The help-seeking experiences of adolescents and youth with endometriosis: a systematic review and thematic synthesis

Sophie Meagher, Jacqueline Frayne, Frayne J, Jodi Renshaw-Todd, Renshaw-Todd J, Jeneva Ohan, Ohan J, Jeneva; id_orcid 0000-0002-4801-4239 Ohan
BMC women's health · 2026 · vol. 26(1) · doi:10.1186/s12905-026-04566-0 · PMID:42192401 · PMC13393719 · W7162451441
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This qualitative systematic review synthesized findings from 29 studies to describe the help-seeking experiences of adolescents and youth with endometriosis, highlighting difficulties distinguishing symptoms, anticipating unhelpful responses, and a need for tailored care and validation.

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This qualitative systematic review and thematic synthesis examined first-person help-seeking experiences among adolescents and youth aged 10–24 years diagnosed with endometriosis, searching seven databases and including 29 qualitative or mixed-methods studies reported in 35 articles. Five themes described difficulty distinguishing normal from abnormal menstruation, expectations of unhelpful responses, healthcare encounters that were not age-tailored, disruptive consequences of invalidation, and needs for acknowledgment and accessible resources; the review’s inclusion criteria were amended to exclude other informants’ perspectives because diagnostic status was often unclear. This paper is centrally about endometriosis — it focuses specifically on young people’s diagnostic help-seeking experiences, relationships, priorities, and needs.

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Abstract

BACKGROUND: Obtaining 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. METHODS: A 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. RESULTS: A 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. CONCLUSIONS: Validating 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. TRIAL REGISTRATION: Prospero ID CRD42024575314.
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Abstract

Background Obtaining 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.

Methods

A 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.

Results

A 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.

Conclusions

Validating 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. Trial registration Prospero ID CRD42024575314. Similar content being viewed by others

Acknowledgements

The 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. Amendments to information provided at registration Inclusion 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. Funding Funding 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. Author information Authors and Affiliations Corresponding author Ethics declarations Ethics approval and consent to participate Not applicable (systematic review). Consent for publication Not applicable. Competing interests The authors declare no competing interests. Additional information Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Rights and permissions Open 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/. About this article Cite this article Meagher, 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 Received: Accepted: Published: DOI: https://doi.org/10.1186/s12905-026-04566-0

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Condition tags

endometriosis

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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