Global inequities and fragmentation in guidelines for endometriosis: a scoping review

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This scoping review of 47 endometriosis guidelines reveals significant regional inequities, methodological inconsistencies, and underrepresentation of specific populations, highlighting the need for standardized global normative guidance.

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This scoping review analyzed 47 clinical practice guidelines for endometriosis to evaluate their global availability, methodological rigor, and inclusivity across different regions. The study found significant regional inequities, with most guidelines originating from high-income European countries and substantial gaps in coverage for Africa and the Eastern Mediterranean. Key limitations included the underrepresentation of adolescents, gender-diverse individuals, and primary care physicians in guideline development, alongside inconsistent recommendations regarding diagnosis, treatment, and fertility care. This paper is centrally about endometriosis — specifically examining the fragmentation and inequity of global clinical practice guidelines for its management.

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Abstract

BACKGROUND: Despite the availability of endometriosis care guidelines from multiple governmental and professional organisations, their global applicability and recommendations have been insufficiently examined. This scoping review examines endometriosis guidelines worldwide, evaluating their availability, target audiences and populations, methodologies, and clinical recommendations, building on a previous review of region-specific endometriosis care guidance. METHODS: We searched PubMed, EMBASE, and Scopus from inception through October 2025 without language, publication date, or geographic location restrictions. Additional grey literature searches were conducted through March 2026. Eligible guidelines addressed individuals with suspected or confirmed endometriosis of any age, including adolescent-specific guidance and recommendations incorporating adenomyosis. RESULTS: A total of 47 guidelines were included, comprising 28 English-language and 19 non-English-language guidelines from multiple regions. The findings reveal marked regional inequities: most guidelines originate from high-income settings, particularly in Europe (15/47, 32%), with substantial gaps in Africa (2%) and the Eastern Mediterranean (4%). Variation in inclusivity and methodological rigour was observed, including underrepresentation of adolescents (77%), individuals with lived experience (30%), and gender-diverse people (19%), as well as inconsistent approaches to grading evidence. There was also limited consideration of primary care physicians (49%), who play a key role in early diagnosis and management. Gaps in alignment across guidelines on key diagnostic and therapeutic pathways include recommendations on histological confirmation, biomarker use, aromatase inhibitors, repeat surgery, fertility care, non-medical interventions, and self-care interventions. CONCLUSIONS: These findings highlight the need for a global normative guideline, greater standardisation in guideline development methods, context-specific guidance that incorporates the needs and rights of end-users, and coordinated efforts to strengthen equitable, evidence-based care.
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Abstract

Background Despite the availability of endometriosis care guidelines from multiple governmental and professional organisations, their global applicability and recommendations have been insuf ficiently examined. This scoping review examines endometriosis guidelines worldwide, evaluating their availability, target audiences and populations, methodologies, and clinical recommendations, building on a previous review of region-specific endometriosis care guidance.

Methods

We searched PubMed, EMBASE, and Scopus from inception through October 2025 without language, publication date, or geographic location restrictions. Additional grey literature searches were conducted through March 2026. Eligible guidelines addressed individuals with suspected or con firmed endometriosis of any age, including adolescent- specific guidance and recommendations incorporating adenomyosis. ResultsA total of 47 guidelines were included, comprising 28 English-language and 19 non- English-language guidelines from multiple regions. The findings reveal marked regional inequities: most guidelines originate from high-income settings, particularly in Europe (15/ 47, 32%), with substantial gaps in Africa (2%) and the Eastern Mediterranean (4%). Variation in inclusivity and methodological rigour was observed, including underrepresentation of adolescents (77%), individuals with lived experience (30%), and gender-diverse people (19%), as well as inconsistent approaches to grading evidence. There was also limited consideration of primary care physicians (49%), who play a key role in early diagnosis and management. Gaps in alignment across guidelines on key diagnostic and therapeutic pathways include recommendations on histological con firmation, biomarker use, aromatase inhibitors, repeat surgery, fertility care, non-medical interventions, and self-care interventions.

