Written evidence from Susara Blunden RM, Women’s Health Research Midwife and Dr. Edwin van Teijlingen, Professor of Reproductive Health, Bournemouth University, Fiona Yelnoorkar RN, RM, Senior Research Leader, National Institute for Health and Care Research, and Priscilla Fernandez, RN RM, Specialist Research Nurse/Midwife, Edinburgh University [RGW0073]

Supported by:

Bev Livesey, RM. Senior Women’s and Child Health Researcher. 

Steph Grigsby, RM. Senior Women’s and Child Health Researcher.

Katrina Rigby, RM. Senior Women’s and Child Health Researcher and Senior Research Leader.  Friend to women with endometriosis.

Danielle Hake, RM. Senior Research Midwife. Friend to women with endometriosis.

Jennifer Syson, RM. Lives with endometriosis.

Situation

This evidence is largely produced by Bournemouth University (BU) where BU academics have been working on bringing findings from a systematic review of high-income countries’ clinical guidelines around diagnosing endometriosis, which includes caring for young people.  Whilst we are aware of some of the on-going research at other UK universities such as that at the University of Edinburgh, where academics are contributing to the ESPRIT2 study, the largest global randomised controlled trial on endometriosis, will have results in Spring 2026 on the effectiveness of surgery on the most common sub-type of endometriosis (80% of all sufferers).  

Background

Endometriosis costs the UK economy an estimated £14 to 20 billion pounds a year (Simoens et al 2012) .  Nearly one in ten of all women of childbearing are affected by it.  Given diagnosis times have increased to an average of almost 9 years, the impact to the UK economy will be higher for girls and young women.  Their youth means they are less likely to be diagnosed, thus experience physical and mental health symptoms without professional support, which includes access to pain relief.  Many will find their education and jobs interrupted/affected (Missmer et al 2021). People awaiting endometriosis diagnosis are a known high intensity user group of NHS GP and A&E services, as previous All Party Parliamentary Groups, surveys and confidential enquires have reported.

Endometriosis impacts fertility so many girls and young women affected will need NHS assistance to become pregnant, raising the cost of fertility services, or women foregoing pregnancy entirely. Young people that manage to get a GP referral onto the endometriosis diagnostic pathways are likely to have laparoscopic surgery, the current ‘gold standard’ method for diagnosis. This can affect fertility by causing scar tissue and adhesions.  It is worth noting 60% of first investigational surgeries for endometriosis have a negative result as the disease can be difficult to visualise and diagnose, also, endometriosis migrates and is not always found in the pelvic cavity. 

Assessment

We  need increased  and accessible funding in the UK for endometriosis research projects including investigations into non-hormonal treatments and more holistic pain management regimes.  New studies must include girls and young women from time of diagnosis onwards, helping them to have improved health and social outcomes and better quality of life than women living with endometriosis currently.   Specialist reproductive health and childbirth (RH&C) research midwives and nurses are needed to deliver these studies on the NHS frontline. They are also instrumental in identifying and approaching hard to reach communities, and, subsequently, building relationships to encourage research participation by as diverse a population as possible. Young people and women of childbearing age have been identified by the National Institute of Health and Care Research (NIHR)(2024) as underserved communities. By involving young people, and ethnically and racially diverse groups within this population, it ensures endometriosis research is more likely to be acceptable and its findings more likely to be replicable, relatable and beneficial across UK society. 

The Women’s Health Strategy for England and Scotland’s Women’s Health Plan recognise the importance of raising the profile of research and increasing the number of opportunities for women to participate in research studies with endometriosis being a priority area of care.  However, research delivery nursing and midwifery leaders across the UK report that funding and resources for frontline staff is being frozen, indirectly cut by not replacing staff who leave or reduce their working hours, or diverted to specialities who run more profitable commercial studies. 

Anecdotal evidence suggests that this has led to fewer women are now being offered opportunities to participate in important research studies, contradicting the Chief Nursing and Midwifery Officers for England and Scotland.  They stress that a “sustainable, supported research workforce,” (NHS England 2021) is vital for improving healthcare outcomes. Despite cuts RH&C consistently offers significantly more opportunities for research participation than the majority of other specialty areas in order to meet the needs of girls, women and their families despite years of historical underfunding.

The lack of RH&C research delivery staff impacts the quality of study delivery meaning that research takes longer to produce findings, includes a smaller number of recruits and a less diverse population.  This in turn disadvantages the physical, mental and reproductive health of girls and young women, now and in the future.  It also puts additional strain on NHS services and reduces girls and young women’s gross value added to the economy and society.

Recommendations

• Regard endometriosis research with the same importance as systemic diseases such as diabetes.
• England to mirror Scotland’s pledge of reducing the endometriosis diagnosis time to less than one year by 2030.  This will provide a better quality of life for girls and young women.    

• Provide national guidance or statute on ring-fencing funding for the development and delivery of RH&C research which all stakeholders highlight as needing prioritising.
• Support capacity development initiatives that create frontline roles that facilitate the delivery of life-altering research to girls and young women.  Ensure there is equipoise within RH&C for studies to be supported that do not generate income.  The results from income and non income generating studies both are equally valid. 
• Fund an advisory group of frontline RH&C research delivery leaders to advise universities and industry on maximising research impact and research recruitment within the NHS and help support the next generation of researchers.  There is an active group however many members do this role voluntarily, alongside full-time clinical roles, limiting their capacity and scope.    

References

Missmer, S. A., Tu, F. F., Agarwal, S. K., Chapron, C., Soliman, A. M., Chiuve, S., Eichner, S., Flores-Caldera, I., Horne, A. W., Kimball, A. B., Laufer, M. R., Leyland, N., Singh, S. S., Taylor, H. S. and As-Sanie, S., 2021. Impact of Endometriosis on Life-Course Potential: A Narrative Review. International Journal of General Medicine, 14 (null), 9-25.

NHS England, 2021. Making research matter. Chief Nursing Officer for England’s strategic plan for research.  Available from:  https://www.england.nhs.uk/wp-content/uploads/2021/11/B0880-cno-for-englands-strategic-plan-fo-research.pdf [Accessed 12th September 2025].

National Institute for Health and Care Research, 2024. Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project. Available from https://www.nihr.ac.uk/improving-inclusion-under-served-groups-clinical-research-guidance-include-project [Accessed 15th September 2025]

Simoens, S., Dunselman, G., Dirksen, C., Hummelshoj, L., Bokor, A., Brandes, I., Brodszky, V., Canis, M., Colombo, G. L., DeLeire, T., Falcone, T., Graham, B., Halis, G., Horne, A., Kanj, O., Kjer, J. J., Kristensen, J., Lebovic, D., Mueller, M., Vigano, P., Wullschleger, M. and D’Hooghe, T., 2012. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Human Reproduction, 27 (5), 1292-1299.

October 2025