“The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity

Abstract

Endometriosis is a condition which affects around 1–2% of women worldwide and has profound effects on their everyday lives. Previous research has tended to focus on physical symptoms (such as chronic pain); how women manage changes to their identity and relationships as a result of endometriosis has received less attention. This paper discusses qualitative data examining how women negotiate changes to identity while living with endometriosis, in a social context where women are expected to minimise their symptoms and conform to feminine role expectations. We conducted thematic analysis of 34 replies to an online survey seeking qualitative text responses. The women identified disruptions to personal identity as a result of living with endometriosis. They talked about not feeling like themselves (Theme 1) and about reactions from medical and social connections prompting feelings that they were going “mad” (Theme 2). Participants also expressed feeling as though they were a burden to loved ones (Theme 3), which often resulted in self-silencing (Theme 4). Findings are discussed in the context of Western expectations of women’s roles in social relationships and suggest that professionals who support women with endometriosis should be aware of strategies such as self-silencing which may reduce effective self-care.

Impact of endometriosis on women’s life decisions and goal attainment: a cross-sectional survey of members of an online patient community

“…In addition to pain, women reported that the endometriosis-related experiences that most impacted their lives in a negative way included depression or anxiety (80%), heavy menstrual bleeding (71%), the need to take prescription treatments (57%) or undergo multiple surgeries (49%) or infertility (46%). In other studies, women have reported not feeling ‘normal’ or feminine, experiencing a range of negative emotions (eg, anger, depression, hopelessness, disappointment and exhaustion), having limited physical or sexual activity, struggling to find appropriate treatments, feeling guilt over disrupted relationships and suffering in silence due to endometriosis-related symptoms 22 23…”

“…In contrast, few studies have examined the impact of endometriosis on a woman’s life course (ie, ‘life-course impairment’) based on how symptoms and experiences resulting from the disease influence major life events and decisions (such as whether to pursue educational opportunities, choose a career path, establish intimate relationships and plan for a family) and the overall ability of patients to attain their life goals 19 20. The few existing studies have small sample sizes or are qualitative, relying on informational interviews to ascertain the life-course impact of the disease, but highlight the substantial impacts that endometriosis can have on social activities, intimate relationships, education, work productivity and psychological well-being 11 21–23. Understanding life-course impairment, as opposed to focusing on the symptoms of the disease (such as pain or infertility, which are most often addressed individually not holistically), is vital because of the complicated inter-relationship among symptoms and their downstream effects.…”

Dismissal, distrust, and dismay: A phenomenological exploration of young women’s diagnostic experiences with endometriosis and subsequent support

“…This is paired with a current lack of comprehensive clinical guidance for diagnosing and signposting those presenting with endometriosis indicator symptoms, resulting in the label ‘missed disease’ (Overton and Park, 2010). A risk associated with this delayed diagnosis is that patients experience feelings of isolation, especially during crucial periods of identity development during young adulthood (Cole et al, 2021; Marschall et al, 2021). This was particularly evident in participants’ concerns surrounding fertility, with many questioning their role as a woman based on social and cultural expectations.…”

“…This was particularly evident in participants’ concerns surrounding fertility, with many questioning their role as a woman based on social and cultural expectations. Recent literature suggests that infertile women with endometriosis struggle to maintain a ‘feminine identity’ (Cole et al, 2021), as well as anxiety and worry surrounding future family planning (Hudson et al, 2016). Participants in this study also emphasised the role of clinicians in fertility-based decision making to provide informed guidance, alongside the emotional support from within their own support network.…”

Research and Professional Literature to Inform Practice, July/August 2022

“…Holistic research on diseases like endometriosis is essential, however, because holistic research identifies how an individual lives with their disease on a daily basis and how they plan and prepare for the future. Existing life‐course data on endometriosis suggest that endometriosis significantly affects one's social life, work, education, relationships, and well‐being, 3,4 but larger studies are needed to generalize these findings.…”