Wow, what an exciting, busy month it has been!

Thank you for joining us for our September 2023 edition of our national newsletter, brought to you amidst Jean Hailes’ Women’s Health Week (4th to 8th September).

On September 5, Women’s Health Week will be focusing on ‘pain drain’ conditions, in particular one that we are all familiar with: endometriosis. Keep up to date with our Instagram, Facebook, Twitter and LinkedIn feeds for more on Jean Hailes’ activities and Endometriosis Australia’s advocacy.

This month, I was pleased to be featured on 7News’ The Latest program to shed light on the Endo Gender Pay Gap, the challenges those living with endometriosis face in finding and retaining employment, the workplace support structures Endometriosis Australia’s Endo Au Workplace Assistance Program seeks to introduce through bespoke organisational policy development– sign up here –  along with the research underway in partnership with Western Sydney University Endo@Work project.  Interested employers can participate in the research here.

We have provided awareness and training to Hollard Insurance and others. We are incredibly  grateful to BildGroup for their $25,000 donation, which will support our Endo Au Workplace Assistance Program.. 

This week, I will be presenting at the Chief Executive Women’s (CEW) Leadership Summit in Melbourne and you can book to watch the livestream here. I am a proud Member of CEW and thrilled to have the opportunity to discuss endometriosis in the workplace and driving uptake of the Endo Au Workplace Assistance Program among female leaders of enterprise. 

We are thrilled to see this crucial research published in the Medical Journal of Australia, and appreciate the hard work of Dr Cecilia Ng and A/Prof Mike Armour and our co-founder Donna Ciccia in shedding light on the research priorities for #endo Thank you to all the Endometriosis Australia Education and Discussion Group on Facebook which has 16,200 members.

The research authors state “We developed priority areas for endometriosis research by polling members of the Endometriosis Australia’s closed Facebook group. We surveyed online not only people with a diagnosis of endometriosis but also their friends and family. The survey was circulated via Endometriosis Australia’s social media platforms (Facebook, Instagram) and their mailing list. People were asked to rank the 16 identified research areas (five general and 11 specific) in order of importance from 1 (most important) to 16 (least important). We received 1169 completed responses, from those with endometriosis (91.3%), family members (4.7%), partners (2.4%) and friends (1.6%). The top 10 (in order) were: 

• Does repeat surgery for endometriosis improve patient outcomes? 
• What is the effect of moderate to severe endometriosis on fertility? 
• What early life factors may predispose to endometriosis? 
• What is the financial burden of living with endometriosis? 
• Can ultrasound reliably detect early endometriosis without surgery? 
• Is there a blood test that could screen for endometriosis early? 
• What is the efficacy of using medical cannabis for endometriosis-associated symptoms? 
• What is the quality of life and psychological impact of endometriosis? 
• What is the effect of diet and lifestyle interventions (like engaging in regular, graded exercise) on the symptoms of endometriosis? 
• What is the efficacy of using melatonin for endometriosis-associated symptoms?.” 

 The Research Grant Program has there findings listed as priority areas for research and applications will be received until 7 September. 

Elsewhere, I attended EndoZone Community Stakeholder meeting in Adelaide, South Australia to join with colleagues in discussing priorities for Phase Two of the project.

I was also invited to join the Endometriosis Management Plan (Endo-MP) project Steering Committee, to support navigation and management of endometriosis for General Practitioners, health providers for their endometriosis patients. This is being delivered by in collaboration with the RACGP through Sphere at Monash University and they are currently recruiting GPs and those living with endometriosis and chronic pelvic pain.

I am pleased to announce that Endometriosis Australia, as a peak body endometriosis patient organisation, will set up and run the the National Endometriosis Clinical and Scientific Trials Australian Endometriosis Clinicians Collaborative (AECC) Community Engagement Committee, and assist the AECC Steering Committee under NECST. This is a testament to our continually advocating for the needs of those with Endo and we look forward to working with our Endometriosis Australia co-founder,  Principal Investigator and Chair of NECST Professor Jason Abbott, along with Clinical Trials Network Manager Dr Cecilia Ng.

Additionally, Endometriosis Australia will be hosting a High Tea event in Hobart, Tasmania, on Saturday 28 October 2023. The Minister for Health, Guy Barnett MP and Minister for Women Madeline Ogilvie will be attending.  We will be sharing the invitation next week on socials – if you live in Hobart, save the date!

This coming month, Endometriosis Australia looks forward to heading to Adelaide on 16 September for the South Australia Football Association Women’s Final, with the sponsors Go Sunny Solar, who are also raising much needed funds for Endometriosis Australia. For every donation made, Go Sunny Solar will match the donations for up to $5000! For every goal scored, Go Sunny Solar will donate $250, helping Endometriosis Australia reach our goals of awareness, research and education.

Also last week I was delighted to attend the Julia Arygrou Centre Endo Support Group with our Stakeholder Engagement Manager Liz Walker, to hear our newest Endo Champ Maddy Foster, personal stylist, inspire with her passion for fashion, modifying for the endo bloat and post-surgery dress options. We are looking forward to the Exhibition, Into the Rabbit Hole on Sunday 22 October 2023 by Australian Engineer and Artist’s, Jess Coldrey.

I’ll be joining a panel discussion with Julia Argyrou Centre for Endometriosis (JAECE) at Epworth’s interim CEO Dr Samantha Mooney. The exhibition aligns with the end of Melbourne Fringe Festival and is being partly sponsored by Stonnington Council and partly by Endometriosis Australia. The Exhibition, Into the Rabbit Hole, delves deep into the experience of endometriosis— drawing inspiration from her personal experiences and dreams during her laparoscopy surgery. Jess showed her work at Hudson Institute for Medical Research last year as part of the Endo in Art exhibition, where I was delighted to speak.

Read more exciting announcements here.

Maree Davenport
CEO Endometriosis Australia

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