Using Medical Illustration to Improve Understanding of Endometriosis

Endometriosis is a chronic and debilitating condition where cells similar to those found in the endometrium migrate elsewhere in the body. These rogue cells react to the menstrual cycle and bleed leaving the deposits to remain trapped. With nowhere to go, these endometriotic deposits go on to cause inflammation and scarring of healthy tissue and organs, as well as severe pain and discomfort. It is a condition that is said to affect 190 million women worldwide. Despite many theories regarding the epidemiology and pathogenesis of endometriosis, there is no conclusive evidence to state how, or why, the condition originates in only some individuals and because of this there is no cure.

Whilst it affects many women on a global scale, endometriosis is a condition that is still widely unheard of and lacking in research funding, further hindering diagnostic times, which currently stand at an average of 8 years in the United Kingdom; delaying the development of novel methods to stop the disease from progressing and impacting the quality of life for patients. Information surrounding endometriosis, particularly online, can be largely inaccurate. There are limited illustrations and educational tools available that explain and depict the disease or visualise its three highly individual subtypes.

This research project set out to discover if those living with the condition felt there was a need for more and better visual communications depicting endometriosis and the various methods used to manage and treat both it and its symptoms. Feedback, in the form of a questionnaire, was gathered from a group of participants who were formally diagnosed with, or were experiencing symptoms of, endometriosis. The questionnaire was shared via various social media platforms in July 2019. The respective findings from the questionnaire provided a foundational base for what was to be a website presenting various aspects of endometriosis, including a brief history of the condition along with digital illustrations of the three subtypes of endometriotic growth and where it can be typically found, as well as sites for extra-pelvic and rare endometriosis. The target audience was initially those with the condition, those who were awaiting an official diagnosis and doctors/healthcare providers. However, given the nature of endometriosis and the subsequent findings identified in the questionnaire which highlighted the lack of awareness regarding the condition, a wider audience that included academics and the general public were also deemed important to reach. In addition to creating an informative web resource for use by patients and healthcare providers, 3D digital and printed models were developed for public display.