A year and a half ago, I returned from a trip and was no longer able to have sex with my boyfriend due to the fear and pain of intercourse. Neither of us thought much of it that night but, after two weeks of unsuccessful attempts that left my vagina sore and itchy, I decided to call my gynecologist. This was the first of dozens of calls and visits to my gynecologist as we tried to find the cause of my pain. Over the next eight months, we slowly eliminated potential causes: yeast infection, STIs, vaginal strep, birth control. I was beginning to think I’d never be able to have sex again.
Finally, in June, my mom had me schedule a pelvic exam and a Pap test. Deep down I knew this exam would likely provide the answer I’d been searching for but, as a survivor of sexual assault, the thought of having a doctor’s finger—let alone a vaginal speculum—inside me left me terrified to my core.
My exam experience
My experience was actually a lot less traumatic than I thought it would be. The day of the exam, I wore my favorite t-shirt for comfort and black athletic shorts that made undressing easy. Normally, I’d be able to hold my boyfriend or family member’s hand during the exam but, thanks to COVID-19, no one was allowed to accompany me during the exam. So I laid alone, on my back, feet in the stirrups, begging my body to relax. Before beginning the exam, my gynecologist explained the procedure—she’d start with her finger and then move to the speculum. Truly, I didn’t know if the information lessened or increased my anxiety. Upon insertion of her finger, I felt a sharp pain, winced, and immediately pulled back, effectively but unintentionally ending the exam. Surprised by my wince, she began asking me questions about the level of pain and my ability to urinate. Five minutes later, after all the questions were answered and I was fully clothed, she had uncovered the real cause. She told me that I should see a pelvic floor therapist and diagnosed me with vaginismus.
How I handled being diagnosed with a sexual disorder
I had no idea what vaginismus was, what causes it, or how to treat it. All I knew was that I couldn’t afford pelvic floor therapy. So I did what most non-vagina experts do: I Googled it. According to Healthline, vaginismus has multiple names including genito-pelvic pain and penetration disorder and essentially involves the “involuntary tightening of the vaginal muscles.” Further, there are two types of it: primary and secondary vaginismus. You have primary vaginismus if penetration has never been possible and secondary vaginismus if you once could achieve penetration, but no longer can—AKA my exact situation.
Intrigued by this diagnosis, I began collecting an anthology of personal stories from Cosmopolitan, Teen Vogue, Mamamia, and other online publications in addition to medical journals. The two thoughts that never left my mind as I was researching were 1. Why had I never heard of this? and 2. Thank goodness I’m not alone.
The most comforting piece of information I learned is that both types are treatable, whether you prefer dilator therapy, Kegel exercises, topicals, or relaxation techniques. Dilator therapy was of particular interest to me, because I liked the idea of self-insertion as it allowed me to explore my body with controlled penetration. With more research, I learned that the severity of vaginismus can be further categorized as complete or situational—that is, it can either happen with all forms of penetration or only certain forms of penetration. My own vaginismus is situational; I can insert a tampon with ease, but my pelvis spasms during partnered intercourse.
At this point, I had been researching for a few days and had a clear understanding of what vaginismus was and how to treat it. That just left one question: what causes it? According to relationship counselor and sex therapist Alinda Small, there is no singular common cause but it’s often tied to trauma, shame, fear, disgust, and anxiety. Upon reading this, I knew that my vaginismus was proof that there is still trauma living inside my body.
Therapy as part of my wellness journey
I began free counseling through my college last September, despite having a negative outlook on therapy due to a lack of positive prior experiences, in hopes of overcoming my sexual guilt and fear of physical intimacy. Since then, I have gained invaluable tools that help decrease my overall anxiety, including box breathing and body scan meditation, as well as techniques to communicate my boundaries more effectively with my partner. I also went to see a pelvic floor therapist who recommended using vaginal dilators and have been using them ever since. Reading reviews of dilator kits showed me how common this problem is among the survivor community.
The hardest part of my experience so far has been being vulnerable and transparent about my pain. I had to push myself to talk about my vagina, identity as a survivor, and fear of intimacy not only with my OB/GYN, but with my family, therapist, and boyfriend. It’s really difficult to do—to allow others to see your struggles and trust that they can help. That said, I don’t think I could have begun to heal without being willing to share everything with them.
The survivor community
My freshman year of college I started Space to Speak, an organization dedicated to giving youth a leading voice in sexual violence prevention, as a way of transitioning my experience into a catalyst for positive change. Our main resource is our Survivor Community, a Discord group that serves as a place for young survivors to make connections, discuss wellness, and seek or give advice. To any survivor looking for a community of support, please don’t hesitate to reach out to me or Space to Speak. We’re all here for you, supporting you with every passing day.
Before being diagnosed, I hadn’t considered the impact sexual violence could have on a survivor’s sexual function. I was never educated about sexual disorders being possible byproducts of violence. I am now, though, and I want other survivors to know that they are not alone. Sexual disorders are not the fault of survivors and working to heal is not gross. We must continue sharing vulnerable stories, implementing inclusive comprehensive sex education, and destigmatizing sexual health so that every person living with a sexual disorder is empowered with the vocabulary to heal.
By Maya Siegel
Illustration by Claire Milbrath for The New York Times