{"paper_id":"500ad970-596a-4304-927a-e8753bb51795","body_text":"Endometriosis:\ntime to think differently (and together)\nEditorials\n200   |   EDITORIALS   British Journal of General Practice, May 2024 \nEndometriosis affects approximately 10% of people assigned \nfemale at birth, an estimated 190 million women worldwide.1 \nAt an individual level, endometriosis can be asymptomatic, or \ncan cause a spectrum of chronic pain, fatigue, bowel and bladder \nsymptoms, depression, and other comorbidities, including \ninfertility. A challenge for clinicians, perhaps notably in general \npractice, is that endometriosis is markedly heterogeneous, with \nno predictable correlation between symptoms experienced \nand the extent of endometriosis identified during diagnostic \nlaparoscopy or on imaging. Likewise, endometriosis-associated \npain can persist when visibly apparent endometriosis is treated.1 \nEconomically, the annual accumulated cost of endometriosis \nis estimated to be £12.5 billion in the UK, including treatment, \nhealth care, loss of productivity, and absence from work.1 \nEndometriosis has significant potential adverse impacts on \nan individual’s quality of life.1 On average, sufferers lose up to \n11 hours of work per week due to endometriosis symptoms, \na figure similar to chronic conditions such as type 2 diabetes, \nCrohn’s disease, and rheumatoid arthritis.1\nPotential complexity of care journeys\nMany people with endometriosis experience complex journeys \nto (and through) care. The average delay in diagnosis in the UK \nbetween presentation with symptoms and being diagnosed with \nendometriosis is 8–9 years — and this has not changed over the last \ndecade, despite changes in guidance, awareness- raising campaigns, \nand a UK All Party Parliamentary Group report.2 These figures \nare similar worldwide, speaking to the complexity of diagnosis.1 \nWhile endometriosis in adolescence used to be considered rare, a \nmajority of those diagnosed with endometriosis recall symptom \nonset in adolescence, and many remember not being offered timely \ntreatment.1 \nThese challenges in care experiences — and the overarching need \nto work to improve them — was a central finding and conclusion of \nthe Women’s Health Strategy for England and the Scottish Women’s \nHealth Plan.3,4 In Denmark, a team of endometriosis researchers \norchestrated a public hearing in the Danish Parliament in late 2023 \nand advocated for a national action plan for endometriosis with \ndedicated funding,5 similar to the 2018 Australian and the 2022 \nFrench initiatives. These complex journeys to and through care for \nendometriosis sit within a wider context of historical underfunding of \nresearch into health in women and chronic pain, under-representation \nof women in trials (and therefore evidence and guidance), and \nconcerns about disparities of experience of care including feeling \nheard or listened to. These can be specifically evidenced and related \nto endometriosis, but are also relevant to a much broader set of \nwomen’s health experiences and conditions.3  \nWhile there is a need to improve all endometriosis care \nexperiences, it is important to highlight inequities within this \noverarching care inequality. Most pronounced are racial disparities; \nBlack women are 50% less likely to be diagnosed than White \nwomen.6 This is compounded by deprivation; women in higher \nsocioeconomic groups have a higher incidence of diagnosis yet no \nincreased pathology compared to low socioeconomic groups.7 One \npossible explanation is a lack of knowledge about different patterns \nor presentations of symptoms,6 but this likely also represents biases \nand discrimination in health research, guidance, and health care.\nEndometriosis (and potential endometriosis) in \ngeneral practice\nThis means that GPs are likely often seeing people in primary care \nwho are (or may be) affected by endometriosis. Yet there is little \nevidence to support care within or for community health settings. \nMost of our clinical knowledge and research on endometriosis derives \nfrom patients and participants recruited from specialist endometriosis \ncentres and advocacy groups, and is conducted and reported by \nhospital clinicians, rather than GPs. These silos in knowledge matter; \nwhile many of the conclusions resonate, they may not represent the \nheterogeneity of needs and experience of an undifferentiated primary \ncare population. Extrapolating prevalence and likelihood of future \ncomplications from a highly selected population seen in tertiary care \nto a general practice population risks a significant denominator error, \nand we currently do not have better answers to offer. Improved and \nless-invasive diagnostic tests for endometriosis are being developed1 \nand will dramatically change who and how we can diagnose \nendometriosis, including potentially in primary care. This is welcome, \nbut as we expand testing and diagnostics it is crucial that we develop \nthe knowledge and resources that are relevant to this population and \nits setting.