Why Aren’t More People Talking About Their Experiences with Vaginismus?

Three pink peonies with green leaves.

Content note: sex and sexual dysfunction, genitals, mention of gender and sexuality bias, medical settings and treatment, brief mention of past trauma

I’m sitting upright on an examination table, my sore hip bones close as possible to the edge and my feet tucked toward my butt on metal stirrups so my knees are bent. My gloved gynecologist hands me a mirror to reflect my harshly-lit genitals back to me. I grip the mirror as she points out the way the skin folds look: not quite loose but more wrinkly like a peony than smooth like a rose, she later elaborates. I wince as her finger nears my genitals.

“I’m not touching you yet,” she says. She sounds exasperated, I think.

After months of going to these appointments alone, my partner has joined me for this one. He sits to my left, completely still and soundless. The doctor calls him over to show him that to achieve penetration, my vagina must be well lit so he can see into the vaginal canal after folding back each one of my, apparently, wrinkly flower petals. My face isn’t red at this conversation, but I’m decidedly even more turned off sex than when I had walked into the office ten minutes prior. The idea of shining a spotlight on my genitals, having my partner inspect them, and us reciting my doctor’s words every time we’re trying to have sex feels less than sexy.

Nearly two years prior, in the summer of 2016, I began experiencing an unbearable itch on the inner lips (labia minora) of my genitals. This itch was followed by redness, pain, and a bumpy appearance on the surface of the skin. Over the course of the next year or two, I tried more expensive topical creams and cleansing baths I even knew existed or ever dreamed imaginable. My vagina was practically sparkling it was so cleansed and moisturized, but the itchiness persisted. Pain during intercourse had also increased significantly in this time and my partner and I essentially ceased all penetrative sex while my primary doctor, gynecologist, and I tried to sort out my bits.

Sometime over the next year and a half, I was diagnosed with vaginismus. After that, I was referred to the gynecologist who, to my dismay, likened my genitals to a flower. Otherwise, she was a thorough and understanding doctor who did a full rundown of my family, medical, and sexual history. We went through several potential causes for my symptoms and through much trial and error, finally came to the conclusion that a strict routine of daily washing and blow drying of my genitals plus removal of all potential allergens—including those from other body products that run into the area during showering, laundry products, and so on—would solve the persistent itch and irritation. My pain, however, stuck around, especially during sex.

According to Healthline, vaginismus is characterized by “involuntary tightening of the vaginal muscles.” They also add that symptoms can include “a burning or stinging pain when anything is inserted into the vagina.” There are two types of vaginismus: primary and secondary. In Understanding and Treating Vaginismus: A Multimodal Approach, Peter T. Pacik explains that primary vaginismus is distinguished when patients “have never experienced pain-free intercourse,” while secondary vaginismus patients “were comfortable with intercourse at one time in their lives prior to progression to painful intercourse.”

Of course, I am stuck with secondary. Neither variation is typified as “worse than the other,” but, having once had regular old sex, I’m now left with several questions that seem to have complicated and nuanced answers that everyone from me and my partner to my medical team can’t seem to work out. I’ve often wondered what changed. Was it new medications? Did therapy partially-upheave some past trauma I haven’t addressed? I’ve struggled to find the cause of the pain—physical and emotional—that vaginismus rapidly embroidered into my body.

In his paper, Pacik notes that vaginismus “affects 5% to 17%” of people. I’ve seen several competing numbers bouncing around medical papers and internet articles, so it’s hard to say for sure how many people live with vaginismus. Even more, vaginismus continues to be an under-diagnosed condition as many people are shamed into silence about their symptoms and, thus, never receive diagnoses. Conceivably, non-cisgender female people may experience even more difficulty receiving diagnoses as all the literature on vaginismus completely adheres to gender binaries and heteronormative ideals. I have yet to see one article, workbook, or video, etc. that doesn’t explain vaginismus as solely a woman’s illness or explain it as affecting relationships beyond that of a man and woman.

“Despite numerous hypotheses on possible causes,” Pacik explains. “Its etiology is unknown.” I’ve read a good handful of the hypotheses and they all vary greatly. In Completely Overcome Vaginismus, Mark and Lisa Carter suggest general vaginismus causes may include “childhood trauma,” “abusive experiences,” “relationship problems,” lack of adequate sex education, “fear” (of getting pregnant or experiencing pain, for example), an “anti-sexual” “upbringing,” other “medical conditions” and medical trauma, and/or “unknown” “body messages.” As well, the cause(s) can vary from person to person. So far, the cause, for me, seems to centre around a deep-seated fear of pregnancy and previous Christian indoctrination of purity culture and anti-sexuality. Since developing painful intercourse, I’ve also developed a fear of experiencing pain.

Vaginismus isn’t considered to directly affect arousal, but in my experience, the subsequent fear of pain and subconscious harm avoidance I’ve experienced has, understandably, resulted in a reduced desire for penetration. My issues have been fraught by even further issues of chronic pain from fibromyalgia and flares from intercourse as well as decreased libido due to medications to help manage pain. The birth control I’m on—you know, the one used to help quell my fear of pregnancy—is also known to decrease libido and natural lubrication. Basically, some treatments of my root causes of vaginismus have had side effects resulting in more causes!

Other treatments I’ve tried include sex therapy and counselling, vaginal dilators, and Kegel exercises (although the effectiveness of Kegels for vaginismus is questionable, according to Pacik). I’ve also tried other commonly-prescribed treatments that Pacik says are shown to be ineffective such as topical anesthetics and muscle relaxants. It’s true the topical anesthetics didn’t help me but I did once have a successful pap smear after taking a muscle relaxant. I’ll be saving that hack for future pap smears. I have also had pelvic floor therapy recommended in passing by medical professionals, but this type of therapy can be extremely costly and time consuming. I’ve heard of many pelvic floor therapy patients having extremely positive results with it, though.

Over the past three years, my partner and I have had some success but have mostly experienced frustrated and failed attempts at penetrative sex. I’ve tried vaginismus workbooks but found them to be terribly focused on cisgender, heterosexual people , not to mention lengthy and depressing as all hell. Dilators were prescribed to me and did nothing but further increase my body hate. The treatment methods I’ve tried for vaginismus have been extremely isolating. I’ve begun to feel worthless. My chronically-ill body has sometimes made me feel useless in the past, but I feel like my body is even more useless now with a vaginismus diagnosis and no clear path to remission. It seems that there are several successful approaches to treatment and once a person finds the best method for them, it sticks and they find success. But after three long years of creams, washing regimens, surgery, dilators, workbooks, counselling, and zero success, I feel discouraged.

Having vaginismus sucks, and not only because of the condition itself. There needs to be more universal resources available that explore vaginismus beyond being solely a cisgender, heterosexual struggle. It should be part of standardized sex education. Moreover, penetrative sex does not need to be made the end goal of every type of treatment. The idea that the success or failure of a treatment hinges solely on whether it results in penetrative sex is exhausting and psychologically harmful. And treatment options should be expanded to include partners and support networks or groups.

Personal stories about vaginismus—especially ones like mine that don’t fit the typical accepted narrative of achieving full recovery—need space to be told and heard by more people without shame.

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