How and where to get help
Despite those significant headwinds, effective treatment options and interventions do exist.
Both Dr. Ratner and Dr. 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 treatment options like dilator therapy and a psychologist who can address emotional struggles. (Dr. Bober said that, until very 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 cancer diagnosis, Ms. Lindley López drove to one such center at Northwestern University in Chicago. 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,’” Ms. Lindley López recalled. The sexologist gave her information about laser therapy vaginal rejuvenation and recommended several 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,’” Ms. Lindley López said.
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.”
