of making the film a reality, as they were the sole sponsor. In writing the exam room scene, I consulted the medical team at Maze to ensure it was accurate. They also connected me with other patients with vaginismus, allowing me to gain others perspectives and experiences with the condition and work those into the script. It was so awesome to have Maze’s support throughout the process of creating Debbie Does Dilators – without them the film would not exist. With support from close friends, family, and Maze, I found the strength to push through the anxiety that came with delving so deeply into such a personal topic. Debbie Does Dilators premiered at the Indie Memphis Film Festival, won Best Brooklyn Project at the Brooklyn Film Festival and screened at various other festivals around the country. I’m so happy to finally share it on the web, where it can reach the widest audience and hopefully make an impact.

If you believe you’re suffering from vaginismus, know that you’re not alone. If you’d like more information on vaginismus and treatment options, contact us for a free phone consultation