Endometriosis-associated Symptoms and Diagnostic Delay: An Online Survey

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.