Endometriosis-Associated Symptoms and Diagnostic Delay: An Online Survey

Maryam Moradi, Azin Niazi, Melissa Parker, Anne Sneddon, Violeta López, David Ellwood
In: Research Square · 2020 · doi:10.21203/rs.3.rs-126422/v1 · W3161952980
preprint OA: green CC0
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This online survey of 903 women found that endometriosis diagnosis delay averaged 8.1 years, with period pain, fatigue, and bloating being the most common symptoms regardless of birthplace.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This cross-sectional online survey in Australia recruited 903 women with self-reported endometriosis, of whom 86.5% reported surgical confirmation, to characterize lifetime endometriosis-associated symptoms and quantify diagnostic delay (from symptom onset to diagnosis). Using an anonymous web-based questionnaire (2013–2015) analyzed in STATA, participants reported a mean diagnostic delay of 8.1±6.2 years and highly prevalent symptoms including period pain, fatigue, bloating, ovulation pain, pelvic pain, pain around sexual activity, and heavy bleeding, with delayed fertility reported by 37.98%. The paper notes limitations typical of survey-based, convenience/snowball sampling and self-reported data rather than a controlled prospective diagnostic workup. This paper is centrally about endometriosis — it measures endometriosis-associated symptoms and diagnostic delay in an Australian online survey.

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Abstract

Abstract Background: Endometriosis is found in women of all ethnic and social groups with a prevalence of around 10%. However, data on diagnostic-delay and associated symptoms are limited. The aim of this study was to determine the endometriosis-associated symptoms and diagnosis-delay through an online survey. Methods : A cross-sectional study was conducted in Australia using an online web-based survey. All data were entered and analyzed using STATA (version 14/1). A total of 903 responders completed an online survey from September 2013 to October 2015. Results: Total participants of 903, 71.10% Australians (were born in Australia) and 28.90% Non-Australian (were not born in Australia), with self-reported diagnosis of endometriosis was confirmed by surgery in 86.5% of participants completed the online survey. Delay in diagnosis was 8.1±6.2 years. There was no difference between age range (p = 0.35), mean age of onset of the first symptoms (p = 0.93), and delay in diagnosis (p = 0.11) in both groups. Most common endometriosis-related symptoms that all responders had experienced in their lifetime were period pain 98.11%, fatigue 94.01%, bloating 90.69%, ovulation pain 88.70%, pelvic pain 87.26%, pain during before/after sexual activity 82.72% and heavy bleeding 82.17% and delayed fertility 37.98%. Treatments used in affected women included: pain killers 96.01% (n=867), hormonal medication 84.71% and surgical treatments 84.49 %. Rate of miscarriage or stillbirth was 13.4% and hysterectomy because of endometriosis was 9.6%. Conclusions : Vast similarities in demographics and endometriosis-associated symptoms among the Australian and non-Australian women with endometriosis support the universality of the disease characteristics. Delay in diagnosis of endometriosis is a problem and the reasons for delayed diagnosis must be better understood to try to shorten this delay. Except for pain, endometriosis patients suffer from a variety of symptoms and treatment must take into account the most prominent symptoms.

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endometriosis

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