"The wounds are what remains inside you": a study on the implications of living with endometriosis

The report "The wounds are what remains inside you: a Photovoice study on the implications of living with endometriosis" is a portrait of the realities experienced by women affected by this chronic disease. The participatory photovoice study, carried out between May and June 2022, included the participation of nine affected women.

Endometriosis is a chronic disease that has a significant impact on the physical, emotional, and social health of women who suffer from it, and that, moreover, usually takes years before it is properly diagnosed and treated. These are some of the aspects that the researcher Laura Medina Perucha from the Institut d'Investigació en Atenció Primària Jordi Gol i Gurina (IDIAPJGol) has investigated in a participatory study carried out in collaboration with the Association of Endometrial Affected Women of Catalonia ( Endo&Cat), the Institut Català de la Salut, the Hospital Clínic de Barcelona and the Center d'Anàlisi de Programas Sanitaris. The research team has published the report "Wounds are what remains inside you: a Fotovoz study on the implications of living with endometriosis", a portrait of the impact and implications of this disease on affected women in the Barcelona area.

Previous notes on endometriosis

Endometriosis is an estrogen dependent inflammatory disease. It is a chronic condition that is characterized by the presence of endometrial tissue outside the uterine cavity. Estimates of the total number of women affected are imprecise, but between 10 and 18% of women of childbearing age are reported. The main symptoms and also the most frequent are acute and progressive menstrual pain, chronic pelvic pain, pain during sexual intercourse, periovulatory pain, dyschezia (painful defecation) and infertility/sterility. This disease has a direct impact on the quality of life of affected women, on their emotional health, social and sexual relationships, as well as in the workplace.

The diagnosis of endometriosis is made mostly in adulthood, although cases of girls and adolescents with this disease have been detected. However, 60% of cases are undiagnosed and it takes an average of 6-10 years to be diagnosed, from the first visit to the health services. In fact, a study carried out in Catalonia by the same research team at IDIAPJGol identified that the diagnosed cases of endometriosis in Catalonia in 2018 represented 1.1% of the population of childbearing age. This data does not reflect the extent of this affectation, which reinforces the hypothesis that it is an underdiagnosed disease.

A participatory photovoice study on endometriosis

The main objective of the study with a gender perspective has been to explore and represent the experiences of endometriosis, the diagnostic process and access to health services for women living with endometriosis in Catalonia.

The study carried out with the participants has been carried out following the photovoice method, whose objective is to promote both research and trigger changes in the community in a participatory way, through group conversations and the use of photography. There were a total of 6 group sessions that took place at the IDIAP Jordi Gol facilities, during the months of May and June 2022.

Conclusions focused on change

The women who have participated in the study have concluded that the acceptance of the implications of this disease is a long and gradual process, with various phases where there is usually an emotional component for which there is not enough psychological and social support. They also stress the importance of having support spaces and progress towards a comprehensive approach to endometriosis in health services. They also stress the need for early diagnosis and the review of stigmatizing and discriminatory practices in health services.

That is why it is necessary to promote social research in the field of health, to improve the prevention, diagnosis and treatment of endometriosis. In these processes, the report emphasizes, it is necessary to have the affected people themselves so that they can contribute their experiences throughout the investigation process, as they have done in this study.