Conclusions

These findings highlight the need for a global normative guideline, greater standardisation in guideline development methods, context-speci fic guidance that incorporates the needs and rights of end-users, and coordinated efforts to strengthen equitable, evidence-based care. Endometriosis is a chronic inflammatory condition affecting approximately 10% of people of female sex of reproductive age (~190 million) worldwide1. It is characterised by the presence of endometrium-like tissue outside the uterus and is commonly associated with chronic, often severe pelvic pain, abnormal uterine bleeding, infertility, fatigue, bowel symptoms, and mental health conditions, which can substantially impair quality of life 2–4.D e s p i t e this substantial burden on the health and well-being of affected individuals, endometriosis has not been adequately prioritised in global health policy, and no globally applicable care guidance exists5,6. Advances in diagnostic approaches and increasing awareness, driven by targeted national policies, care guidance, and patient advocacy, exist, but prolonged diagnostic delays persist across healthcare systems and continue e-mail: [email protected]; [email protected] Plain language summary Endometriosis is a chronic inflammatory condition characterised by the presence of endometrium-like tissue outside the uterus. Despite numerous endometriosis care guidelines from various organisations, their global applicability and recommendations remain insufficiently examined. We reviewed 47 endometriosis guidelines from different countries and regions, including 19 published in languages other than English. Most guide- lines originated in high-income settings, par- ticularly in Europe, while major gaps remained in Africa and the Eastern Mediterranean. Adolescents, people with lived experience, gender-diverse people, and primary care physicians were not consistently included in guideline development. Recommendations also varied by diagnosis, treatment, fertility care, and non-medical management. These findings highlight the need for high-quality, standardised, and inclusive guidance that accounts for diverse populations and health- care settings, ensuring equitable, evidence- based endometriosis care globally. Communications Medicine | (2026) 6:495 1 1234567890():,; 1234567890():,; to challenge effective management7,8. Delays in diagnosis of 12 years or more, driven by non-speci fic clinical presentations, symptom normal- isation, lack of non-invasive diagnostics and limited access to specialised care9–11, have been reduced to 6 years in some high-income settings 12,13. However, diagnostic delays remain a contentious issue, and even the more recent data are considerably longer than the one-year-or-less target recommended by the United Kingdom A ll Party Parliamentary Enquiry into endometriosis by 2030 14. These delays contribute to higher hospitali- sation rates and increased healthcare use and costs for pain management, particularly in settings with limited access to timely diagnosis and multi- disciplinary care 15,16. The health, well-being, and economic burden asso- ciated with endometriosis across the life course are likely underestimated, as existing cost data are limited and largely derived from high-income countries 17. However, the scale of the problem is significant: non-cancerous gynecological conditions collectively account for over 5% of global years lost to disability (YLDs), with endometriosis the leading individual contributor (0.51%), accounting for nearly half the combined burden of HIV, tuber- culosis, and malaria (1.08%) 18. Normative guidelines, developed through systematic evidence review and appraisal of bene fits and harms, are essential for standardising care, supporting evidence-based decision-making, and reducing unwarranted variation in clinical practice, non- medical and self-care interventions 19. Although many governmental and professional bodies have issued guide- l i n e sf o re n d o m e t r i o s i sc a r eo v e rt h ep a s tt w od e c a d e s ,t h e i rg l o b a la p p l i c - ability, the strength of their approaches, and their recommendations have been insufficiently examined. This scoping review expands on prior work, including a review of the national availability of endometriosis care guidance 6 and three reviews of diagnostic and management recommendations from a limited set of English-language guidelines from high-income countries 20–22.I ts y s t e m - atically maps and compares endometriosis guidelines across all WHO regions. It also evaluates methodological approaches, target populations and audiences, and clinical recommendations to identify key gaps and inform the future development of globally applicable normative guidance. The guidelines reveal marked regional inequities and variation in inclusivity, methodological rigour, and recommendations, highlighting the need for more standardised and equitable global guidance.

Methods

Search strategy We conducted a scoping review of the published literature up to October 2025 using PubMed, EMBASE, and Scopus (Supplementary Table 1). The search was limited to human guidelines and used combinations of title, abstract, keyword, and subject heading terms in PubMed (MeSH), EMBASE (Emtree), and Scopus: ( “Endometriosis” OR “Adenomyosis”) AND ( “Practice Guideline ” OR “Guideline” OR “Clinical Practice Guideline” OR “Practice Bulletin” OR “Green-top” OR “Living Guide- line” OR “Position Statement” OR “Consensus”). Additional guidelines, particularly those in non-English publications, were identi fied through grey literature sources and manual hand-searching, including the Guidelines International Network, Google Scholar, and websites of professional societies and government health agencies, up to March 2026. Grey literature searches combined “endometriosis” with country names and guideline-related terms to identify national endometriosis guidance not captured in bibliographic databases. No restrictions were applied on language, date of publication, or source location. We performed searches in English and the primary languages of each country, with non-English documents screened using Google Translate and, where possible, checked by co-authors and others fluent in those languages. The review followed the Joanna Briggs Institute methodology for scoping review 23, and was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist (Supplementary Table 2) 24. The review protocol was registered with the Open Science Framework ( https://doi.org/10. 17605/OSF.IO/ZE64P). Selection criteria Titles and abstracts of identified records were independently screened by DGG and GDM, followed by a full-te xt review of eligible documents. Guidelines were included if they addressed individuals with suspected or confirmed endometriosis (of any age), including adolescent-specificg u i - dance or recommendations integrating adenomyosis. Eligible documents comprised clinical guidelines, consensus statements, recommendations, or care pathways developed in international, national, or regional contexts. We included clinical practice guidelines and consensus documents issued or endorsed by national governments, government–professional society col- laborations, national professional societies, multinational or regional pro- fessional societies, and international professional societies or expert consensus groups. Documents were excluded if they were outdated (i.e., superseded by a more recent edition), commentaries, narrative reviews, summaries without detailed recomme ndations, or committee opinions. When multiple guidelines were identified for a country, the most recent, authoritative, and comprehensive source was selected; if both professional society and government guidelines were available, both were recorded. Data extraction Data extraction was independently performed by two reviewers (DGG and LWR), with any discrepancies resolved through discussion. Non-English documents (n = 19; e.g., Spanish, Portuguese, Chinese, and others) were translated using Google Translate, and the extracted data were subsequently reviewed and, where applicable, veri fied by multilingual collaborators. Information was collected from each eligible document across three cate- gories: Guideline characteristics (issuing body and year, country or region, title, document type, scope,first and last edition, language, and originality); methodological characteristics (target population, target audience, metho- dology used, and evidence grading system); and recommendation domains (diagnosis, imaging, surgical management, medical treatment, fertility, and non-pharmacological care). Adaptation was de fined as a guideline that explicitly used one or more existing clinical practice guidelines as a primary source and modified or contextualised their recommendations for local use. These included documents stating that they were “adapted from,”“ based on,” or “derived from” a named guideline, or that followed a formal adap- tation framework. Data synthesis and analysis Data were synthesised using a descrip tive approach, including narrative summaries, frequency tables, and t hematic mapping. Comparisons were made across regions, scopes, and methodological characteristics to highlight similarities and variations among gu idelines. Clinical recommendations were categorised into the prede fined domains, and each guideline was assessed for the presence or absence of recommendations within these domains. Results were presented in summary tables (characteristics of included guidelines, methodology, and recommendations covered) and visualised throughfigures, including a world map of endometriosis guide- lines. This review used Microsoft Excel 365 for data synthesis and visuali- sation, including Figs.3 and 4. The world map and heatmaps were generated in R (version 4.5.0) using theggplot2 package.

