Menstrual pain in Australian adolescent girls and its impact on regular activities: a population-based cohort analysis based on Longitudinal Study of Australian Children survey data.

OBJECTIVES: To determine the proportion of Australian adolescent girls who experience menstrual pain (dysmenorrhea); to assess associations of dysmenorrhea and period pain severity with adolescents missing regular activities because of their periods. STUDY DESIGN: Prospective, population-based cohort study; analysis of Longitudinal Study of Australian Children (LSAC) survey data. SETTING, PARTICIPANTS: Female adolescents in the nationally representative cross-sequential sample of Australian children recruited in 2004 for the Kinder cohort (aged 4-5 years at enrolment). Survey data from waves 6 (mean age 14 years), wave 7 (16 years) and wave 8 (18 years) were analysed. MAIN OUTCOME MEASURES: Severity of period pain during the preceding three months (very, quite, a little, or not at all painful); number of activity types missed because of periods; relationship between missing activities and period pain severity. RESULTS: Of the 1835 participating female members of the LSAC Kinder cohort at waves 6 to 8, 1600 (87%) responded to questions about menstruation during at least one of waves 6 to 8 of data collection. At wave 6 (14 years), 227 of 644 respondents (35%) reported dysmenorrhea, 675 of 1341 (50%) at wave 6 (16 years), and 518 of 1115 (46%) at wave 8 (18 years). Of the 366 participants who reported period pain severity at all three waves, 137 reported no dysmenorrhea at all three waves (37%), 66 reported dysmenorrhea at all three waves (18%), 89 reported increasing period pain over time (24%), and 38 reported declining pain (10%). At wave 6, 223 of 647 participants reported missing at least one activity because of their periods (34%), 454 of 1341 at wave 7 (34%), and 344 of 1111 at wave 8 (31%). Of the participants who experienced very painful periods, 72% (wave 6), 63% (wave 7), and 65% (wave 8) missed at least one activity type because of their periods, as did 45% (wave 6), 36% (wave 7), and 40% (wave 8) of those who experienced quite painful periods. CONCLUSIONS: A large proportion of adolescent girls in Australia experience period pain that affects their engagement in regular activities, including school attendance. Recognising adolescent period pain is important not only for enhancing their immediate quality of life with appropriate support and interventions, but also as part of early screening for chronic health conditions such as endometriosis.

"It's Just Another Unfortunate Part of Being Female": A Qualitative Study on Dysmenorrhea Severity and Quality of Life.

The present study sought to understand similarities and differences in the experiences of women with mild, moderate and severe menstrual pain. Women aged 18-50 years were recruited from the community between May and July 2019 (n = 624). Participants were asked to rate their menstrual pain severity using a Numerical Rating Scale categorised into mild (scores 1-4), moderate (scores 5-7), and severe dysmenorrhea (scores 8-10) and respond to three open-ended questions about the impact of menstrual pain. Inductive template thematic analysis was used to understand patterns of meaning and compare and contrast the experience of menstrual pain across severity. Three themes were derived, including 'Dysmenorrhea is more than menstrual pain;' 'It puts a hold on lives;' and 'Lack of health-related information.' Women across all pain severities reported disabling symptoms, disrupted physical activity and the need for education and treatment. Those experiencing mild pain reported relatively brief symptoms and minor impacts, whilst those with moderate, and especially severe pain reported debilitating symptoms and extensive impacts. Supportive care including education is needed for all menstruating people.

The temporal effect of emotional distress on psychological and physical functioning in endometriosis: A 12-month prospective study.

