{"paper_id":"1a34266a-594a-49e2-afff-ff0d060b1627","body_text":"npj | women's health Brief communication\nhttps://doi.org/10.1038/s44294-025-00096-6\nUnderstanding endometriosis knowledge\namong diagnosed and symptomatically at-\nrisk individuals in Australia\nCheck for updates\nAnne Reinhardt 1 , Amelia K. Mardon2,3, Sarah Eitze4,5,H a n n a hA d l e r6, Danielle Howe2,\nMichelle O’Shea2 & Mike Armour2\nEndometriosis affects 5 –14% of women and those presumed female at birth (PFAB), yet public\nunderstanding remains limited. In an online survey of 427 Australians, diagnosed individuals had better\nknowledge about endometriosis than those at risk but undiagnosed. In detail, at-risk individuals\nunderestimated prevalence, consequences, and diagnostic pathways. Targeted education may\nimprove symptom recognition and healthcare engagement, supporting earlier diagnosis and\nbetter care.\nEndometriosis is a chronic in flammatory condition characterized by\nendometrial-like tissue growing outside the uterus, often resulting in pain,\ninfertility, and other symptoms. In Australia, around 1 in 7 women and\nindividuals presumed female at birth (PFAB) are diagnosed with endome-\ntriosis by the age of 49 years (Australian Institute of Health and Welfare, 1 in\n7 Australian women aged 44–49 have endometriosis,https://www.aihw.gov.\nau/news-media/media-releases/2023/2023-september/1-in-7-australian-\nwomen-aged-44-49-have-endometriosis, 2023), though owing to under-\ndiagnosis the true prevalence is likely higher\n1. Structural and social barriers,\nincluding menstrual stigma and knowledge gaps 2, often contribute to\nextensive delays between symptom onset and diagnosis. These delays can be\nbroken into time between symptom presentation and seeking medical\nattention, and time between seeking medical attention and receiving a\ndiagnosis. In Australia, these are 2.9 years and 4.9 years respectively, with\nmost people seeingfive doctors before receiving a formal diagnosis\n3.\nIn the context of endometriosis, increased knowledge can encourage\npositive help-seeking behaviors4. Knowledge is crucial for informed health\ndecision-making because it empowers individuals to recognize symptoms,\nseek timely medical advice, and evaluate treatment options. Furthermore,\ninformed people have agency to engage in shared decision-making with\nhealthcare providers, advocate for t hemselves, and adhere to treatment\nplans, ultimately improving health and quality of life outcomes\n5.A c c o r d -\ningly, this study explored knowledge disparities between individuals with a\nconfirmed endometriosis diagnosis and those at risk due to symptom pre-\nsence but without diagnosis. We asked: What do diagnosed and at-risk\nindividuals know about endometriosis?\nA c r o s st h ef u l ls a m p l e(N = 427), overall endometriosis knowledge was\nrather good (M =7 . 2 0o u to f9 ,SD = 1.33), with significantly higher scores\namong diagnosed individuals (n = 143; M = 7.83, SD = 0.99) than at-risk\nindividuals (n = 284; M = 6.88, SD = 1.36; t(373.0) = 8.19, p < .001). Item-\nlevel analyses revealed important knowledge differences (Fig.1;f o rd e t a i l e d\nChi² tests for each item, see Supplement 1 on OSF).\nWhile the sample demonstrated solid understanding of core aspects—\nsuch as disease contributors (K1; diagnosis group: 100%, at-risk group:\n99%), typical symptoms (K2; diagnosis group: 98%, at-risk group: 100%),\nconsequences of the disease (K6; diagnosis group: 99%, at-risk group: 97%),\nand treatment options (K8; diagnosis group: 99%, at-risk group: 92%) —\ndiagnosed individuals consistently outperformed at-risk participants on\nmore nuanced items. For instance, 90% of the diagnosed group correctly\nidentified “pain during sex” as a key symptom (K3), compared to only 73%\nin the at-risk group. Instead, notable shares of the at-risk group mistakenly\nchose “increased progesterone levels” (14%) or “mood changes” (11%).\nDiagnostic knowledge (K4) also differed sharply, with 97% of diagnosed\nindividuals correctly identifying laparoscopy as a de finitive diagnostic\nmethod, compared to 70% of at-risk individuals—26% of whom incorrectly\nbelieved ultrasound was sufficient. While the phrasing of K4 (“most widely\nacceptedway”) may have invited varied interpretations, this applied equally\nacross groups. The significant difference nevertheless points to a meaningful\nknowledge gap. Knowledge about mental health impacts (e.g., depression;\nK7) was lower among the at-risk group (75%) compared to the diagnosed\ngroup (86%), and misconceptions including attributing weight gain to\nendometriosis were more prevalent among at-risk participants (22% vs.