Williams, Amanda C de C;
Mcgrigor, Honor;
(2024)
A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis.
BMC Women's Health
, 24
(1)
, Article 50. 10.1186/s12905-023-02874-3.
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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.
| Type: | Article |
|---|---|
| Title: | A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1186/s12905-023-02874-3 |
| Publisher version: | http://dx.doi.org/10.1186/s12905-023-02874-3 |
| Language: | English |
| Additional information: | 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/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
| Keywords: | Science & Technology, Life Sciences & Biomedicine, Public, Environmental & Occupational Health, Obstetrics & Gynecology, Pelvic pain, Infertility, Social impact, Quality of life, Delayed diagnosis, Treatment failure, Fear of disease progression, CHRONIC PELVIC PAIN, FEAR-AVOIDANCE MODEL, OF-LIFE, WOMEN, HEALTH, IMPACT, SYMPTOMS, FATIGUE |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10187859 |
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