Endometriosis::How advocacy, awareness and algorithms could shorten the long wait for diagnosis and treatment

Kirk, Ulrik Bak, Holowka, Eileen Mary, Tomlinson, Maria Kathryn, Soendergaard, Mie Kusk
2022 · W7086626988
other OA: gold CC0
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This qualitative research by authors from three countries identifies necessary changes to improve endometriosis awareness and patient care, aiming to reduce the average 7.5-year diagnostic delay caused by medical dismissal and low prioritization.

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This paper examines the broad demographic scope of endometriosis, noting its prevalence among transgender men, non-binary individuals, and post-menopausal people, while challenging the reductionist view of the condition as merely severe menstrual pain. The authors utilize social scientific and qualitative methods, including interviews and surveys, to identify systemic barriers to awareness and diagnose timelines that contribute to delayed treatment for patients. They argue that improving public understanding through advocacy and potentially leveraging algorithms can help shorten the diagnostic wait times currently experienced by diverse patient populations. This paper is centrally about endometriosis — specifically focusing on diagnostic delays, patient advocacy, and the sociocultural perceptions of the disease across various gender identities.

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Abstract

Endometriosis affects an estimated 200 million people worldwide. Despite its prevalence, those living with the disease often wait an average of 7.5 years between start of symptoms and diagnosis. This delay is due to a variety of reasons, including medical dismissal, a low prioritization of the condition and its overall misrepresentation in research funding, policy and media.Although often represented as a women’s reproductive disease, endometriosis also appears in people who have had hysterectomies, transgender men, genderfluid and non-binary people, pre-menstrual and post-menopausal people, and in rare cases, cisgender men.Its symptoms commonly include pain with menstruation, as well as chronic pain, infertility, pain with sexual intercourse, fatigue and more. Despite this full-body impact on one’s quality of life, endometriosis is commonly associated with just having “bad periods.”We are four authors from three countries looking at different aspects of endometriosis diagnosis, awareness and patient advocacy. This article emerges from a joint online presentation of our research looking at potential ways to improve awareness and patient care, and promote faster diagnosis.Our methods include social scientific and qualitative research including interviews, surveys, focus groups, participant observations and collaborations with people living with endometriosis. We identified some clear changes that are needed to promote awareness of the disease, and subsequently reduce diagnostic timelines.
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Projects per year Abstract Although often represented as a women’s reproductive disease, endometriosis also appears in people who have had hysterectomies, transgender men, genderfluid and non-binary people, pre-menstrual and post-menopausal people, and in rare cases, cisgender men. Its symptoms commonly include pain with menstruation, as well as chronic pain, infertility, pain with sexual intercourse, fatigue and more. Despite this full-body impact on one’s quality of life, endometriosis is commonly associated with just having “bad periods.” We are four authors from three countries looking at different aspects of endometriosis diagnosis, awareness and patient advocacy. This article emerges from a joint online presentation of our research looking at potential ways to improve awareness and patient care, and promote faster diagnosis. Our methods include social scientific and qualitative research including interviews, surveys, focus groups, participant observations and collaborations with people living with endometriosis. We identified some clear changes that are needed to promote awareness of the disease, and subsequently reduce diagnostic timelines. | Original language | Danish | |---|---| | Publication date | 11 Apr 2022 | | Publication status | Published - 11 Apr 2022 | Projects - 1 Finished - FEMaLe: Finding Endometriosis using Machine Learning Kirk, U. B. (PI), Nielsen, O. B. (Award holder), Nyegaard, M. (CoPI), Rytter, D. (CoPI), Hansen, K. E. (Participant), Forman, A. (Participant), Horne, A. W. (Participant), Saunders, P. T. (Participant), Saraswat, L. (Participant), Bokor, A. (Participant), Barko, B. (Participant), Zondervan, K. T. (Participant), Becker, C. M. (Participant), Rahmioglu, N. (Participant), Bourdel, N. (Participant), Rémy, B. (Participant), Bliznuks, D. (Participant), Meijer, S. (Participant), Raghothama, J. (Participant), Sales da Silva, B. (Participant), Møller, G. L. (Participant), Sziráczki, N. (Participant), Goethe, O. (Participant), Djokic, K. (Participant), Todic, N. (Participant), Salamon, A. (Participant), Andersen, A. M. V. (Participant) & Nielsen, L. J. (Participant) 01/01/2021 → 30/06/2025 Project: Research Research output - 1 Poster - 'It makes women feel like they’re being overdramatic’:The Influence of Social Norms and the Media on Young People’s Perceptions of Endometriosis Tomlinson, M. K. & Kirk, U. B. (Member of author collaboration), 20 Oct 2022.Research output: Contribution to conference › Poster › Research › peer-review Activities - 2 Lecture and oral contribution - Eksperthøring i Folketingets Sundhedsudvalg om Endometriose Kirk, U. B. (Lecturer) 25 May 2023Activity: Presentations, memberships, employment, ownership and other activities › Lecture and oral contribution - Foretræde til Folketingets Sundhedsudvalg om Endometriose Kirk, U. B. (Lecturer) 2 Mar 2023Activity: Presentations, memberships, employment, ownership and other activities › Lecture and oral contribution Cite this - APA - Author - BIBTEX - Harvard - Standard - RIS - Vancouver

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