Endometriosis is a medical condition in which cells similar to the ones lining the womb grow elsewhere in the body. It can be painfully debilitating but also comes with considerable psychological burden. 1 in 10 women and transmen are living with endometriosis. It can take around 7.5 years to get diagnosed.

Adenomyosis is a medical condition in which the inner lining of the womb grows into the muscle wall of the womb. Adenomyosis can only be diagnosed after hysterectomy, although surgeons may suspect it. It is common for those with endometriosis to also be diagnosed with adenomyosis.

“Everyone has a story we know nothing about”

In the summer of 2019, Clair Dempsey, a postgraduate researcher from Coventry University placed an advert looking for people with endometriosis and/or adenomyosis to be co-researchers in a photography-based research study that would assesses the psychology need and coping strategies of those living with these conditions. A research method called photovoice was used to conduct the assessment. Photovoice uses images and captions to answer a research question. For this piece of research the question was: What are the psychological needs and coping strategies of people living with endometriosis and/or adenomyosis?

For a period of five weeks, six women took five photographs each week and added captions to provide context and meaning to the images. There were 143 images and the total word count of the captions was just over 13,000. All the images and captions were displayed at an exhibition called ‘This is Endometriosis’.