Research involving the University of Sheffield is helping to tackle one of the biggest challenges facing people with endometriosis: the long and often frustrating wait for a diagnosis.
Dr Rebecca Mawson, NIHR Clinical Lecturer in Primary Care at the University of Sheffield, is part of an international research team investigating why people can wait seven to 12 years for an endometriosis diagnosis – and what can be done to change this.
Dr Mawson said: “Our project asks: where exactly are people getting lost or let down on their journey to diagnosis, and how can we map those points in a systematic way to identify where interventions could make a real difference.”
Endometriosis affects an estimated 1.5 million women and people in the UK, yet there is currently no consistent way of measuring where and why delays happen.
The project is led by Dr Babu Karavadra, NIHR Academic Clinical Fellow in General Practice at the University of Liverpool, who has been awarded a World Endometriosis Society Early Career Investigator Award as Lead Principal Investigator at the University of Liverpool.
The research will bring together researchers, clinicians and people with lived experience to develop the first standardised framework for understanding the endometriosis diagnostic journey.
Dr Mawson said: “Primary care needs to be at the heart of this work. Primary care is often where people first seek help with their symptoms, so it has a crucial role in understanding diagnostic delay.
“If we only look at what happens once someone reaches specialist gynaecology, we risk missing some of the barriers that shape the journey long before that point.”
Unlike cancer research, where internationally recognised standards exist for studying diagnostic delays, endometriosis research has been more fragmented, with studies measuring different parts of the journey in different ways.
The team will review existing evidence, gather experiences from people living with endometriosis and bring together an international panel to map the diagnostic pathway and agree common definitions for key points along the journey.
A particular focus will be on people whose experiences are often missing from research, including Black women, people living in rural or deprived areas, LGBTQ+ communities and disabled people.
The researchers hope to create an ‘Endometriosis Diagnostic Pathway Framework’, a practical resource that can help researchers identify where people are falling through the gaps and where healthcare could be improved.
The team will also develop a ‘Snakes and Ladders’ style visual representation of the diagnostic journey, illustrating how systemic barriers, chance and individual experiences can influence whether someone reaches a diagnosis.
The project brings together researchers from the University of Sheffield, University of Liverpool, University of Oxford, Aarhus University in Denmark and the University of Edinburgh, alongside Endometriosis UK.
It forms part of the PEARL network (Primary care Endometriosis and Adenomyosis Research and Learning), an international collaboration bringing together primary care and community researchers and clinicians.
For Dr Mawson, the ultimate aim is to move away from accepting diagnostic delay as an inevitable part of living with endometriosis.
“Endometriosis diagnostic delay isn't inevitable. If we can understand where and why people are experiencing barriers, we have a much better chance of designing interventions that actually make a difference.
“The scale of the problem demands that we look at the whole journey, listen to the people experiencing it and build an evidence base that can lead to real change.”
The framework could provide the foundations for future research, clinical guideline development, healthcare professional training and NHS service improvements, with potential applications to related conditions such as adenomyosis and chronic pelvic pain.
For the millions of people living with endometriosis, the hope is that this research can help turn years of pain, uncertainty and waiting into earlier answers and make a long wait for a diagnosis something that future generations no longer have to accept.