Endo Blog

The October 2023 edition of our national newsletter
5 mins read |
The October 2023 edition of our national newsletter

Welcome to the Endometriosis Australia Mental Health Month edition.
We understand how endometriosis can affect your mental health as well as its physical symptoms, so we encourage everyone living with endometriosis to indulge in some self-care this month and consider how to make it part of your daily routine. For more information about the impact of Endometriosis on mental health and wellbeing, tips and information on Endometriosis and mental health, click here.

National Action Plan on Endometriosis (NAPE)
Endometriosis Australia welcomed the opportunity to apply for Federal Government funding under the National Action Plan on Endometriosis (NAPE) Public Health and Chronic Disease Program Increasing Awareness of Endometriosis in Priority Populations and anticipates a response this month.

Funding will assist us in providing greater advocacy to the government to ensure awareness of the needs of the endometriosis community, to lobby for subsidised support in the health system, awareness of symptoms of endometriosis among the undiagnosed girls, women and those assigned female at birth, earlier diagnosis and referral to gynaecologists and for fertility advice, treatment and symptom management, workplace assistance promotion, engagement with those challenged by intersectional disadvantages and to be the interface between the endometriosis community and the researchers committed to finding answers.

Australia Institute of Health and Welfare Endometriosis in Australia
On 20 September the Australian Institute of Health and Welfare (AIHW) released its report, Endometriosis in Australia.

The finding confirms what we suspected – endometriosis is more common than previously identified – 1 in 7 or around 14% of women aged 44–49 are living with this life-defining, debilitating condition, and this is key to estimating the prevalence of the incurable disease. You can read Endometriosis Australia’s response here.

As always, we are at the forefront of advocacy and media engagement on behalf of those living with endometriosis and those who care for you – family, friends and workmates. Conversations with all major television stations, radio stations nationally, local, regional and major news outlets have resulted in much greater awareness of the severity and impact of endometriosis. 

Our social media is always a great source of information, please follow us on Facebook, Instagram, LinkedIn, Twitter, and Youtube.

I was pleased to spread the word about endometriosis and the impact on women at the Chief Executive Women Agenda 2023 Leadership Summit in Melbourne. As a Member of CEW, I value the advocacy of ‘Women Leaders Empowering All Women.’ I was pleased to speak on a panel about the extent of and life defining impacts caused by endometriosis. I encouraged registration for the EndoAware Workplace Accreditation Program, and spoke to many influential leaders, including the CEOs of Macquarie Group, BHP and other major enterprises about the needs of those living with endometriosis. The report Unlocking Leadership: Conversations on Gender and Race in Corporate Australia was launched and can be accessed here.

Thank you, Go Sunny Solar, for raising awareness and much needed funds to support Endometriosis Australia as sponsors of the Women’s Football final series in Adelaide. I was delighted to attend the final, with 2200 cheering the teams, and to receive a cheque for $12,500 for vital advocacy work.

Working with Endometriosis Australia to raise awareness of endometriosis and change the way we discuss menstruation is a shared focus of Leanne Trimbola OLY, who played for the Matildas in the 2000 Sydney Olympics, Jane Rathjen, Football SA’s board member and chair of Legacy Committee and Kimberley Conte, Head of the Women’s World Cup.

FRENDO EVENTS

SYDNEY

While we are on fitness, Endometriosis Australia is grateful to endometriosis advocate Kayla Itsines and her team for donating a booth at the FitHer this weekend 7 and 8 October, Hall 1, at the International Convention Centre, Darling Harbour Sydney. Come and say hi if you can attend.

We are proud to support Libby Parker’s Cabaret Show, ‘Endo Days’ in Sydney. The show looks at the reality of living with #endometriosis and stories of those within the community. Having been diagnosed aged thirty six, Libby is dedicated to finding the lighter side of chronic illness.

  • Date: Friday 6th October 2023 – Saturday 7th October 2023
  • Time: 6.30PM-7.30PM
  • Location: The Red Rattler Theatre

Click here to book your tickets today.

