James Cook University researchers launch groundbreaking study to understand both sides of the diagnostic journey, and why it takes over seven years on average to receive answers
A groundbreaking study launched by James Cook University in January 2025 is taking a unique approach to understanding one of the most persistent challenges in women’s health: the devastating diagnostic delays that affect endometriosis and adenomyosis patients. Unlike previous research that focuses primarily on patient experiences, this study is actively seeking the perspectives of general practitioners (GPs) to understand the barriers they face when diagnosing these complex conditions.
The Scale of the Problem
The statistics are sobering: in Australia, at least one in nine girls and women are diagnosed with endometriosis, yet the average diagnostic delay remains over seven years from symptom onset to confirmed diagnosis. This delay represents years of dismissed pain, failed treatments, deteriorating quality of life, and often, significant financial burden for patients and families seeking answers.
Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus, while adenomyosis involves this tissue growing into the muscular wall of the uterus itself. Both conditions can cause debilitating pain, heavy bleeding, fatigue, and fertility challenges, yet they remain poorly understood and frequently misdiagnosed or overlooked entirely.
Understanding the Patient Experience
Recent Australian research has revealed alarming patterns in diagnostic experiences. A comprehensive mixed-methods study published in 2025 found that Australian patients reported an average diagnostic delay of 12.3 years, though this appears to be shortening slightly for those who first consulted a GP after 2018 (averaging 4.7 years).
The research identified several key factors contributing to longer delays, including:
- Dismissal and disbelief by medical professionals as the most common barrier
- Seeing a higher number of doctors before receiving diagnosis
- Queer identity as a risk factor for extended delays
- Financial barriers preventing access to specialized testing and care
Women consistently report their severe pain being dismissed as “normal” menstrual discomfort, leading to years of invalidation and delayed appropriate care.
The Missing Piece: Healthcare Provider Perspectives
What makes the James Cook University study particularly valuable is its focus on understanding the GP perspective – a voice that has been largely missing from endometriosis research. Dr. Lauren Shaw, Principal Investigator and JCU Head of Psychology, explained the rationale: “It’s not particularly well understood what challenges GPs are facing in this area, which is why we want to talk to them”.
Previous research with Australian GPs has identified several systemic challenges that contribute to diagnostic delays:
- Clinical Complexity: Endometriosis and adenomyosis symptoms often overlap with other common conditions like irritable bowel syndrome, making differential diagnosis challenging. Symptoms can be variable, fluctuate in severity, and may not fit typical presentation patterns.
- Time and Resource Constraints: The complex symptomatology of these conditions often requires multiple consultations to sort through, but GPs face significant time and financial pressures in practice. Many report feeling they lack adequate time to properly investigate gynecological complaints.
- Educational Gaps: Studies have highlighted limited understanding, education, and training opportunities for healthcare professionals regarding endometriosis and adenomyosis. Many GPs report “learning on the job” rather than receiving formal training on these conditions.
- System-Level Barriers: Even when GPs suspect endometriosis, delays occur due to difficulty accessing specialist services, unclear diagnostic pathways, and lack of validated screening tools for primary care settings.
Cultural and Social Factors
The research also highlights significant cultural and gender bias challenges that GPs must navigate. Healthcare providers report difficulties in:
- Addressing varying levels of health literacy among patients
- Managing cultural factors that may influence how women present symptoms or seek care
- Overcoming perceived gender biases in pain assessment and validation
- Balancing patient-centered care with competing clinical priorities
Some women don’t seek care under the assumption that painful periods are normal, while others may not emphasize the severity of their symptoms to healthcare providers.
Regional and Accessibility Challenges
The James Cook University study focuses specifically on North and Far North Queensland, addressing a critical gap in research on regional healthcare access. Rural and regional patients often face additional barriers including:
- Limited specialist availability and longer wait times
- Geographic barriers requiring travel for diagnostic procedures
- Financial barriers amplified by travel and accommodation costs
- Reduced screening opportunities due to fewer healthcare touchpoints
Dr. Shaw noted: “There’s a limited amount of research that looks at this issue in a regional context, so given our place in the world, we see that as a stepping stone to being able to do more research with interested industry partners”.
The Dual Condition Challenge
Importantly, this study examines both endometriosis and adenomyosis together — a approach that addresses a significant research gap. While endometriosis has received more research attention, adenomyosis remains poorly understood despite affecting a substantial number of women and often co-occurring with endometriosis.
Dr. Shaw explained: “There is a lot of research that exists on the diagnostic experiences of women who have endometriosis, but what that doesn’t really tell us about is what it’s like to have adenomyosis as well”.
Methodology and Future Impact
The study involves 30-40 minute interviews with approximately 15 GPs from North and Far North Queensland, conducted via Microsoft Teams to improve accessibility for regional practitioners. This qualitative approach allows for in-depth exploration of the complex factors that influence GP decision-making and diagnostic processes.
The research forms the foundation of a broader 18-month research project that aims to build a comprehensive knowledge base with health and government services in the region. The ultimate goal is to improve diagnostic approaches and reduce the current unacceptable delays that affect so many women.
Implications for Change
This research has the potential to inform several critical improvements:
- Education and Training: Understanding GP challenges can inform targeted educational programs and clinical training initiatives to improve recognition and management of these conditions.
- System Reform: Identifying system-level barriers can guide policy changes to improve access to diagnostic services and specialist care, particularly in regional areas.
- Clinical Guidelines: GP perspectives can inform the development of more practical, evidence-based guidelines for primary care diagnosis and management.
- Collaborative Care Models: Understanding both patient and provider experiences can facilitate development of more effective collaborative care approaches between GPs, specialists, and allied health professionals.
The Path to Better Care
The significance of this study represents a crucial step toward addressing one of the most persistent injustices in women’s health. By seeking to understand the full picture of diagnostic delays from both patient and provider perspectives, researchers are working toward solutions that can realistically be implemented within existing healthcare systems.
For the millions of women currently experiencing diagnostic delays, studies like this offer hope that systemic change is possible. However, the research also underscores the urgent need for immediate improvements in how we recognize, validate, and respond to women’s pain within healthcare settings.
The study team, comprising Dr. Lauren Shaw, Dr. Helena Radke, Dr. Marie McAuliffe, and Professor Cate Nagle, continues to seek GP participants from North and Far North Queensland to contribute their valuable perspectives to this important research.
Sources
- James Cook University. Endometriosis study calls for GP voices. January 14, 2025. Available at: https://www.jcu.edu.au/news/releases/2025/january/endometriosis-study-calls-for-gp-voices
- Merone, L., et al. ‘A name to the pain’: A mixed methods analysis of endometriosis diagnostic delay in Australia. Australasian Journal of General Practice, 2025. Available at: https://pubmed.ncbi.nlm.nih.gov/40347539/
- RACGP (Royal Australian College of General Practitioners). Challenges in diagnosing and managing endometriosis. September 23, 2024. Available at: https://www1.racgp.org.au/ajgp/2023/august/challenges-in-diagnosing-and-managing-endometriosi
- QENDO Australia. The Psychosocial Impacts of Adenomyosis in Australia. August 6, 2025. Available at: https://www.qendo.org.au/research-surveys/beyond-the-pain-the-psychosocial-impacts-of-adenomyosis-in-australia
