Endometriosis affects approximately 10% of people assigned female at birth, an estimated 190 million women worldwide.1 At an individual level, endometriosis can be asymptomatic, or can cause a spectrum of chronic pain, fatigue, bowel and bladder symptoms, depression, and other comorbidities, including infertility. A challenge for clinicians, perhaps notably in general practice, is that endometriosis is markedly heterogeneous, with no predictable correlation between symptoms experienced and the extent of endometriosis identified during diagnostic laparoscopy or on imaging. Likewise, endometriosis-associated pain can persist when visibly apparent endometriosis is treated.1 Economically, the annual accumulated cost of endometriosis is estimated to be £12.5 billion in the UK, including treatment, health care, loss of productivity, and absence from work.1 Endometriosis has significant potential adverse impacts on an individual’s quality of life.1 On average, sufferers lose up to 11 hours of work per week due to endometriosis symptoms, a figure similar to chronic conditions such as type 2 diabetes, Crohn’s disease, and rheumatoid arthritis.1
Potential complexity of care journeys
Many people with endometriosis experience complex journeys to (and through) care. The average delay in diagnosis in the UK between presentation with symptoms and being diagnosed with endometriosis is 8–9 years — and this has not changed over the last decade, despite changes in guidance, awareness-raising campaigns, and a UK All Party Parliamentary Group report.2 These figures are similar worldwide, speaking to the complexity of diagnosis.1 While endometriosis in adolescence used to be considered rare, a majority of those diagnosed with endometriosis recall symptom onset in adolescence, and many remember not being offered timely treatment.1
These challenges in care experiences — and the overarching need to work to improve them — was a central finding and conclusion of the Women’s Health Strategy for England and the Scottish Women’s Health Plan.3,4 In Denmark, a team of endometriosis researchers orchestrated a public hearing in the Danish Parliament in late 2023 and advocated for a national action plan for endometriosis with dedicated funding,5 similar to the 2018 Australian and the 2022 French initiatives. These complex journeys to and through care for endometriosis sit within a wider context of historical underfunding of research into health in women and chronic pain, under-representation of women in trials (and therefore evidence and guidance), and concerns about disparities of experience of care including feeling heard or listened to. These can be specifically evidenced and related to endometriosis, but are also relevant to a much broader set of women’s health experiences and conditions.3
While there is a need to improve all endometriosis care experiences, it is important to highlight inequities within this overarching care inequality. Most pronounced are racial disparities; Black women are 50% less likely to be diagnosed than White women.6 This is compounded by deprivation; women in higher socioeconomic groups have a higher incidence of diagnosis yet no increased pathology compared to low socioeconomic groups.7 One possible explanation is a lack of knowledge about different patterns or presentations of symptoms,6 but this likely also represents biases and discrimination in health research, guidance, and health care.
Endometriosis (and potential endometriosis) in general practice
This means that GPs are likely often seeing people in primary care who are (or may be) affected by endometriosis. Yet there is little evidence to support care within or for community health settings. Most of our clinical knowledge and research on endometriosis derives from patients and participants recruited from specialist endometriosis centres and advocacy groups, and is conducted and reported by hospital clinicians, rather than GPs. These silos in knowledge matter; while many of the conclusions resonate, they may not represent the heterogeneity of needs and experience of an undifferentiated primary care population. Extrapolating prevalence and likelihood of future complications from a highly selected population seen in tertiary care to a general practice population risks a significant denominator error, and we currently do not have better answers to offer. Improved and less-invasive diagnostic tests for endometriosis are being developed1 and will dramatically change who and how we can diagnose endometriosis, including potentially in primary care. This is welcome, but as we expand testing and diagnostics it is crucial that we develop the knowledge and resources that are relevant to this population and its setting.