Results

A total of 5347 records were identi fied from PubMed ( n = 974), Embase (n = 2365), and Scopus (n = 2008). After removing 2105 duplicates, 3242 records were screened, and 91 full-text documents were assessed for eligibility (Fig. 1). Seventy documents were excluded as newer editions had superseded them or were commentaries, narrative reviews, sum- maries without detailed recommendations, or committee opinions. Twenty-one documents were included from database searches, and 26 from grey literature and hand searching, yielding 47 final guidelines (28 in English and 19 in non-English languages across multiple regions, including Spanish, Portuguese, Chinese, Thai, Russian, and others). Of the 47 documents, 12 were national governmental, 6 were government–professional society collaborative, 20 were national https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 2 professional society, 6 were multinational or regional professional society, and 3 were international professional society. Guidelines characteristics A total of 38 national guidelines were identified, all published between July 2010 and March 2026 (Supplementary Data 1). Countries in the European Region had the greatest proportion of national guidelines ( n = 16), comprising 13 clinical practice guidelines (CPGs) and 3 related documents (2 consensus and 1 clinical care pathway). Of these, 11 were original, and 5 were adaptations of existing guideli nes. Eight countries in the Americas published 10 guidelines– 5 original CPGs and 1 consensus statement from North America, and 4 CPGs from South America (3 original, 1 adapted). Seven countries in the Western Pacific Region published original national- level guidelines (5 CPGs and 2 consensus). The South-East Asia Region published 2 original CPGs, and one country in the African Region published an adapted CPG. In the Eastern Medit erranean Region, 2 countries pub- lished guidelines: one was an original CPG, and the other was an adapted, formulary-focused clinical guidance document. In addition, 9 international or regional guidelines, all original publications, were identified, including 2 CPGs and 7 consensus statements. Overall, 39 guidelines were original developments, while 8 were adaptations, most commonly drawing on the European Society of Human Reproduction and Embryology (ESHRE), the National Institute for Health and Care Excellence (NICE), or the American College of Obstetricians and Gynaecologists (ACOG). Figure 2 shows the global distribution of national guidelines for endometriosis. Most guidelines werepublished in Europe, followed by the Western Pacific region, with limited coveragei nA f r i c a ,L a t i nA m e r i c a ,a n d the Middle East. Most were original CPGs, with fewer related documents, such as consensus statements. Several non-English guidelines and adapta- tions of existing recommendations were also identified, primarily in Europe and South America. Overall, substantial geographic gaps in guideline availability were evident, particul arly across Africa and the Eastern Mediterranean. Methodological characteristics Across the 47 endometriosis guidelin es, all targeted reproductive-aged patients, and 77% also included adolescents (Fig.3, Supplementary Data 2). Most (83%) addressed speci fic clinical subgroups, such as pregnancy- associated disease or menopausal status; however, only a minority (19%) explicitly acknowledged gender-diverse individuals. All guidelines were directed at gynaecologists or fertility specialists, and 85% recommended a multidisciplinary team (MDT) approach. In contrast, fewer than half (49%) explicitly included primary care clini cians, such as general practitioners (GPs). Evidence of patient and public involvement (PPI) was reported in only 30% of endometriosis guidelines (n = 14). Methodological approaches varied across the guidelines (Fig.4,S u p - plementary Data 3). Among original guidelines (n = 39), 82% used a hybrid model combining evidence review (sys tematic or narrative) with expert consensus, while 8% conducted a systematic or evidence-based review Fig. 2 | Global distribution of national guidelines for endometriosis. Records identified through the database search (n = 5347) - PubMed (n = 974) - Embase (n = 2365) - Scopus (n = 2008) Duplicates (n = 2105) Records after duplicates removed (n = 3242) Full text accessed for eligibility (n = 91) Excluded based on title and

