Managing endometriosis: a cross-sectional survey of women in Australia

O’Hara, Rebecca; Rowe, Heather; Fisher, Jane

doi:10.1080/0167482x.2020.1825374

Cited by 58 publications

(59 citation statements)

References 21 publications

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“…There is no evidence of the existence of variation in diagnostic delays, and the effect that this delay may have on the epidemiological burden of endometriosis is not clear [42,44], as no meta-analysis or systematic reviews investigating this question were conducted. However, single studies originating from Europe, Australia, China, and the US report diagnostic delays between 3.5 and 13 years [45][46][47][48][49], with the underrepresentation of years of diagnostic delays from Asian and African countries.…”

Section: Discussionmentioning

confidence: 99%

Systematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis

et al. 2020

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There is still much controversy regarding the epidemiology of endometriosis. The objective of this work is to conduct a systematic review, and if possible, proceed with a meta-analysis of studies that have analyzed the incidence and prevalence of this condition among women in the general population. The inclusion criteria were papers published after 1997 that had reported data of the incidence or prevalence of endometriosis. The PubMed search engine was used to identify papers meeting the inclusion criteria from 1997 to 2019, with an additional manual search for the identification of potentially eligible studies. The search was limited to papers published in English. The risk of bias was assessed according to the Joanna Briggs Institute Critical Appraisal Checklist. As a result, 27 papers, which included a total of 28,660,652 women, were classified according to the type of design and sources of information in five subgroups. Pooled estimates of prevalence for studies with self-reported data were 0.05 (95% CI: 0.03; 0.06), 0.01 for population-based integrated information systems (95% CI: 0.01; 0.02), and 0.04 (95% CI 0.04; 0.05) in studies using other designs. The pooled incidence rate of endometriosis was: 1.36 per 1000 person-years (PY) (95% CI: 1.09; 1.63) for studies based on hospital discharges, 3.53 per 1000 PY (95% CI: 2.06; 4.99) for cohort studies, and 1.89 per 1000 PY (95% CI: 1.42; 2.37) for population-based integrated information systems. Meta-analysis indicated high heterogeneity based on I-squared statistics. This significant variability may not only be due to methodological issues and the specific limitations of the different designs and data analyzed, including case definitions and subject selection strategies, but also to the inherent heterogeneity of endometriosis. Epidemiological studies with appropriate study designs remain necessary to provide a valid estimation of the population burden of endometriosis.

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Section: Discussionmentioning

confidence: 99%

Systematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis

et al. 2020

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“…(19,21) Between 50-75% of women with CPP report discontinuing pharmaceutical pain management due to adverse side-effects and often explore other forms of treatment including healthcare professions from outside of the dominant biomedicine system . (6,22,23) Traditional, complementary and integrative medicine (TCIM) is used by 51% of women with CPP. (24,25) Traditional Chinese Medicine (TCM) including acupuncture (25,26) and Chinese herbal medicine(26) are popular TCIM treatments for which there is preliminary, but promising evidence of effectiveness for CPP pain reduction.…”

Section: Introductionmentioning

confidence: 99%

A Cross-Sectional Study of Traditional Chinese Medicine Practitioner’s Knowledge, Treatment Strategies and Integration of Practice of Chronic Pelvic Pain in Women

