Fighting for Better Care:
The Endometriosis Journey with
Donna Ciccia
How lived experience, advocacy, and collective action are reshaping care for Australians with endometriosis
Endometriosis affects 1 in 7 Australian women by age 49 — yet most still wait more than six years to receive a diagnosis. In this eye-opening episode of the Australian Weight Loss Surgery Podcast, host Jacqui Lewis speaks with health advocate and Endometriosis Australia co-founder Donna Ciccia about her personal journey, the national movement she helped launch, and the future of women’s health.
🔍 Why This Episode Matters
Too often, endometriosis is dismissed as “just bad periods.” Donna Ciccia shares why this perspective fails to capture the real impact — and how Australia is now leading the charge for better research, earlier diagnoses, and personalised, interdisciplinary care.
“Endometriosis isn’t just a period problem — it’s a whole-body, life-altering disease.”
Meet the Guest: Donna Ciccia
With over 15 years of nonprofit leadership, Donna Ciccia is a driving force behind multiple advocacy organisations, including:
- Endometriosis Australia (Co-Founder & Deputy Chair)
- Chronic Pain Australia (Director)
- Long COVID Australia (Director)
She’s helped secure millions in research funding, co-create the National Action Plan for Endometriosis, and shift public conversation from stigma to science.
⚖️ What We Still Get Wrong About Endo
“You can have stage one and be bedridden. You can have stage four and be functioning.”
That’s the enigma of endometriosis: the clinical stage doesn’t always match the lived experience. Donna calls for a new framework that recognizes endo as multiple diseases — not one. Unlike cancer, which has dozens of subtypes, endometriosis is still treated as a singular condition, limiting treatment pathways and research clarity.
📊 Fact: Despite its prevalence, endometriosis is still under-researched — with many doctors unaware of non-pelvic symptoms like bloating, fatigue, and pain beyond menstruation.
🧠 Science + Lived Experience: The Knowledge Gap
Donna highlights urgent needs in care and research:
Early, accurate diagnosis
Microbiome research and environmental factors
Natural therapies alongside clinical care
AI-based ultrasound for early detection
Menstrual health literacy from adolescence
She also supports access to pelvic physiotherapy, personalized nutrition, and a gynaecology subspecialty for complex cases.
“We need to stop treating people like symptoms. This is a whole-person disease.”
🛠️ Solutions, Support & What’s Next
📱 Tech-Driven Tools:
New platforms like the Charlie App help patients track symptoms, prep for appointments, and advocate for themselves.
💡 Patient Empowerment:
Donna believes that knowledge = power. When people understand their own symptoms, they can push for answers and connect with the right professionals.
🤝 Community Over Isolation:
From 20 people in a Facebook group to a national organisation, collective action is transforming the endo landscape in Australia — and beyond.
🎙️ Listen + Learn More
🎧 Fighting for Better Care: The Endometriosis Journey with Donna Ciccia
🎙️ Hosted by Jacqui Lewis on the Australian Weight Loss Surgery Podcast
🔗 Listen now:
🌐 donnaciccia.com.au
📱 Instagram: @donna_ciccia
💼 LinkedIn: Donna Ciccia
💬 Final Thought
Endometriosis is invisible to the eye — but not to those who live with it. As Donna reminds us, change doesn’t start with a cure — it starts with being believed.
Whether you’re a patient, provider, or supporter, this episode is a masterclass in advocacy, resilience, and community-driven healthcare reform.
Have you or someone you love been affected by endo?
💬 Drop your thoughts below — or share this blog to help spread awareness and hope.
#EndometriosisAustralia #JacquiLewis #ChronicIllness #WomenInHealth #InvisibleIllness #EndoSupport #PodcastAustralia #PatientAdvocacy #EndoEducation #HealthEquity #WholeBodyHealth