Abstract

screening (n = 3151) Guidelines included from the database search (n = 21) Excluded (n= 70) with reasons: - Outdated (n= 33) - Only summaries/ no detail (n= 18) - Narrative review/ commentaries (n= 10) - Committee opinions (n= 9) Grey literature and hand searching (n = 26) Final Guidelines Included (n = 47) (English= 28 and non-English= 19) - National governmental (n = 12) - National professional society (n = 20) - Government–professional society collaborative (n = 6) - Multinational or regional professional society (n = 6) - International professional society (n = 3) Fig. 1 | PRISMA-ScR flow diagram showing the identification, screening, eligibility, and inclusion of guidelines. https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 3 alone, and 10% relied solely on expert consensus without reporting a sup- porting evidence review. Regarding evidence grading, 26% of the original guidelines applied the Grading of Recommendations Assessment, Devel- opment and Evaluation (GRADE) framework to assess evidence quality and the strength of recommendations 25. A further 44% used national or orga- nisational grading systems (i.e., frameworks developed by countries or professional bodies, including ad apted or alternative approaches to GRADE), whereas 31% issued ungraded or consensus-based recommen- dations without formal appraisal of the underlying evidence. Among adapted guidelines (n = 8), 63% reported conducting a literature review combined with consensus processes to contextualise recommendations, and 50% applied national-level grading systems. Clinical domain recommendation Most guidelines covered a broad range of clinical domains, including diagnosis (91%), medicalmanagement (85%), surgical management (83%), fertility care (81%), and non-pharmacological interventions (74%). A minority had more limited scopes: t he Saudi Arabian Council of Health Insurance (CHI) 26 focused only on the medical management of endome- triosis; the United States’ Society of Radiologists in Ultrasound (SRU)27 and the European Society of Urogenital Radiology (ESUR) 28 consensus on routine pelvic imaging for endometriosis; the Asia Paci ficI n i t i a t i v eo n Reproduction (ASPIRE)29 consensus provided a detailed evaluation of the structure of care in endometriosis and criteria for networks of expertise; the Asia-Pacific Endometriosis Expert Panel (APEX) 30 addressed diagnosis, imaging, and care pathways; and the Australasian Certi ficate of Repro- ductive Endocrinology and Infertility Consensus Expert Panel on Trial Evidence (ACCEPT) 31 focused on the management of endometriosis- associated infertility. Most guidelines (>77%) addressed core diagnostic domains, including clinical assessment, pelvic examination, empirical therapy, avoidance of routine first-line laparoscopy, and referral to specialist care (Fig.5). How- ever, variation was observed in recomme ndations regarding histological confirmation and the diagnostic value of biomarkers such as cancer antigen 125 (CA-125), particularly among European and North American guidelines. Fig. 4 | Methodology and evidence grading among the original guidelines ( n = 39). Fig. 3 | Target population and intended users of included guidelines ( n = 47). https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 4 Transvaginal ultrasound (TVUS) was consistently recommended as the first-line imaging modality, with magnetic resonance imaging (MRI) reserved for suspected deep endome triosis (DE) or severe disease when advanced ultrasound was not feasible in almost all guidelines (94%), except ACCEPT, CHI, and the Brazilian Ministry of Health (MoH) guideline (Fig. 6). Inconsistencies were evident in guidance on specialist imaging and in explicit recognition that imaging alone cannot exclude endometriosis, especially among national gui delines from the Western Paci fic, North America, and Europe. Most guidelines (>70%) – particularly those from Europe, South America, and the Western Pacific – largely converged on recommending laparoscopy when medical therapy fails, cystectomy for endometrioma, symptom- or fertility-based surgical indications, and referral to expert surgeons or MDTs (Fig.7). However, inconsistencies remained, particularly regarding repeat surgery and the preference for excision over ablation. Most guidelines (>77%) converged on recommending non-steroidal anti-inflammatory drugs (NSAIDs) for pain relief and hormonal therapy as first-line management, primarily combined oral contraceptive pills (COCPs) and progestins. Gonadotropin-releasing hormone (GnRH) ana- logues with add-back therapy were also commonly recommended (79%) as second-line options for patients with persistent symptoms or intolerance to first-line treatment (Fig.8). Some variation was noted in recommendations for post-surgical hormonal treatment, with the use of the levonorgestrel- releasing intrauterine system (LNG-IUS) addressed less consistently. A limited number of guidelines (45%) recommend aromatase inhibitors for refractory disease. Most European and South-East Asian guidelines showed strong con- vergence in fertility-related recommendations, particularly in endorsing Assisted Reproductive Technology/I n Vitro Fertilisation (ART/IVF), reserving surgery mainly for moderate-to-severe disease, considering ovarian reserve in decision-making, and promoting individualised fertility planning or MDT referral (Fig.9). In contrast, greater regional variation was observed in recommendations on early f ertility referral, avoiding routine surgery before ART, and providing fertility counselling, particularly among guidelines from North America, parts of Europe, and the Western Pacific region. Patient education (40%) and psychological support (30%) were the most frequently recommended non-pharmacological interventions across the included guidelines (Fig. 10). Some guidelines acknowledged the potential therapeutic value of pelvicfloor physiotherapy (19%), modifiable behavioural measures (e.g., dietary or physical activity changes; 36%), and complementary therapies (e.g., acupuncture, yoga, traditional Chinese medicine; 26%) but did not issue specific recommendations due to insuf- ficient evidence 32–36. Notably, there was variation in the inclusion of com- plementary and behavioural therapies, with some guidelines mentioning these interventions briefly and others not addressing them at all. Given that many patients with endometriosis also have adenomyosis, recommendations on adenomyosis appeared in 10 endometriosis guidelines (21%), although it was not a primary focus. However, because adenomyosis is a distinct condition, some guideli nes, such as ESHRE, did not include recommendations for it.

