The Fight to Bring Gynaecological Health Issues Out from the Shadows
One of the lesser talked about potential risks of menopause is an increased risk of vulva cancer. Each year approximately 300 women are diagnosed with this disease yet, for some reason, it is shrouded in taboo.
When Kath Mazzella was diagnosed with vulva cancer in 1994 she was met with shame and embarrassment, and so started a lifelong mission to spread awareness and change perceptions that has lead her to receive an OAM, the WA Senior of the Year award in 2012 and 2018, and a host of other national and international accolades.
Thousands of Australian women are suffering as a result of gynaecological health issues such as cancer, endometriosis and polycystic ovaries, and yet the awareness and willingness to discuss in public is alarmingly low.
The statistics, while scary, show the seriousness and impact that these conditions have:
- It is estimated that over 6000 new cases of gynaecological cancer will be diagnosed this year, making up 9.8% of the total cancer diagnoses in women*
- Every 10 hours a woman in Australia dies of ovarian cancer; and, one in 70 women will develop ovarian cancer**
- One in 10 women suffer from endometriosis, with a staggering 176 million women worldwide affected***
Unusually, Kath was only 39 when she sought medical advice after finding a lump in her vulva. Over the next two years, she saw two GPs and one gynaecologist and each time felt shame walking into the appointment, noticing that conversations were usually held behind closed doors using incorrect terminology.
I was so embarrassed to say to the doctor “I have a lump, can you have a look at it?.” Each time, they fobbed me off, insisting it was normal and nothing to be worried about. It kept playing on my mind so eventually I asked for it to be removed and it turned out that it was vulva cancer. The surgery was intensive, my clitoris, vulva and lymph glands were all removed. But it was nothing compared to how society treated me due to the shame and the ignorance. I felt like my dignity had been stolen and I needed the courage to get it back.
Nowadays we are urged to seek a support group of peers who are either experiencing, or have experienced, similar health issues to help us with the process. But, at the time of Kath’s diagnosis and surgery, this wasn’t common practice. Instead, she felt as if the opposite was encouraged.
“The gynaecologists who were mostly male at that time believed it was “too depressing” to connect those going through the same thing, and this only amplified the feeling of isolation.”
It was only by a chance encounter that Kath found someone who had been through the same thing.
“When I met a woman who had had her genitals removed, she lifted her dress and I lifted mine and I realised I wasn’t the only person in the world who had been through this. I thought to myself: this woman truly understands me?.”
A deep desire to connect further saw Kath place an ad in Woman’s Day as a way of searching for others. Much to her surprise, she received 38 responses from women all over Australia, and their stories of isolation and shame mirrored Kath’s. To help connect all of these women and avoid others from feeling the same way, Kath founded the Gynaecological Awareness Information Network (GAIN) in 2001 and became a voice for women managing the number of gynaecological issues.
One of the big issues GAIN started tackling was the use of incorrect terminology. For example, when Kath started her campaign she noticed the large majority of diagrams in brochures all referred to the vulva as a vagina.
“I have never been able to understand why society calls it a “vagina” when it is actually the vulva. I am constantly told by medical professionals that women wouldn’t be comfortable using that word. Why not? That’s what it’s called! It was after getting a brochure from the Cancer Council not long after my diagnosis that didn’t have the vulva correctly labelled that I decided to speak up. People thought I was tapped in the head and would brush me aside.”
Over the years, Kath has worked with various groups and organisations and is always quick to point out when the diagrams aren’t labelled correctly. As a result, several publications have been updated and she has even had her name listed in the acknowledgements (something Kath is excited by but is quick to point out that’s not why she does this). However, the more common response she receives when raising the issue is “we’ll get it right next year”. Yet, “next year” rolls around and it is still missing, or wrong.
It is because of this that one of GAIN’s main purposes is to empower through knowledge. Each September, International Gynae Awareness Day is held as one of the ways the organisation seeks to educate the community. They also offer support meetings and ways to share your story.
It’s thanks to these efforts that Kath has assembled an impressive list of awards: In addition to her WA Senior Australian of the Year Awards and OAM, Kath has also collected the Jeannie Ferris Cancer Australia Gynaecological Cancers Award, the 2012 Beyond blue category award, been inducted into the 100 Women WA Hall of Fame and the Our Bodies Ourselves Women’s Health Heroes Hall of Fame in the US.
Despite her impressive award resume, Kath has no intention to slow down her struggle, and is constantly wondering what more could be done.
“Awards are great and it’s an honour, but yet here I sit in 2018, still trying to get the word out.”
While there are no quick fixes to address the stigma attached to gynaecological health, there are ways for women to empower themselves through education such as using the correct terms and not being afraid to seek advice from a medical profession if something does not feel right. It is these small changes Kath believes will evolve with time and eventually there will be no stigma attached to the discussion. As Kath continues to change the larger perception, she’s happy to know that she has positively impacted the lives of women suffering in silence so they now know they are not alone. And that is a very powerful message to have delivered.
Get involved with friends
Kath often works with community groups and not for profit organisations to deliver fun and engaging workshops that help get the conversation started.
“Whether you’re designing paper undies or carefully painting the icing on cookies, my workshops are a starting point for the discussion. Participants start chatting to the person standing beside them and it’s never long before a connection is made whether it’s through a family member’s experience or their own.”
For more on Kath’s workshops and her campaign, visit www.kathmazzella.com
For more on GAIN and their support groups visit www.gain.org.au
Sources:
- *Sourced from Cancer Australia, Gynaecological cancer in Australia: https://gynaecological-cancer.canceraustralia.gov.au/statistics
- **Sourced from Womens Cancer Foundation: https://www.womenscancerfoundation.org.au/pages/research/statistics
- ***Sourced from Endometriosis Australia: https://www.endometriosisaustralia.org/research