The Barriers That Adolescents and Young Adults with Endometriosis Experience in the United States: A Conceptual Review and Model

Introduction Endometriosis is a chronic disease that vastly impacts patients’ lives, especially those who do not know how to manage the disease, understand the treatment options, or find specialists who can provide the proper care. The aim of this review and conceptual model is to provide a public health foundation for physicians and health care providers to further understand the barriers to endometriosis treatment that young adults and adolescents with endometriosis (10–25 years of age) experience grounded by theory and constructs.

A search was performed on PubMed with mix of MesH headings and keywords such as “adolescent,” “Adult, Young,” “United States,” Endometriosis,” and “Barrier.” Papers were reviewed through an inclusion/exclusion process to reduce bias. All papers that were excluded had no relevance to endometriosis, young adults, and adolescents, or were not located in the United States.

Our conceptual model presents the individual factors within the social ecological model (SEM), belief model, social cognitive theory (SCT) (outcome expectations, observational learning), social support, theory of fundamental causes (stigma, racism and discrimination, the built environment, lack of health policies, high costs, lack of health literacy among patients, lack of knowledge among providers), experiences, and outcomes.

The conceptual model and critical review highlight the intertwined, multi-faceted barriers that patients face to endometriosis treatment at each level of the SEM and may serve as an excellent starting point for future research. Policy Implications There are no existing policies for endometriosis patients. This is the first conceptual model to include multiple public health theories in relation to endometriosis and can best guide policy makers, program development, public health interventions, and researchers in mitigating patient barriers. Similar content being viewed by others Availability of Data and Materials The data that support this study will be shared upon reasonable request to the corresponding author.

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Behavioral, cognitive, and emotional coping strategies of women with endometriosis: A critical narrative review. Archives of Women’s Mental Health, 21(1), 1–13. Author information Authors and Affiliations Corresponding author Ethics declarations 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. Appendix. PubMed search strategy Appendix. PubMed search strategy (Adolescent [MeSH] OR Adolescen* OR Youth* OR Teenag* OR Humans[MeSH] OR “Adult, Young” OR “Young Adults”) AND (“Young adult*” OR “Young Adult” [MeSH]) AND (“United States” [MeSH] OR “United State*” OR “United States/Epidemiology”[MeSH]) AND (Barrier* OR "Perceived Barrier*" OR Coping OR "Psychological Wellbeing" OR "Social Stigma" [MeSH] OR "Quality of Life"[MeSH] OR "Adaptation, Psychological"[MeSH] OR "Coping Strategies" OR “Social Stigma*” OR “Stigma, Social” OR “Interpersonal Relations” [MeSH] OR “Interpersonal Relation” OR “Partner Communication” OR “Social Relationship*” OR "Life Quality" OR "Health-Related Quality Of Life" OR “HRQQL” OR “Health Related Quality of Life” OR “Employment/Education”[MeSH] OR Employment [MeSH] OR Education [MeSH] OR “Coping Behavior” OR “Behavior, Coping” OR “Coping Skill*” OR “Burden of Illness” OR “Disease Burden” OR “Cost of Illness” [Mesh] OR “Mental Disorders” OR “Stress Disorders, Traumatic, Acute”[MeSH] OR “Patient Satisfaction” [MeSH] or Physician–Patient Relations* OR “Patient Satisfaction” OR “Perception*” OR "Perception"[Mesh])AND (Therapeutics [MeSH] OR “Treatment Effectiveness” OR Treatment* OR Therapy* OR Laparoscopy OR Laparoscopy [MeSH] OR Excision OR Physician[MeSH]) AND (Endometriosis[MeSH] OR "Endometriosis/epidemiology"[MeSH] OR "Endometriosis/physiopathology"[Mesh] OR “Endometriosis / psychology” OR Endometrio* OR Pelvic Pain [MeSH] OR Endometrio* OR Endometriosis OR Endometrioma* OR Adhesions OR “Peritoneal Endometriosis” OR Endometriosis/Therapy*[MeSH] OR “Deep Infiltrating Endometriosis” OR “Ovarian Endometriosis” OR “Women’s Health” [MeSH] OR “Chronic Pelvic Pain” OR “Gynecological Disease” OR “Gynecologic Disease*” OR “Pelvic Pain” OR “Pains, Pelvic” OR “Pelvic Pain*” OR “Endometriosis.” Rights and permissions Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law. About this article Cite this article Niedenfuehr, J., King, L.M. The Barriers That Adolescents and Young Adults with Endometriosis Experience in the United States: A Conceptual Review and Model. Sex Res Soc Policy 22, 580–595 (2025). https://doi.org/10.1007/s13178-024-00972-x Accepted: Published: Version of record: Issue date: DOI: https://doi.org/10.1007/s13178-024-00972-x