That one doctor. . . Qualitative thematic analysis of 49 women’s written accounts of their endometriosis diagnosis

Abstract

Introduction: One in nine women experience endometriosis, a common gynaecological disease, yet time to diagnosis averages 7 years. People are sharing their endometriosis experiences online. This research’s aim was to expose and synthesise the collective themes of diagnostic experience. Method: A qualitative thematic analysis of publicly accessible online autobiographical accounts of women and their endometriosis diagnosis. Themes were coded within NVIVO and thematic maps and tables created. Eighty-nine original accounts were identified, 26 were excluded. Saturation point was 49. Results: Women communicated long, painful and emotional journeys to diagnosis. Forty women experienced endometriosis symptoms before the age of 20, 33 before 15 years. Despite repeated GP presentation, 36 women had never heard of endometriosis before diagnosis. Women highlighted the positive impact of ‘that one doctor’ who said the word ‘endometriosis’ who listened, believed, investigated and provided prompt referral to specialists. Diagnosis gave relief and answers to the long journey, provided women a sense of community, hope and personal visibility after feeling alone. While this common disease is undiagnosed women suffer. Conclusion: ‘That one doctor’ can transform a patient’s experience and create a positive diagnosis pathway towards endometriosis. The doctor patient alliance is vital for prompt diagnosis. Symptom dismissal with long diagnosis delays are having negative, physical and psychological consequences for women. Early detection, GP education and community awareness campaigns are imperative to reduce further delayed diagnosis and long-term negative impacts of undiagnosed endometriosis.

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

“…The meta-synthesis also noted the positive experiences reported when women were transferred quickly to specialist care (ibid). Fernley’s (2021) analysis of online public accounts in Australia of experiences leading to endometriosis diagnosis produced some themes similar to Pettersson and Berterös (2020) meta-synthesis; it also reported how a significant majority of women remained unaware of endometriosis for some time. Rowe et al (2021) further recommends longer-term care planning and a collaborative approach to care incorporating women’s self-knowledge and expertise.…”

Patient and Practitioner: The Impact of Social Factors on Diagnostic Delay for Endometriosis

“…There are several patient characteristics that impact speed of endometriosis diagnosis including age, ethnicity, and knowledge about endometriosis [24][25][26][27][28]. Furthermore, the normalization of pain, the internalized stigma surrounding women's health, and the capacity to selfadvocate are also important contributors [18,25,[28][29][30][31][32][33][34][35][36].…”

“…Age is an additional barrier to diagnosis [25,26]. Younger patients report having their HCPs insist that they are too young to present with endometriosis [25] although symptoms appear in some individuals shortly after first menstruation [27]. An international survey found that some individuals experienced the symptom onset of endometriosis at age 16 or younger [37].…”

“…However, a qualitative thematic analysis found that most women were not knowledgeable about endometriosis [28]. In one study, approximately 76% of women were unaware of endometriosis prior to their diagnosis [27]. Patients demonstrate a lack of knowledge about symptom presentation of endometriosis and treatment [28].…”

Blogging with dementia: Writing about lived experience of dementia in the public domain

“…Health blogging – writing blogs about health conditions – is also relatively common. Academic research has explored the blogging activities of women with breast cancer (Martino et al, 2019; McNamara, 2007), burns survivors (Garbett et al, 2017), women with endometriosis (Fernley, 2021), people with depression (Kotliar, 2016), as well as health blogging more generally (see, for example, Rains & Keating, 2011). Health blogging has been examined as a means of providing social support for people with health conditions (Rains & Keating, 2011), and has been associated with modest improvements in wellbeing (Rains & Keating, 2015), and there is a suggestion that reading blogs written by someone with personal experience of a health condition (in this case HIV) are more persuasive in changing action than blogs written by professionals (Neubaum & Krämer, 2015).…”