{"paper_id":"bd9ce050-264e-486f-9865-7a0835778619","body_text":"Abstract\nBackground\nObtaining a diagnosis of endometriosis is often a long and involved journey. Little specific information exists about this journey for young people. This qualitative systematic review and thematic synthesis aimed to describe help-seeking experiences for young people who have been diagnosed with endometriosis, with attention to their needs, priorities, and relationships.\nMethods\nA systematic search was conducted of MEDLINE, Embase, PsycINFO, CINAHL, SocINDEX, Google Scholar, and ProQuest Dissertations and Theses on 18/12/2024. This combined the term “endometriosis” with variants of the concept “help-seeking”. Eligible articles reported the first-person perspectives of young people aged 10–24 years who were diagnosed with endometriosis. Quality assessment was conducted using the QualSyst tool. Thematic synthesis was used to construct themes.\nResults\nA total of 5,287 unique titles were assessed. 29 qualitative or mixed-methods studies (reported in 35 articles) met inclusion. Five analytical themes were generated: (1) Distinguishing ‘normal’ from ‘abnormal’ menstruation is difficult for young people, (2) Young people anticipate unhelpful responses, (3) Healthcare encounters aren’t tailored to young people, (4) Invalidation has disruptive consequences, and (5) Young people need acknowledgment and resources.\nConclusions\nValidating relationships and age-relevant information and resources are needed to improve the help-seeking experiences of young people with endometriosis. Healthcare professionals must also ensure services are tailored to young people’s life stage and concerns.\nTrial registration\nProspero ID CRD42024575314.\nSimilar content being viewed by others\nAcknowledgements\nThe search strategy was refined with help from staff at the UWA Library. Data checking (e.g., checking of QualSyst scores and extraction tables) was performed by a fourth-year undergraduate psychology student.\nAmendments to information provided at registration\nInclusion of other informants’ perspectives (e.g., parents or healthcare providers) was removed from the inclusion criteria once screening commenced, as it was often not possible to determine young people’s diagnostic status from informants’ perspectives. ‘Youths’ in the registered title has been replaced by the collective noun ‘youth’. Two reviewers completed the entire screening process.\nFunding\nFunding for the corresponding author’s broader PhD project was provided by the Graduate Research School of UWA, the Graduate Women (Western Australia) Women in Science Scholarship, and the Australian Government Research Training Program (RTP) stipend scholarship.\nAuthor information\nAuthors and Affiliations\nCorresponding author\nEthics declarations\nEthics approval and consent to participate\nNot applicable (systematic review).\nConsent for publication\nNot applicable.\nCompeting interests\nThe authors declare no competing interests.\nAdditional information\nPublisher’s note\nSpringer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.\nRights and permissions\nOpen Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, 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 changes were made. The images or other third party material 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/4.0/.\nAbout this article\nCite this article\nMeagher, S., Frayne, J., Renshaw-Todd, J. et al. The help-seeking experiences of adolescents and youth with endometriosis: a systematic review and thematic synthesis. BMC Women's Health (2026). https://doi.org/10.1186/s12905-026-04566-0\nReceived:\nAccepted:\nPublished:\nDOI: https://doi.org/10.1186/s12905-026-04566-0","source_license":"CC0","license_restricted":false}