\nIncreasing GPs’ awareness of endometriosis is suggested as a \nsolution towards these complex challenges.2,3 While we recognise \nthat awareness of endometriosis is imperfect and is an important and \nnecessary part of improving care, awareness-raising campaigns have \narguably not yet delivered meaningful improvements in care. While \nawareness is a necessary prerequisite for considering endometriosis, \nresearch with GPs highlights the complexity of their considerations \nwhen they are seeing people with (undifferentiated) symptoms that \ncould suggest endometriosis, including needing to consider other \npotential causes, such as cancer, that could present with similar or \nthe same symptoms.8 GPs highlight a gap in guidance: guidance \nsuggests specialist referral if symptoms are not controlled with a \ntrial of treatment with medications, such as oral contraceptives, to \nsuppress symptoms. However, there is little guidance about what to \ndo if or when these treatments are effective in reducing symptoms.8 \nOne facet of the complexity of diagnosing endometriosis is that \nsymptoms can present across multiple domains, including menstrual, \nbladder, and bowel. GPs are well-placed to identify clusters of \nsymptoms that might suggest endometriosis, and we need to \nbe mindful of potential risks to this if (as) primary care provision \nbecomes increasingly fragmented and continuity of care (both \ninformational and relational) is reduced or lost.\nThe external context in which this dialogue occurs is important \nto consider. The one-sided media approach in scapegoating GPs \nfor diagnostic delays in endometriosis oversimplifies a complex \nSharon Dixon, Rebecca Mawson, Ulrik Bak Kirk and Andrew W Horne\n\nBritish Journal of General Practice, May 2024     EDITORIALS   |   201\nissue and unfairly places the blame on a single group of clinicians.9 \nThis narrative is also seen in specialist endometriosis literature, \nwith suggestions that GPs represent a bottleneck in journeys to \ndiagnosis.8 But endometriosis is a challenging condition to diagnose \ndue to its diverse and often subtle symptoms.1 While GPs play a \ncrucial role in the initial stages of patient care, they operate within \na broader healthcare system. The media’s tendency to spotlight \nGPs neglects systemic factors such as limited awareness, insufficient \nresearch (funding), and societal taboos surrounding women’s health. \nAddressing endometriosis diagnostic delays requires a comprehensive \napproach that involves education, improved collaboration among \nhealthcare professionals, and increased awareness among the \ngeneral public. Vilifying GPs without considering these broader \nfactors perpetuates a misunderstanding of the challenges involved in \ndiagnosing and managing endometriosis, potentially hindering efforts \nto create a more effective and empathetic healthcare system for \nindividuals with this condition.\nIf we want to improve care and care experiences for all with \nendometriosis, both possible and confirmed endometriosis, we \nargue that it is time to think differently. We need to break down \nsilos in knowledge and knowledge sharing and come together. Silos \nof knowledge represent missed opportunities to learn — including \nlearning from each other. The Women’s Health Strategy for England \nadvocates for women’s health hubs as a means to begin to address \nthe concerns identified through their consultation.3 These represent \na potential opportunity to co-locate primary and secondary care \nclinicians to work collaboratively, and there are experiences of \nthis creating opportunities for shared and bi-directional learning. \nHowever, this potential sits alongside a risk that segregating \ncomponents of women’s health (often genital or reproductive tract \nsymptoms and conditions) from a broader holistic general practice \nframework might reduce opportunities to identify symptom patterns \nacross bodily systems – for example, urinary and gastro-intestinal \nsymptoms. This is relevant to endometriosis but also potentially to \nother conditions, including cancers. This warrants mindful attention \nand evaluation.10 \nConclusion\nGeneral practice holds expertise in complex system and \nimplementation research, and in navigating and holding uncertainty. \nThe experience of improving early cancer diagnostics and pathway \ndevelopment work, and using primary care population evidence \nspeaks to the potential power of this approach.11,12 GPs have \nexperience of managing undifferentiated symptomatic presentations \nacross multiple conditions where diagnosis can be complex. GPs \ncan share their wisdom and learning from this, but need spaces and \nopportunities where this can happen. Collaborations between those \nwith lived experience and clinicians along the whole pathway are \nneeded to characterise points of opportunity for improvement along \ncomplex care journeys. We urgently need evidence and resources \ndeveloped within and for primary care populations, and education \nthat aligns with the reality of general practice. \nReferences\n1. Horne AW, Missmer SA. Pathophysiology, diagnosis, and management of \nendometriosis. BMJ 2022; 379: e070750.