\n1Department of Media and Communication, Ludwig-Maximilians-Universität München, Oettingenstr. 67, 80538 Munich, Germany. 2NICM Health Research\nInstitute, Western Sydney University, Westmead, NSW, Australia. 3IIMPACT in Health, University of South Australia, Adelaide, SA, Australia. 4Department of Media\nand Communication Sciences, University of Erfurt, Nordhaeuser Strasse 63, 99089 Erfurt, Germany.5Health Communication, Implementation Sciences, Bernhard\nNocht Institute for Tropical Medicine, Hamburg, Germany. 6Centre of Social and Cultural Research, Grif fith University, 170 Kessels Road NathanQLD, 4111\nBrisbane, Australia. e-mail: anne.reinhardt@ifkw.lmu.de\nnpj Women's Health |            (2025) 3:46 1\n1234567890():,;\n1234567890():,;\n\n13%; however, the differences in K7 did not reach statistical signi ficance\nafter correction for multiple testing, see Supplement 1).\nNotably, both groups exhibited limited knowledge of statistical infor-\nmation. Only half of the diagnosed group and 35% of the at-risk group\ncorrectly estimated the average time to diagnosis (K5). Diagnosed indivi-\nduals tended to overestimate (41% answered 10 –12 years), while at-risk\nparticipants tended to underestimate (28% answered 2–3 years). Similarly,\nendometriosis prevalence knowledge (K9) was limited, with 64% of the\ndiagnosis group and 47% of the at-risk group answering correctly: 21% of\nthe diagnosis group overestimated prevalence (believing that 15 –18% of\nwomen/PFAB are affected), while 30% of the at-risk group underestimated\nit, assuming only 5–7% are affected.\nFig. 1 | Knowledge assessment by group and item (with 95% confidence interval).\nRelative frequencies of response options for each of the nine knowledge items\n(panels a to i), stratified by group. Blue bars represent participants in the at-risk\ngroup, and red bars represent participants with a formal endometriosis diagnosis.\nPercentages refer to the proportion of participants selecting each response option.\nError bars indicate 95% confidence intervals. Correct response options are indicated\nwith an asterisk ( *).\nhttps://doi.org/10.1038/s44294-025-00096-6 Brief communication\nnpj Women's Health |            (2025) 3:46 2\n\nThe findings suggest that public kno wledge about endometriosis in\nAustralia among diagnosed and at-risk individuals is relatively high, parti-\ncularly regarding basic symptomatology, disease causes, and treatment\noptions. This encouraging baseline may re flect the impact of recent\nawareness campaigns and increased media coverage\n3. However, deeper\nanalyses reveal persistent knowledge gaps—especially among individuals at\nrisk who have not yet received a diagnosis—that have significant implica-\ntions for both public health and clinical care.\nOne key issue is the widespread underestimation of diagnostic delays\namong at-risk individuals. While those with a con firmed diagnosis often\noverestimated the average time to diagnosis —likely reflecting their own\nexperiences with symptom invalid ation and extended diagnostic\njourneys6—at-risk individuals were more likely to underestimate how long\nthe process can take. This gap points to structural and social barriers that\ncontribute to delays, including triv ialization of menstrual pain, limited\nclinical expertise, and importantly, menstrual shame and taboo\n7,8. Menstrual\nstigma reduces menstrual health literacies and silences the personal stories\nof people who have endured long diagnostic pathways\n9. Accordingly, at-risk\nindividuals may be unaware that others have similarly struggled to receive a\nformal diagnosis, leading them to assume that delays are unusual and/or\ntheir own symptoms are not serious enough to warrant ongoing medical\nattention. This perception is often reinforced by a broader cultural ignor-\nance toward menstrual-related pain, which is frequently dismissed or tri-\nvialized rather than recognized as a legitimate health concern\n8,10. A cycle of\nsilence then ensues: those not yet diagnosed may fail to seek continued help,\nwhile those who have been diagnosed m ay hesitate to share their experi-\nences. Targeted education must extend beyond factual knowledge of the\ndisease. It should address how socialnorms contribute to diagnostic delay—\nnormalizing open discussions of menstrual and pelvic pain, and by making\npersonal diagnostic journeys more vi sible through public discourse.\nBreaking this cycle of silence is essential to helping people recognize their\nsymptoms not as isolated experiences, but as part of a broader pattern that\ndeserves medical attention.\nA second critical misconception concerns endometriosis prevalence.