No one asks women with lung cancer about their sex lives—until now.

A new study from the Lung Cancer Registry explores sexual dysfunction in women with lung cancer in hopes of better understanding the problem and finding solutions. The study, Sexual Health Assessment in Women with Lung Cancer (SHAWL), features an online questionnaire that can be taken by any woman who has or has had lung cancer.

“Many women are surprised when I ask questions about their sexual health,” said Narjust Duma, MD, assistant professor at the University of Wisconsin School of Medicine and Public Health and the study’s principal investigator. “They may be thinking, ‘I am alive with lung cancer, I should feel lucky.’ But it doesn’t mean you have to be miserable.”

There are a number of reasons why women lung cancer patients may experience sexual dysfunction during or after treatment. Surgery on a lung can make sustained sexual activity challenging, while other therapies may cause things like extreme vaginal dryness or loss of libido. Even chronic dry mouth, another common side effect, can be a barrier to intimacy, as a lack of saliva can hamper the ability to comfortably kiss a partner. Beyond the physical changes, there are psychological barriers as well, including patients who report body image issues after treatment.

While the overall incidence rate of lung cancer is declining, the rate is increasing among younger women. Dr. Duma worries that, if nothing changes, survivors may be silently suffering for years or even decades after treatment.

“If we don’t talk about it, it remains taboo,” she said. “It is very important to determine the degree of the problem.”

Join the Lung Cancer Registry and take the SHAWL survey at www.lungcancerregistry.org.