Psychological factors of emotional distress and cognition have an important role in the understanding and management of endometriosis; however, their temporal relationship with key pain variables is not fully understood. This exploratory study sought to establish the temporal relationship between psychological and pain-related factors in a 12-month prospective study of 208 Australian women with endometriosis. Participants, aged 18-50 years and living in Australia, were recruited via social media and completed baseline (May 2019) and 12-month follow-up (June 2020) surveys. Participants who reported a diagnosis of endometriosis and menses in the past 12 months were included in the study. Structural equation modelling was used to determine the temporal effects of psychological and pain-related factors in endometriosis. In a covariate-adjusted model, baseline emotional distress was the only variable to predict pain catastrophizing (ß = .24, p < .01), functional pain disability (ß = .16, p < .05) and concomitant emotional distress (ß = .55, p < .001) 12 months later, adjusting for age and chronic illness. Women who exhibit symptoms of distress may be at risk of poorer psychological and physical function at 12 months. Further research is required to understand the impact of psychological management early in the disease course.

Lessons from implementing the Australian National Action Plan for Endometriosis.

Abstract: Endometriosis is a common yet under-recognised chronic disease with one in nine (more than 830,000) women and those assigned female at birth diagnosed with endometriosis by the age of 44 years in Australia. In 2018, Australia was the first country to develop a roadmap and blueprint to tackle endometriosis in a nationwide, coordinated manner. This blueprint is outlined in the National Action Plan for Endometriosis (NAPE), created from a partnership between government, endometriosis experts and advocacy groups. The NAPE aims to improve patient outcomes in the areas of awareness and education, clinical management and care and research. As researchers and clinicians are working to improve the lives of those with endometriosis, we discuss our experiences since the launch of the plan to highlight areas of consideration by other countries when developing research priorities and clinical plans. Historically, major barriers for those with endometriosis have been twofold; first, obtaining a diagnosis and secondly, effective symptom management post-diagnosis. In recent years, there have been calls to move away from the historically accepted 'gold-standard' surgical diagnosis and single-provider specialist care. As there are currently no reliable biomarkers for endometriosis diagnosis, specialist endometriosis scans and MRI incorporating artificial intelligence offer a novel method of visualisation and promising affordable non-invasive diagnostic tool incorporating well-established technologies. The recognised challenges of ongoing pain and symptom management, a holistic interdisciplinary care approach and access to a chronic disease management plan, could lead to improved patient outcomes while reducing healthcare costs. Lay summary: Endometriosis is a chronic disease where tissue like the lining of the uterus is found in other locations around the body. For the 830,000 people living with endometriosis in Australia, this often results in an immense burden on all aspects of daily life. In 2018, Australia was the first country to introduce a roadmap and blueprint to tackle endometriosis in a nationwide coordinated manner with the National Action Plan for Endometriosis. This plan was created as a partnership between government, endometriosis experts and advocacy groups. There are several other countries who are now considering similar plans to address the burden of endometriosis. As researchers and clinicians are working to improve the lives of those with endometriosis, we share our experiences and discuss areas that should be considered when developing these national plans, including diagnostic pathways without the need for surgery, and building new centres of expertise in Endometriosis and Pelvic Pain.

Treatment use and satisfaction in Australian women with endometriosis: a mixed-methods study.

AIMS: To document the frequency of conventional and complementary treatments used by Australian women with endometriosis and the perceived efficacy of these treatments, and to qualitatively explore women's treatment satisfaction. BACKGROUND: We do not adequately understand whether Australian women with endometriosis are satisfied with their medical care. METHODS: Using a mixed-methods design, 532 women with self-reported endometriosis were recruited from the community. Participants were asked about their medication, complementary and self-care treatment use, as well as perceived efficacy on a 0 (not effective) to 10 (extremely effective) numeric rating scale, and open-ended qualitative survey items about treatment satisfaction. RESULTS: Ninety-seven percent of women used medication for pain relief (mean perceived efficacy = 5.05) and 89% used complementary/self-care strategies (mean perceived efficacy = 3.70), with medication rated as significantly more effective (P < 0.001). Content analysis of the qualitative data identified that 36% of women were dissatisfied with treatment, 34% were somewhat satisfied and 24% were satisfied. We identified qualitative themes relating to: (i) 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; (ii) the need for holistic, interdisciplinary care; and (iii) patient knowledge, advocacy and resilience in endometriosis management. CONCLUSIONS: Our findings reveal important limitations in the current Australian healthcare model, including the need for patient-centred interdisciplinary care that treats the biopsychosocial needs of people with endometriosis, and widespread pain education, spanning medical training to community awareness.

