INTRODUCTION
Endometriosis is one the most common gynaecological diseases affecting an estimated 10% of reproductive-age women and those born female-sex worldwide, equivalent to 190 million individuals.1Diagnosing endometriosis continues to be a challenge due to a myriad of factors including nonspecific symptoms2, limitations with non-invasive biomarkers and imaging3, symptom normalization4, and lack of awareness on the part of both the public and healthcare providers.5 These factors have led to a typical lengthy interval of time between symptom onset and diagnosis.6 Despite the historical and current challenges, non-invasive imaging such as advanced transvaginal ultrasound (TVS) and magnetic resonance imaging (MRI) have demonstrated excellent diagnostic accuracy in visualising ovarian endometriomas (OE), deep endometriosis (DE) and pelvic adhesions such as pouch of Douglas obliteration7, which could potentially increase the likelihood of an earlier diagnosis and avoid the need for major surgery (surgical diagnosis). Besides the benefit of initiating targeted therapy for endometriosis sooner, focus groups revealed that medical labelling (i.e. being given a diagnosis) would significantly and positively impact employment, relationships, and family planning.8 The experiences of validation, empowerment, and a sense of control over endometriosis have been described to occur following medical labelling.8–10
Whilst the general public has limited to no knowledge of the disease, the knowledge of individuals with endometriosis is thought to be more sizeable and includes an appreciation of the gaps in care that require improvement.11 There is also a growing tendency for patients to seek expert endometriosis physicians for diagnosis and treatment. The patient voice is increasingly represented in endometriosis research, bridging the gap between healthcare providers and their patients, reaching both with a deeper understanding of where improvements need to be made regarding care and management.5,12 However, these voices often belong to highly educated and connected individuals or organisations in developed nations. As diagnosing endometriosis remains the gatekeeper to initiating therapy, our study aimed to assess the knowledge level of the lay international population regarding the process and tools used in diagnosing endometriosis.