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.
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:
- Centring the Voices of Young People
- Best Practices & Latest Innovations in UK Period Poverty Initiatives
- Inclusivity & Diversity – UK Expert Views
- Evidencing & Evaluating Period Poverty Initiatives for Impact
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.