Increasing GPs’ awareness of endometriosis is suggested as a solution towards these complex challenges.2,3 While we recognise that awareness of endometriosis is imperfect and is an important and necessary part of improving care, awareness-raising campaigns have arguably not yet delivered meaningful improvements in care. While awareness is a necessary prerequisite for considering endometriosis, research with GPs highlights the complexity of their considerations when they are seeing people with (undifferentiated) symptoms that could suggest endometriosis, including needing to consider other potential causes, such as cancer, that could present with similar or the same symptoms.8 GPs highlight a gap in guidance: guidance suggests specialist referral if symptoms are not controlled with a trial of treatment with medications, such as oral contraceptives, to suppress symptoms. However, there is little guidance about what to do if or when these treatments are effective in reducing symptoms.8 One facet of the complexity of diagnosing endometriosis is that symptoms can present across multiple domains, including menstrual, bladder, and bowel. GPs are well-placed to identify clusters of symptoms that might suggest endometriosis, and we need to be mindful of potential risks to this if (as) primary care provision becomes increasingly fragmented and continuity of care (both informational and relational) is reduced or lost.
The external context in which this dialogue occurs is important to consider. The one-sided media approach in scapegoating GPs for diagnostic delays in endometriosis oversimplifies a complex issue and unfairly places the blame on a single group of clinicians.9 This narrative is also seen in specialist endometriosis literature, with suggestions that GPs represent a bottleneck in journeys to diagnosis.8 But endometriosis is a challenging condition to diagnose due to its diverse and often subtle symptoms.1 While GPs play a crucial role in the initial stages of patient care, they operate within a broader healthcare system. The media’s tendency to spotlight GPs neglects systemic factors such as limited awareness, insufficient research (funding), and societal taboos surrounding women’s health. Addressing endometriosis diagnostic delays requires a comprehensive approach that involves education, improved collaboration among healthcare professionals, and increased awareness among the general public. Vilifying GPs without considering these broader factors perpetuates a misunderstanding of the challenges involved in diagnosing and managing endometriosis, potentially hindering efforts to create a more effective and empathetic healthcare system for individuals with this condition.
If we want to improve care and care experiences for all with endometriosis, both possible and confirmed endometriosis, we argue that it is time to think differently. We need to break down silos in knowledge and knowledge sharing and come together. Silos of knowledge represent missed opportunities to learn — including learning from each other. The Women’s Health Strategy for England advocates for women’s health hubs as a means to begin to address the concerns identified through their consultation.3 These represent a potential opportunity to co-locate primary and secondary care clinicians to work collaboratively, and there are experiences of this creating opportunities for shared and bi-directional learning. However, this potential sits alongside a risk that segregating components of women’s health (often genital or reproductive tract symptoms and conditions) from a broader holistic general practice framework might reduce opportunities to identify symptom patterns across bodily systems – for example, urinary and gastro-intestinal symptoms. This is relevant to endometriosis but also potentially to other conditions, including cancers. This warrants mindful attention and evaluation.10
Conclusion
General practice holds expertise in complex system and implementation research, and in navigating and holding uncertainty. The experience of improving early cancer diagnostics and pathway development work, and using primary care population evidence speaks to the potential power of this approach.11,12 GPs have experience of managing undifferentiated symptomatic presentations across multiple conditions where diagnosis can be complex. GPs can share their wisdom and learning from this, but need spaces and opportunities where this can happen. Collaborations between those with lived experience and clinicians along the whole pathway are needed to characterise points of opportunity for improvement along complex care journeys. We urgently need evidence and resources developed within and for primary care populations, and education that aligns with the reality of general practice.
Notes
Funding
This article was funded as part of
Sharon Dixon’s NIHR Doctoral research fellowship reference: NIHR301787). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Provenance
Commissioned; not externally peer reviewed.
Competing interests
Andrew Horne’s institution (University of Edinburgh) has received payment for consultancy and grant funding from Roche Diagnostics to assist in the early development of a blood diagnostic biomarker for endometriosis, and further received payment for consultancy fees from Gesynta and Joii. Andrew Horne has received payment for a presentation from Theramex. Ulrik Bak Kirk’s institution (Aarhus University) has received grant funding from the European Union’s Horizon 2020 research and innovation program to coordinate the project Finding Endometriosis using Machine Learning (reference: FEMaLe/101017562). The remaining authors have declared no competing interests.
- © British Journal of General Practice 2024