Discussion

This review identi fied 38 national guidelines, mostly from high-income countries in Europe and the Western Pacific. Substantial gaps– particularly in Africa, Latin America, and the Eastern Mediterranean– highlight frag- mentation and inconsistency in national endometriosis care guidance. Several national guidelines were adaptations of pre-existing frameworks, Fig. 5 | Diagnosis recommendations across endometriosis guidelines by WHO region and issuing body ( n = 47). https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 5 most commonly drawing on guidance from ESHRE, NICE, or ACOG. Of the 9 regional or multinational guidelines identified, most were consensus statements led by Asia–Pacific or multinational expert groups, while only 2 were full CPGs from Europe, underscoring the limited availability of globally applicable guidance for the diagnosis and management of endometriosis. This review provides a multilingual analysis of 47 guidelines across all WHO regions, documenting domain-specific clinical content, methodolo- gical variation, and global inequitiesthat have not been previously described. A scoping review of the national availability of endometriosis care guidance reported that ~18% of WHO-recognised Member States have govern- mental, professional society, or collaborative government–society guide- lines, while many rely on informal advocacy or social media sources 6. Another review summarised diagnostic and management recommenda- tions from 3 major international guidelines (ESHRE, RANZCOG, and NICE) but did not evaluate wider global variations20. Earlier work reviewed 7 predominantly high-income, English-language guidelines published before 2016 21, while another review compared treatment recommendations from 8 guidelines using standardised, evidence-graded tables22. However, these previous reviews did not evaluate guidelines across all WHO regions. All included guidelines addressed reproductive-aged individuals, but only 77% considered adolescents, despite the known early onset of symp- toms and diagnostic delays beginning in adolescence 37. 83% of guidelines also addressed key clinical subgroups, such as pregnancy and menopause, but only a small number (19%) explicitly acknowledged gender-diverse individuals, highlighting persistent gaps in inclusivity. 70% of guidelines did not include the needs, preferences, and priorities of people with lived experience, particularly those from underserved communities. Systematic reviews have demonstrated that gender-diverse individuals who experience endometriosis often face even further delayed diagnosis and inadequate care due to cis-normative assumptions and the absence of inclusive clinical guidance 38,39. All guidelines included gynaecol o g i s t sa sak e yc l i n i c a lc a r e provider, and most endorsed multidisciplinary care; however, fewer than half explicitly addressed primary care clinicians, despite their pivotal role in early symptom recognition and referral, as highlighted by recent evidence emphasising the central importance of first-contact management pathways 20,40. PPI was reported inconsistently across endometriosis guidelines, with only 30% of the most recent guidelines (e.g., RANZCOG, NICE, ESHRE, HSE/NWIHP, AWMF/DGGG, ASPIRE, APEX, and WES) documenting patient participation in their devel opment. This highlights the need for greater integration of patient perspectives to strengthen patient-centred care and shared decision-making. Methodological heterogeneity was evident across guidelines. Although hybrid evidence–consensus models predominated in the original guidelines, grading frameworks were applied inconsistently, with roughly one-quarter of guidelines using the GRADE approach (e.g., RANZCOG, KSE, and ESHRE). This inconsistency reflects broader concerns about variability in transparency and rigour in guideline development 41. In addition, several countries adopted existing guidelin es rather than undertaking original development, most commonly using literature review combined with consensus processes to contextualise recommendations. Collectively, this variation highlights limited standardisation in the strength and clarity of recommendations, reducing their clinical applicability and comparability across health systems. The variation in how adenomyosis is addressed across guidelines appears to re flect differences in guideline scope rather than disagree- ment about its clinical importance. Although adenomyosis frequently Fig. 6 | Imaging recommendations across endometriosis guidelines by WHO region and issuing body ( n = 47). https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 6 coexists with endometriosis and shares clinical features, it is increas- ingly recognised as a distinct condition with different diagnostic and management considerations. Accordingly, most guidelines limit their recommendations to endometriosis, whereas a minority, including the RANZCOG 33,T E A S42,a n dP T G O43 guidelines, incorporate adeno- myosis to better re flect the overlap between these conditions observed in clinical practice. Over 77% of guidelines endorse a symptom-based diagnostic approach, discourage diagnostic laparoscopy as a first-line investigation, support empiric medical therapy, and outline referral pathways to specialist care for timely diagnosis. TVUS is commonly recommended as the initial imaging modality, with MRI reserved for suspected deep or severe disease when advanced ultrasound is unavailable; however, these distinctions are often difficult to establish from clinical presentation alone. Overall, these recommendations promote earlier, less invasive clinical pathways rather than routine surgical con firmation 20. Such approaches are intended to minimise diagnostic delay, facilitateearlier symptom relief, and reduce the risk of disease progression 44. Despite this broad convergence, incon- sistencies were observed in recom m e n d a t i o n so nh i s t o l o g i c a lc o nfirmation and the use of biomarkers such as CA-125. Most guidelines note uncertainty in the evidence supporting the use of biomarkers for the diagnosis of endometriosis, given their low sensitivity and specificity, which limits their ability to reliably confirm or exclude the disease 32,33,45. Consequently, bio- markers are not recommended as standalone diagnostic tests for endome- triosis. In contrast, histological con firmation remains important when lesions are identi fied. For instance, ESHRE, NICE, and RANZCOG recommend that lesions suspected at laparoscopy be confirmed histologi- cally, while recognising that negative histology does not definitively exclude endometriosis32–34. Some inconsistencies were observed in surgical recommendations, particularly regarding repeat ovarian surgery and the management of ovarian endometriomas, with excision often prioritised over ablation. Evi- dence suggests that repeat ovariansurgery may reduce ovarian reserve 46,a n d that ablation may be associated with higher recurrence rates than cyst excision; however, high-quality c omparative data remain limited 47.F o r example, SASREG48, CENETEC49,P T G O43,a n dF O G S I50 state that both excision and ablation are effective formanaging pain and infertility, while some American and Western Pacific guidelines do not specify a preferred technique. Although several American and European guidelines also do not explicitly address hysterectomy, most recommend it only for patients with persistent symptoms who no longer wishto conceive, emphasising that all visible disease should be excised at the time of surgery and recognising that hysterectomy does not constitute a definitive cure for endometriosis32–34. Medical management of endometriosis showed strong convergence across most guidelines, with COCPs and progestins recommended as the preferredfirst-line hormonal therapy and