Skip to main content In the Mind Body Research in Health Laboratory (MiRth) at Deakin University, we have been running a longitudinal online survey to understand the ongoing wellbeing and concerns of Australians aged 18-50 years with endometriosis and dysmenorrhea.
We have recently published a number of findings related to this survey, showing that the symptom profile of women with endometriosis is similar to women with dysmenorrhea, although those with endometriosis appear to be at particular risk of gastrointestinal symptoms and widespread pain.
In our systematic review of psychological and mind-body interventions for endometriosis, including yoga, mindfulness and psychological therapy, we found that many of these interventions show promise in alleviating pain, anxiety, depression, stress and fatigue
We have also found concerning levels of helplessness in women with endometriosis and dysmenorrhea, and that feeling helpless about pain is related to higher menstrual pain severity. Such feelings of helplessness may not be surprising, given how long it takes for people with endometriosis and dysmenorrhea to receive adequate care. The results suggest that psychological interventions that reduce feelings of helplessness and empower people with endometriosis and menstrual pain may be helpful in managing pain.
As demonstrated in our mixed methods results, which combined quantitative and qualitative data from the survey, many women with endometriosis feel let down by inadequate treatment for pain. Our results show that 97% of women used medication for pain relief, with moderate satisfaction, and 89% used complementary/ self-care strategies with less satisfaction. Moreover, 36% of women were dissatisfied with treatment, 34% were somewhat satisfied, and 24% were satisfied. We identified qualitative themes relating to: 1) barriers to treatment, which included lack of access, stigma, and disappointment with medical professionals who were perceived as uncaring, unhelpful and in some cases, psychologically damaging; 2) the need for holistic, interdisciplinary care; and 3) the importance of consumer knowledge, advocacy and resilience in endometriosis management.
We were also able to survey women at the height of Victoria’s second lockdown in 2021 about how COVID-19 impacted their endometriosis-related healthcare, symptoms and functioning. We found that 60% of women reported impact of the pandemic upon healthcare, including difficulty of cancelled and delayed treatment and the advantages and disadvantages of telehealth; 23% reported negative impact on symptoms, often stress leading to more pain; 76% reported impact on daily functioning, including compromised work, social life and healthy living. A 'hidden benefits' theme revealed ways the pandemic had improved some women's lives, including the opportunity to work from home, and engage in healthy lifestyle choices. Our findings indicate the need to provide supportive care during pandemic restrictions that leverage self-management strategies.
In our systematic review of psychological and mind-body interventions for endometriosis, including yoga, mindfulness and psychological therapy, we found that many of these interventions show promise in alleviating pain, anxiety, depression, stress and fatigue but further large trials are needed. To address this need, we are currently examining whether yoga or cognitive behaviour therapy improves the wellbeing of people with endometriosis – the HeAling Pelvic Pain Intervention (HaPPI) study. We are recruiting adults over the age of 18 years who have a clinical diagnosis of endometriosis and have experienced pain for at least 6 months. We are currently running 100% online and location (within Australia) is no barrier to participation. If you would like to participate find out more here.