Self-management strategies amongst Australian women with endometriosis: a national online survey

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Abstract

Background

Endometriosis has a significant negative impact on the lives of women, and current medical treatments often do not give sufficient pain relief or have intolerable side effects for many women. The majority of women with primary dysmenorrhea use self-management strategies (including self-care techniques or lifestyle choices) to help manage period related symptoms, but little is known about self-management in women with endometriosis. The aim of this survey was to determine the prevalence of use, safety, and self-rated effectiveness of common forms of self-management.

Methods

A cross-sectional online survey was distributed via social media using endometriosis support and advocacy groups in Australia between October and December 2017. Women were eligible to answer the survey if they were 18–45, lived in Australia, and had a confirmed diagnosis of endometriosis. Survey questions covered the types of self-management used, improvements in symptoms or reduction in medication, and safety.

Results

Four hundred and eighty-four valid responses were received. Self-management strategies, consisting of self-care or lifestyle choices, were very common (76%) amongst women with endometriosis. The most common forms used were heat (70%), rest (68%), and meditation or breathing exercises (47%). Cannabis, heat, hemp/CBD oil, and dietary changes were the most highly rated in terms of self-reported effectiveness in pain reduction (with mean effectiveness of 7.6, 6.52, 6.33, and 6.39, respectively, on a 10-point scale). Physical interventions such as yoga/Pilates, stretching, and exercise were rated as being less effective. Adverse events were common, especially with using alcohol (53.8%) and exercise (34.2%).

Conclusions

Self-management was very commonly used by women with endometriosis and form an important part of self-management. Women using cannabis reported the highest self-rated effectiveness. Women with endometriosis have unique needs compared to women with primary dysmenorrhea, and therefore any self-management strategies, especially those that are physical in nature, need to be considered in light of the potential for ‘flare ups’.

Electronic supplementary material

The online version of this article (10.1186/s12906-019-2431-x) contains supplementary material, which is available to authorized users.

Related collections

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The social and psychological impact of endometriosis on women's lives: a critical narrative review.

Lorraine Culley, Caroline Law, Nicky Hudson … (2013)

BACKGROUND Endometriosis is a chronic condition affecting between 2 and 17% of women of reproductive age. Common symptoms are chronic pelvic pain, fatigue, congestive dysmenorrhoea, heavy menstrual bleeding and deep dyspareunia. Studies have demonstrated the considerable negative impact of this condition on women's quality of life (QoL), especially in the domains of pain and psychosocial functioning. The impact of endometriosis is likely to be exacerbated by the absence of an obvious cause and the likelihood of chronic, recurring symptoms. The aims of this paper are to review the current body of knowledge on the social and psychological impact of endometriosis on women's lives; to provide insights into women's experience of endometriosis; to provide a critical commentary on the current state of knowledge and to make recommendations for future psycho-social research. METHODS The review draws on a method of critical narrative synthesis to discuss a heterogeneous range of both quantitative and qualitative studies from several disciplines. This included a systematic search, a structured process for selecting and collecting data and a systematic thematic analysis of results. RESULTS A total of 42 papers were included in the review; 23 used quantitative methods, 16 used qualitative methods and 3 were mixed methods studies. The majority of papers came from just four countries: UK (10), Australia (8), Brazil (6) and the USA (5). Key categories of impact identified in the thematic analysis were diagnostic delay and uncertainty; 'QoL' and everyday activities; intimate relationships; planning for and having children; education and work; mental health and emotional wellbeing and medical management and self-management. CONCLUSIONS Endometriosis has a significant social and psychological impact on the lives of women across several domains. Many studies have methodological limitations and there are significant gaps in the literature especially in relation to a consideration of the impact on partners and children. We recommend additional prospective and longitudinal research utilizing mixed methods approaches and endometriosis-specific instruments to explore the impact of endometriosis in more diverse populations and settings. Furthermore, there is an urgent need to develop and evaluate interventions for supporting women and partners living with this chronic and often debilitating condition.

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Author and article information

Contributors

Mike Armour:

ORCID: http://orcid.org/0000-0001-7539-9851

+61 2 4620 3345 , m.armour@westernsydney.edu.au

Justin Sinclair: j.sinclair@westernsydney.edu.au

K. Jane Chalmers: j.chalmers@westernsydney.edu.au

Caroline A. Smith: caroline.smith@westernsydney.edu.au

Journal

Journal ID (nlm-ta): BMC Complement Altern Med

Journal ID (iso-abbrev): BMC Complement Altern Med

Title: BMC Complementary and Alternative Medicine

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-6882

Publication date (Electronic): 15 January 2019

Publication date PMC-release: 15 January 2019

Publication date Collection: 2019

Volume: 19

Electronic Location Identifier: 17

Affiliations

[1 ]ISNI 0000 0000 9939 5719, GRID grid.1029.a, NICM Health Research Institute, , Western Sydney University, ; Building 5, Campbelltown Campus, Locked Bag 1797, Penrith, Sydney, NSW 2751 Australia

[2 ]ISNI 0000 0000 9939 5719, GRID grid.1029.a, School of Science and Health, , Western Sydney University, ; Sydney, Australia

Author information

Mike Armour http://orcid.org/0000-0001-7539-9851

Article

Publisher ID: 2431

DOI: 10.1186/s12906-019-2431-x

PMC ID: 6332532

PubMed ID: 30646891

SO-VID: b8953414-3169-4254-bca9-fcd058bc7ca2

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. 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.