Feb. 25, 2008 -- Women who suffer from chronic painful sex often have stories that seem 60 years out of date: stories of secrets, of fear, of ignorance, of condescending doctors and foolish sex advice.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.
In fact, the symptom of painful sex can be caused by muscle spasms; a skin condition called lichensclerosus or lichenplanus; or even an unexplained inflammation that leaves a woman's vulva with 10 times the number of nerve endings than usual.
Other doctors blame a lack of scientific study, not just the name.
"We have this term called vulvodynia, and people think is some great mysterious problem, but I don't think it is," said Stewart. "It's just like chest pain or foot pain or any other pain. We just need to study it to see all the things that can happen to it."
Whatever the medical profession calls it, women find it hard to find treatment even with a diagnosis of vulvodynia.
Misdiagnosis and Mistreatment
Pam P., 53, had no problem with painful sex until her first child was born.
"Within that next month after having childbirth, I found sex to be very, very painful," said Pam. When she returned to her obstetrician to see what went wrong, she thought it was a physical problem.
"I said I think either you sewed me up too tight on the episiotomy, or my husband grew — and I don't think that happened," she said.
Her doctor noticed her vaginal muscles had become very tight. Beyond that, however, Pam was told she should either "talk to a sex therapist" or "try lubrication."
For the next 15 years Pam mentioned her excruciating pain, and each time heard, "I can refer you to a sex therapist," or "Sorry, they don't have anything for women like Viagra yet."
Finally, she found an obstetrician who diagnosed her with a pelvic floor disorder often called vaginismus — a condition where the vaginal muscles involuntarily contract, making any penetration painful or next to impossible.
The involuntary reaction can be due to mental trauma, but more frequently it occurs because the cervix was tender, or a woman was not ready to have intercourse.
"If the muscles are tight enough, it can feel like hitting a brick wall," said Stewart.
With skin conditions, muscle spasms, nerve endings and a host of other causes, it can be difficult for a woman to find the correct expert to treat painful sex.
But a major problem, even gynecologists admit, is that doctors are not well trained to refer patients.
Out of 20,000 hours of training and residence, "I had one 45-minute-long lecture on all sexual dysfunction — sexual pain, libido, the whole shebang," said Goldstein. "Looking back, everything was wrong."
Yet when women find help in the right places, the results can change much more than sex lives.
Melissa B. suffered from painful sex from her first sexual experience in 1997. She wasn't abused, but she grew up in a puritanical, extremely religious home.
In 2005, after being told to remain abstinent by one gynecologist and failing to cure her problem with a sex therapist, Melissa found a physical therapist to help.
Cynthia, Pam and Melissa all found some success treating their sexual pain by visiting Raquel Perlis, a physical therapist based in Wellesley, Mass. The need for this therapy is so great, Perlis has a three month backlog of patients and treats 10 women a day for painful sex.
Perlis teaches women and their partners how to stretch and massage pelvic floor muscles. She also uses biofeedback, which visually displays the degree of muscle contractions on a computer screen. Overtime, women can visually learn to control and relax their pelvic floor muscles.
Melissa says the therapy gave her a sense of personal control and self-esteem.
"When you sit there in the waiting room and you see women who look normal, you don't feel like such a loser," said Melissa. "It's not the woman with the big ugly glasses or something silly like that, it could be anybody."