"Allow us to show them the pain by squeezing their hand": The study of pain communication and the diagnostic delay of endometriosis

Abstract: Endometriosis is a gynaecological disorder that affects an estimated 176 million women worldwide. Endometriosis causes serious societal impacts, such as loss of work productivity and effectiveness of non-work-related activities. Regardless that a significant number of women are impacted, many clinical questions remain unanswered, treatment failures are common, diagnosis takes an average of seven and a half years, and there is little investment in investigating disease mechanisms. At the same time, in the last few decades, endometriosis has been repeatedly mislabelled, which still presents indications on the current endometriosis care. Furthermore, there is still a tendency to exclude women's experiential knowledge, which presents one of the biggest burdens of endometriosis. The Degree Project demonstrates communication barriers to early diagnosis from 262 women using survey data and aims to understand women and medicine's power relations. Through this analysis, women's perspective is presented and discussed. The analytical discussion is divided into four chapters: medical knowledge, pain communication, desired communication support and experiential support. The study identifies how the relationship of knowledge and power impact pain communication and consequently the diagnosis of endometriosis. This study contributes to endometriosis, gender and communication for development studies by suggesting the incorporation of women’s experiential knowledge to address the challenges of pain communication and the diagnostic delay.