The first time Mary H. realized something was wrong with her body was the first time she had sex. She was 22, living in New Jersey, and with the high school boyfriend she had been dating since she was 16 years old. During their first intercourse, she felt a sharp pain at the entrance of her vagina that was so intense that they didn’t complete the act. She continued to feel the pain during subsequent attempts.
Over the years, she tried to bring up the pain with different health care providers, but was rebuffed. They advised her to drink some wine, relax, and watch movies. One clinic suggested her boyfriend may be coercing her into having rough sex. Another clinician said it could have something to do with her anxiety disorder.
After eight years, the pain was so bad that on the rare occasions that she and her now-husband would have sex, Mary would end up crying in the shower afterward. After every climax, she said that cramping was so intense that it felt as if someone had moved her organs around inside her body.
“I felt like I was being a bad wife. I felt like I wasn’t a woman,” Mary recalled. “What was I doing wrong?”
For women like Mary who experience chronic, debilitating pain during sex, there can be few places to turn for help. If doctors learn about female sexual symptoms at all during medical school or residency, they are advised to prescribe ways to “relax” patients, like drinking alcohol. But sexual dysfunction symptoms are more common among people with chronic ailments like diabetes, psoriasis, depression or cardiovascular disease, and they can also be one of the first signs that something may be seriously wrong with a woman’s reproductive organs. When a doctor dismisses a woman’s concerns about sexual dysfunction, he or she could miss an opportunity to diagnose diseases where sexual dysfunction may be their first or only symptom.
‘It’s all in your head’
The definition of female sexual dysfunction is slippery because it depends on an individual woman’s own perspective on her symptoms. For instance, female sexual dysfunction is an umbrella term that covers symptoms like pain during sex, low libido, and difficulty with arousal or orgasm. But if a woman experiences these things and is not distressed about them, or if she is satisfied with the quality of her sex life, then she doesn’t have female sexual dysfunction. Women can also experience seasons of female sexual dysfunction that come and go, depending on other factors in her life like postpartum recovery, serious illness or the beginning of menopause.
That may be why it’s so difficult to measure how common female sexual dysfunction is in the U.S. One nationally representative survey from 1999 estimates that 43 percent of American women ages 18 to 59 experience sexual dysfunction, on the basis that they said they had experienced, for a period of several months or more, a lack of interest in sex, inability to have an orgasm, pain during sex, lack of pleasure during sex, anxiety before sex or an inability to self-lubricate in the past 12 months. But this number doesn’t reveal whether any of these symptoms caused women distress, or whether some of these issues could be related to the woman’s sex partner.
Doctors in medical school and residency are typically not trained to approach sexual concerns this way, said Dr. Leah Millheiser, founder of the Female Sexual Medicine program at Stanford Hospital.
“As a resident, I learned that it’s all in a woman’s head,” Millheiser said. “She should go home and drink a glass of wine.”
As a consequence, women like Mary are not treated for serious medical problems, and can go from doctor to doctor feeling dismissed about issues that are having severe effects on their health, self-esteem and relationships.
Dr. Lauren Streicher, founder of the Center for Sexual Medicine and Menopause at the Northwestern Memorial Hospital, said that she is often the fourth or fifth doctor a woman has seen for a sexual health symptom. And while the causes of sexual dysfunction can be complex, they can also be symptoms of screenable diseases like thyroid problems, endometriosis or ovarian cancer — all things that can cause lack of libido or pain during sex and shouldn’t require multiple doctors’ visits to find.
Streicher recalled a recent patient, a young woman whose problems were so severe that she hadn’t been able to consummate her new marriage. She’d visited 14 other doctors about the pain she experienced during intercourse and was being pushed toward talk therapy as a solution.
But once Streicher performed a simple physical examination, she discovered an obvious explanation for the woman’s problems: a vaginal septum, a rare condition in which a wall of flesh divides the vagina into two chambers. Every time she had tried to have sex, her partner’s penis was crashing into the septum, causing her intense pain.
Streicher was able to fix the problem with a simple surgery, but said she still referred the patient to talk therapy because the length of time it had taken to get the correct diagnosis had strained her relationship with her husband.
Like Streicher’s patient, some women may have a singular medical cause for their sexual symptoms. However, it’s most likely that a complex mix of factors — both psychological and physical — could be contributing to sexual dysfunction. Additionally, one sexual concern could snowball into several other problems.
