Living with Endometriosis: A Narrative Analysis of the Experiences of Kenyan Women

Sadie Bergen, Doris Murimi, Caitlin Gruer, Gibson Munene, Atunga Nyachieo, Maureen Owiti and Marni Sommer ()
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Sadie Bergen: Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, 722 W. 168th Street, New York, NY 10032, USA
Doris Murimi: Endo Sisters East Africa Foundation, Laiboni Center, Off Lenana Rd., Nairobi P.O. Box 100798-00101, Kenya
Caitlin Gruer: Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, 722 W. 168th Street, New York, NY 10032, USA
Gibson Munene: Endo Sisters East Africa Foundation, Laiboni Center, Off Lenana Rd., Nairobi P.O. Box 100798-00101, Kenya
Atunga Nyachieo: Institute of Primate Research, Karen, Nairobi P.O. Box 24481-00502, Kenya
Maureen Owiti: The Department of Obstetrics and Gynaecology, Kenyatta National Hospital, Nairobi P.O. Box 20723-00202, Kenya
Marni Sommer: Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, 722 W. 168th Street, New York, NY 10032, USA

IJERPH, 2023, vol. 20, issue 5, 1-12

Abstract: 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.

Keywords: endometriosis; pelvic pain; menstrual disorders (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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