Pain catastrophizing, but not mental health or social support, is associated with menstrual pain severity in women with dysmenorrhea: A cross-sectional survey.

The aim of this study was to understand the relationship between psychosocial factors, including mental health, pain cognitions and social support associated with menstrual pain severity in women with dysmenorrhea of no identified medical cause (primary dysmenorrhea; PD) and dysmenorrhea related to endometriosis. Participants included 1192 women aged 18-50 years with menstrual pain, recruited to an online cross-sectional survey in 2019. Questionnaires assessed self-reported menstrual pain severity, depression, anxiety, stress, pain catastrophizing, and social support. Women with endometriosis had significantly higher menstrual pain severity (p < 0.001) and pain catastrophizing (p < 0.001) than women with PD. Of the psychosocial factors, only pain catastrophizing (specifically, the helplessness sub-scale) predicted menstrual pain severity in each group. Overall, 36% of women with PD and 58% with endometriosis had clinically relevant levels of pain catastrophizing. Findings suggest a common psychological mechanism in women with menstrual pain, regardless of etiology. Interventions to reduce pain helplessness may be beneficial in supporting women with dysmenorrhea.

Yoga, cognitive-behavioural therapy versus education to improve quality of life and reduce healthcare costs in people with endometriosis: a randomised controlled trial.

INTRODUCTION: Endometriosis is a debilitating chronic inflammatory condition highly burdensome to the healthcare system. The present trial will establish the efficacy of (1) yoga and (2) cognitive-behavioural therapy (CBT), above (3) education, on quality of life, biopsychosocial outcomes and cost-effectiveness. METHODS AND ANALYSIS: This study is a parallel randomised controlled trial. Participants will be randomly allocated to yoga, CBT or education. Participants will be English-speaking adults, have a diagnosis of endometriosis by a qualified physician, with pain for at least 6 months, and access to internet. Participants will attend 8 weekly group CBT sessions of 120 min; or 8 weekly group yoga sessions of 60 min; or receive weekly educational handouts on endometriosis. The primary outcome measure is quality of life. The analysis will include mixed-effects analysis of variance and linear models, cost-utility analysis from a societal and health system perspective and qualitative thematic analysis. ETHICS AND DISSEMINATION: Enrolment in the study is voluntary and participants can withdraw at any time. Participants will be given the option to discuss the study with their next of kin/treating physician. Findings will be disseminated via publications, conferences and briefs to professional organisations. The University's media team will also be used to further disseminate via lay person articles and media releases. TRIAL REGISTRATION NUMBER: ACTRN12620000756921p; Pre-results.

"I'm in iso all the time anyway": A mixed methods study on the impact of COVID-19 on women with endometriosis.

OBJECTIVE: The COVID-19 pandemic has resulted in restrictions and social isolation measures, which carry mental health risks. Cancellation of surgery and appointments, medication shortages and fear of the virus itself may have further challenged wellbeing. We aimed to understand how COVID-19 has affected people with endometriosis. METHODS: Using a mixed methods design, we examined; 1) the impact of COVID-19 on endometriosis related healthcare, symptoms and functioning; and 2) the relationship between a measure of fear of COVID-19 and qualitative impact in 162 women with endometriosis. RESULTS: We found that 60% of women reported impact of the pandemic upon healthcare, with sub-themes documenting the difficulty of cancelled and delayed treatment, specific COVID-19 barriers, and the advantages and disadvantages of telehealth. Only 23% reported negative impact on symptoms, specifically stress; 76% reported impact on daily functioning, with sub-themes related to compromised work, social life and healthy living. A 'hidden benefits' theme revealed ways that COVID-19 had improved some women's lives, including working from home, and the opportunity for healthy lifestyle choices. Logistic regressions revealed that fear of COVID-19 significantly predicted impact themes (healthcare odds ratio = 0.93, 95% confidence interval: 0.87-0.98; symptoms odds ratio = 0.88, 95% confidence interval: 0.82-0.95; functioning odds ratio = 0.92, 95% confidence interval: 0.85-0.99). CONCLUSION: Our findings indicate the need to provide patients with supportive care during pandemic restrictions that leverage self-management strategies.

