What this mum wants young girls to know about their vulvas

Content warning: The following story includes subject matter that readers may find upsetting. It covers the topics of cancer and death.

When Kayla Newland was told that her vulval cancer had spread to other parts of her body, her shock quickly gave way to resolve. She decided that every day was a gift and that she would get on with the business of living. She stayed true to that almost until the day she died in January last year. She was 23 years old.

Her mother, Kirra, struggles to give a voice to her loss. There is no language for grief. As she navigates a world without her only daughter, she must confront the constant reminders of how much she has lost. The only way to make sense of what happened is to talk about her daughter’s story in the hope that it might save another young woman’s life.

“The change I would like is to have schools educate young girls to know that they have a vulva, labia and a clitoris,” she says. “They should be given mirrors, so they understand what they look like and learn how to articulate [explain] when something is wrong.

“We have generations of girls to come that we can help and that’s what we need to focus on. We need them to recognise these parts of the body and to understand what looks normal and what doesn’t.”

From the beginning, Kayla struggled with health issues. She was just 11 years old when she was diagnosed with lichen sclerosus – a chronic condition that makes patches of skin around the vulva or anus look white and thickened.

Devastatingly, the doctor did not explain that lichen sclerosus is linked to an increased risk of vulval cancer, especially if left untreated.

“With cancer, it’s a time game. You can’t muck around. I feel that Kayla was let down by the medical profession and that’s hard for me.”

“She should have been using a topical steroid for her whole life whereas we were told to use it only when there was a flare up.”

Her life was punctuated by flare ups, but she coped. She was working in public relations and had moved in with her childhood sweetheart. They planned to marry in March 2023.

Her journey to a diagnosis of vulval cancer was torturous, says Kirra.

One gynaecologist believed she had a cyst. Only when the pain persisted came the suggestion to do a biopsy – where a small piece of tissue is removed for examination. But it was Christmas Eve and, still believing there was nothing to worry about, Kayla put it off to enjoy the holiday with her family.

By the time she had the procedure, the ‘cyst’ had grown to the size of a five cents piece. The biopsy revealed cancer of the vulva. In February 2022, Kayla underwent surgery that removed parts of her clitoris and vulva on the left side. The cancer’s spread to her lymph nodes meant she needed to undergo radiation and chemotherapy for six weeks. Sadly, she was fighting a losing battle.

Friends decided to organise an early wedding for her. “I don’t think she was feeling too well but she sure looked beautiful,” recalls Kirra.

“She was light and breezy and so happy to be getting married.

“She knew she wasn’t going to live forever but she was hoping for more time, which she didn’t get.

“She never gave up, but the cancer was just so aggressive.”

She was told that the Christmas of 2022 would be her last. “She cried. She told me she was scared, that she didn’t want to go,” says Kirra.

“She came home from hospital on Christmas Eve and got to spend her last Christmas here with us. We had matching dresses I remember.”

She died several weeks later at home with her husband.

“I had been with her on the entire journey, but I wasn’t there when she left. I just miss her so incredibly much. It’s so painful. All I can do now is focus on getting the messages about vulval health and education out there.”

Want to do a vulval self-check but not sure where to start? Read our guide and learn what to look for.

Jean Hailes Medical Centre in Clayton, Victoria offers a dedicated vulval clinic with expertise provided by vulval specialists. If you live outside of Victoria, you can search for a vulval specialist.