Shelby Hadden was 14 when she first got her period. She decided to try using a tampon, but no matter what she did, she could not get it into her vagina. “It was the most painful experience I’d ever had,” Hadden, now 32, says. “I knew something was wrong.”
Her mom, a practicing nurse, gently told Hadden it was all in her head and tried to give her advice on how to insert the tampon. It wasn’t until her freshman year of college that Hadden realized what was wrong. She was taking a human sexuality course—the only elective that fit in her schedule—when she saw the word vaginismus defined in a homework assignment.
“I was like, ‘That’s it. That is what I have.”
Vaginismus is a pelvic disorder in which an involuntary contraction of the pelvic floor muscles causes pain with any kind of penetration of the vagina, be it inserting a tampon or having sex. It often manifests as pain at the opening of the vagina and can feel like a wall preventing anything from entering. The condition was first named way back in 1861 by James Marion Sims, MD, who is considered the “father of gynecology” despite his deeply unethical and racist medical practices. And even though more than a century and a half has passed, we still don’t know how many women are actually affected by this condition.
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Accurate data is hard to come by, both because it is an under-researched condition and because it’s not well understood by the health care world or the general public, an integrative review from 2023 found. Estimates in 1990 suggested that anywhere from roughly 5 percent to 17 percent of women struggle with vaginismus. And today, most existing data comes from women who seek clinical help for this painful condition, suggesting that even more women are suffering in silence and living with unreported symptoms, according to a 2021 research article. The stigma and shame that go hand in hand with the condition (especially when it is coupled with sexual abuse) doesn’t help either.
It can also be a struggle to find a medical professional who takes this type of pain seriously. Hadden knew what had been going on with her body since age 14, but she wasn’t able to find a gynecologist who validated her experiences until her mid-20s. (One doctor even told her, “Well, you’re not having sex, so why does it matter?”)
“Vaginismus is one of the many examples in which women’s pain has been invalidated, dismissed, neglected at best, and that is a theme throughout history,” says Elizabeth Comen, MD, an oncologist specializing in breast cancer and author of All in Her Head. “You have a system that was not built with women’s voices at the center and the heart of the issue.”
Historically, vaginismus was categorized as a “moral disorder” in women, according to a research paper published in 2012. And because women’s pain was systematically invalidated for centuries, there has been little research done on this condition and other important women’s health issues.
Looking back to medical school, Dr. Comen says she never learned about vaginismus. “I have no recollection of ever learning about pelvic pain, let alone pelvic PT. Gynecology was focused on sexually transmitted diseases and infections, pregnancy, and pregnancy prevention,” Dr. Comen says.
All of this perpetuates a cycle of inadequate women’s health care and means women like Hadden continue to face difficulties in finding and receiving help for vaginismus, over 160 years after Dr. Sims first wrote about it.
The ‘Why’ Of It All
There is still no clear answer or consensus for why it occurs, and no singular cause doctors can point to.
Instead, they suggest several different factors that can come into play. For one, psychological components (like a history of sexual trauma or general anxiety that translates to “fear of penetration”) can contribute to its development. There are also people who develop tighter pelvic floors and don’t realize this fact until their first painful attempts with a tampon or penetrative sex.
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Some people may also have different vaginal anatomy, such as an extra flap of skin in the vaginal canal, or they’re born with an extra, or even no, uterus. These variations in anatomy may necessitate vaginal surgery, which in turn can lead to a buildup of scar tissue or increased muscle tone in the area that can increase the risk of vaginismus.
To diagnose patients with the condition, Rotimi Nettey, MD, an assistant professor in the Scott Department of Urology at Baylor College of Medicine with a specialization in pelvic floor health, says she typically gets a medical and sexual history, clarifies where pain in the vulva is, and does an exam to see if she can identify any pelvic floor tightness.
“The biggest component of understanding vaginismus is that there is this involuntary aspect to it where you really don’t have control, even though you desire to allow this [penetration] to happen,” says Corey Hazama, DPT, cofounder of Beyond Basics Physical Therapy and a women’s health clinical specialist. She compares the feeling to the body’s blink reflex when something approaches the eye (like a contact lens or finger). Even if you want to touch your eye, you often can’t help but shut it.
Azia To, a 26-year-old from Toronto, Canada, knows this frustrating involuntary feeling well. She first felt symptoms of vaginismus when she tried to put in a tampon at age 17. It felt as if she were “hitting a wall” when she tried to insert the tampon, then her vision went blurry and she hit the floor, passing out from the pain.
When To tried to have penetrative sex with her first boyfriend, she was understandably nervous. True to her fears, even when she was verbally saying yes, her body was saying no. “It felt, again, like hitting a wall. But it was really my pelvic floor muscles just tightening up to protect myself.”
A Self-Esteem Hit
A lot of women with vaginismus won’t know they have the condition until young adulthood, when they first try to use a tampon or have penetrative sex. And coming to terms with this involuntary roadblock while trying to explore a changing body or sexual relationships for the first time can be difficult.
