Vagnismus and vulvodynia aren’t words you hear every day. Many of us may not have heard them at all (we hadn’t, until a couple of years ago).
In this piece, an anonymous writer shares her deeply personal story of her more than decade-long effort to find a diagnosis and a treatment for her oft-dismissed condition.
So when the first time came around and I experienced excruciating pain, I was not too concerned.
But for me, the first time became every time.
My Sex Ed was typical of Catholic school education. In 5th grade, the school priest told us sexual intercourse was the act of a male inserting his penis into the female’s vagina in a grand act of love consecrated by God to create children. I was naïve and a total romantic; making love was going to be like I saw it in the movies.
My boyfriend and I kept trying, always with lubricant. He was eventually able to forcefully get almost fully inside of me, but the stinging, burning pain got worse. The theory was that he just had to “stretch me out” with time and my vagina would eventually get used to it.
Desperate for the pain to go away, I tried to “psych myself up” during sex, pretending like it was no longer hurting. This resulted in an extraordinarily unhealthy dynamic. I was scared to speak up during sex, for fear of ruining “the mood.” I had panicked and experienced strong physical and emotional reactions every time we became intimate. When we broke up, I felt physically and psychologically broken.
At my first gynecological exam, the doctor couldn’t perform the pap smear and even became impatient when I couldn’t stop the muscle spasms in a crying fit.
I went to a urogynecologist to undergo a cystoscopy to determine whether I had interstitial cystitis, but at the end of the procedure, he said I didn’t have the condition; instead, he sent me home with a piece of paper with the following word hand-written: “vaginismus.” Googling “vaginismus” in 2010—with vague descriptions for unexplained pain during sex—was rather unenlightening.
But even then, the first two female gynecologists I saw didn’t know what to tell me. “You just have to relax.” “Drink some wine and have fun with it.”
Ten isolating years later, a female doctor fresh out of medical school listened to me with empathy. After a long conversation about my history followed by a gentle vulvar exam, she diagnosed me with a specific type of vulvodynia called vestibulodynia—pain centered around the opening, or vestibule, of the vagina. I was happy to get a diagnosis but puzzled by the lack of medical understanding of this condition.
She said, “They think it could be caused by long-term birth control use, but we don’t know for sure. The science is very new.” My treatment plan would include the application of Lidocaine to numb the area of pain, pelvic floor physical therapy, and quitting birth control pills, which I had in fact been using since age 15.
When pelvic floor PT began, I learned that a diagnosis code doesn’t even exist for vestibulodynia—my insurance company considers physical therapy for the treatment of female sexual dysfunction unrelated to a musculoskeletal or orthopedic condition to be “experimental, investigational, or unproven.” The evidence is “limited and inconsistent.”
Angry, I began my own investigation by consulting the latest research on women’s sexual pain conditions in relevant medical journals with Dr. Google.
Although my insurance company is unfortunately right in saying that the evidence is “limited and inconsistent,” the evidence is indeed growing. Vaginismus, vulvodynia, vestibulodynia, dyspareunia: these are distinct conditions.
There are many factors potentially at play—tissue damage, physical or psychological trauma, pelvic floor hypertonicity, birth control pill use, hormones, genetics, neurology—and sometimes what you think might be the cause of the pain is actually the consequence. It’s vital to identify which factors are most relevant to you by getting to know your body and by trial and error, as I would later learn.
Just when I quit birth control and started physical therapy, the pandemic shut down the world. Since PT was put on hold, my now-fiance suggested that we start doing an extensive series of pelvic floor stretches together.
Why not? After 6 months of daily exercises, my partner and I tried having penetrative sex, and to my surprise, there was no pain. Was it quitting birth control, the stretches, or both? Then we became lazy with stretching over the holiday season, and when we tried again, the burning pain was back.
Rather than being dejected, I tried to feel empowered with this new information my body was giving me. Clearly, the stretches were working.
At my first post-lockdown appointment, my new physical therapist who specializes in treating female sexual pain told me that my initial vulvar exam went well—I didn’t appear to have pain at the vestibule that day.
But during the intra-vaginal session, I spent the entire time eyes shut, nauseated, and with a tear falling down my cheek. This showed us how deeply psychological my pain has become.
My therapist introduced me to the idea of chronic pain, and how it takes 46 months to retrain the nervous system and rid itself of it. She encouraged me to try to toss aside the diagnoses “vaginismus,” “vestibulodynia,” and to think of it as simply chronic pain ingrained in my nervous system.
For a moment, I thought she was insinuating that the pain is “in my head,” and she even clarified at one point that that was decidedly not what she was inferring, but now I think that may be exactly it. The mind-body connection is real. Vaginal penetration has always been associated with pain for me.
A few years ago, vestibulodynia likely was the primary root of my problems due to long-term birth control pill use; I recall doctors telling me my vulvar tissue looked red and inflamed. But after quitting the pill and getting to know my body better, I’ve concluded that hypertonic pelvic floor muscles and a frazzled limbic system are the lingering contributing factors to my pain.
My vagina simply does not want to open up for anyone and my pelvic floor tightens to shut anything out. In other words, I have vaginismus except now it’s 2021 and we know so much more than when I first googled the term in 2010. I am 100% confident my fiancé and I will manage this together.
Women’s sexual pain is difficult to make sense of because it is invisible, internal, and because we live in a society that until recently hasn’t prioritized female sexual health.
The science is still very new, and there is still a lot they don’t know. Doctors have different approaches to diagnoses and treatment plans and each doctor comes to patients with their own knowledge and biases. Doctors don’t always have clear answers.
So as a patient, you have to be a strong advocate for yourself. You have to listen to your body, practice self-awareness, educate yourself, find empathetic doctors, and trust your gut.
With partners, you absolutely must advocate for yourself by communicating when you are in pain. I never wanted to ruin “the mood” and it can be extremely awkward and difficult to speak up in the heat of the moment.
The pain would sometimes leave me mute, unable to express how excruciating it felt.
I should have spoken up and at the same time, my partner should have been better about checking in with me and communicating with me.
Finally, as a society, we need better, more comprehensive sex ed—we need to normalize talking about sex, teaching boys and girls to be sensitive to one another and to be receptive to verbal and visual cues so that when the first time comes around, they are empowered and equipped with the knowledge and emotional intelligence to live their best sex lives.
artwork: georgia o'keeffe
The author is a pianist, composer, and entertainment producer living and working in New York City.
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