Fighting for Better Care: The Endometriosis Journey with Donna Ciccia
Did you know that endometriosis affects an estimated 1 in 7 Australian women by age 49, yet diagnosis can still take over six years on average?
In this episode, Donna Ciccia, a health advocate and co-founder of Endometriosis Australia shares her powerful journey in founding the organisation and fighting for better outcomes for people with endometriosis. She opens up about the personal challenges that led her to take action, from living with chronic pain to juggling motherhood and managing her health. Donna discusses how a small online community of just 20 people has grown into a nationwide movement that helped launch the National Action Plan for Endometriosis, significantly improving awareness, research funding, and diagnosis timelines. She highlights the urgent need for personalised, interdisciplinary care, greater investment in research including into the microbiome, nutrition, and environmental triggers and improved access to diagnosis and treatment options. With honesty, warmth, and grit, Donna underscores the physical, emotional and financial toll of endo, while offering hope and practical pathways for others to advocate for themselves and build supportive networks.
Don’t miss this eye-opening episode where Donna Ciccia shares hard-earned lessons on advocacy, resilience, and how collective action is transforming the future for Australians living with endometriosis.
- How Donna co-founded Endometriosis Australia from a grassroots idea
- The early challenges of building a community and raising awareness around endometriosis
- Shocking statistics on endo diagnosis
- Why personalised, interdisciplinary care is essential for endo patients
- The impact of endometriosis on work, relationships, and mental health
- The importance of menstrual health literacy and breaking generational myths
- How Australia became a global leader in endometriosis research and data
- Donna’s insights on integrating natural therapies with conventional medicine
- The role of pelvic physiotherapy and nutrition in managing chronic pain
- Her advocacy for a subspecialty in complex gynaecology
- Exciting developments like the Charli app and AI-based ultrasound for endo
- Donna’s thoughts on future treatments, including GLP-1 medications and microbiome research
- Practical advice for self-advocacy and finding the right support as a patient
- Her mission is to empower women and lift up other not-for-profit founders
Donna Ciccia is a dedicated health advocate with over 15 years of experience in non-profit leadership, specialising in women’s health and chronic illness. As Deputy Chair and Co-Founder of Endometriosis Australia, Director at Chronic Pain Australia, and Director at Long COVID Australia, she has spearheaded national awareness campaigns, influenced health policy, and secured significant research funding. Passionate about amplifying patient voices, Donna is committed to driving systemic change in healthcare.
Connect with Donna Ciccia
- Website | www.donnaciccia.com.au and endometriosisaustralia.org
- Linked In | www.linkedin.com/in/donna-ciccia
- Facebook | www.facebook.com/donnaciccia
- Instagram | @donna_ciccia