That’s why an integrative approach to this issue is so crucial, said Millheiser. It’s her job to “triage” a patient’s symptoms, getting to the root of when the problem started, exploring factors in her life and relationship that may be contributing to the dysfunction, while also doing full physical workups to look for potential medical reasons for sexual symptoms.
“You can’t discount a sexual concern as ‘just psychological,’ because then a woman might become upset or offended,” she said. “She doesn’t want to be told this is all in her head.”
For most women, comprehensive care is out of reach
There are no accredited fellowships that allow doctors to specialize in sexual health for either men or women, but this hasn’t stopped a handful of doctors from crafting their own training programs and opening medical practices in academic centers. Their goal: to take women at their word about sexual symptoms, which sometimes involves approaching problems as potential medical conditions.
After cobbling together their own training on female sexual health, they take a multidisciplinary medical approach to female sexuality instead of simply shunting patients off to talk therapy.
Centers that approach female sexual dysfunction from this perspective are rare, but growing. In addition to Streicher’s program at Northwestern and Millheiser’s at Stanford, academic medical centers at UCLA, UCSF, Indiana University Bloomington, Loyola University in Chicago, the University of Kansas, Boston Medical Center and Beth Israel Deaconess Medical Center approach female sexual health in a multidisciplinary way. But Streicher said that most American women don’t have access to this kind of comprehensive treatment for sexual health.
“For the overwhelming majority of women, it’s a very specialized thing,” Streicher said. “It doesn’t exist.”
Making up for lost time
By 2015, Mary was 29 and living in Maryland with her husband. She had seen three different doctors and even a reiki healer for the pain she experienced during sex. Her menstrual cramps were also getting worse, to the point that she was falling over from the pain or vomiting during her period.
The one day, a friend of hers who was teaching a class on human sexuality came across a small blurb in her textbook on endometriosis, a condition in which the uterine lining that usually grows inside the uterus begins to grow outside the organ, rooting itself onto ovaries, fallopian tubes, the colon, and other surfaces in the pelvic region. Then, during a woman’s menstrual cycle, the lining begins to shed, causing severe cramping and pain.
She passed the blurb on to Mary, who immediately started doing more research on the disease. Armed with a list of endometriosis symptoms she had — including painful intercourse — she went to a new OB/GYN doctor who congratulated Mary on diagnosing herself.
“She said, ‘You should do this for a living, I can’t believe you figured it out,’” Mary recalled.
After the initial clinical diagnosis, Mary went on to have laparoscopic surgery to confirm the presence of endometriosis and to remove the lining from other parts of her body. The surgeon told her he removed endometriosis from 80 percent of her pelvic region, as it was affecting her bladder, appendix, ovaries, pelvic wall and the area near her rectum. The lining had also created an endometrioma, or large cyst, on Mary’s right ovary, pinning it to her pelvic wall.
That wasn’t the end of her story. Because she had been enduring pelvic pain for so long, she had developed vaginismus, an involuntary clamping down of the pelvic floor muscles that made penetration difficult or painful. After the surgery, it took another eight months of pelvic floor therapy to help her ease back into sex with her husband. By then, she was 30 years old.
“It was kind of like losing my virginity all over again, but in a much better way,” she said. “Now I see what all the fuss is about.”
Stories like Mary’s are exactly what Millheiser hopes to avoid with her approach. While she isn’t Mary’s doctor, listening to some of the facts of her case align with other patients she has seen. Millheiser said there’s no doubt that “years and years of painful intercourse” would go on to cause more problems down the road. Specifically, that vaginismus is a very common result of untreated endometriosis.
″Vaginismus is an involuntary contraction of the pelvic floor muscles, often as a result of fear of pain,” Millheiser said. “Her body was protecting her from pain.”
Mary still lives with a small measure of pain — something she describes as “completely tolerable,” and avoids sex on days when she might have to do something else that might cause her pain to spike, like a long car ride that can jostle her body. But she cries thinking about the years of pain that affected her relationship with her husband.
“Now that I am sexually active, there’s an added layer of guilt, where [I think], ‘Wow, if he rejected me nearly as many times as I did then, I would be crushed,’” she said.
This article originally appeared on HuffPost.