\nMany at-risk individuals signi ficantly underestimated how common\nendometriosis is—often assuming that only 5 –7% of women/PFAB indi-\nviduals are affected, when estimates range from 8–15%, with some studies\nsuggesting even higher rates due to underdiagnosis\n11.T h i sfinding could\nindicate how those affected remain unable to adequately represent their\ninterests in the public. If a condition is perceived as rare, individuals may be\nless likely to relate their own experiences to it, dismissing symptoms or\nattributing them to other causes. Public health communication must\ntherefore work to normalize endometriosis as a widespread health concern\nand combat the perception that those affected are exceptions.\nThird, symptom misconceptions—particularly that mood changes are\na hallmark of endometriosis—warrant careful consideration. While endo-\nmetriosis is associated with elevated risks for mental health conditions such\nas depression and anxiety, these are often secondary consequences of\nchronic pain, diagnostic delays, and the social and reproductive challenges\nposed by the disease\n12. Conversely, general mood changes are not considered\na diagnostic criterion for endometriosis. In our study, 11% of at-risk indi-\nviduals incorrectly selected“mood changes” as a key symptom, compared to\n4% in the diagnosed group. This difference potentially re flects cultural\nnarratives inaccurately con flating menstruation with volatility or\nirrationality\n13. These interpretations can legitimize endured stereotypes and\nmay contribute to stigmatization of people with endometriosis and/or those\nexperiencing mental health issues. Consequently, both conditions are taken\nless seriously than they should be. Public health messaging should therefore\nacknowledge the psychological burden that can accompany endometriosis\nwithout reinforcing stereotypical or dismissive language.\nFourth, even among diagnosed indiv iduals, certain knowledge gaps\nremain. Despite their relatively high awareness overall, many were unaware\nof accurate prevalence data and tended to overestimate the time to diagnosis.\nThese findings underscore the need for continuing patient education post-\ndiagnosis, including resources on long-term management, mental health,\nand navigating healthcare systems\n12,14. Providing this information can\nsupport coping strategies and empower individuals to advocate for them-\nselves in future medical encounters.\nEfforts to address these gaps should focus on practical strategies. Public\nhealth initiatives could develop targeted awareness campaigns to address\nstatistical misconceptions using infographics, video explainers, and testi-\nmonials that present relatable and norm-correcting information. Colla-\nborating with schools, workplaces, a nd community organizations could\nhelp integrate endometriosis education into broader health literacy efforts,\nnormalizing discussions about the condition from an early age\n15. Digital\nplatforms and social media campaigns could expand outreach and impor-\ntantly credentialed information16, building on the success of past campaigns\nin Australia.\nFinally, healthcare providers should be equipped with tools to\nemphasize key facts during clinical practice. Checklists or patient handouts\ncould help debunk myths and provide clearer guidance. Additionally,\ntraining medical professionals to proactively address the mental health\naspects of endometriosis would ensure comprehensive care that includes\npsychological support. The quality of medical care provided to those with\nendometriosis also needs to be assessed to ensure that medical professionals\nare adequately educated on endometriosis. It is important that the onus of\nendometriosis education is not solely placed on ‘the patient,’ and health\nc a m p a i g n ss h o u l da l s ob eg e a r e dt o w a r dt h em e d i c a lc o m m u n i t yi n\nimproving their knowledge.\nMethods\nSampling procedure\nThe study received ethical approval from the Western Sydney University\nHuman Research Ethics Committee (ID H16020) confirming that this study\ncomplied with the Declaration of Hels inki. Participants were recruited\nbetween May 26 and July 31, 2024, through targeted social media adver-\nt i s e m e n t s( M e t a )t op e o p l ei nA u s t r a l i aa g e d1 8–45 years. Eligibility criteria\nincluded: (1) being between 18–45 years old, (2) born as female, (3) living in\nAustralia, and (4) reporting at least one symptom related to endometriosis\n(see measures section for assessment criteria).