Cancer didn't take their life – but it did take their desire

For many women who survive gynaecological cancer, the desire for sex and intimacy disappears. The healthcare system rarely asks about this. Their partner might not do so either.

Asking how treatment affects women's desire is not routine, notes Anne Paulsen.

(Photo: Colourbox)

Magnus Nødland Skogedal Magnus Nødland Skogedal Magnus Nødland Skogedal COMMUNICATIONS ADVISER

Presented by: Presented by: Presented by: University of Agder

Published 12 September 2025 - 00:01

Anita Paulsen is a nurse and sexologist. She has researched communication about sexual health after gynaecological cancer.

Through her work and research, she has met many cancer survivors who miss the intimacy in their lives.

“Many find it difficult to talk about this, even women who say they're in good relationships,' says Anita Paulsen. — “Many find it difficult to talk about this, even women who say they're in good relationships," says Anita Paulsen.

“One couple I met made an impression. They had stopped being sexually active but had also stopped kissing and hugging. And she missed it very much. She longed for what had been. There was so much sorrow there,” says Paulsen.

Sex life after gynaecological cancer is a topic that is often not discussed, neither by patients nor health professionals.

Not talked about

“Many find it difficult to talk about this, even women who say they're in good relationships. Sex and finances, some relationship therapists say, can be difficult topics,” says Paulsen.

Sexuality is a topic that is easy to overlook.

Cancer patients receive treatment for tumours, but they are not routinely asked how the treatment affects their desire, intimacy, or their sense of self as women.

Many women experience that sexuality not only disappears from life – but also from conversations. Healthcare workers often shy away from the topic. Not because it's unimportant, but because it's difficult.

“Patients think that since the nurse doesn't bring it up, it can't possibly be important. And nurses think 'I should have asked, but I'm so busy and I don't quite know what to say.' So, no one says anything,” says Paulsen.

The result becomes a double taboo. Both the patient and the healthcare worker wait for the other to open the door to the conversation.

Simple words make a big impact

Paulsen interviewed 17 women who survived gynaecological cancer and 10 nurses who worked with cancer patients. The research is part of the LETSGO study.

In her doctoral work, Paulsen examined a new model in which nurses routinely bring up sexuality in follow-up conversations with cancer survivors. Many of the women said that just being seen and heard made a big difference.

“It may be enough for someone to say: 'You're very tired now. It's normal not to want sex, and that's perfectly okay.' This can have a big impact on many,” she says.

The nurses in the study did not have specialist education in sexology, but received training in how sexuality can be affected after treatment for gynaecological cancer, and how to communicate by asking open and respectful questions. They could also refer the patient to a specialist if necessary.

Not like before

Some of the women said they had a new and better sex life after cancer treatment.

“They described finding greater peace in their sex lives and a more relaxed approach to it. They needed more time to get into position in the sexual situation, which their partners understood,” says Paulsen.

Others described sadness about what had happened to their bodies and desire, and about who they used to be.

Paulsen believes sexuality must be understood more broadly than just as a function.

“It's about identity, body, intimacy, and joy in life. Also after cancer,” she says.

Reference:

Paulsen, A. Sexual health communication in gynecological cancer follow-up care. Gynecological cancer survivors’ and nurses’ experiences with sexual health communication and its impact on sexual health related outcomes, Doctoral dissertation at the University of Agder, 2025.

———

Read the Norwegian version of this article on forskning.no