“…What should be the most amazing feeling, a lot of the time isn’t. When it hurts, it’s like a glass shattering inside you. Embedding itself. Sharp. The more you try to get it out, the more it hurts. And then it’s not just the sex in itself that’s painful, it’s the after pain. The cramping. And they can last up to two days. Sometimes it’s twisted like someone is wringing out a dish cloth. And it’s miserable. It’s so miserable.”

In filmmaker Sindha Agha’s Painful Sex, a series of visual essays for BBC Three, a woman recounts the above as her typical sexual experience. Agha, who also experiences pain during intercourse, earlier told The Atlantic, “It took me nearly 15 years of going doctor to doctor to finally receive adequate treatment. It’s absurd that most people have never heard of a condition that one in 10 women have.”

Although Agha, and the woman she featured, eventually discovered that their habitual pain during sex was due to severe endometriosis, — a condition in which the tissue that makes up the uterine lining spreads outside the uterus onto other organs; it is said to be the one of the largest contributing factors to painful intercourse — they both say the diagnosis came through only after doctors dismissed and misdiagnosed their pain many times over.

Sindha Agha’s short film, Painful Sex.

Painful sex — also known in medical terms as dyspareunia — is a real, but commonly neglected female health problem, doctors say. According to National Center for Biotechnology Information, a US-based library of medicine, about 3 percent to 18 percent of women suffer from it, worldwide.

It is defined as a condition where women experience recurrent or persistent discomfort before, during, or after intercourse. It can either be superficial — pain localized to the vulva or vaginal entrance — or deep, with pain felt inside the vagina or lower pelvis, generally caused by deep penetration.

Dyspareunia can also be primary or secondary. While primary dyspareunia occurs at initial intercourse, secondary dyspareunia occurs after some time of pain-free intercourse.

Sometimes, painful intercourse is further characterized as vulvodynia: pain that happens spontaneously, without provocation. It’s different from dyspareunia in the sense that, while dyspareunia can occur at the entrance of the vagina or deep in the vaginal canal or pelvis, vulvodynia is localized only to the vulva or its entrance. Another difference between the two is also the fact that while dyspareunia may be acute or chronic, vulvodynia is a term used specifically for the classification of chronic pain.

“Dyspareunia and vulvodynia are genital pain disorders that have devastating effects on women’s quality of life,” says a Mumbai-based sexologist, Dr Urmi Tiwari, MBBS. “Although, it is a known medical condition, the underlying reasons are often difficult to diagnose and treat. Therefore, sexual pain disorders are often overlooked or badly managed, increasing patient distress.”

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Like the woman in Agha’s movie describes, “They didn’t believe me, it was in my head apparently. My GP said to me it’s fine; there’s nothing wrong with you. And I said, but I know something is wrong. And he was like, the scan showed nothing, there’s nothing wrong with you. And I just felt absolutely crushed like I was a bottle that had just been screwed up. And that’s when I was like, maybe it’s in my head. Maybe I am going a bit crazy.”

Despite the prevalence and impact of dyspareunia, many women do not seek care. Women with dyspareunia often suffer in silence and feel that their pain has not been assessed or validated by medical providers. “Or even if they speak up, they suffer social isolation,” adds Dr Tiwari.

And the lack of any one cause behind the two conditions makes it challenging to diagnose them. But gynecologist Dr Sabha Mhatre, from Mumbai’s Mhatre Maternity Home, says that besides endometriosis, other common reasons for women to experience painful sex include urinary and sexually transmitted infections, or skin infections in the genital region.

Often says Dr Ram Katkar, a psychologist from Mumbai’s Live Well Clinic, “Couples may not even realize and it may be a result of other sexual difficulties such as lack of desire or arousal, or strains in sexual relationships.” Other psychosocial reasons, such as a negative body image, low self-esteem or mental health struggles like depression and anxiety, can also contribute to experiencing painful sex. Dr Katkar adds that exposure to sexual or physical abuse during childhood can also be associated with an increased risk of chronic pain in adulthood. “Memories of the trauma may interfere with the act, often accompanied by depression and anxiety that add to why women may experience painful sex,” Dr Katkar says.

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What Sexual Dysfunction Looks Like When Female Sexual Dissatisfaction Is the Norm

If reported, and not overlooked and misdiagnosed, doctors say, there are treatments available. “But it needs to start with education — letting women know that these conditions are real and that they need to speak about it,” says Dr Mhatre. Only once it becomes acceptable to speak out about this, can treatment begin, she adds.

Often, doctors may recommend non-invasive approaches like cognitive behavioral therapy, physical therapy, pain management or sexual therapy, and ask patients to seek help from mental health professionals who specialize in chronic pain.

“In some cases, sexual pain can reduce if the cause has been identified. For instance, if it is because of an infection, then treating the infection will help. But in cases of vulvodynia, or sexual pain arising out of endometriosis, it can be managed if not made to totally disappear,” adds Dr Mhatre. Regardless, “it’s important that women seek help.”