\nDesign\nWe conducted an online survey targeting Australian citizens who met the\nscreening criteria. After providing informed consent, participants com-\npleted a self-assessment for endometriosis and shared information\nregarding their awareness and personal diagnosis of the condition. Subse-\nquently, we assessed participants’ endometriosis knowledge and examined\nvariables related to menstrual and endometriosis (the more specific findings\nrelated to stigma will be reported separately). Overall, the study design was\nadapted from a previous study of the authors\n2.\nSample\nThe final study sample included 427 participants who either had a formal\ndiagnosis of endometriosis (n = 143) or were classified as at-risk based on\ntheir reported symptoms (n = 284). At-risk status was de fined as experi-\nencing severe menstrual pelvic pain at least occasionally despite taking\npainkillers, in combination with at least one of the following symptoms\noccurring occasionally: diarrhea and/or bowel pain during menstruation,\nabdominal pain unrelated to menstruation, or pain during intercourse. To\nensure data quality, participants with a mean survey completion time of less\nthan 3 min were excluded.\nOf the final sample, 87.8% (n = 375) identified as women, while 11.2%\n(n =4 8 ) i d e n t ified as other (i.e., male, genderqueer, transgender, or non-\nbinary), and another 1% (n = 4) preferred not to say. Regarding education,\n34.4% ( n = 147) had lower to medium education levels (up to\nupper secondary and post-secondary vocational education), and 64.4%\n(n = 275) held a tertiary degree (n = 5 preferred not to disclose their edu-\ncational status). A slightly higher proportion of participants in the at-risk\ngroup did not hold a university degree, which could have in fluenced\nresponse patterns in the knowledge me asurement. However, it is worth\nhttps://doi.org/10.1038/s44294-025-00096-6 Brief communication\nnpj Women's Health |            (2025) 3:46 3\n\nnoting that only one participant in the at-risk group had no formal school\nqualification, while all others had completed at least a secondary school\ndegree (equivalent to Year 10), indic ating an overall high educational\nbaseline across the sample. All participants reported being familiar with the\nterm endometriosis. A detailed description of the sample can be found in\nTable 1.\nMeasures\nThe self-test for endometriosis symptoms2 included the most common\nsymptoms of the condition. Participants rated their experiences on a scale\nfrom 1 (never) to 5 (always). Items included pelvic pain during menstrua-\ntion, the use of painkiller medication, and pelvic pain despite medication\nintake. Additional questions addressed diarrhea and/or bowel pain during\nmenstruation, pain during sexual int ercourse, and pelvic pain occurring\nseveral days a month, independent of menstruation.\nParticipants’ endometriosis diagnosis status was assessed with a\ndichotomous variable:“Have you yourself been diagnosed with endome-\ntriosis?” (0 = no, 1 = yes).\nLastly, knowledge of endometriosis was evaluated through nine\nsingle-choice questions covering the disease ’sd e finition, incidence,\nsymptoms, and treatment options\n8. Each question offered one correct\nanswer and three distractors. Correct responses were summed to\ncreate a knowledge score ranging from 0 ( “no correct answers ”)t o9\n(“all answers correct ”). An overview of all knowledge items is pro-\nvided in Table 2.\nTable 1 | Sample characteristics\nOverall Diagnosed At-risk\nn % n % n %\nGender identity\nFemale 375 87.8 135 94.4 240 84.5\nOther 48 11.2 8 5.6 40 14.1\nPrefer not to say 4 1.0 –– 4 1.4\nEducation\nLower/medium 147 34.4 34 23.8 113 39.8\nHigher 275 64.4 98 68.5 167 58.8\nPrefer not to say 5 1.2 10 7.0 4 1.4\nSociodemographic characteristics of the overall sample ( N = 427), the diagnosed subsample\n(N = 143), and the at-risk subsample (N = 284). The table reports distributions of gender identity and\neducational attainment. The gender category “other” includes participants identifying as male,\ngenderqueer, transgender, or non-binary.\nTable 2 | Knowledge questionnaire\nName Question Response options\nK1 Which of these is the main contributor to endometriosis symptoms? 1 = “Cells similar to the lining of the uterus found in the pelvis ”\n2 = “Sexually transmitted infections such as Herpes or Chlamydia ”\n3 = “Side effects of contraception pills ”\n4 = “Complications during pregnancy/birth ”\nK2 What is a typical symptom of endometriosis? 1 = “Severe menstrual pain ”\n2 = “Increased estrogen levels ”\n3 = “Photosensitivity”\n4 = “Joint pain”\nK3 What is another common symptom of endometriosis? 1 = “Pain during sex ”\n2 = “Increased body temperature during the period ”\n3 = “Increased progesterone levels ”\n4 = “Mood changes”\nK4 What is the most widely accepted way to diagnose endometriosis? 