Endometriosis and the workplace: Lessons from Australia’s response to COVID‐19

Armour, Mike; Ciccia, Donna; Stoikos, C.; Wardle, Jon

doi:10.1111/ajo.13458

Cited by 19 publications

(21 citation statements)

References 10 publications

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“…Getting rid of my reproductive organs has been hands down the best most liberating decision of my life." (Confirmed,(25)(26)(27)(28)(29)(30)Nulliparous) . /fgwh.…”

Section: Hysterectomymentioning

confidence: 84%

“…Endometriosis patients have more lost workdays than controls ( 27 ), and frequently use their sick leave for their chronic pain ( 28 ). In 2022 studies conducted in Australia and New Zealand, one in seven ( 29 ) and one in eight ( 24 ) endometriosis patients respectively, had lost their job as a result of their endometriosis condition. It was evident that for many patients within this study's cohort, the workplace was a difficult environment for them to experience endometriosis complications and symptoms.…”

Section: Resultsmentioning

confidence: 99%

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The experiences of endometriosis patients with diagnosis and treatment in New Zealand

Ellis

Munro

Wood

2022

Front. Glob. Womens Health

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Endometriosis is a chronically painful, invasive, inflammatory disease, with limited treatment options and long delays to diagnosis, which impacts 10% of females in New Zealand.IntroductionAs part of a larger group discussion study, this paper covers three themes associated with endometriosis patient experiences: intensity of pain, diagnostic tool shortcomings and perspectives of treatment options.Materials and methodsThe goal of this research was the inclusion of patient voices to guide research priorities. In early 2022, 50 New Zealand endometriosis patients participated in anonymous, asynchronous, text-based group discussions on the VisionsLive platform. The patients ranged in age from 18–48. The patients answered 50 questions, 23 text-based and 27 quantitative, and then took part in online group discussions.Results and discussionThe average age of symptom onset was 15.3 years, while the average delay from symptom onset to a working or surgically confirmed diagnosis was 7.91 years. The top five reported symptoms within the cohort were pain-based, and the participants discussed the many impacts of this pain on their work and education. The four main diagnostic tools employed on this cohort were abdominal ultrasound (72%), transvaginal ultrasound (68%), laparoscopy (82%) and sharing their symptom history with a medical practitioner (88%). The most common emotions patients experienced following receiving a diagnosis of endometriosis were relief (86%), feeling overwhelmed (54%), and anger (32%). The main treatments offered to this cohort were pain relief (96%), laparoscopic surgery (84%) and the combined oral contraceptive pill (80%). Of these three treatments, only laparoscopic surgery was viewed positively by the majority of users, with 67% considering laparoscopy an effective treatment, compared to 46% of users for pain relief, and 25% of users for the combined oral contraceptive pill.ConclusionsGathering the voice of patients revealed that long delays to diagnosis and dismissal by medical practitioners frequently manifests as a reaction of relief by patients once diagnosed. Results also showed treatment options such as pain relief and hormonal medications were often considered ineffective, but were routinely offered as the first, or only, options for patients. It is therefore important that both quicker routes to diagnosis and more effective treatment options be developed.

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“…Getting rid of my reproductive organs has been hands down the best most liberating decision of my life." (Confirmed,(25)(26)(27)(28)(29)(30)Nulliparous) . /fgwh.…”

Section: Hysterectomymentioning

confidence: 84%

Section: Resultsmentioning

confidence: 99%

The experiences of endometriosis patients with diagnosis and treatment in New Zealand

Ellis

Munro

Wood

2022

Front. Glob. Womens Health

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“…In Australia, where the annual economic burden of endometriosis is estimated to be $6.5 ( 58 ) to $7.4 billion ( 60 ), endometriosis patients used on average 60% of their sick leave to treat their chronic pain ( 60 ). In a 2022 study, 65% of an Australian cohort of endometriosis patients used unpaid leave to manage their endometriosis symptoms, 64% felt judged in the workplace for their symptoms, and one in seven reported being fired as a result of their condition ( 61 ).…”

Section: Economic Burden Of Endometriosismentioning

confidence: 99%

Endometriosis Is Undervalued: A Call to Action

Ellis

Munro

Clarke

2022

Front. Glob. Womens Health

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Endometriosis is an inflammatory chronic pain condition caused by uterine tissue growing outside of the uterus that afflicts at least 11% of women (and people assigned female at birth) worldwide. This condition results in a substantial burden to these women, and society at large. Although endometriosis was first identified over 160 years ago, substantial knowledge gaps remain, including confirmation of the disease's etiology. Research funding for endometriosis is limited, with funding from bodies like the National Institutes of Health (NIH) constituting only 0.038% of the 2022 health budget—for a condition that affects 6.5 million women in the US alone and over 190 million worldwide. A major issue is that diagnosis of endometriosis is frequently delayed because surgery is required to histologically confirm the diagnosis. This delay increases symptom intensity, the risk of central and peripheral sensitization and the costs of the disease for the patient and their nation. Current conservative treatments of presumed endometriosis are pain management and birth control. Both of these methods are flawed and can be entirely ineffective for the reduction of patient suffering or improving ability to work, and neither addresses the severe infertility issues or higher risk of certain cancers. Endometriosis research deserves the funding and attention that befits a disease with its substantial prevalence, effects, and economic costs. This funding could improve patient outcomes by introducing less invasive and more timely methods for diagnosis and treatment, including options such as novel biomarkers, nanomedicine, and microbiome alterations.

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“…Since this surgery I feel I am capable of working, but the pain was a large contributor to me not having a job before surgery." Workplaces have a substantial role in ameliorating this burden (Armour, Ciccia, Stoikos, & Wardle, 2021), with participants commenting that supportive workplaces with flexible work arrangements, paid sick leave and female staff that understand menstrual health helped to offset financial concerns. Such support is an imperative when considering the physical and mental health problems arising from such gendered poverty and economic distress: "It's very isolating.…”

Section: The Costs Of Endometriosismentioning

confidence: 99%

Lessons from implementing the Australian National Action Plan for Endometriosis

Armour

Leonardi

Niekerk

et al. 2022

Reproduction and Fertility

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Endometriosis is a common yet under-recognised chronic disease with 1 in 9 (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, co-ordinated 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 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; firstly, 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 magnetic resonance imaging 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 cost.

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Endometriosis and the workplace: Lessons from Australia’s response to COVID‐19

Cited by 19 publications

References 10 publications

The experiences of endometriosis patients with diagnosis and treatment in New Zealand

The experiences of endometriosis patients with diagnosis and treatment in New Zealand

Endometriosis Is Undervalued: A Call to Action

Lessons from implementing the Australian National Action Plan for Endometriosis

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