GnRH analogues with add-back therapy advised as second-line options when initial treatment fails– con- sistent with high-quality evidence. NSAIDs or other analgesics are sug- gested, either alone or in combination with hormonal therapy, to alleviate endometriosis-related pain, although this remains a weak recommendation due to limited supporting evidence 32,33. Most guidelines do not specifically address prescription opioids 32,34,35; however, the RANZCOG guideline recommends that, if indicated, opioids be restricted to acute pain, prescribed at the lowest effective dose for the shortest possible duration, and not used routinely for chronic endometriosis-associated pain33. The LNG-IUS is also widely recommended for pain control, particularly when long-term, loca- lised hormonal suppression is appropriate, although some guidelines did not explicitly include it 34,51,52. For individuals with persistent symptoms Fig. 7 | Surgical recommendations across endometriosis guidelines by WHO region and issuing body ( n = 47). https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 7 despite standard medical or surgical treatment, only a minority of guidelines (45%) recommend aromatase inhibitors (e.g. letrozole, anastrozole) – usually in combination with other hormonal agents– reflecting the limited evidence base. Their use may be off-label for endometriosis, and differences in regulatory approval across jurisdictions may partly explain variation in recommendations. Several guidelines also recommend postoperative hor- monal therapy for individuals who are not planning immediate pregnancy to reduce disease recurrence and pain; however, supporting evidence for this practice remains heterogeneous and limited53,54. Most guidelines (>65%) advise offering ART/IVF for endometriosis- related infertility, incorporating ovarian reserve assessment when planning treatment, and adopting an individualised approach to fertility planning or MDT involvement. Despite this, notable variation persists across regions, particularly in guidance on early referral to fertility services, although early specialist referral is recommended fo r individuals with endometriosis- associated infertility20. Inconsistencies were also identified in recommen- dations advising against routine sur gery before ART. While surgery for ovarian endometriomas may reduce ovarian reserve, evidence for benefit before ART remains uncertain55. In addition, available evidence for the use of hormonal therapies, such as oral contraceptives or GnRH analogues, before ART to improve live birth outcomes, remains limited46,56. The majority of guidelines advise clinicians to discuss non-medical stra- tegies to support quality of life and psychological well-being in endometriosis patients, with HAS/CNGOF 57,M I N S A L / S O C H O G58,M o H–New Zealand59, and ASPIRE29, explicitly supporting the use of psychological support, patient education, and complementary therapies like acupuncture and yoga. Other guidelines, including ESHRE32,R A N Z C O G33,N I C E34,H S E35,a n dK S E36 – provide general support for this approach, but refrain from recommending interventions such as acupuncture, physiotherapy, exercise, diet, self-care or other complementary therapies due to insufficient evidence. The ASPIRE consensus 29 evaluated, through rigorous consensus methodology, how endometriosis careshould be structured (although other guidelines allude to this), and what criteria should de fine a network of expertise for managing endometriosis in the Asia Pacific. This scoping review maps the availability of endometriosis guidelines across all WHO regions a nd systematically characterises methodological variation and inco nsistencies in clinical recommen- dations. Although we used a rigor ous search strategy, the limited availability of non-English guidelin es in electronic databases required reliance on grey literature sources and Google Translate, which may not have captured all relevant documents or search terms. Non- English documents were also translated using Google Translate for data extraction and, where possible, reviewed by multilingual colla- borators; however, machine translation may have introduced minor inaccuracies or loss of contextual nuance 60. Although methodological characteristics were examined in det ail, formal quality appraisal (e.g., AGREE II) was not undertaken; thus, findings re flect the presence and content of recommendations rather than their rigour or overall quality. The use of a “presence versus absence ” coding framework may have oversimpli fied recommendations, as items coded as present can vary in detail and strength. When multiple guidelines were available within a country, the most recent and comprehensive source was selected; this approach might have introduced selection bias by excluding subspecialty or complementary guidelines that provide more detailed recommendations. This review maps guideline availability and content but does no t assess implementation, equi- table uptake, or patient outcomes; guideline availability is not a proxy for quality of care. Variation in the inclusion of adenomyosis likely reflects differences in guideline scope and evolving clinical recogni- tion rather than omission or lack of importance. Direct comparison Fig. 8 | Medical recommendations across endometriosis guidelines by WHO region and issuing body ( n = 47). https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 8 of guidelines may be limited by differences in healthcare systems, resource availability, and implement a t i o nc o n t e x t sa c r o s sc o u n t r i e s , particularly between high- and low-income settings. The marked variation in guideline development methods and recommendations identified in this review, together with the under- representation of Africa and the Eastern Mediterranean Region, supports the value of a global normative guideline. Such a framework could promote methodological consistency, broader regional representation, and equitable recommendations, while allowing ad aptation to diverse health system contexts and resource settings. The absence of national or region al endometriosis guidelines may contribute to inconsistent clinical practice, delayed diagnosis, fragmented referral pathways, and inequitable access to evidence-based care, particu- larly in resource-limited settings. In these contexts, clinicians often rely on international recommendations or ind ividual clinical experience, which may not align with local healthcare infrastructure or resource availability. A global guideline adaptable to local contexts could establish minimum standards of care, strengthen training and referral pathways, and help reduce inequities in endometriosis care across diverse health systems 61,62. The findings of this scoping review may guide future efforts by identifying regions with limited guideline coverage, highlighting variations in recom- mendations, and informing prioriti es for guideline development and implementation. Greater collaboration among international professional bodies, regional organisations, policymakers, and patient representatives may support the development of harmonised, contextually appropriate guidance across diverse healthcare settings63,64. Underserved populations, including Indigenous peoples, gender- diverse individuals, people living with disabilities, and those in rural and remote areas, may face additional barriers to timely endometriosis diagnosis and care due to geographic, cultural, and socioeconomic factors. These populations are often underrepresented in endometriosis research and guideline development, which may limit the extent to which recommen- dations reflect their needs, preferences, and experiences 65,66. Greater inclu- sion of these perspectives is essential t o support equitable, inclusive, and patient-centred care.

