By Kath Mazzella OAM
At 39, I received a diagnosis that would change my life forever—vulvar cancer. It’s a rare and often misunderstood disease, typically associated with older women, yet here I was, a young woman facing a radical vulvectomy. The surgery removed my clitoris, vulva, and groin lymph glands. Six weeks of pelvic radiation followed, inducing menopause at 42. But the physical toll was only part of the story. The emotional isolation and societal silence around vulvar health were just as devastating.
In those early years, I discovered how deeply the word vulva was stigmatized. Even among medical professionals, the term was avoided. I asked to be connected with other women going through the same experience, but was told it would be “too depressing.” Then, by chance, I met another survivor. We lifted our dresses and saw our shared scars—finally, someone who understood. That moment of connection was a turning point.
I placed an ad in a women’s magazine, seeking others who had undergone similar experiences. I received 38 responses from women across Australia, all feeling the same isolation and shame. This overwhelming response made it clear: we needed to talk about vulvar health, and we needed to use the correct words to do so.
Back then, even gynaecological cancer brochures didn’t include a diagram of the vulva. How could women advocate for their health if they didn’t know the names of their own anatomy? In 2005, I presented my concerns to the New South Wales Cancer Council. They listened—and updated their materials to include a properly represented vulva. Other states followed suit. But even today, many reproductive health brochures still omit the vulva, focusing only on the uterus, cervix, and vagina.
This lack of awareness has real consequences. Vulvar cancer is often diagnosed late because of its “intimate” nature. Conditions like lichen sclerosus, which affects 1 in 80 women, are frequently misdiagnosed as thrush. Women feel embarrassed to speak up, and some doctors are reluctant—or ill-equipped—to examine and diagnose vulvar conditions accurately.
For women living in rural and remote communities, the challenges surrounding vulva health are compounded by geographical isolation, limited access to healthcare services, and cultural stigmas. In many rural areas, healthcare facilities are scarce and often located miles away, making access difficult for residents.
Combined with a shortage of trained healthcare professionals, the limited awareness means that conditions like vulva cancer or lichen sclerosus may go undiagnosed or misdiagnosed.
Moreover, cultural taboos and a lack of education about sexual health can prevent women from seeking help or even discussing their needs. These barriers underscore the urgent need for targeted outreach, education, and support services to ensure that rural women are empowered to advocate for their vulva health.
That’s why I launched the Red Knickers campaign, with the bold tagline: Viva la Vulva. I wanted to normalize the conversation, empower women to embrace their bodies, and encourage early detection of vulvar symptoms like itching, discharge, skin changes, and lumps. I also advocated for September 10 to be recognized as International Gynaecological Awareness Day (IGAD)—a day now celebrated annually by institutions like King Edward Memorial Hospital in Western Australia.
In 2018, I was honored to be named Western Australia’s Senior Australian of the Year. While awards are appreciated, they mean little without action. My mission continues: to ensure vulvar health receives the attention, funding, and respect it deserves—on par with breast and ovarian cancer.
This is a new era. Women are demanding that old stigmas be dismantled. It’s time to shine a light on silent suffering and ensure that no woman feels ashamed to speak up about her vulva. I will continue to be the voice for those who feel they cannot speak.
Viva la Vulva.
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