Abstract
Endometriosis is a chronic and often painful inflammatory disease affecting one in ten biological females. It has been characterized as enigmatic and the average diagnostic delay is nearly seven years, time which patients experience as tumultuous and uncertain. This paper presents responses to a final open comment question of a large-scale survey documenting patients’ experiences with (mis)diagnosis and highlights patients’ perceived barriers and facilitators to care. The majority of barriers (n=251/300; 83.7%) emphasized the role of healthcare providers followed by systemic barriers with the broader healthcare system (n=49; 16.3%), which most often stressed inadequate medical education (n=23). Drawing on a framework of trust, we observed that most HCP-related barriers (n=132/251; 52.6%) described HCPs’ lack of technical competence and inadequate knowledge about endometriosis, followed by concerns about fidelity (n=79; 31.2%), in which patients recounted experiences of their symptoms being trivialized or dismissed. Several respondents (n=38; 15.1%) also described a causal relationship between competence and fidelity, whereby a lack of competence was perceived to lead HCPs to be dismissive or neglectful. Importantly, the most common facilitator similarly highlighted the value of HCPs (n=59/99; 59.6%), followed by self-advocacy efforts (n=30; 30.3%) and online communities (n=10; 10.1%). We discuss the importance of HCPs and, in particular, the value of trust for endometriosis patients who struggle to find a diagnosis, viable treatments and often feel unheard.