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

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.

If the following questions apply to you, please answer. If not, please leave these blank. These questions will not be added to your summed score. In the last six months have you used any non-pharmacological self-care activities or therapies (such as yoga, meditation, special diets, hemp oil etc.) to help you manage your endometriosis symptoms or help reduce the side effects from medication you are taking to help deal with endometriosis (e.g. Endone or other analgesic medication)?
Why don't you use self-care therapies? (select all that apply) Which of the following non-pharmacological/self-care practices have you used in the last six months for the management of your endometriosis symptoms? (select all that apply)   What were these adverse reactions?
Did your use of Meditation or breathing exercises reduce your need to use the normal pharmaceutical therapies you would normally use for your endometriosis symptoms (e.g a reduction in the amount of pain killers you need)?
How much per month, on average, did Meditation or breathing exercises cost you out of your own money? (This could include a one off costs like a beginners mediation class) Pain on urination Yes No Yes -significant reduction (50% or more) Yes -moderate reduction (25-50%) Yes -minimal reduction (<25%) No Other Would you recommend Meditation or breathing exercises to a friend or family member with endometriosis?
Is there anything else you want to tell us about Meditation or breathing exercises?
How often did you use rest as a treatment for endometriosis on average? On a scale from 0-10 (0 being totally ineffective and 10 being totally effective), how effective was rest in reducing your endometriosis related pelvic pain?
Which symptoms of endometriosis, or side effects of medications that you are taking to treat endometriosis, did rest reduce and how effective was it? taking to treat endometriosis, did stretching exercises reduce and how effective was it?
Did you experience any adverse reactions from stretching exercises?
What were these adverse reactions? Did your use of stretching exercises reduce your need to use the normal pharmaceutical therapies you would normally use for your endometriosis symptoms (e.g a reduction in the amount of pain killers you need)?
How much per month, on average, did stretching exercises cost you out of your own money? (This could include a one off costs like a physiotherapy appointment to learn these techniques) Would you recommend stretching exercises to a friend or family member with endometriosis?
Is there anything else you want to tell us about stretching exercises?
How often did you do exercise or physical activity (such as walking, jogging, swimming or going to the gym) on average? On a scale from 0-10 (0 being totally ineffective and 10 being totally effective), how effective was exercise in reducing your endometriosis related pelvic pain?
Which symptoms of endometriosis, or side effects of medications that you are taking to treat endometriosis, did exercise reduce and how effective was it?
Did you experience any adverse reactions from exercise What were these reactions?
Did your use of exercise (such as jogging, swimming or going to the gym) reduce your need to use the normal pharmaceutical therapies you would normally use for your endometriosis symptoms (e.g a reduction in the amount of pain killers you need)?
How much per month, on average, did exercise cost you out of your own money? How often did you use Heat on average? On a scale from 0-10 (0 being totally ineffective and 10 being totally effective), how effective was heat in reducing your endometriosis related pelvic pain?
Which symptoms of endometriosis, or side effects of medications that you are taking to treat endometriosis, did heat and how effective was it? Did you experience any adverse reactions from using heat?
What were these reactions?
Did your use of heat reduce your need to use the normal pharmaceutical therapies you would normally use for your endometriosis symptoms (e.g a reduction in the amount of pain killers you need)?
How much per month, on average, did using heat cost you out of your own money? On a scale from 0-10 (0 being totally ineffective and 10 being totally effective), how effective were cold packs in reducing your endometriosis related pelvic pain?
Which symptoms of endometriosis, or side effects of medications that you are taking to treat endometriosis, did cold packs reduce and how effective was it? taking to treat endometriosis, did acupressure reduce and how effective was it?
Did you experience any adverse reactions from acupressure?
What were these reactions? Did your use of acupressure reduce your need to use the normal pharmaceutical therapies you would normally use for your endometriosis symptoms (e.g a reduction in the amount of pain killers you need)?
How much per month, on average, did acupressure cost you out of your own money? (This could include a one off costs like a beginners mediation class. If this is a dietary therapy then the increase over your normal food budget. If there was no increase put 0) Would you recommend acupressure to a friend or family member with endometriosis?
Is there anything else you want to tell us about acupressure?
How often did you use massages on average? On a scale from 0-10 (0 being totally ineffective and 10 being totally effective), how effective were massages in reducing your endometriosis related pelvic pain?
Which symptoms of endometriosis, or side effects of medications that you are taking to treat endometriosis, did massages reduce and how effective was it?