Despite a wave of new research around cancer treatment and sexual health, women say their issues are still being dismissed. Here’s how and where to get help.
Débora Lindley López was 28 when she was diagnosed with Stage 3 breast cancer. Within three weeks, she began chemotherapy and was thrust into medically induced menopause. Ms. Lindley López 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 Ms. Lindley López, now 31, told her oncologist about her vaginal pain and about how her libido had evaporated almost overnight, 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, Ms. Lindley López 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 Ms. Lindley López experienced, but it can also prompt issues like mouth sores, nausea and fatigue. Surgery, like a hysterectomy or mastectomy, 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 sexual 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. Dr. 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 complex side effects — ones that had been all but ignored in previous generations of women, she said.
Just last year, for instance, a study found that 66 percent of women with cancer experienced sexual dysfunction, like orgasm problems and pain, while nearly 45 percent 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 very same research — combined with stories from patients, advocates and doctors — suggests that the increase in scientific interest has not made much of a practical difference for women. While Ms. Lindley López’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, Ky.
While they are becoming more plentiful, these types of programs still tend to exist in large hospitals or major urban cancer centers and many women in the United States may not live close enough, or have the resources or health insurance coverage, to regularly access such care. But even if going to a sexual health center is not possible, most women just need a “home base,” said Lisa Egan, a physician assistant with a focus on gynecologic oncology who leads the Sexual Health in Women Impacted by Cancer Program at Oregon Health & Science University.
Who that “home base” is can vary; it just needs to be a provider that offers help and support. Ms. Egan said it could be the patient’s primary care doctor or a cancer doctor or nurse; Dr. Bober said it might be a gynecologist or a sex therapist. Dr. Agrawal also noted that the International Society for the Study of Women’s Sexual Health had a database of providers who focused at least partially on female sexual health issues, so it could be a useful jumping-off point. To ascertain if providers are in a good position to help, it may be useful to ask outright about what their experience has been helping women with sexual dysfunction during and after cancer, and if they would feel comfortable helping you put together a plan for addressing your concerns — even if that means referring you out to other clinicians, Dr. Bober said.
All of the doctors interviewed for this story also noted that online communities and advocacy groups could be helpful resources. Ms. Johnson, for instance, is an ambassador at For the Breast of Us, which provides community and support for women of color impacted by breast cancer; Ms. Lindley López works for the Young Survival Coalition, a nonprofit focusing specifically on the needs of young adults with breast cancer. These kinds of groups offer a platform for women to swap information, connect with providers and find solidarity — particularly as the medical world struggles to fully address their needs.
“I really want women with cancer to know that sexual health problems are treatable medical problems, and they can get better,” Dr. Agrawal said. “I just want to offer that out as hope.”
Leave a Reply