I co-wrote another short piece on endometriosis (particularly the delays to care) for The Conversation in collaboration with social science scholars from across the world. You can read the full article here:
Our research suggests that endometriosis education is severely lacking, meaning that many people who have the condition do not even know it exists.
In focus groups with 77 16- to 19-year-olds in the United Kingdom, Maria found that only 28 had heard of endometriosis before. Of these, two were able to accurately define it. Most of those who had heard of the disease had done so through friends and family, with some also hearing about it on social media or the internet. None of them had been told about it in their formal education.
Eileen’s survey of 271 people with endometriosis showed that only nine people (3.3 per cent) heard about endometriosis from grade school (elementary, junior or high school) with a few mentioning that they had heard about it briefly in nursing school.
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.