Earlier this week, I hit submit on a particularly vulnerable post about residual healing, and while the foundation of my writing will probably always be the emotional ramifications of lifelong vaginismus, I also occasionally want to share what I’m working with on the objective side of things.
You may or may not know from my 2024 update that I just finished my book proposal for approximately the 80th time. As of right now, it’s a sales pitch coming in at 55 pages and 27,201 words proving to potential publishers, and myself, that vaginismus is a topic worth investing in.
Unfortunately, I’ve learned in my 10+ years of lived experience with this topic and in my 2+ years of investigating it that it often resides at the corner of Women’s Issues and Who Cares. Amy Schumer said it best in her 2023 standup special, Emergency Contact. While she wasn’t talking about vaginismus, her joke hit hard in its elegance. (P.S. I’m going to try to embed the video below since that’s a thing I can do now. If it doesn’t work, please nicely tell me in the comments and use this link instead.)
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Now, publishers want facts. They want data. They want concrete answers to questions you wrote yourself in anticipation of them asking. When it comes to vaginismus, those things can be tricky. Let’s get into it.
Fact #1
The definition of vaginismus is the involuntary tightening of the pelvic floor muscles that makes vaginal penetration of any kind extremely difficult or impossible.
Actually, no.
Over a year ago, I copied and pasted this definition of vaginismus directly from Google for my About page. The results from that exact Google search today come up as “the body’s automatic reaction to the fear of some or all types of penetration.”
So what is vaginismus? Is it a physical spasm, or is it a psychological fear? It’s both, and technically neither.
The definition of vaginismus first appeared in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders in 1980 as a recurrent or persistent involuntary spasm of the musculature of the outer third of the vagina that interferes with sexual intercourse. Primary vaginismus was classified by persisting symptoms when vaginal penetration had not yet been achieved while secondary vaginismus was classified by persisting symptoms after a period of normal penetration.
If you’re keeping up with the lore, I’m a primary girly.
The 2013 update of the DSM-5 omitted vaginismus altogether in favor of Genito Pelvic Pain/Penetration Disorder, or GPPPD, for both primary and secondary vaginismus as well as dyspareunia, a term meaning painful sex. The new diagnostic criteria for GPPPD is: recurrent difficulty with vaginal penetration; pelvic pain during intercourse; fear or anxiety about pain during penetration; and/or pelvic floor muscle dysfunction.
This new and less specific term for certain kinds of female sexual dysfunction has made vaginismus diagnoses controversial in the medical community. It’s worth noting that I was formally diagnosed with vaginismus in 2017, four years after the removal of the diagnosis from the DSM-5.
The American Psychiatric Association defended the change based in part on research that proved the inadequacy of the spasm-based definition, suggesting that physical spasms preventing intercourse occurred less commonly than previously believed. Theoretically, if a potential vaginismus patient is too afraid to be examined, confirming the presence of an involuntary muscle spasm is impossible.
It’s a fair point. While I definitely experienced uncontrollable shaking in my legs and pelvic floor, it would have been extremely difficult to confirm the presence of an actual muscle spasm since one of my earliest struggles with vaginismus was my inability to be examined at the gynecologist.
Throughout my investigations, I’ve interviewed researchers who consider vaginismus to be a psychological phobic avoidance, or simply a misplaced fight-or flight response in the body, and others who are still attached to the spasm-based definition. I’ve heard doctors assert that vaginismus is the result of past sexual trauma, despite there not being any research to support this, and I’ve spoken to physical therapists who have developed entire practices with an understanding of vaginismus as a pelvic pain disorder.
While all of them agree that vaginismus is a legitimate condition deserving of its own diagnostic criteria, debates among them about its definition and categorization are ongoing.
For now, the definition of vaginismus really depends on who you ask.
Fact #2
Trotula of Salerno was the first person to describe vaginismus in 1547.
This false claim is everywhere.
“In fact, the first written reference to what was likely vaginismus appeared in 1547 in a scientific work called, Women’s Diseases by Trotula di Ruggiero of Salerno, Italy.”
—When Sex Seems Impossible: Stories of Vaginismus & How You Can Achieve Intimacy by Peter T. Pacik
“It was probably Trotula Of Salerno, in her 1547 treatise on ‘The Diseases of Women’, who provided the first description of what we now call vaginismus.”
