“Waves and waves of excruciating pain”: An interpretative phenomenological analysis of women living with endometriosis

Abstract

Backgroung, aims and objectives: Endometriosis is a perplexing and chronic disease, with an unknown cause and no cure, affecting around 10-15% of women of reproductive age. Symptoms of the condition include severe menstrual cramps, pelvic pain before, during and after periods, nausea, fatigues, infertility, excessive bleeding and pain when moving bowels. Diagnosis can only be established via a laparoscopy and delays have been reported to occur from an individual patient level and a medical level. The study aimed to observe the impact that endometriosis has on women’s lives and contribute to the knowledge provided by the existing qualitative literature. Methods: The study adopted a qualitative approach and utilised secondary data in the form of videos published on YouTube. Six videos were chosen which were transcribed verbatim and data analysed using interpretative phenomenological analysis (IPA). The analysis conveyed three superordinate themes: making sense, effect on quality of life, and support. Results: The women reflected on the journey they endured which began by experiencing menstrual cramps and gradually worsened with the onset of additional symptoms. These symptoms had a negative impact on daily living and a reduction in their quality of life (QoL). Women revealed feeling isolated, which stemmed from the lack of support from medical professionals, friends and family. Despite many visits to doctors, the pathway to diagnosis was delayed. Symptoms were normalised by doctors, friends and family members, which reduced the legitimisation of the condition. Conclusion: Overall, there is a lack of sufficient knowledge, support and acceptance for women suffering with endometriosis. Suggestions for future research and practice include focusing on how to improve women’s quality of life, exploring effective self-management interventions, introducing educational interventions and developing person-centered models of care which could contribute to earlier diagnosis and less suffering.