Endometriosis affects an estimated 200 million people worldwide. Despite its prevalence, those living with the disease often wait an average of 7.5 years…
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We are four authors from three countries looking at different aspects of endometriosis diagnosis, awareness and patient advocacy. This article emerges from a joint online presentation of our research looking at potential ways to improve awareness and patient care, and promote faster diagnosis. Although Eileen’s interviews and surveys showed that social media can be very beneficial to people who live with endometriosis, Maria’s focus groups showed that social media is not very effective at reaching people who do not have the condition. People with endometriosis often put enormous amounts of work into sharing endometriosis information online, but it often does not reach the broader population.
Eileen’s social media analysis shows that people with endometriosis often use social media to represent their lived experiences of menstrual pain and endometriosis with complexity, in contrast to common media representations.