Sadie Bergen, Doris Murimi, Caitlin Gruer, Gibson Munene, Atunga Nyachieo, Maureen Owiti, Marni Sommer
Despite the high global prevalence of Endometriosis, little is known about the experiences of women living with the disease in low- and middle-income contexts, including in Kenya and other countries across sub-Saharan Africa. This study captures the perspectives and recommendations of Kenyan women living with Endometriosis through written narratives about the impact of the disease on their daily lives and their journeys through diagnosis and treatment. Thirty-seven women between the ages of 22 and 48 were recruited from an Endometriosis support group in Nairobi and Kiambu, Kenya (February-March of 2022) in partnership with the Endo Sisters East Africa Foundation. Narrative data (written anonymous stories submitted through Qualtrics) were analyzed using a deductive thematic analysis methodology. Their stories revealed three themes related to their shared experiences with Endometriosis: (1) stigma and disruption to quality of life, (2) barriers to acceptable healthcare, and (3) reliance on self-efficacy and social support to cope with the disease. These findings demonstrate a clear need for improved social awareness of Endometriosis in Kenya and the establishment of clear, effective, and supportive pathways, with trained, geographically and financially accessible health care providers, for Endometriosis diagnosis and treatment.
