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. 2019 Jan 15;19(1):17.
doi: 10.1186/s12906-019-2431-x.

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

Mike Armour  1 , Justin Sinclair  2 , K Jane Chalmers  3 , Caroline A Smith  2
Affiliations

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

Mike Armour et al. BMC Complement Altern Med. .

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'.

Keywords: Cannabis; Endometriosis; Exercise; Heat; Self-care; Self-management.

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Conflict of interest statement

Ethics approval and consent to participate

This survey was approved by the Western Sydney University Human Research Ethics Committee, approval number H12394. Participants were advised in the participant information sheet and survey introduction (prior to starting the survey) that consent was implied by completing the survey.

Consent for publication

Not applicable

Competing interests

MA, JS and CS: As a medical research institute, NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This survey was not specifically supported by donor or sponsor funding to NICM.

In addition, JS sits on the Scientific Advisory Board for BioCeuticals. He is also on the Scientific Advisory Board for United in Compassion in a pro bono capacity.

KJC: None known.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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