“It really was horrible for my confidence—I had just a terrible concept of my body and sexuality,” Hadden says. “I knew I liked making out with guys, but I was so afraid of anything sexual beyond that, so I really didn’t explore that part of myself until I was in my mid-20s.”
Indeed, persistent vaginismus has been linked with poor self-esteem and self-worth, as well as distorted perception of sexual and gender roles and one’s body, according to a 2021 research article. Dr. Nettey has noticed this in many patients, saying that by the time she sees them, they have often gone to multiple doctors and are very frustrated. She sees the emotional toll it takes on the patients individually and in relationships.
With few people talking about the condition, women who are struggling with vaginismus can feel very isolated. So Hadden has been doing her part to destigmatize the condition and bring more awareness to it, even making a short film in early 2018 about her personal experience.
“When I made my film, TikTok didn’t exist, and physical therapists were not online talking about [vaginismus]. There was nothing out there,” she says. Hadden is grateful to see much more content about the condition now, so people who are struggling can realize it is normal and that they will be okay.
Finding Effective Treatments
In their quests to find an answer to their pelvic pain, both To and Hadden were told by doctors to just “have a glass of wine” and relax. But after each spoke to more doctors, they finally found the one thing that helped: pelvic floor physical therapy.
Pelvic floor therapy is the same as any other physical therapy in that it combines manual work and repeated exercises. Hazama says that when patients first come in, they often are not ready for the internal vaginal work it can involve. In those cases, she may ease patients in by working on the soft tissue around the vagina, like the legs, hips, lower back, abdomen, and other areas of the groin.
Hazama also does something called “down training,” which uses a combination of mindfulness, diaphragmatic breathing, meditation, stretching, and visualization to help calm the nervous system. This can ease the extreme reaction some women have to something approaching their vagina (and is specifically helpful in patients with underlying anxiety or penetration-related fear).
“If your reaction is to flinch and close [up] when something’s coming at you, we try to teach the opposite,” she says.
Down training is part of an effort to take a more comprehensive, person-centric approach to understanding and treating vaginismus and women’s health in general, which research shows can be more effective. Toward this end, both Dr. Nettey and Hazama often also refer patients to mental health providers to address some of the underlying psychological factors that may contribute to vaginismus. Dr. Nettey believes that a multidisciplinary and collaborative approach works best for patients suffering from vaginismus. Directing patients to mental health providers, sex therapists, and pelvic floor physiotherapists may help address some of the underlying psychological factors that may contribute to the disorder.
In addition to down training, pelvic floor therapists often introduce vaginismus patients to something called vaginal dilation, which involves using physical vaginal dilators, or cylinders inserted into the vagina to help practice penetration. The goal is not to insert the largest dilator immediately, but rather to gradually retrain the muscles to stay relaxed while accommodating larger and larger objects, Hazama says. “You want to be able to sit with it—just breathe and let [the dilator] hang out there,” she says. Patients start small and then gradually increase the dilator size as they adjust to each one.
Patients can practice with the dilators on their own, which is especially helpful for women who don’t have access to consistent physical therapy. “A lot of times it’s nicer at home—you can dim the lights, put on a nice candle, play some soft music,” Hazama says. “You are in your safe space, where it’s sometimes a little bit easier to relax than in an office setting.”
For To’s part, she could only afford six sessions with a pelvic floor physical therapist, which she paid for out of pocket. After that, she had to learn to manage her vaginismus on her own. She used dilators at home and began to integrate mindfulness and reflective journaling into her routine. When she saw this pay off, she realized more people needed to know they could do this work on their own with the right tools. “This information needs to be accessible. People need to learn that they don’t need a lot of fancy things to just learn how to trust their body and better understand it,” she says.
“she realized more people needed to know they could do this work on their own with the right tools.”
More often than not, vaginismus treatment is delayed because of a lack of awareness, as demonstrated by both To and Hadden’s experiences. Dr. Comen says this is part of a larger narrative of normalizing and dismissing women’s pain, particularly when it comes to genital function.
“If this were anything related to men, there would be more funding. There would be more research. There would be entire institutes devoted to tackling this throughout history,” she says. “Women’s pain, wherever their pain may be, needs to be adequately addressed.”
In order to try to bridge some of those awareness gaps, To began collaborating with Ellie Hong, a pelvic pain coach and pelvic floor physiotherapist who has been treating vaginismus for eight years. Together, they have cofounded one of the first digital therapy programs and online communities for women who experience painful sex. The site provides expert-led videos, gives homework assignments, and offers a safe community where members can ask questions and share their own healing journeys.
“The waiting time is insane these days to see a gynecologist, let alone get a referral, especially if you don’t have the finances or are in a state where help is not accessible. Our goal is to make a frontline solution where people can receive that,” To says.
This article originally appeared on Women’s Health U.S.