—The Pathophysiology and Etiology of Vaginismus by Cherng-Jye Jeng
“Vaginismus, to our knowledge, was first described by an Italian doctor named Trotula of Salerno.”
—Online promotional materials for sexual wellness product, OHNUT
First of all, no person by the name of Trotula existed in ancient Italy. Trota, an 11th century medical practitioner who was educated in Solerno, contributed portions of The Trotula, an ancient medical compendium consisting of cures to various medieval ailments.
The Trotula texts were widely circulated, adapted, and translated throughout Europe long after the death of Trota. The examples above are referring to a Latin version of The Trotula texts that wasn’t written in 1547, but translated.
The claim is that the following excerpt from The Trotula texts is the first known description of vaginismus:
“On the manner of a tightening of the vulva, so that even a woman who has been seduced may appear a virgin.”
In 2001, medieval historian Monica Green published a comprehensive translation of The Trotula texts explaining this infamous excerpt in context. She determined that the full quote isn’t an ancient description of vaginismus. Rather, it’s included among other vulva-tightening remedies as a method for disguising lost virginity.
This information is not difficult to find; Green has received global recognition for her clarification. Even so, prominent vaginismus authors and researchers continue to cite this debunked history in their work.
Fact #3
Approximately 1 in 500 women have vaginismus.
Again, no.
The few substantiated studies that exist about vaginismus acknowledge that while the condition is extremely common, it’s difficult to pinpoint exactly how many people suffer from it. Some researchers estimate that 1 in 500 women have vaginismus, or .2%, while others claim it affects up to 17% of women worldwide. Estimations in research papers and online articles are typically followed by a disclaimer that the true statistic remains unknown.
Why? It hasn’t been studied.
PubMed currently has 2,254 clinical trials examining erectile dysfunction. It has only 13 studying vaginismus and 1 studying GPPPD. Vaginismus is the primary female cause of unconsummated marriages and yet, the Wikipedia page for the condition is less than 1300 words long and has still not been updated to reflect the 2013 update to the DSM-5.
A frustrating example of these disparities played out publicly in April 2023 when pop star Meghan Trainor took to her podcast, Workin’ On It, to talk about her vaginismus diagnosis.
News outlets reporting on her admission had difficulty aligning on how many people vaginismus affects. TODAY referred to vaginismus as involuntary spasms that affect one in five women, while GLAMOUR claimed to confirm that vaginismus impacts one in 10 women, but cited a study for dyspareunia, that never actually mentions vaginismus.
Fact #4
Your gynecologist can diagnose you with vaginismus.
Sure, if you’re lucky.
In 2018, a review by Anke Samulowitz analyzed 688 research papers about chronic pain published over 15 years and found that women seeking medical care are more likely to be gaslit and dismissed by their doctors than men. The study reported that gender bias, and not actual biological differences, make women more likely to be described as being “sensitive” by their healthcare providers compared to men who were more often described as “stoic” when seeking medical care for identical chronic pain.
I’ve found during my interviews with fellow sufferers that repeated medical gaslighting is something almost all of us have in common. None of the 10+ gynecologists I described my symptoms to over the course of a decade diagnosed me with vaginismus. Several of them suggested that I drink wine before I was legally old enough to buy it. Some were certain that I was a rape victim, while others repeatedly told me my aversion to sex was both normal and existed only in my head.
None of the medical professionals I’ve spoken to during my 2+ years of investigations, including Board Certified OBGYNs and Doctors of Physical Therapy, remember being taught in medical school about vaginismus specifically, or female sexual dysfunction in general. In a 2020 article for Refinery29, Dr. Leila Frodsham, the spokesperson for the Royal College of Obstetricians and Gynaecologists, confirmed that with few exceptions, female sexuality “is not touched upon” in medical schools around the world.
The counterintuitive updates to the DSM-5, the blatantly incorrect history of vaginismus, the varying estimates about the affected population, and the inaccessibility of treatment begs the question: What else have we gotten wrong, and how has it influenced the way we diagnose and treat women with sexual dysfunction?
Maybe someone should write a book about that.