Conclusion

This review demonstrates substantial regional variation in the availability, methodologies, and recommendations of endometriosis guidelines world- wide. These findings highlight the need for greater harmonisation of guideline development and implementation, while ensuring recommen- dations remain responsive to regional healthcare contexts and population needs. Expanding guideline development in underrepresented regions, particularly in the WHO African and Eastern Mediterranean regions, and broadening target audiences to include primary care and adolescent health providers could improve access to timely diagnosis and management. Improved collaboration between international professional bodies and relevant organisations could help reduce inconsistencies in guidance, strengthen education and training, support timely updates to recommen- dations, and enhance patient support. Further research is needed to better understand the causes and disease mechanisms, including robust evidence confirming the effectiveness of aromatase inhibitors and self-care inter- ventions for managing symptoms of suspected or confirmed endometriosis. Additional research is also needed to advance non-invasive diagnostics, develop non-hormonal, precision-based treatments, and establish more effective clinical pathways to expedite earlier diagnosis and enable perso- nalised care. A high-quality, standardised, inclusive, and global guideline is essential to address these gaps and im prove the quality, accessibility, Fig. 9 | Fertility recommendations across endometriosis guidelines by WHO region and issuing body ( n = 47). https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 9 affordability, and availability of care for individuals living with endome- triosis worldwide. Data availability The data supporting thefindings of this study are available within the article and its supplementary information files. Additional details are available from the corresponding author upon reasonable request. Received: 11 May 2026; Accepted: 31 August 2026;

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Acknowledgements

We thank Jennifer J. K. Rasanathan, consultant, World Health Organization for reviewing an early draft of the manuscript. The study is supported by the Medical Research Future Fund (MRF1199785). G.D.M. is the Australian National Health and Medical Research Council Leadership Fellow (GNT2009577). The funding body has no role in the design, analysis, or preparation of the manuscript. The named authors alone are responsible for the views expressed in this publication and do not necessarily represent the decisions or the policies of the World Health Organization. Author contributions D.G.G. contributed to conceptualisation, data curation, methodology, formal analysis, software, visualisation, and writing– original draft. G.D.M. and M.N. contributed to conceptualisation, methodology, supervision, and writing – review and editing. L.W.R. contributed to the translation of non- English documents, data extraction, and manuscript revision. D.E., J.A., K.T.Z., L.C.G., L.R., M.L., H.S., G.D.A., E.W., F.K., S.M., A.G.S., S.A., I.F., K.K., M.K., J.W.M., E.O.M., E.O., A.S., E.S., P.J.Y., N.P.J., S.A.M., and A.H. contributed to methodology, interpretation offindings within their respective areas of expertise, and critical revision of the manuscript. All authors read and approved the final manuscript. Competing interests G.D.M. reports serving in unpaid roles as President-elect of the World Endometriosis Society (WES) and Member of the Scientific and Technical Advisory Group for the Human Reproduction Programme at the World Health Organisation (WHO). D.E. reports serving in unpaid roles as an Early Career Ambassador for the WES and a member of the Gynecology Clinical Practice Guideline Committee of the Society of Obstetricians and Gynae- cologists of Canada. J.A. reports consultancy, medical advisory board, and speaker fees from Hologic, Organon, Gedeon Richter, Pharmacosmos, and Ziwig; unpaid leadership roles as Chair of the Australian Endometriosis Clinical Guideline, Medical Director of the Ainsworth Endometriosis Research Institute, and member of the Australian Government Endome- triosis Advisory Group; former roles as Chair of the AAGL Practice Com- mittee, President of the Australian Gynaecological Endoscopy and Surgery Society, and member of the FIGO Menstrual Disorders Group; and is a competitive Australian Government MRFF/NHMRC grant holder. K.T.Z. reports receiving institutional research funding from Aspira Ltd, Bayer AG, Exeltis Ltd, Proteomics Inc, and Roche Diagnostics Ltd; institutional con- sultancy fees from Apikal Ltd, Hirundo Biosciences, Hoffmann-La Roche Ltd, Rathlin Therapeutics, and ZEG Berlin; and serving in an unpaid role as a Board Member of the World Endometriosis Research Foundation (WERF). L.C.G. reports unpaid roles as Past President and Board Member of the International Federation of Fertility Societies and Board Member of the WERF. L.R. reports consultancy, medical advisory board, and speaker fees from Besins Healthcare, Merck, Organon, and Gedeon Richter; Board Director of the Grevillea Foundation, and former roles as President of the WES and President of the Fertility Society of Australia and New Zealand; and is a competitive Australian Government MRFF/NHMRC grant holder. G.D.A. reports unpaid roles as President of the WERF and Chair of the International Committee for Monitoring Assisted Reproductive Technologies (ICMART). ML reports research and institutional support from the Australian MRFF, Pfizer, AbbVie, CanSAGE, CIHR, Hamilton Health Sciences, and Hyivy; consulting fees from AbbVie, Hologic, Chugai, Gesynta, Roche Diagnostics, Afynia, and Pfizer; honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from AIUM, GE Healthcare, Bayer, and AbbVie; unpaid leadership roles with the WES Early Career Board, ISUOG Next Generation, and the Gynecologic Ultrasound Society; and affiliations with Imagendo, SUGO– Specialised Ultrasound in Gynecology & Obstetrics, and Endometriosis360. A.G.S. reports receiving honoraria and travel support for industry-sponsored presentations from Bayer Philippines and Abbott Ltd and serving in unpaid board and committee roles with the Asian Society of Endometriosis and Adenomyosis, the WES, the Interna- tional Federation for Pediatric and Adolescent Gynecology, and the Asian Initiative for Reproduction (ASPIRE). J.W.M. reports serving in unpaid roles as a Board Member of the WES, Member of the Special Interest Group on Endometriosis of the European Society for Gynaecological Endoscopy, and Past President and Board Member of the Special Interest Group Endome- triosis, the Netherlands. PJY reports receiving travel funding from the WES, the Society for Endometriosis and Uterine Disorders, and the European Endometriosis League, and serving in unpaid roles as a Board Member of the WES and Member of EndoAct. I.F. reports serving as Chief ScientificO fficer of Nura Health and Co-founder of Sur180 Therapeutics, and in unpaid roles as a Board Member of the WES, Board Member of the Fundación Puertor- riqueña de Pacientes con Endometriosis (ENDOPR), and Member of the WHO Endometriosis Expert Group. S.A. reports serving in unpaid roles as a Board Member of the WES and Executive Board Member of the American https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 12 Association of Gynecologic Laparoscopists (AAGL) Complex Benign Gynecology Fellowship Board of Directors. E.W. reports serving in unpaid roles as Founder of the Endometriosis Foundation of Kenya and Co-Chair of the World Endometriosis Organisations. AH reports grant funding from the EU, UKRI, NIHR, CSO, Wellbeing of Women, and Roche Diagnostics; con- sulting fees from Roche Diagnostics, Absci, Gesynta, and Theramex; lecture fees from Gedeon Richter and Theramex; published UK patent applications for a diagnostic biomarker for endometriosis and a predictor of gabapentin treatment response; and unpaid roles as President of the WES, Co-Editor-in- Chief of Reproduction and Fertility, Trustee and Medical Advisor to Endo- metriosis UK, and Specialty Advisor to the Scottish Government’sC h i e f Medical Officer for Obstetrics and Gynaecology. All other authors declare no competing interests. Additional information Supplementary informationThe online version contains supplementary material available at https://doi.org/10.1038/s43856-026-01907-w . Correspondenceand requests for materials should be addressed to Dereje G. Gete or Gita D. Mishra. Peer review information Communications Medicinethanks Babu Karavadra and the other, anonymous, reviewer(s) for their contribution to the peer review of this work. A peer review file is available. Reprints and permissions informationis available at http://www.nature.com/reprints Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modi fied the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party

