When Noa Fleischacker, 30, of Chicago, had sex for the first time in college with a young man she’d begun dating, she describes the experience as “impossible.”
She continued to try for years with the same partner without successful penetration; the only other person who knew was him. “I really thought I was the only person in the whole world” with the problem, Fleischacker said. “I just felt really alone and I felt really embarrassed about it. I felt like I needed to do everything to keep it secret and not talk about it with people because it just felt like this very uncomfortable thing to explain.”
After learning that an acquaintance had dealt with similar issues throughout her marriage, she eventually worked up the courage to bring it up to her primary care physician. “Her initial reaction was: Does your boyfriend know how to have sex?” Fleischacker said.
Her boyfriend did know how, which she explained to her doctor. Penetrative sex was just too painful for her and they’d found other ways to be intimate.
Fleischacker is one of many women in their 20s and 30s who suffer from female sexual dysfunction, experts who care for women in this age group said. This is often shocking to many women — and their partners — who have grown up thinking sexual problems affect only older women.
“We make a lot of incorrect assumptions that younger adults have easy, totally satisfying sex all the time, when the reality is that many people in that age group do struggle,” said Mieke Beckman, a social worker and certified sex therapist at the University of Michigan, who works with many women in their 20s and 30s.
“Female sexual dysfunction is a big umbrella term for any sexual health concerns that a woman is bothered by,” said Rachel Rubin, a board-certified urologist with fellowship training in sexual medicine and an assistant clinical professor in urology at Georgetown University. It “encompasses sexual health concerns like problems with desire, problems with arousal, problems with orgasm and, of course, issues surrounding pain,” she said.
Even many doctors don’t recognize that young women can have sexual dysfunction, Rubin added, largely due to a lack of education in many medical schools and even in specialized residencies such as obstetrics and gynecology or urology.
“There is a very poor education when it comes to sexual pain conditions or sexual medicine in general,” especially when it comes to younger women, Rubin said. “Too often [they] are told it’s all in their head and that they should have a glass of wine and relax.”
Sara Ann McKinney, director of the Vulvar Clinic at Beth Israel Deaconess Medical Center and an instructor of obstetrics and gynecology at Harvard Medical School, agrees. “Many of the conditions associated with female sexual dysfunction … are too frequently attributed to the post-menopausal state, but many in fact can occur before menopause, and women can go decades before getting a diagnosis, resulting in years of pain [and] emotional suffering.”
A 2008 study found that 24.4 percent of women between ages 18 and 44 experienced what they described as distressing sexual problems, just slightly lower than the 25.5 percent of women ages 44 to 64. A 2016 study estimated that 41 percent of premenopausal women experience sexual dysfunction globally. A large proportion of these women have pain.
“We have shown that by the age of 40 about 8 percent of women will experience vulvar pain that has lasted for 3 months or longer,” Bernard Harlow, professor of epidemiology at the Boston University School of Public Health whose team looked at pain that limited or prevented intercourse, wrote in an email. “In an earlier publication that studied women 18-64 years of age, we showed that the large proportion of prevalence is concentrated in women in their 20’s and 30’s.”
There are several causes of female sexual dysfunction — even for a given woman, multiple factors may be contributing. For example, “typically there [are] three reasons why people have pain with penetration — at least superficial pain with penetration — problems with hormones, problems with muscles and problems with nerves,” Rubin said.
Fortunately, good treatments are available. They include oral and topical medications, muscle injections and even surgical procedures, depending on the condition. These medical treatments are often given with physical therapy and sometimes sex therapy.
“Realistic expectations are [that] sex should not hurt, that treatment should be given in a biopsychosocial framework — this is not all in your head — but what it does to your head is very significant because it does lead to lots of trauma and distrust of the medical community,” Rubin said.
Pelvic floor physical therapy, which focuses on the pelvic floor muscles, is a mainstay of treatment across multiple conditions affecting sexual function, especially pain. The focus of therapy for younger women is often on helping to relax the pelvic floor muscles to allow for easier insertion, although this may vary depending on the specific diagnosis. The therapist will first assess the patient, and then provide home exercises in addition to the work done during the sessions.
Unfortunately, a major issue is a limited pool of pelvic floor physical therapists. Plus, the costs can add up for weekly therapeutic appointments.
“It’s a huge expense, and I’m on an amazing health-care plan already,” said Nicole, 26, who lives in New York and asked that her last name not be used for privacy reasons. Nicole was diagnosed with pelvic floor dysfunction after seeking a second opinion for painful sex. Despite the high out-of-pocket cost — sessions are $200 each until she reaches her $2,500 deductible — she has kept going back because she has seen small, but noticeable, improvement.
Beyond the price, many women are unaware that these treatment options exist. If they do become aware, they are often faced with multimonth waiting lists because of a shortage of skilled providers.
“I have a lot of patients tell me, ‘I didn’t even know there were doctors who did this,’ ” McKinney said. “Maybe you don’t have access to internet at home and you might not be able to Google and get onto these blogs where they’re talking about ‘go to a vulvar specialist.’ ”
For young women who access treatment, most can expect significant or complete improvement, doctors and therapists said. “It just depends on what’s going on and for how long, but with the proper intersection of medical and physical therapy care, many of our patients are completely pain free,” said Stephanie Prendergast, a pelvic floor physical therapist and co-founder of the Pelvic Health and Rehabilitation Center. “They’re doing what they want to do. It is terrible that many women suffer as long as they do. … I cannot emphasize enough to not give up.”
One 26-year-old woman, who lives in D.C. and asked that her name not be used for privacy reasons, initially wrote off her excruciating pain as normal for a first sexual encounter at age 20. It would take four more years of enduring this suffering before she started to realize this wasn’t normal.
“I was just like too tight, too dry — just something was not working. So I kind of chalked it up to not being in the right setting, with the right person, in the mood,” she says. “But then as I continued trying to have penetrative sex with other people in future encounters, I was just basically having the same issue.”
When she initially broached the topic with a doctor, she told her to use more lubricant and moved on with the visit. Eventually, her pain became so debilitating and isolating that she avoided sex.
“I just had such a negative association with having sex, talking to a partner about the possibility of having sex — I just didn’t talk to partners about the possibility of having sex because it was like this secret that I knew it wouldn’t work but they didn’t know it yet,” she said. “It’s frustrating to feel like relationships didn’t progress or ended due to this thing that was truly out of my control at the time.”
Finally, at age 25 she went to a new gynecologist who diagnosed her with dysfunction of her pelvic floor muscles and referred her to pelvic floor physical therapy. After months of treatment and home exercises, she finally felt comfortable dating again. Now 26, she has been with her boyfriend for 11 months and has regular, pain-free sex.
The gynecologist “was super validating and to this day [she] is the best doctor I’ve ever seen, and I told her that. I was like, ‘You really changed my life,’ ” she said.
Netana Markovitz is a medical resident in internal medicine at Beth Israel Deaconess Medical Center/Harvard Medical School in Boston.