Arentz

Smith

Redmond

et al. 2021

Preprint

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Background Chronic pelvic pain (CPP) in women is persistent, intermittent cyclical and non-cyclical lower abdominal pain, lasting for more than 6 months. Traditional Chinese Medicine (TCM) is a popular treatment option for women’s health conditions, but little is known about how treatment for CPP is delivered by TCM practitioners. The aim of this survey was to explore practitioners understanding and treatment of women with CPP, and how they integrate their management and care into the health care system. Method An online cross-sectional survey of registered TCM practitioners in Australia and New Zealand. Survey domains included treatment characteristics (e.g. frequency), evaluation of treatment efficacy, referral networks, and sources of information that informed clinical decision making. Results One hundred and twenty-two registered TCM practitioners responded to this survey, 91.7% reported regular treatment of women with CPP. Treatment decisions were most-often guided by a combination of biomedical and TCM diagnosis (77.6%), and once per week was the most common treatment frequency (66.7%) for acupuncture. Meditation (63.7%) and dietary changes (57.8%) were other commonly used approaches to management. The effectiveness of treatment was assessed using multiple approaches, most commonly pain scales, (such as the numeric rating scale) and any change in use of analgesic medications. Limitations to TCM treatment were reported by over three quarters (83.7%) of practitioners, most commonly due to cost (56.5%) and inconvenience (40.2%) rather than safety or lack of efficacy. Integration within the wider healthcare system was common with over two thirds (67.9%) receiving referrals from health care providers. Conclusion TCM practitioners seeing women with various CPP symptoms, commonly incorporate both traditional and modern diagnostic methods to inform their treatment plan, monitor treatment progress using commonly accepted approaches and measures and often as a part of multidisciplinary healthcare for women with CPP.

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“…The latest Australian endometriosis survey identified the average diagnosis delay is 6.4 years. 26 The gap between when symptoms present and the point of diagnosis is a consistent statistic across endometriosis research and was highlighted in my research. This research confirms a delay in diagnosis with 39 women taking longer than 2 years to be diagnosed.…”

Section: Discussionmentioning

confidence: 75%

“…The struggle and suffering narrative is not uncommon in endometriosis research with Grogan et al 6 and Cox et al 8 exposing themes of struggle, loss, suffering in silence and a medical merry-go-round. Their findings along with O’Hara et al 26 demonstrate women with endometriosis live in a constant state of battle struggling with pain in continual management of the disease. Problems gaining an accurate diagnosis is consistent across qualitative studies on women’s experiences with endometriosis.…”

Section: Introductionmentioning

confidence: 83%

That one doctor. . . Qualitative thematic analysis of 49 women’s written accounts of their endometriosis diagnosis

Fernley¹

2021

Journal of Endometriosis and Pelvic Pain Disorders

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Introduction: One in nine women experience endometriosis, a common gynaecological disease, yet time to diagnosis averages 7 years. People are sharing their endometriosis experiences online. This research’s aim was to expose and synthesise the collective themes of diagnostic experience. Method: A qualitative thematic analysis of publicly accessible online autobiographical accounts of women and their endometriosis diagnosis. Themes were coded within NVIVO and thematic maps and tables created. Eighty-nine original accounts were identified, 26 were excluded. Saturation point was 49. Results: Women communicated long, painful and emotional journeys to diagnosis. Forty women experienced endometriosis symptoms before the age of 20, 33 before 15 years. Despite repeated GP presentation, 36 women had never heard of endometriosis before diagnosis. Women highlighted the positive impact of ‘that one doctor’ who said the word ‘endometriosis’ who listened, believed, investigated and provided prompt referral to specialists. Diagnosis gave relief and answers to the long journey, provided women a sense of community, hope and personal visibility after feeling alone. While this common disease is undiagnosed women suffer. Conclusion: ‘That one doctor’ can transform a patient’s experience and create a positive diagnosis pathway towards endometriosis. The doctor patient alliance is vital for prompt diagnosis. Symptom dismissal with long diagnosis delays are having negative, physical and psychological consequences for women. Early detection, GP education and community awareness campaigns are imperative to reduce further delayed diagnosis and long-term negative impacts of undiagnosed endometriosis.

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Managing endometriosis: a cross-sectional survey of women in Australia

Cited by 58 publications

References 21 publications

Systematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis

Systematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis

A Cross-Sectional Study of Traditional Chinese Medicine Practitioner’s Knowledge, Treatment Strategies and Integration of Practice of Chronic Pelvic Pain in Women

That one doctor. . . Qualitative thematic analysis of 49 women’s written accounts of their endometriosis diagnosis

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