Living With Endometriosis: A Reflexive Thematic Analysis Examining Women’s Experiences With the Irish Healthcare Services

Abstract

Endometriosis is an incurable chronic condition associated with debilitating pain and subfertility, affecting 1 in 10 women. The current study aims to explore the perceptions and experiences of women with endometriosis regarding the diagnosis, support and treatment options available in Ireland. It will further determine whether additional supports or improvements are needed to care well and effectively for women with this disease in the Irish healthcare system. A qualitative study design was deemed most suitable. Twenty participants, women aged 18 and over with a diagnosis of endometriosis and experience of the Irish healthcare system, were recruited through purposeful sampling to complete semi-structured, one-to-one online interviews. Data was analysed using reflexive thematic analysis, and five themes were identified: ‘dismissive attitudes normalising severe pain’, ‘inadequate health system’, ‘the impact of delayed diagnoses’, ‘lack of education and awareness’ and ‘navigating ignorance, taboo and societal views’. Insights into the experiences and needs of women diagnosed with endometriosis in Ireland were gained, and we discuss the implications of our findings for Irish healthcare services with reference to feminist health equity and recent national action plans. We propose a series of recommendations for patient-centred care models including increased access to training and education, as well as support for longer-term chronic pain management.

“I have to fight for them to investigate things”: a qualitative exploration of physical and mental healthcare for women diagnosed with mental illness

“…A systematic review of the psychological impact of medical gaslighting on women ( 15 ) found the healthcare experiences of women to be overwhelmingly negative and encompassing medical gaslighting, leading to delayed diagnosis, the need for self-advocacy, worsening health conditions and trauma ( 15 ). Experiencing medical gaslighting can lead to women suppressing emotion in clinical settings out of fear of being stigmatised and dismissed ( 35 ), using comprehensive self-management and communication strategies, and self-advocacy in an effort to get needs met and avoid further inequity ( 15 , 34–36 ), feeling that symptoms must need to be severe in order to warrant seeking medical care ( 36 ), and feelings of grief and loss from years spent undiagnosed and untreated ( 37 , 38 ). Due to medical gaslighting, women may also distrust, fear and avoid health services ( 17 , 32 , 34 , 39 ), and under-report their symptoms ( 40 ).…”

“…Due to medical gaslighting, women may also distrust, fear and avoid health services ( 17 , 32 , 34 , 39 ), and under-report their symptoms ( 40 ). This can increase vulnerability to illness, for example via delayed diagnosis ( 16 , 38 ), and worsening symptoms ( 15 , 17 ).…”