A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis

Amanda C de C Williams, Honor McGrigor
BMC women's health · 2024 · vol. 24(1) , pp. 50 · doi:10.1186/s12905-023-02874-3 · PMID:38238741 · PMC10795225 · W4390984689
article OA: gold CC0 ⤵ 12 in-corpus citations
📄 Open PDF View on OpenAlex View on PubMed View at publisher
⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This synthesis of qualitative studies and surveys identified ten themes describing women's psychological experiences with endometriosis pain, which differed from standard pain models and highlighted social management difficulties.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This systematic thematic synthesis combined survey evidence and qualitative studies on women’s psychological experiences of painful endometriosis, using database searches (Medline, Embase, PsycInfo, and others) to extract 22 survey studies and 33 qualitative studies from which psychological components of pain could be synthesized. Across included work, survey findings were mostly limited to associations between pain and distress/quality of life and rarely mapped onto coherent psychological models, while qualitative studies emphasized lived experience, including diagnosis and treatment trajectories and occasional attention to meaning and identity; the thematic synthesis generated 10 themes grouped around internal experience, interface with the external world, social/interpersonal effects, and medical encounters. A stated limitation is that the psychological components described only partly corresponded to dominant fear-and-avoidance models largely derived from musculoskeletal pain research, with fewer fears about physical integrity and more concern about managing symptoms in social settings such as work. This paper is centrally about endometriosis — a thematic synthesis of qualitative studies and surveys describing the psychological experience of painful endometriosis.

Read from the paper's body, not the abstract. Not a substitute for reading the paper. No clinical advice. How this works

Abstract

BACKGROUND: Endometriosis is a widespread problem in women of reproductive age, causing cyclical and non-cyclical pain in the pelvis and elsewhere, and associated with fatigue, fertility problems, and other symptoms. As a chronic pain problem, psychological variables are important in adjustment and quality of life, but have not been systematically studied. METHODS: A systematic search of multiple databases was conducted to obtain surveys and qualitative studies of women's experience of pain from endometriosis. Surveys were combined narratively; qualitative studies were combined by thematic synthesis, and the latter rated for methodological quality. RESULTS: Over 2000 records were screened on title and abstract, and provided 22 surveys and 33 qualitative studies from which accounts could be extracted of the psychological components of pain in endometriosis. Surveys mostly addressed quality of life in endometriosis, with poorer quality of life associated with higher levels of pain and of distress, but few referred to coherent psychological models. Qualitative studies focused rather on women's experience of living with endometriosis, including trajectories of diagnosis and treatment, with a few addressing meaning and identity. Thematic synthesis provided 10 themes, under the groupings of internal experience of endometriosis (impact on body, emotions, and life); interface with the external world (through self-regulation and social regulation); effects on interpersonal and social life, and encounters with medical care. CONCLUSIONS: The psychological components of pain from endometriosis only partly corresponded with standard psychological models of pain, derived from musculoskeletal pain studies, with fewer fears about physical integrity and more about difficulties of managing pain and other symptoms in social settings, including work. Better understanding of the particular psychological threats of endometriosis, and integration of this understanding into medical care with opportunities for psychologically-based pain management, would substantially improve the experience and quality of life of women with painful endometriosis.

My notes (saved in your browser only)

Condition tags

endometriosis

MeSH descriptors

Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Emotions Emotions

Citation neighborhood

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.

References (88)

Cited by (13)

Source provenance

europepmc
last seen: 2026-06-16T06:07:01.518242+00:00
openalex
last seen: 2026-06-10T17:14:06.276822+00:00
pubmed
last seen: 2026-06-16T06:05:24.908163+00:00
License: CC0 · commercial use OK