The use of self-management strategies, especially non-pharmacological practices, in chronic illnesses is common [19]. Women with endometriosis often feel frustrated at the lack of effective medical treatments and therefore turn to self-management [20] as one of the coping strategies to manage their condition [21]. Women with endometriosis often feel disempowered [20], and self-management strategies may help them feel a sense of agency and empowerment [22]. Our survey findings support this: both self-management techniques and lifestyle interventions or modifications are a common and important part of Australian women’s self-management strategy when dealing with the symptoms of endometriosis.

Usage of self-management was high in women with endometriosis, with overall rates of self-management being similar to those observed in women with primary dysmenorrhea [13]. The use of self-management techniques that includes components that may be considered to be ‘complementary’ or ‘alternative’ such as yoga or acupuncture can form an important part of self-management for women, and are often [23], but not always [20], seen as an adjunct rather than a replacement for, mainstream medical care.

The mean age of women in our study (31 years old) is similar to other studies on women with endometriosis in Europe (33 years) [7], South Africa (33 years) [21] and previous research undertaken in Australia (31 years) [24]. The impact of endometriosis on the lives of women in this study is comparable to worldwide impact reports [18]. The greatest impacts were in energy levels, gastrointestinal function, and mood, which may directly relate to the choices of self-management strategies that women make. For example, women with endometriosis may use yoga, cannabis or hemp/CBD oil to improve their mood and make dietary changes to self-manage gastrointestinal problems.

Diet, while not as commonly used as rest and heat, was used by almost half the women in the survey. Diet had high self-reported improvement scores and examination of the types of diets used showed there was significant diversity; with paleo, vegan, gluten free, FODMAP and Mediterranean diets being the most common sub-types of diet. Given the significant proportion of women with endometriosis who also have gastrointestinal [25] and IBS-like symptoms [14], dietary changes, such as a FODMAP diet, may reduce pelvic pain symptoms that could be exacerbated by IBS or gastrointestinal symptoms. This is likely to occur via a reduction in intestinal distention and subsequent reduction in visceral nerve activation [14]. In our survey, there was no specific sub-type of diet reported that was related to a significantly greater self-rated improvement. This appears to be in line with current reviews which find there are no consistent dietary predictors for endometriosis [26].

Heat was the only modality that was both commonly used and rated as effective by women. There are no studies looking specifically at heat for endometriosis related pain but previous research provides evidence that heat reduces primary dysmenorrhea [27]. Heat may work via both increasing blood flow in the abdominal area [28] and by the ‘gate control’ theory of pain inhibition, where topical heat activates thermoreceptors, inhibiting concurrent nociceptive signals reaching the brain [27]. However, despite its effectiveness, a significant number of women reported adverse events with heat, most commonly burns. Therefore, consideration should be given to the use of heat patches that deliver controlled heat at a safe temperature.

The first reported use of cannabis being used as a medicine for female reproductive complaints was in China ca. 2700 BCE. More recently, phytochemical constituents within the plant such as the cannabinoids ∆⁹-Tetrahydrocannabinol (THC) [29, 30], ∆⁹-Tetrahydrocannabivarin (THCV) [31] and Cannabidiol (CBD) [32] have demonstrated noted pharmacological activity, specifically analgesic and anti-inflammatory effects. Cannabis, while only used by 13% of women in this survey, had the highest pain relief score and greatest reduction in medication usage of any strategy assessed. This latter finding is mirrored in other international cannabis studies showing a reduction in pharmaceutical medication usage for pain management, with recent evidence demonstrating that cannabis may assist in de-prescribing from pharmaceutical medication, particularly opiates and benzodiazepines, in what is dubbed the substitution effect [33]. Whilst further studies specific to the endometriosis population are required, considering the known abuse, risk of addiction and overdose mortality rates with opiate medications [34], coupled with recent evidence suggesting medicinal cannabis can reduce prescription opiate overdose mortality rates significantly [35], quality assured medicinal cannabis may play a role as both an adjunct analgesic and harm reduction agent. Australia introduced the Narcotic Drugs Regulation in December 2016 to legalise cannabis for medicinal use, with medical practitioners being able to prescribe cannabis products through various avenues including the Special Access Scheme and Authorised Prescriber pathways. Whilst government pathways do not preclude endometriosis or pelvic pain patients from access in Australia, current numbers of approved patients based on clinical indication is suggestive that survey respondents were utilising illicit cannabis.

Both rest and physical activity have been reported as effective self-management practices in women with primary dysmenorrhea [12, 36]; however, the findings in the current survey did not find these methods effective for women with endometriosis, and even found high levels of adverse events due to physical activity. That rest and physical activity are not effective self-management methods in endometriosis is not altogether unsurprising; rest is considered a passive treatment that is ineffective in many chronic pain conditions [37, 38], as it is thought to promote illness behaviour [39] and fear-avoidance behaviour [40]. Similarly, engaging in vigorous physical activity after a period of rest or reduced levels of activity is ineffective in treating chronic pain conditions [41] and can often make pain symptoms worse – inducing a so called ‘flare up’. In women with endometriosis, vigorous exercise may exacerbate pelvic muscle spasms that are commonly seen in these women [42]. While physical activity is essential for chronic pain recovery [43], it needs to be gradual (graded exposure) to avoid flare ups, to improve physical activity tolerance, and to allow individuals to return to their usual level of daily activity [41].

There are clear strengths to this study. First, women must have had endometriosis diagnosed via laparoscopy within the previous 5 years, providing a specific population. Despite laparoscopic investigation being the gold standard in diagnosing endometriosis, some research studies continue to include women with diagnoses of endometriosis based on symptomology reports alone, leading to potential bias from differential or overlapping conditions. Second, the sample size obtained was large in comparison to other survey methodologies with similar populations. Finally, the online survey methodology allowed participants to have anonymity. Greater anonymity improves the willingness of participants to disclose sensitive information [44], such as drug use, which increases the confidence that the present results truly reflect all self-management measures taken by women with endometriosis.

Importantly, the findings from this study should be taken into consideration with the study limitations. Due to the use of social media as a recruitment tool, calculating a response rate is not possible, therefore any generalisability of these findings must be done with caution. Women recruited via support/advocacy groups often have more severe symptoms than those recruited via other methods [45]; however, our sample had very similar PPIQ scores to a large international sample [18]. A small portion of the population came from remote regions of Australia. Arguably, women in remote regions may use different self-management measures due to the decreased availability of medical resources; however, the small sample size obtained did not allow for any analyses that might detect differences. In addition, the questionnaire offered no free response section in which women could nominate other self-management measures not listed. There is the potential that women with endometriosis use additional or alternative self-management measures, but this information was not able to be captured by this questionnaire. Reporting of reduction in endometriosis related medication did not collect data on what class of medication (e.g. analgesics) were being reduced. To reduce survey length, broad categories were used and therefore comparisons between specific sub-types (e.g. walking vs vigorous exercise) was not possible. Combination of yoga and Pilates into one category may obscure the effect of these two practices, as demonstrated by the free text reporting for adverse events with Pilates. Finally, all measures were self-reported, therefore all indications of effectiveness and adverse events are based on women’s own recall, and this may lead to either over or underestimation of benefits and harms.