Improving menstrual health and endometriosis care in the UK

Birmingham City University’s health research shaped national and international clinical guidance on endometriosis and led to new training for healthcare professionals, improving care for the estimated 1.5 million women in the UK with the condition.  It has also contributed to the introduction of mandatory menstrual education for 7.25 million pupils in England and to wider societal conversations about menstrual taboos.

Research from BCU is focusing on improving menstrual health and endometriosis care in the UK

Research Summary

Endometriosis, the growth of endometrial-like tissue outside of the uterus, is the second most common gynaecological condition in the UK. The chronic, incurable condition can cause severe pelvic pain; painful menstruation; dyspareunia and infertility. Within the UK, patients face an average delay of 8 years for a diagnosis. Menstruation misconceptions exacerbate the hidden nature of the condition. 

BCU research revealed how endometriosis dramatically shapes every aspect of women’s lives and how, for nearly two decades, women continue to face prolonged diagnostic delays and dismissal of their symptoms by healthcare professionals.

Research Background – evidencing the impact of endometriosis and delayed diagnosis

Professor Emeritus Elaine Denny’s research was the first in the UK to evidence women’s experiences of prolonged diagnostic delay.  It found that despite severe and debilitating pelvic pain, health practitioners often dismissed symptoms as typical menstrual pain. 

Her work also captured how those with the condition live with uncertainty about their fertility and if their pain symptoms will ever improve, evidencing the need for improved patient-practitioner communication and information and support for women. It also highlighted the need for culturally sensitive and appropriate endometriosis information and supports.

Dr Annalise Weckesser and Denny carried out research on  experiences of endometriosis treatment, evidencing how women “feel desperate” and are “willing to try anything” for symptom relief. It also evidenced how, nearly two decades on from Denny’s original research, women continue to report dismissal of their pain symptoms and prolonged diagnostic delay. 

Outcomes and impact – improving care and reducing stigma 

Denny’s  research informs the first ever guidance for the diagnosis and management of endometriosis, produced by the National Institute for Health and Care Excellence,  as well as European guidance on endometriosis management. Her work shaped guidance on the importance of believing women’s symptoms and providing information and support that meets the needs of a diversity of patients.

The Women’s Health APPG Inquiry, ‘Informed Choice? Giving Women Control of Their Healthcare’ extensively cited Denny’s work to call for improved training on endometriosis training for health practitioners. This led to the Royal College of General Practitioners and Royal College of Obstetricians and Gynaecologists introducing new training modules to promote awareness of endometriosis symptoms and treatment amongst practitioners within and outside of the UK.  

The APPG Inquiry, again drawing on Denny’s work, called for improved menstrual health education to enable girls and young women to better identify potential symptoms of endometriosis. This led to the Department for Education introducing mandatory menstruation education for 7.25 million pupils primary and secondary students in England.

Brook, the sexual health service and education charity for young people, and Plan International UK, the international children’s charity, commissioned Dr Weckesser and colleagues to create a series of evidence-based resources for the Let’s Talk. Period initiative. These resources provide a ‘go to guide’ for the menstrual health sector:

BCU’s research shaped public conversations on endometriosis awareness and menstruation stigma. Research by Denny and Weckesser featured in multiple articles on endometriosis in high profile media outlets with large national and international readership, including The Independent, The New Statesmen, and The Daily Express.

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Professor Emeritus Elaine Denny, whose work centres on endometriosis care

Professor Emeritus Elaine Denny

Professor of Health Sociology

Elaine has undertaken over twenty years of sociological research on endometriosis in the United Kingdom and is a national expert on women’s experiences of the condition. She has published work on women’s experience of IVF, the experience of endometriosis, and on the occupation of nursing.

annalise

Dr Annalise Weckesser 

Senior Research Fellow

Annalise is a medical anthropologist and co-leads the Gender, Family and Health Research Cluster.  Her research explores the gendered experiences of reproductive, sexual, and menstrual health.  She co-founded the International Endometriosis Social Research Network.


Angela Hewett Staff profile

Dr Angela Hewett 

Senior Lecturer in Health Psychology

Angela specialises in health psychology and has a keen interest in gender and health and in health inequalities. Angela has also worked in public health at both Birmingham City University and the University of Liverpool, and has experience of working in practice as a Health Promotion Coordinator, with a focus on mental health promotion.


Gemma Williams

Gemma Williams

Research Fellow

Gemma’s research interests include women’s health (focusing upon menstruation), the experiences of people with chronic health conditions, and mental health. She is currently undertaking a PhD, looking at menstrual equity and chronic health.


Amie Randhawa is a PhD student currently conducting research into teens' experiences of endometriosis.

Amie Randhawa 

Researcher

Amie is a doctoral candidate undertaking the first UK-based study on teenagers’ experiences and knowledge of endometriosis. Amie is one of 50 STEAM Scholarswhose research is funded as part of BCU's initiative to create new subject knowledge and to power cultural, societal and economic improvements in the West Midlands.