Painful Sex Still a Painful Secret

Women who suffer from chronic painful sex often have stories that seem 60 years out of date: stories of secrets, of fear, of ignorance, of condescending doctors and foolish sex advice.

Instead of sex that feels good, women report "a stinging, a stretching," or say it feels "like something too big coming out of something too small" or "like it's ripping you apart."

While the pain is horrible, struggling to find treatment may be worse. Even top gynecologists agree that training on chronic sexual pain is minimal.

"The curriculum is jammed with the explosion of knowledge, so there's very little room to put [painful sex] in," said Dr. Elizabeth Stewart, director of the Vulvovaginal Service at Harvard Vanguard Medical Associates and an assistant professor at Harvard Medical School.

"At any point 16 percent of women are walking around with pain for various reasons, and they've seen five doctors without a diagnosis," said Stewart, who has written a book titled "The V Book" on the subject.

With all the female-friendly pop culture encouraging women to say the V word — "Oprah," "Sex in the City," "The Vagina Monologues" — it's hard to believe that such a lack of openness or knowledge would exist. But it does.

After struggling for years to find treatment, a few women who've successfully overcome painful sex have begun to tell their private stories to help others.

Pain With No Common Name

"I didn't really know it had a name for a really long time," said Cynthia S., 36, who requested that her last name not be disclosed.

"The pain was so bad, I couldn't imagine putting a Q-tip in there," said Cynthia. "During my pap smear I came close to passing out, it was awful."

Cynthia believes her pain has something to do with being sexually abused as a child, but knowing the source and finding information to treat it are two separate things.

Cynthia was married for six years before finally finding a Web site (not a doctor) that described her condition. "Whoever is responsible for women's health issues should definitely know this," she said.

"This" has a name, several actually, but medical doctors and psychiatrists don't all agree. The simplest term to use, dyspareunia, literally means painful sex; however that term is loaded with psychological undertones.

Dyspareunia first appeared in the Diagnostic and Statistical Manual of Mental Disorders, a handbook for mental health professionals, in 1968. By 1980, the term was introduced as one of two terms for sexual pain disorder.

But while some painful sex disorders may indeed be purely psychological problems, the majority are not, says Sheryl A. Kingsberg, chief of behavioral medicine at University Hospitals Case Medical Center in Cleveland, Ohio.

"The key question is, is the pain sexual, or is the sex painful?" said Kingsberg, noting that this distinction is one that has been put forward by Irv Binik, an expert in sexual pain from McGill University in Canada.

"Oftentimes we pathologize women and say it's a sexual problem, when it is pain," she said.

A term with less psychological undertone is vulvodynia, which means pain of the vulva. But, experts say, this doesn't help diagnose the cause of painful sex either.

"We've named a disease based on a symptom," said Dr. Andrew K. Goldstein, director of the Centers for Vulvovaginal Disorders in Washington D.C. and New York City.

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