When cancer upends your sex life
Despite new studies on disease’s link to sexual health, women still feel dismissed
Debora Lindley Lopez was 28 when she was diagnosed with Stage 3 breast cancer. Within three weeks, she began chemotherapy and was thrust into medically induced menopause. Lindley Lopez developed vaginal dryness so severe that her skin began to deteriorate and was covered in small, paper cut-like tears. Urinating was uncomfortable; sex, agonizing.
But when Lindley Lopez, now 31, told her oncologist about her vaginal pain and about how her libido had evaporated, she said he responded dismissively, telling her that if he had a penny for every time he heard these complaints, he’d be a rich man sitting on a beach. He suggested that she confide in the nurse about those symptoms, Lindley Lopez said.
“It was awful,” she said, tearing up. “It made me feel like, how could I even be thinking about anything else other than cancer? The fact that I would even ask felt shameful.”
Cancer can devastate a woman’s sexual function in countless ways, both during treatment and for years down the road. Chemo can cause vaginal dryness and atrophy, similar to what Lindley Lopez experienced, but it can also prompt issues like mouth sores, nausea and fatigue. Hysterectomies and mastectomies can rob women of sensations integral to sexual arousal and orgasm. Pelvic radiation therapy can lead to vaginal stenosis, the shortening and narrowing of the vagina, making intercourse excruciating, if not impossible. Sadness, stress and body image issues can snuff out any sense of desire.
“The damage that is done is not only physical, though women certainly experience damage to their bodies from the cancer and from the treatments,” said Dr. Elena Ratner, a gynecologic oncologist with the Yale Medicine Sexuality, Intimacy and Menopause Program. “From the diagnosis to the fear of recurrence to how they see their bodies, they feel like their whole sense of self is different.”
Over the past decade, and particularly in the last few years, there has been a marked increase in studies on how cancer upends women’s sex lives, during treatment and after. Ratner and other experts who work at the intersection of cancer care and sexual health feel encouraged that the research world has finally begun to grapple with those side effects — ones that had been all but ignored in previous generations of women, she said.
Just last year, a study found that 66% of women with cancer experienced sexual dysfunction, like orgasm problems and pain, while nearly 45% of young female cancer survivors remained uninterested in sex more than a year post diagnosis. Researchers also found a high prevalence of issues like vaginal dryness, fatigue and concerns around body image among women with lung cancer — findings that highlight the toll all types of cancer (not just breast or gynecologic) can take.
And yet, some of that same research — combined with stories from patients, advocates and doctors — suggests that the increase in scientific interest has not made much of a difference for women. While Lindley Lopez’s story offers an extreme example of provider indifference on the topic, experts say the challenges she faced when trying to seek help for her issues are not unique.
“The number of women affected by sexual health concerns after a cancer diagnosis is huge, and the need for these women to have access to medical care for sexual dysfunction after cancer is enormous,” said Dr. Laila Agrawal, a medical oncologist specializing in breast cancer at Norton Cancer Institute in Louisville, Kentucky.
“There’s a gap between the need and the availability for women to get this care,” Agrawal said.
Sharon Bober, a psychologist and director of the
Dana-Farber Cancer Institute’s Sexual Health Program, said several factors have helped move the needle on research.
For one, survivorship is growing (in 2022, there were 18.1 million male and female cancer survivors in the United States; by 2032, there are projected to be 22.5 million). There is also a greater understanding within medicine and society at large that sex and sexuality are an important component of overall health, Bober said. Since 2018, she added, the American Society of Clinical Oncology has urged providers to initiate a discussion with every adult cancer patient — female and male — about the potential effects of cancer and cancer treatment on sex.
But some women say they’re still greeted with silence. Cynthia Johnson, a 44-year-old from Texas who was diagnosed with Stage 2 breast cancer at age 39, said she was “grateful for life and lifesaving treatments.” But that does not negate her frustration that none of her doctors ever brought up sexual health.
“They don’t tell you going into it that you are going to experience dryness. They don’t tell you that you are going to experience lack of desire,” Johnson said. “They don’t tell you that if you do, on the off chance, get in the mood to do something, it’s going to feel like razor blades.”
Surveys support her experience and suggest there are significant gender discrepancies in who gets queried about sex. A 2020 survey of 391 cancer survivors found, for instance, that 53% of male patients were asked about their sexual health by a health care provider, while only 22% of female patients said the same. Findings presented last year at the annual meeting of the American Society for Radiation Oncology, focusing on 201 patients undergoing radiation for cervical or prostate cancer, showed 89% of men were asked about their sexual health at their consult, compared with 13% of women.
Despite those headwinds, effective treatments and interventions do exist.
Both Ratner and Bober work in multidisciplinary sexual health programs that, in many ways, represent the gold standard of care. A patient might see a gynecologist, a pelvic floor therapist who can help with treatments like dilator therapy, and a psychologist who can address emotional struggles. (Bober said that, until recently, she could probably count the number of these centers on one hand; now she estimates there are “more than 10 and under 100” nationwide.)
A year and a half after her diagnosis, Lindley Lopez drove to one such center at Northwestern University. At her visit, she saw a clinical sexologist who teared up during the pelvic exam. “She said, ‘You’re 29 and your vaginal area looks like you’re about 80,’ ” Lindley Lopez recalled. The sexologist gave her information about laser-therapy vaginal rejuvenation and recommended estrogen creams to help with vaginal atrophy.
It was comforting “just sitting down in that office, and having someone put her hand on my shoulder and say: ‘Hey, this is important. And anybody who tells you that this is not important, is wrong,’ ” Lindley Lopez said.