NICM Health Research Institute, Western Sydney University, Building 5, Campbelltown Campus, Locked Bag 1797, Penrith, Sydney, NSW, 2751, Australia.
School of Science and Health, Western Sydney University, Sydney, Australia.
BMC Complement Altern Med. 2019 Jan 15;19(1):17. doi: 10.1186/s12906-019-2431-x.
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.
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.
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%).
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'.
子宫内膜异位症对女性的生活有重大负面影响，而目前的医疗方法往往不能为许多女性提供充分的止痛效果或带来无法忍受的副作用。大多数原发性痛经女性使用自我管理策略（包括自我护理技术或生活方式选择）来帮助管理与经期相关的症状，但对于子宫内膜异位症女性的自我管理知之甚少。本调查的目的是确定常见自我管理形式的使用、安全性和自我评估效果的普遍性。
2017 年 10 月至 12 月，通过澳大利亚的子宫内膜异位症支持和宣传团体，在社交媒体上发布了一项横断面在线调查。如果女性年龄在 18-45 岁之间，居住在澳大利亚，且已被确诊为子宫内膜异位症，则有资格回答该调查问题。调查问题涵盖了所使用的自我管理类型、症状改善或药物使用减少以及安全性。
共收到 484 份有效回复。自我管理策略包括自我护理或生活方式选择，在子宫内膜异位症女性中非常普遍（76%）。使用最多的形式是热疗（70%）、休息（68%）和冥想或呼吸练习（47%）。大麻、热疗、麻籽油/大麻素油和饮食改变在减少疼痛方面的自我报告效果最高（分别为 10 分制的 7.6、6.52、6.33 和 6.39）。瑜伽/普拉提、伸展运动和锻炼等身体干预措施的效果较差。不良事件很常见，尤其是使用酒精（53.8%）和锻炼（34.2%）。
子宫内膜异位症女性非常普遍地进行自我管理，这是自我管理的重要组成部分。使用大麻的女性报告的自我评估效果最高。与原发性痛经女性相比，子宫内膜异位症女性有独特的需求，因此任何自我管理策略，特别是那些具有身体性质的策略，都需要考虑到潜在的“发作”风险。
