Endometriosis Is Undervalued: A Call to Action

Ellis, Katherine; Munro, Deborah; Clarke, Jenny

doi:10.3389/fgwh.2022.902371

Cited by 51 publications

(61 citation statements)

References 82 publications

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“…Endometriosis is a condition where the prevalence, effects and costs are substantial ( 26 ). Endometriosis patients have more lost workdays than controls ( 27 ), and frequently use their sick leave for their chronic pain ( 28 ).…”

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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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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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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“…Topics relating to sex education, such as contraception, STIs, puberty and the menstrual cycle, were more likely to have been learnt about in school, while a number of other topics relating more to reproductive health, including miscarriage, fertility and infertility, abortion, endometriosis, PCOS and menopause, were more likely to have been learnt about outside school. It is worrying that so few teenagers learn about two disorders that affect so many women: endometriosis (Ellis et al, 2022) and PCOS (Deswal et al, 2020), 2.7% and 1.8%, respectively. Perhaps even more significantly, only just over 10% of respondents reported having learnt about menopause and miscarriage.…”

Section: Discussionmentioning

confidence: 99%

What have 16- to 18-year-olds in England learnt about reproductive health? A survey of school students

Maslowski,

Biswakarma,

Reiss

et al. 2024

Health Education Journal

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Objective: Most countries teach limited information about sex and reproductive health education, often concentrating on how not to get pregnant. In this study, we examine what 16- to 18-year-olds in England have learnt and their views about reproductive health education. Design: This is a mixed-methods study. An anonymous, online survey was conducted on Qualtrics software using multiple-choice and open-ended questions. Schools were recruited via the Biotutors forum, and they distributed the survey to students aged 16–18 years. Setting: Data collection took place across England. Methods: A total of 931 students completed the survey, of whom 636 were girls, 250 were boys, 31 as other genders, and 14 did not disclose their gender. Quantitative data were analysed descriptively, and associations were explored using Chi-square tests. Qualitative data were analysed thematically. Results: Over half (65%) of the students rated the sex education they had received as adequate or below. Over half (74%) reported that they do not, or only sometimes, talk to their parents/guardians about these topics. Half (49%) did not know when a woman is most fertile. Students showed a better knowledge of female fertility than male fertility. There was no relationship between how much teaching respondents said they had received and their knowledge of reproductive health topics. From the free text question ‘How do you think we can improve sex and fertility education in schools?’, five themes were identified: inclusivity for all students; comprehensive with relevant topic variety; logistical improvements needed to teaching; the need for honest, transparent and non-judgemental teaching; and sex positivity. Conclusion: Schools should teach a wider range of issues relevant to sexual and reproductive health. Data from this study have assisted the creation of a teachers’ education resource which is being developed in partnership with the International Reproductive Health Education Collaboration (IRHEC).

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“…7 In the United States, the economic burden is estimated to be $78-119 billion annually. 8 The burden of endometriosis is prolonged by diagnostic delay; there is an average of between 4 and 11 years from the onset of the first symptom to receiving a diagnosis. 5 This delay is seen worldwide, even in countries with access to universal health care.…”

Section: Methods Of Study Selectionmentioning

confidence: 99%

Barriers to a Timely Diagnosis of Endometriosis

Davenport

Smith

Green

2023

Obstetrics &Amp; Gynecology

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OBJECTIVE: The diagnosis of endometriosis, a common gynecologic condition, is characterized by delays of up to 11 years. During this time, women may experience persistent symptoms that affect their quality of life, productivity, and relationships, and the disease may progress. It is therefore a priority to understand the factors that contribute to this delay to help improve the diagnostic pathway. Our objective was to describe the diagnosis barriers of endometriosis from the patient and health care professional perspectives using a qualitative evidence synthesis. DATA SOURCES: We searched MEDLINE, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature using combinations of the synonyms of endometriosis, diagnosis, and qualitative research. The search was restricted to English-language articles from database creation until May 2022. METHODS OF STUDY SELECTION: The initial search yielded 899 articles. Studies were included if they explored the experiences or views of affected women or health care professionals on the diagnosis of endometriosis and used qualitative methods for data collection and data analysis. Risk of bias was assessed with the Critical Appraisal Skills Programme checklist. TABULATION, INTEGRATION, AND RESULTS: Thirty-seven articles were considered for full review, with 13 eligible articles identified for inclusion. Thematic synthesis was used to identify four key themes: 1) individual factors (n=6), 2) interpersonal influences (n=6), 3) health system factors (n=13), and 4) factors specific to endometriosis (n=13). These encompassed 12 subthemes that represented barriers to the diagnosis of endometriosis: 1) difficulty establishing pathologic symptoms from normal menstruation and the use of self-care techniques; 2) menstrual stigma and the normalization of menstrual pain; 3) attitudes and lack of training for health care professionals, delayed referrals to specialist services, and poor explanation of oral contraceptive pill use in the diagnostic process; and 4) variability in presenting symptoms, overlap with other conditions, lack of a noninvasive method of diagnosis, and concerns about the value of a diagnosis. CONCLUSION: This review identified barriers to the timely diagnosis of endometriosis from the perspective of affected individuals and health care professionals. It highlights areas for improvement along the diagnostic pathway, which may guide future strategies to reduce delays.

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Endometriosis Is Undervalued: A Call to Action

Cited by 51 publications

References 82 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

What have 16- to 18-year-olds in England learnt about reproductive health? A survey of school students

Barriers to a Timely Diagnosis of Endometriosis

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