The State of Endometriosis Care in the UK

Written By Period Reality

By Arpitha Ajai Varma and the Period Reality Research Team

Ever since 1993, March has been celebrated as the Endometriosis Awareness month, as declared by the Endometriosis Association.

In this blog we reflect on the current state of this progress in research, policy and experiences in the UK guided by the expertise of Sally Wood and Dr Katerina Bambang, who are members of Period Reality’s Board. 

Endometriosis is the chronic condition whereby tissues similar to the lining of the uterus (womb) can be found outside of it which affect the immune and nervous systems, as well as blood vessels. As such, it is commonly associated with pelvic and intense pain, although the intensity and spread can vary among patients. Other characteristics of this systemic inflammatory condition include infertility, hormonal dysfunction, bowel and bladder issues. 

Scientific advancements and research relating to endometriosis have come a long way, evolving to reach this definition we have today. One of the earliest theories, the retrograde menstruation theory, formulated in 1927 by Dr. John Sampson where he suggested the intense pain experienced by those with endometriosis is caused by endometrial cells flowing out into the pelvic cavity.

However, modern research challenges this theory, noting that whilst retrograde flow happens in approximately 90% of those who menstruate, only around 10% suffer from endometriosis. 

Despite the milestones reached in science, healthcare systems are not resourced well enough for endometriosis treatment. According to the 2024 report by Endometriosis UK, the financial cost of healthcare, treatment and the value of lost work hours as a result comes up to £8.2 billion per year for the UK. 

What accounts for this disparity and significant cost to the UK economy? Research identifies two primary systemic barriers: practitioner bias and a fragmented policy infrastructure. 

Dismissive, harmful attitudes

Often, there is a dismissal of cyclical pain and heavy bleeding as expected features of menstruation. This leads to disconnected diagnoses when other symptoms are presented such as bowel and bladder issues, painful intercourse or infertility. Even in continued care, the patriarchal bias of medical systems shows up in the form of more pain, misdiagnoses and perpetration of trauma. Deep-rooted stereotypical beliefs that dismiss the lived experience of women and minority groups thus become an institutional practice further entrenching physical and emotional burdens.

The dismissal and ignorance of lived experiences of pain further exacerbate the challenges faced by minority groups such as transgender persons. A joint survey by Cysters and Endometriosis UK,  comparing the experiences of ethnic minorities and white people in the UK revealed a longer waiting time in endometriosis diagnosis for the former, ranging from 1 year and 8 months, reaching  up to 11 years on average. Research shows that healthcare practitioners often act upon stereotypes when treating ethnic minorities, such as assuming they have higher pain thresholds. Add to that language and cultural barriers, the process becomes akin to a fight for recognition of pain.The bias of practitioners puts the burden of proving eligibility for treatment on the patients. For ethnic and religious minorities and non cis-gendered patients, this could include them having to  hide their forms of identity or self expression in order to be seen or felt heard.

A lack of systemic clarity

The second, and overarching issue is the absence of a structured path for diagnosis and treatment. Currently, endometriosis treatment is diluted into cases of acute care rather than as a continuous pathway. Recent studies found  that  between 30% - 80% of those with endometriosis also fall into autoimmune disease risks including Multiple Sclerosis, Coeliac and rheumatoid arthritis. Furthermore, due to a proportion of endometriosis symptoms being non-gynaecological, the entire healthcare workforce has to be trained to identify signs of endometriosis affecting other systems within the body, and refer patients appropriately. It is all the more reason for coordinated healthcare that ties in pathways for access to other medical departments for a holistic diagnosis. 

The National Institute for Health and Care Excellence (NICE) has  developed its  guidelines for provision of endometriosis care which includes  advice on referrals, diagnosis and treatments. However, a valid concern in this discussion is the underfunding of the NHS, especially women's health which is severely disproportionate given the size of the population that needs its services. While the female population represents 51% of the total population, only 2% of medical research funding makes it to female reproductive health. To ensure the implementation of endometriosis care pathways, we need the larger public infrastructure machine to be running with more fuel than it is currently allocated.  

The Way Forward

Despite the challenging landscape of endometriosis care, there is space for change backed by encouraging developments. New research has come up with less invasive tests, with improved accuracy, such as the Zewig© test that can aid diagnosis with saliva. Tying in to defining endometriosis with altered immune conditions, researchers at Oxford University are also exploring immunotherapy for targeted treatment. 

These developments call for supportive policies and environments to foster them. One foundational recommendation is to include menstrual health and endometriosis education with greater emphasis on not dismissing pain as normal in the curriculum for healthcare practitioners. That said, as much as individual and societal perspectives require change, the onus of improving healthcare rightly falls on the policy infrastructure that houses and directs these attitudes. 

The forthcoming NHS Online for England in 2027 gives some hope and holds potential, according to Endometriosis UK, by connecting people to specialist clinicians through the NHS app. This additional choice of virtual consultations can be integrated into the existing system to provide faster access to specialist expertise. However, for these developments to be implemented effectively, there will need to be the supporting infrastructure in place, such as capacity for high quality testing in Community Diagnostic Centres. 

As we navigate the minefield that is learning and understanding more about our bodies and cycles it is crucial to access information from reliable, accurate sources. In this age of social media, misinformation within the health space is rampant, says Sally Wood, our advisor and Clinical Nurse Manager. 

This is where our work, at Period Reality, matters. By providing verified knowledge on menstrual health, we support the movement for better healthcare. When we know what we are looking for, we can advocate for ourselves with confidence. Learn more about the menstrual cycle and everything that it centers  on in our Period Reality Hub, and keep yourself updated with our newsletter. 

References

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