Phenotypes of Women with and Without Endometriosis and Relationship with Functional Pain Disability.

OBJECTIVE: Primary dysmenorrhea and secondary dysmenorrhea due to endometriosis share overlapping symptoms and likely demonstrate aspects of central sensitization. The present study aimed to identify distinct phenotypes of women who have dysmenorrhea with and without endometriosis to shed light on the unique mechanisms contributing to the pathogenesis of each condition. METHODS: An online survey was used to investigate the relationship between ratings of menstrual pain severity, menstrual symptoms (abdominal cramps, abdominal discomfort, low back pain, headache, body aches, bloating, nausea, diarrhea, increased bowel movements), widespread pain, and functional pain disability in a community sample of 1,354 women (aged 18-50) with menstrual pain in Australia. RESULTS: Compared with women without endometriosis, those with endometriosis had statistically significant higher menstrual pain severity (P<0.01), symptom severity and fatigue (all symptoms P<0.001, although only cramps and bloating were clinically significant), widespread pain sites (P<0.001), and functional pain disability (P<0.001, although this difference was not clinically significant). When examining symptoms by pain severity, women with severe menstrual pain were more likely to experience symptoms than women with less severe pain, regardless of the presence of endometriosis. Similar predictors of functional pain disability emerged for women with and without endometriosis, such as body aches, nausea, fatigue, and widespread pain, respectively, suggesting the presence of central sensitization in both groups. Logistic regression revealed that after accounting for menstrual pain severity (odds ratio [OR], 1.61) and duration (OR, 1.04), symptoms of bloating (OR, 1.12), nausea (OR, 1.07), and widespread pain sites (OR, 1.06) significantly predicted the presence of endometriosis. CONCLUSIONS: The findings suggest that phenotypes specific to endometriosis can be identified.

Multicentre retrospective study to assess diagnostic accuracy of ultrasound for superficial endometriosis-Are we any closer?

BACKGROUND: To establish whether the ultrasound findings of minimal endometriosis are confirmed at laparoscopy and that a correlation can be established as to the anatomical sites in this mild form of the disease. AIMS: Patients with pain and suspicion of endometriosis had an ultrasound scan by a sonologist with expertise in endometriosis as part of their pre-operative workup. MEASUREMENTS AND MAIN RESULTS: The clinical histories of 53 patients who had laparoscopy to investigate pelvic pain were reviewed. Ultrasounds were performed between 2012 and 2015 by a single sonologist with expertise in endometriosis assessments. The ultrasound findings were divided into subgroups as follows - presence of uterosacral ligament thickness, thickened pericolic fat, ovarian mobility and focal tenderness. These were compared with operative findings of those patients with superficial endometriosis. Evidence Level 3 - observational studies with controls and health services research that includes adjustment for likely confounding factors. RESULTS: Seventy-nine percent (42/53) of the patients had laparoscopic findings consistent with their ultrasound findings (95% CI 68-90%, P < 0.0001). Of the subgroups that we reviewed, uterosacral thickening (P < 0.05) and thickened pericolic fat (P < 0.05) were the most associated with superficial endometriosis at the time of laparoscopy. CONCLUSION: Markers on ultrasound that reliably demonstrated inflammation (thickened uterosacral ligaments and thickened pericolic fat) were shown to be significantly associated with the disease.