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.