HOBART

The Hobart High Tea on Saturday 28th October is an opportunity to catch up with the local endometriosis community. Guest speaker Minister for Women Madeleine Ogilvie MP will be joined by our Clinical Advisory Committee member Dr Leesa Van Niekerk, Director of the University Psychology Clinics at the University of Tasmania, and Dr Kristen Connan, RANZCOG, Hobart Obstetrician & Gynaecologist with a passion for improving women’s health through empowerment, support and education. Tickets can be purchased here.

ENDOMETRIOSIS MARCH AWARENESS MONTH

Please consider how you can help us to spread the word in March and raise awareness. You could host an event in your school hall, town hall, city hall, your workplace, and sporting clubs. We will provide the assistance and guidance you need. We are keen to hear your ideas for fundraising too, email supporter@endoaustralia.org

We also encourage you to share your story with your local media – we can help you with contacts and a letter of introduction. In turn, this platform provides a voice to those suffering symptoms, who are undiagnosed, feeling isolated, misunderstood, dismissed and disrespected. Email us at admin@endoaustralia.org.au

Please remember – you are not facing this endometriosis journey alone. We stand in front of you, beside you and behind you. We can help you navigate the maze.

HAVE YOUR SAY – STAKEHOLDER ENGAGEMENT FORUMS

Register here.

The Endometriosis Australia Stakeholder Engagement Forums (SEFs) members provide advice on, guide thinking regarding, and develop programs relating to improving the health and wellbeing of the endometriosis community.

The SEFs core groups are:

  • Community Engagement Forum
  • Clinical Engagement Forum
  • Research Engagement Forum
  • Workplace Engagement Forum
  • Support Services Engagement Forum – consumer and community organisations.

Endometriosis Australia represents all stakeholders in the sector, and communicates with the Commonwealth, State and Territory governments on the needs of those with the disease, the clinicians, allied and complementary medical practitioners treating them, and the research community identifying best practice to manage symptoms and treat the disease.

The Purpose of Advisory Groups is to enable Endometriosis Australia to consult relevant stakeholder members in discussions to formulate and respond to policy affecting the endometriosis community.

EndoAware WORKPLACE ACCREDITATION PROGRAM

Please register your interest here.

Endometriosis Australia’s Workplace Assistance Program enables organisations to sustainably and strategically take meaningful action to support their employees with endometriosis.

Based around the core pillars of Process, Policy and Promotion, EndoAware Workplace Accreditation provides tangible and practical benefits for employees suffering from endometriosis and employers, ultimately improving productivity and wellbeing for staff and their workplaces.

Interested in becoming an accredited Endo Au Workplace Assistance employer?

Questions? Email endoatwork@endoaustralia.org

RESEARCH

Did you know that endometriosis being as common as diabetes? Yet, the National Health and Medical Research Council (NHMRC) has expended only $18.9 million towards research relevant to endometriosis between 2000 and 2022, and Medical Research Future Fund (MRFF) has funded only 11 grants with a focus on endometriosis research since its inception in 2015?

Since 2017, $400,000 has been distributed through the Endometriosis Australia Research Grant. There is $200,000 to share this year, thanks to the gift of philanthropy through the Eden Foundation. We have received 31 applications for the grant with a total value of $2,325,152.

The Endometriosis Australia research grant impact is evidenced by, for example, Imagendo and our seed funding supported the groundbreaking findings by Prof Caroline Ford and our co-founder Prof Jason Abbott, and the team at Royal Women’s Hospital. Researchers have successfully grown tissue from all known types of endometriosis in a lab and observed the changes in the cells after different treatments.

You can also help find faster diagnosis, management of symptoms and ultimately, a cure, by being part of the solution – medical research projects are advertised on our website and we welcome your participation.

Your input also informs the priorities for you and the endometriosis community. Please take the time to complete surveys when invited to do so. Your input into our Endometriosis Australia national survey has established the research priorities of Australians affected by endometriosis. See the findings here.

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Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.