Australian Coalition for Endometriosis Newsletter February 2025
FUNDING ANNOUNCEMENT
ACE welcomes Australian Governments investment in better health outcomes for those living with Endometriosis and Pelvic Pain.
The Australian Government has announced a major healthcare package in response to community feedback and sustained advocacy efforts by the Australian Coalition for Endometriosis (ACE) and its member organizations.
From March 1, 2025, commonly used contraceptive pills like Yaz® and Yasmin® will be listed on the Pharmaceutical Benefits Scheme (PBS), reducing annual costs from $380 to just $126 or $30 with a concession card. This change will benefit around 50,000 people annually.
Additionally, bulk billing and increased Medicare rebates for IUDs and implants support more affordable health access options.
Jess Taylor, Chair of ACE, said:
“Our members told us they needed more access and affordable management options. We continue to advocate for our members policymakers, and this announcement is a direct result. These improvements provide a critical lifeline for people living with endometriosis.”
A key part of the package is the addition of 11 new Endometriosis and Pelvic Pain Clinics, expanding the network to 33 clinics nationwide.
“This is a significant win,” Jess Taylor said. “But our work doesn’t stop here—we’ll continue advocating for even more services and ongoing support.”
RESEARCH UPDATE
EndoZone is a research-based platform to help you or someone you know live well with endometriosis. The data you provide helps us to deliver tailored information to you. Learn more about how we will handle your personal information.
Imagendo aims to improve the diagnosis of endometriosis. The IMAGENDO® study aims to reduce the need for surgery and the time it takes to receive a diagnosis. Learn more here.
Learn more about ImageEndo and EndoZone by watching this webinar.
MEMBER ACTIVITY
Have your say on future priorities for endometriosis funding and policy in Australia by completing this survey.
As a national peak body for Endometriosis and Pelvic Pain, ACE delivered feedback from its members to Governments and this has informed the recent Australian Government investments.
We know the policymakers are listening. Please add your voice and invite representatives across the endometriosis and pelvic pain sectors to share their insights and lived experiences by completeing this survey. This feedback will be used to inform the priorities for addressing endometriosis in Australia in 2025 and beyond.
SECTOR NEWS
Australia is hosting the 6th World Congress on Endometriosis (the Congress) from 21-24 May 2025 in Sydney.
The Congress is a global event that will advance the understanding of patient treatment, patient care and the causes and consequences of the disease. It will bring together world leaders in the field to deliver engaging keynote presentations and invited speakers to lead seminar and symposia sessions. An innovative program has been designed to inform, stimulate discussion and collaboration across clinical, scientific and allied health professionals.
Registrations are open now. Early bird rates available until 14 March 2025.
The full program can be accessed here:
MARCH IS ENDOMETRIOSIS AWARENESS MONTH
Are you ready to raise your voice for Endometriosis in 2025?
March is just around the corner so its time to plan your Endometriosis Awareness Month activities! Please use the information provided to inform your own Endometriosis Awareness raising activities.
What is Endometriosis?
Endometriosis is a painful inflammatory condition where tissue similar to the lining of the uterus grows in other locations. Typically, this is within the pelvic cavity but can be in other parts of the body.
What is the prevalence in Australia?
It is estimated that 830,000 people in Australia have Endometriosis. In some states it is as high as 1 in 7 people who were assigned female at birth.
What are the symptoms?
The most common symptoms are:
- Pelvic Pain
- Cramping and/or heavy bleeding
- Pain during or after bowel movements
- Fertility concerns
- Fatigue
- Lower back pain
- Painful sex and sexual dysfunction
However, each person experiences the condition in a unique way.
What is Endometriosis Awareness Month?
Held in March each year, Endometriosis Awareness Month is a time dedicated to raising awareness of this disease that can significantly impact lives. There is no cure for Endometriosis. Time from onset of symptoms to diagnosis is often lengthy, diagnostic and treatment procedures are often painful and expensive and have variable impact on symptoms.
How to get involved?
TALK:
Normalise talking about menstrual health!
Did you know that the average menstrual blood loss each month is 3 tablespoons?
Did you know that period pain (not relieved by simple over the counter analgesia) is not normal?
Did you know that blood in your urine, shooting rectal pain after a bowel motion or bloating can all be signs of Endometriosis?
LISTEN:
Know someone who is already diagnosed?
Ask them to tell their story. You may be surprised to hear that their greatest complaints may not be about heavy periods but if fact around fatigue, anaemia, pelvic pain or brain fog?
SHARE: Customisable social media tiles coming soon!!!
In March, please add your voice to the Australian Coalition for Endometriosis callout for better support for endometriosis and pelvic pain in Australia but using
KEEP AN EYE ON YOUR INBOX FOR YOUR ACE CUSTOMISABLE SOCIAL MEDIA TILES!
Even if you dont have a personal story to tell, you may wish to use some of the statements below in your content for Endometriosis Awareness Month, March 2025:
1) “A hysterectomy is not a cure for Endometriosis. Endometriosis has no cure”
2) “I am dedicated to raising awareness of this disease that can significantly impact lives during Endometriosis Awareness Month.”
3) “An estimated 830,000 people in Australia suffer from this condition with a prevalence on 1 in 7 people in some states.”
4) “I don’t believe that anyone should have to suffer such a debilitating condition in silence.”
Suggested hashtags for social media posts
#endoawareness2025
#acendo
#endometriosisawarenessmonth
#austcoalitionforendo
#austcoforendo
#marchisendoawarenessmonth
Want to raise your voice louder?
Apply for membership of The Coalition for Endometriosis to add your story to ACE serves as the leading organisation for endometriosis in Australia, advocating for groups, associations, industries with related interests, and individuals affected by endometriosis. We act as a representative voice for these groups and individuals and welcome new membership applications.
Follow the Australian Coalition for Endometriosis!
Facebook: @acendometriosis
Instagram: @acendometriosis
Twitter: @acendometriosis