1 = “Blood test”\n2 = “Ultrasound examination”\n3 = “Laparoscopy”\n4 = “Via a vaginal swab ”\nK5 How long, on average, does it take to get an endometriosis diagnosis in Australia? 1 = “Approximately 10–12 months”\n2 = “Approximately 2–3 years”\n3 = “Approximately 6–8 years”\n4 = “Approximately 10–12 years”\nK6 What is a possible consequence of endometriosis? 1 = “Infertility”\n2 = “Gynecomastia (abnormal non-cancerous enlargement of one or\nboth breasts)”\n3 = “Hemorrhoids”\n4 = “Increased blood sugar levels ”\nK7 What other condition is commonly experienced by people with endometriosis? 1 = “Mental health issues (e.g., depression) ”\n2 = “Weight gain”\n3 = “Increased risk for infections such as Herpes ”\n4 = “Hair loss”\nK8 How can endometriosis be treated? 1 = “Surgical removal of the tissue ”\n2 = “Testosterone injections”\n3 = “Medication for muscle relaxation ”\n4 = “Antibiotics”\nK9 What is the current estimate for how many women and people assigned female at birth are\naffected by endometriosis in Australia?\n1 = “2–3% (2 to 3 out of 100) ”\n2 = “5–7% (5 to 7 out of 100) ”\n3 = “8–15% (8 to 15 out of 100) ”\n4 = “15–18% (15 to 18 out of 100) ”\nOverview of all knowledge items and corresponding response options (single choice format). Correct response options are indicated in bold.\nhttps://doi.org/10.1038/s44294-025-00096-6 Brief communication\nnpj Women's Health |            (2025) 3:46 4\n\nData availability\nThe datasets and R codes for this study are available in the Open Science\nFramework repository and can be accessed via this link:https://osf.io/spzej/?\nview_only=17961cfb1a664e6eb70be280a4b1d7c2.\nCode availability\nThe underlying code for this study is available in the Open Science Fra-\nmework repository and can be accessed via this link: https://osf.io/spzej/?\nview_only=17961cfb1a664e6eb70be280a4b1d7c2.\nReceived: 22 April 2025; Accepted: 23 July 2025;\nReferences\n1. Reid, R. et al. The prevalence of self-reported diagnosed\nendometriosis in the Australian population: results from a nationally-\nrepresentative survey. BMC Res. Notes 12, 88 (2019).\n2. Eitze, S. & Reinhardt, A. Keep Period Pain a Secret? 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Gynecol. 216, 451–458.e1 (2017).\nAcknowledgements\nThis study received no funding.\nAuthor contributions\nA.R.: Conceptualization, Methodology, Formal Analysis, Data Curation,\nWriting (Original Draft), Writing (Review & Editing), Visualization, Supervision,\nProject Administration M.M.: Methodology, Software, Investigation, Writing\n(Original Draft), Writing (Review & Editing), Project Administration SE:\nConceptualization, Methodology, Writing (Original Draft), Writing (Review &\nEditing) H.A.: Writing (Original Draft), Writing (Review & Editing) D.H.: Writing\n(Original Draft), Writing (Review & Editing) M.O.: Writing (Original Draft),\nWriting (Review & Editing) M.A.: Conceptualization, Resources, Writing\n(Original Draft), Writing (Review & Editing), Supervision, Project\nAdministration.\nFunding\nOpen Access funding enabled and organized by Projekt DEAL.\nCompeting interests\nThe authors declare no competing interests.\nAdditional information\nSupplementary informationThe online version contains supplementary\nmaterial available at\nhttps://doi.org/10.1038/s44294-025-00096-6\n.\nCorrespondenceand requests for materials should be addressed to\nAnne Reinhardt.\nReprints and permissions informationis available at\nhttp://www.nature.com/reprints\nPublisher’s note Springer Nature remains neutral with regard to\njurisdictional claims in published maps and institutional affiliations.\nOpen Access This article is licensed under a Creative Commons\nAttribution 4.0 International License, which permits use, sharing,\nadaptation, distribution and reproduction in any medium or format, as long\nas you give appropriate credit to the original author(s) and the source,\nprovide a link to the Creative Commons licence, and indicate if changes\nwere made. The images or other third party material in this article are\nincluded in the article ’s Creative Commons licence, unless indicated\notherwise in a credit line to the material. If material is not included in the\narticle’s Creative Commons licence and your intended use is not permitted\nby statutory regulation or exceeds the permitted use, you will need to\nobtain permission directly from the copyright holder. To view a copy of this\nlicence, visit http://creativecommons.org/licenses/by/4.0/\n.\n© The Author(s) 2025\nhttps://doi.org/10.1038/s44294-025-00096-6 Brief communication\nnpj Women's Health |            (2025) 3:46 5","source_license":"CC0","license_restricted":false}