Vaginal pain affects everything from sex to Pap smears. Here’s what it’s like to live with vaginismus

When Laura Zam was 13, she remembers trying to use tampons for the first time and found that she couldn’t insert them. Then, at 17, when she attempted to have sex with her boyfriend for the first time, Zam tells Yahoo Life that she physically “couldn't let him inside,” even though she very much wanted to.

After eight months of trying, Zam was finally able to have penetrative sex, but says that “it was painful.” In fact, she adds, sex “remained painful ... for 30 years.”

Zam is far from alone. Up to 75% of women experience pain during sex at some point in their lives or find themselves unable to have sex at all, according to the American College of Obstetricians and Gynecologists. For many women, this is a rare and temporary occurrence, but for others, the issue persists. This sometimes leads to a diagnosis of vaginismus, a painful, potentially life-altering condition that can have a negative impact on several aspects of a woman’s life.

What is vaginismus?

Vaginismus occurs when the muscles around the opening to the vagina tighten up like “a clenched jaw due to actual or anticipated pain,” ob-gyn Dr. Kimberly Langdon tells Yahoo Life.

These muscle contractions are involuntary and typically happen when anything, including a tampon, penis or speculum during a pelvic exam, is inserted into the vagina, Dr. Oz Harmanli, professor of ob-gyn at Yale School of Medicine and chief of urogynecology and reconstructive pelvic surgery at Yale Medicine, tells Yahoo Life.

“It makes it difficult or impossible for the individual to tolerate vaginal penetration,” Langdon explains.

What causes vaginismus?

Dr. Mary Jane Minkin, an ob-gyn at Yale Medicine, tells Yahoo Life that we don't know “the exact cause” of vaginismus. But for some women, biological factors such as prior surgery, hormonal changes, recurring urinary tract infections, tears from childbirth, vaginal dryness and other physical causes can lead to the condition, Dr. Deepali Kothary, an ob-gyn at Kaiser Permanente, tells Yahoo Life.

Zam, who is the author of The Pleasure Plan: One Woman’s Search for Sexual Healing, was finally diagnosed at 46 years old with primary vaginismus, “which means my pelvic floor was always extremely tight,” she explains, “until I got a diagnosis and was able to treat my condition.”

In other cases, psychological or social issues including anxiety, sexual trauma, a painful sexual experience or having been raised in a household where sex was taboo can trigger the condition.

For Ariadne Wolf, her vaginismus is related to sexual trauma. Wolf tells Yahoo Life that she started experiencing symptoms of vaginismus after she was raped at age 21. “Living with this condition feels like living with a constant reminder of sexual violence,” Wolf says. “It feels like living with a reminder that the world is not a safe place for women. I don’t believe that my muscles are incorrect in believing this world is not a safe place for me.”

How does vaginismus impact women’s lives?

Vaginismus is “potentially life-altering,” Harmanli says. “Women can experience anxiety, depression, loneliness and unstable relationships.”

Zam found that having the condition “bashed my self-esteem,” saying: “I thought I was erotically defective.”

For years, having vaginismus weighed heavily on Chelsey Fitzsimons, who tells Yahoo Life that, “aside from pain, the worst part of vaginismus is the isolation.”

She adds that her sense of self-worth was “so low, partially because of my vaginismus, that I would have done anything for an hour of physical intimacy, in any form. But that desperation for touch was always and is always accompanied by fear.”

Beyond sex, Fitzsimons shares that having vaginismus has also prevented her from getting some of the health checkups she needs. Although she knows she should see a gynecologist, Fitzsimons says she can’t bring herself to do so because she is concerned about pain while being examined and whether she can find someone who knows how to treat her.

“I’m 26 and have never had a Pap smear,” she admits. “This is a terrible, dangerous thing. For the average person, a Pap smear is uncomfortable. For me, and many people like me, it’s impossible.”

For Wolf, she shares that her vaginismus leaves her in near-constant pain. “I have pain almost all the time. I have pain just sitting in class.” She adds: “The pain has gotten worse over time, not better.”

How is vaginismus treated?

In most cases, vaginismus is treatable, “although it may take time to feel relief,” says Kothary, and there is no one-size-fits-all approach.

Ob-gyns typically start by investigating physical causes of vaginismus, explains Kothary. For some women, addressing and treating the underlying issue can eliminate the condition in a matter of months. If no physical cause is found, doctors then investigate psychological causes. If there is a psychological root, doctors typically recommend therapy to address the underlying trauma. In these cases, “it may take a bit longer to cure,” Kothary says.

She explains that ob-gyns often recommend pelvic muscle training to relax the muscles surrounding the vagina, and vaginal dilator therapy to stretch the vaginal muscles.

After she was diagnosed, Zam found relief, but says that took some time. Zam’s gynecologist first recommended that she use vaginal (kegel) weights and gave her advice on how to “steer” her husband during sex. “I've learned that most gynecologists are not trained in vulvovaginal pain disorders or the mechanics of sex,” she says.

Instead, Zam found that working with a physical therapist and engaging in pelvic floor rehabilitation was more helpful. “These days, I have pain-free sex, though sometimes entry takes time,” she shares.

However, Fitzsimons points out that “there are many other ways to have fulfilling sex.” She says that “vaginismus doesn’t stop me from a mutually fulfilling experience. It just requires a little more creativity.”

Wolf has not yet found a treatment that works. Similarly, Fitzsimons is still living with the condition. “I’ve been trying to find a gynecologist that I would feel safe going to, but I haven’t gotten to that point yet,” she says.

As far as what advice she would give to other women with vaginismus, Zam says: “I want women to know that if they have sexual pain, they are not broken. They just have a medical condition they haven’t figured out yet.”

She adds: “I want them to know they have the power to find providers who will listen to them, their whole story, and who really know what’s going on with them.”

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