“The stigma and shame that surrounds gynaecological health is as old as time and now in 2020 it is still costing lives. Pudendum a Latin word meaning female genitalia: one who should and ought to be ashamed; the shameful part of a woman.”
25-year Vulva Cancer survivora non-medical term that means different things to different people (for some, being a survivor can start at the beginning of cancer or cancer treatment, while others may use this term after their treatment and follow-up has finished) Kath Mazzella OAM makes no bones about the fact that our inability to talk openly and accurately about Gynaecological Health is more embarrassing than the subject itself.
You wouldn’t call a penis, testicles, so why are we still calling the vulva a vagina? There is too much shame, too many taboos.”
Kath’s own experience involved a misdiagnosis and subsequent surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence to remove her clitoris, vulva and groinarea between the abdomen and thighs lymph glands. She says awareness of the risks and symptoms of vulva cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs are vital.
“What surprised me in the early days was that there was no vulva diagram included in the Gynaecological cancers literature and the suggestion was received like I wanted to promote pornography.”
Kath is responsible for International Gynaecological Awareness Day (#IGAD) which is marked on 10 September and encourages others to join the campaign.
“I am on the Women’s Involvement Panel at Royal College of Obstetrics and Gynaecologythe study of the female reproductive system and related diseases, London and see the great progress with health consumers on this panel having a voice. However, when I travelled back to Australia from the UK in 2018, I approached a community radio station to talk about my award (2018 WA Senior Australian of the Year) and her 9 other awards for a voice for women. They said their constituents would not be interested in Gynaecological Health.
“That is the difference in Australia. Many women suffer in silence. The silence must be broken and women’s experiences must be heard. Not to mention the ripple effect on fathers, husbands/partners, sons, lacking the knowledge and understanding and in the dark too.”
“I have established the International Gynaecological Awareness Day and my vision is for interested parties to mark this day in an effort to raise the profile of all things Gynaecological i.e. Endometriosis, Poly-Cystic Ovary Syndrome (PCOS), Fibroids, Lichen Sclerosus, Prolapse, STI’s, Menopause, Hysterectomies, Gynaecological cancers and so on. I would like to see a separate division between Reproductive health (having babies) – opposed to Gynaecological Health (women’s conditions).”
Kath is keen to see greater engagement in UBU workshops (Undies for Better Understanding). Check it here on Facebook. A fellow advocate Lynette Ellard died last month due to misdiagnosis of vulva cancer and ask me to keep sharing the message. With an incidence of only 1 in 100,000 so the danger of misdiagnosis cannot be ignored by medical professionals and women themselves, the risks and symptoms are vital information. www.kathmazzella.com
Risks and symptoms include: Itching, burning, Lichen Sclerosus or a vulval lump are all signs you should see your doctor.