‘My Devil Womb’: Patients’ perspectives on, and understanding of,
endometriosis: An observational cross-sectional study
Abstract
Objective: To gain insight into patients’ understanding of
endometriosis, utilised sources of information on endometriosis, and
perceptions of available treatment options. Design: Observational
cross-sectional study. Setting: Data were collected from an outpatient
specialist endometriosis clinic within a tertiary hospital.
Participants: New patients referred with symptoms suggestive of
endometriosis. Methods: A paper based questionnaire was completed by new
patients on their first presentation to the clinic. Main outcome
measures: Patient understanding of symptoms and causes of endometriosis,
types and expectations of treatment, and sources of information utilised
by patients in researching endometriosis. Results: Approximately half of
all included patients were unsure of the aetiology of endometriosis.
Patients who relied on information from specialist gynaecologists were
more optimistic about the outcome of surgical treatment, while those who
relied on general practitioners were more optimistic about the outcome
of medical treatment, when compared to those who sought information from
online sources. Conclusions: Endometriosis is a chronic and debilitating
condition, yet there is limited data available regarding both the
sources of information that patients’ access, and their perceptions of
the disease. Given the high proportion of patients in our study who
lacked knowledge of endometriosis, and the negative correlation between
the use of social media for information and perception of treatment,
there is a clear need for improved access to evidence-based resources
for patient education. Funding: None received Keywords: Endometriosis,
laparoscopy, social media, patient education