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in this article are included in the article ’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by- nc-nd/4.0/. © The Author(s) 2026 Dereje G. Gete 1 ,D e v o nE v a n s2, Jason Abbott3,4, Leticia W. Ribeiro1, Krina T. Zondervan 5, Linda C. Giudice6, Luk Rombauts7, Mathew Leonardi8, Hemantha Senanayake9,G .D a v i dA d a m s o n10, Elsie Wandera11,12, Femke Jansen12,13, Sally Motlock1, Angela G. Sison-Aguilar14, Sawsan As-Sanie15, Idhaliz Flores16,K a o r iK o g a17,M a r i n aK v a s k o f f18, Jacques WM Maas19, Ezekiel Onyonka Mecha20,E n g i nO r a l21, Adrienn Salamon22, Ertan Saridogan23,P a u lJ .Y o n g24, Neil P. Johnson25,26, Stacey A. Missmer15,27,30, Andrew Horne 28,30, Manjulaa Narasimhan 29,30 &G i t aD .M i s h r a1,30 1Australian Women and Girls’ Health Research Centre, School of Public Health, The University of Queensland, Brisbane, QLD, Australia.2Department of Obstetrics, Gynecology, and Reproductive Sciences, University of Manitoba, Winnipeg, MB, Canada.3Discipline of Women’s Health, School of Clinical Medicine, The University of New South Wales, Sydney, NSW, Australia.4National Endometriosis Clinical and Scientific Trials (NECST) Network, UNSW, Sydney, NSW, Australia.5Oxford Endo- metriosis CaRe Centre, Nuffield Department of Women’s and Reproductive Health, University of Oxford, Oxford, UK.6University of California San Francisco, San Francisco, CA, USA.7Department of Obstetrics and Gynaecology, Monash University, Clayton, VIC, Australia.8Department of Obstetrics and Gynecology, McMaster University, Hamilton, ON, Canada.9Department of Obstetrics and Gynaecology, University of Colombo, Colombo, Sri Lanka.10Department of Obstetrics and Gyne- cology, Stanford University School of Medicine, Stanford, CA, USA.11Endometriosis Foundation of Kenya, Nairobi, Kenya.12World Endometriosis Organisation, Edinburgh, UK.13Endometriose Stichting, Sittard, The Netherlands.14University of the Philippines Manila College of Medicine, Manila, Philippines.15Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, MI, USA.16Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico. 17Department of Obstetrics and Gynecology, Reproductive Medicine, Graduate School of Medicine, Chiba University, Chiba, Japan.18Université Paris-Saclay, UVSQ, Inserm, CESP, Villejuif, France.19Department of Obstetrics and Gynaecology, Maastricht University Medical Centre and Grow, research institute for oncology and reproduction, Maastricht, The Netherlands.20Senior Lecturer, Department of Biochemistry, University of Nairobi, Nairobi, Kenya.21Department of Clinical Sciences, Obstetrics and Gynaecology, Umeå University, Umeå, Sweden.22Chair of the Board of Trustees at the Women’s Health Foundation, Budapest, Hungary.23University College London, Elizabeth Garrett Anderson Institute for Women’s Health and University College London Hospital, Women’s Health Division, London, UK.24Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC, Canada.25Flinders University, Adelaide, SA, Australia.26University of Auckland and Auckland Gynaecology Group, Auckland, New Zealand.27Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA, USA.28Centre for Reproductive Health, Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK.29Department of Sexual, Reproductive, Maternal, Child, Adolescent Health and Ageing (LHR), World Health Organization, Geneva, Switzerland.30These authors jointly supervised this work: Stacey A. Missmer, Andrew Horne, Manjulaa Narasimhan, Gita D. Mishra. e-mail: [email protected]; [email protected] https://doi.org/10.1038/s43856-026-01907-w Article Communications Medicine | (2026) 6:495 13

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