Living with Endometriosis
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’ on 24th October 2019.
This photobook contains some of the raw data that was collected for the needs assessment. We invite you to take a look into what it’s like to live with endometriosis and adenomyosis. Take the time to absorb the meaning behind each picture and put yourself in the shoes of these brave and honest women.
If you have any feedback, comments or questions about ‘Living with Endometriosis’, please contact Clair – dempsey4@coventry.ac.uk or @Clair_Dempsey on Twitter.
“Part of our re-investment policy, we were proud to support Clair’s exhibition amplifying the voices of people suffering with this often invisible and misunderstood medical condition. We are looking forward to working together on co-creating a digital Hope programme to help alleviate the emotional burdens and help the women and transmen cope better.”
Acknowledgements
Thank you to – Hope for the Community, Andy Turner, Liz Sparkes, Faith Martin, Gabriela Matouskova, Kaye Sedgwick-Jones, Heather Sears and Jennifer McNally from the Doctoral College Coventry University, Rachel Mosses, everyone at in the Centre for Intelligent Healthcare, Clive Dixon at the Inkwell, the PGR community at Coventry University, David Dempsey.
Special thank you to all the co-researchers and their friends and family.
