The ENDOCUL Study

Well it’s the first post of 2012, so first off I’d like to wish all my readers a very happy new year despite it being two weeks late. I’ll also start off the New Year with a post about a study that took place in my university last year. This study was carried out with women in the UK and aimed to investigate the different experiences of endometriosis of women from different ethnic backgrounds.

You can read all about the way in which the study was conducted and the key findings, here. It makes a quite interesting read to see how women from other cultures view the disease and its treatment. Of course the study could only look at a small subset of women from a handful of cultures, so it would be very interesting to expand this study to more women from an even more diverse set of backgrounds.

One of the outcomes of this study was that it led to the creation of tailored resources for women of different ethnic backgrounds, specifically several videos especially for women from Afro-Caribbean, Indian, Pakistani, Chinese and Greek backgrounds with narration in their native language. I’ve actually spoken to the leader of this study from my university and discussed the possibility of expanding these resources for even more languages (e.g. Arabic, Nigerian, Spanish, Portuguese, etc) so watch this space!

A presentation was also produced aimed at healthcare providers, but I would highly recommend it to anyone interested in seeing endometriosis from another viewpoint.

Making these resources available online is essential in our information age. The advent of the internet has allowed dissemination of our knowledge at a speed hitherto unknown throughout all of human history; and whilst this has led to some remarkable leaps forward in technology and science, it also means that inaccurate and potentially harmful information can be spread faster than ever before. This is increasingly true for women in third world countries or from underprivileged backgrounds that may not have access to reliable information in their own language.

I know even in developed countries women are fed a whole heap of misinformation about endometriosis, often from health professionals, but for English speakers doing your own research, finding and joining support networks has never been easier. It must be even more difficult for women in poorer countries, where health care is basic, misunderstanding is common and support is impossible to find. Therefore, if you happen to know someone who is a native speaker of one of the languages included in this study and you think they would benefit from hearing what the video has to say, forward it to them and let’s erode the misunderstanding about endometriosis, one person at a time.