How to recognize and overcome vaginismus

Tasniya Sultana was beginning to think she was created, she says, “without a hole.”

The 23-year-old Baltimore native grew up in a traditional Muslim household where sex was never discussed, and even getting her period was a mystery. Sultana couldn’t use tampons, and when her husband tried to penetrate her on their wedding night, she cried out in pain.

She went to a psychotherapist, who suggested that Sultana didn’t love her husband enough. “That added another layer of guilt,” Sultana says. So she did relaxation breathing exercises, and she tried inserting small, lubed-up tampons inside her vagina. Nothing worked.

Sultana’s story is common but little-known, and the name for it is neither fear nor anxiety but vaginismus, an involuntary tightening of the vaginal muscles.

“It’s a panic attack in your vagina,” says Marilena Popolizio, who suffered from the condition for several years before getting properly diagnosed. Growing up in an Italian-American family with conservative social mores, Popolizio didn’t start dating until college, where she met her husband. They experimented with sex, but resigned themselves to touching and oral sex because attempts at intercourse hurt Popolizio.

“It felt like he was hitting a wall,” she says. Popolizio’s OB-GYN told her to “relax, drink some wine and to get my mind off it,” she says. “That just made it worse.” A sex therapist told her to repeat words like “vagina” and “penis” to overcome a presumed fear of sex. “But I’m actually a very sexual person,” so that advice felt ridiculous, Popolizio says.

Eight years into her marriage, Popolizio and her husband, now in their 30s, still hadn’t had sexual intercourse. Their frustration was mounting, and her clock was also ticking. She wanted what her peers had: children, a normal sex life and a sense of completion as a woman.

[Read: Is Abstinence Unhealthy? ]

Curing Vaginismus, One Woman at a Time

Another OB-GYN who was able to do a pelvic examination on Popolizio — after years of unsuccessful visits to doctors who weren’t able to stick in the specula — also diagnosed Popolizio’s condition. Popolizio Googled it and found a book about vaginismus called “A Private Pain,” which she gulped down in two days. It resonated entirely with her experience. “You feel very alone with this condition because it’s very embarrassing,” she says. “It took me months and months to even call them.”

“Them,” in this case, meant the authors of the book: Ditza Katz, a psychologist and sexologist, and Ross Lynn Tabisel, a social worker. The two started a clinic in Long Island nearly two decades ago to help women with vaginismus and other vaginal, gynecologic and sexual issues.

Popolizio finally summoned her courage to get help from them, as did Sultana. To date, the clinic has treated 1,150 women for vaginismus. “We make sad vaginas happy,” their website says.

“For 20 years, it’s been a full-time practice with tons of inquiries,” Katz says. “Anxiety is the baseline in all of them” — 80 percent of which are unrelated to the vagina. Sometimes religious or cultural backgrounds underlie that anxiety, or stories from other girls. But sexual abuse is rarely a cause of anxiety despite the misconception that it is a primary cause.

Not all patients have primary vaginismus — the condition in women who have never had intercourse. Women with secondary vaginismus, which is also prevalent, have lost vaginal functioning as a result of cancer or menopause, and a small fraction, due to rape or sexual assault. “Women have a tendency to shut down instead of regaining life in the vagina,” Katz says. “When they regain it, they feel liberated.”

The technique they use is the same: With a series of progressively larger dilators, they let women, and then sometimes their partners — relax the vaginal muscles to the point of comfortably opening on their own. Dilators range from small tampons to dildos.

Patients say the technique, and the coaching that goes along with it, feels like a form of tough love. Both Sultana and Popolizio had moments where they called the clinic and said they couldn’t go on. But Katz and Ross would tell them to take a five-minute break and keep going. “They are compassionate but hard,” says Popolizio, now 41. “They changed my life. Now I have two small children.”

[Read: Sex Ed 101: How to Talk to Your Doctor About Sex.]

More Medical Attention Needed

Stacy Tessler Lindau, an associate professor of obstetrics and gynecology at the University of Chicago Medicine, says vaginal dilator therapy desensitizes the vaginal muscles to mitigate the reflexive response. Another common therapy is pelvic floor physical therapy, which may also include using dilators. She refers some women to psychotherapy — either because of worry, stress and shame that seem to be causing the condition, or a consequence of it.

But often when they hear that vaginismus is a real medical condition — and not something that’s “in their head,” Lindau says, “That’s the psychotherapy.”

Lindau specializes in treating patients who have sexual dysfunction, usually as a result of chronic illnesses or age-related conditions, and about half of her cancer patients have vaginismus. She first came across the term as an OB-GYN resident. “As a condition, although it is so common, it is not well-studied, and the terminology is not consistent,” she says.

Meanwhile, many women are still suffering in silence, Lindau suspects. Just last week, she got an email from a man in Iran seeking help for the condition for his wife. “They were newly married, both virgins. The wife is very fearful about sex,” Lindau says. “From across the world, I told him that it is hard for me to assess, but I told him about a website and to take his wife to an OB-GYN.”

“That just highlights that fact that this is a global issue — and that it’s hard enough to get help that a man in Iran could find me.”

[Read: A Guide to Sex Toy Safety.]

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How to Recognize and Overcome Vaginismus originally appeared on usnews.com

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