\n2. Endometriosis UK. Years of being “dismissed, ignored and belittled”: Endometriosis \nUK urges improvement to deteriorating diagnosis times. London: Endometriosis \nUK, 2024.\n3. Department of Health and Social Care (DHSC). Women’s Health Strategy for \nEngland. London: DHSC, 2022.\n4. Scottish Government. Women’s Health Plan: a plan for 2021–2024. Edinburgh: \nScottish Government, 2021.\n5. The Health Committee (Denmark). The Health Committee holds a consultation on \nendometriosis. Christiansborg: Danish Parliament, 2023.\n6. Bougie O, Yap MI, Sikora L, et al. Influence of race/ethnicity on prevalence and \npresentation of endometriosis: a systematic review and meta-analysis. BJOG \n2019; 126(9): 1104–1115.\n7. Medina-Perucha L, Pistillo A, Raventós B, et al. Endometriosis prevalence and \nincidence trends in a large population-based study in Catalonia (Spain) from \n2009 to 2018. Womens Health (Lond) 2022; 18: 17455057221130566.\n8. Dixon S, McNiven A, Talbot A, et al. Navigating possible endometriosis in \nprimary care: a qualitative study of GP perspectives. Br J Gen Pract 2021; DOI: \nhttps://doi.org/10.3399/BJGP.2021.0030.\n9. Fearn H. ‘Gaslit by doctors’: UK women with endometriosis told it is ‘all in their \nhead’. The Guardian 2024; 21 Jan: https://www.theguardian.com/society/2024/\njan/21/gaslit-by-doctors-uk-women-with-endometriosis-told-it-is-all-in-their-\nhead (accessed 11 Apr 2024).\n10. Toye F, MacLellan J, Dixon S, McNiven A. Understanding primary care \nperspectives on supporting women’s health needs: a qualitative study. Br J Gen \nPract 2023; DOI: https://doi.org/10.3399/BJGP.2023.0141.\n11. Black GB, Lyratzopoulos G, Vincent CA, et al. Early diagnosis of cancer: systems \napproach to support clinicians in primary care. BMJ 2023; 380: e071225.\n12. Hamilton W. Cancer diagnosis in primary care. Br J Gen Pract 2010; DOI: https://\ndoi.org/10.3399/bjgp10X483175.\nEditorials\nSharon Dixon, \n(ORCID: 0000-0002-7469-6093) GP and National Institute for Health \nand Care Research (NIHR) Doctoral Research Fellow, Nuffield Department \nof Primary Care Health Sciences, University of Oxford, Oxford, UK.\nRebecca Mawson,\n(ORCID: 0000-0001-6377-6197) NIHR Clinical Lecturer in Primary \nCare, School of Medicine and Population Health, University of Sheffield, \nSheffield, UK.\nUlrik Bak Kirk,\n(ORCID: 0000-0003-1683-2189) PhD Fellow; Chief Consultant and \nFEMaLe (Finding Endometriosis using Machine Learning) Coordinator, \nResearch Unit for General Practice and Department of Public Health, \nAarhus University, Aarhus, Denmark.\nAndrew W Horne,\n(ORCID: 0000-0002-9656-493X) Professor of Gynaecology and \nReproductive Sciences, Centre for Reproductive Health, Institute for \nRegeneration and Repair, University of Edinburgh, Edinburgh, UK.\nFunding\nThis article was funded as part of Sharon Dixon’s NIHR Doctoral research \nfellowship reference: NIHR301787). The views expressed are those of the \nauthor(s) and not necessarily those of the NIHR or the Department of \nHealth and Social Care.\nProvenance\nCommissioned; not externally peer reviewed.\nCompeting interests\nAndrew Horne’s institution (University of Edinburgh) has received \npayment for consultancy and grant funding from Roche Diagnostics \nto assist in the early development of a blood diagnostic biomarker for \nendometriosis, and further received payment for consultancy fees from \nGesynta and Joii. Andrew Horne has received payment for a presentation \nfrom Theramex. Ulrik Bak Kirk’s institution (Aarhus University) has \nreceived grant funding from the European Union’s Horizon 2020 research \nand innovation program to coordinate the project Finding Endometriosis \nusing Machine Learning (reference: FEMaLe/101017562). The remaining \nauthors have declared no competing interests.\nDOI: https://doi.org/10.3399/bjgp24X737085\nCORRESPONDENCE\nSharon Dixon\nRadcliffe Primary Care Building, Radcliffe Observatory Quarter, \nWoodstock Road, Oxford OX2 6GG, UK.\nEmail: sharon.dixon@phc.ox.ac.uk","source_license":"public-domain-us","license_restricted":false}