Abstract
Endometriosis is a long-term condition in which endometrial-like tissue grows outside of the womb, causing intense chronic pain. Previous work has demonstrated the physical and emotional impact on women who live with endometriosis, and metaphors can play an influential role in communicating the experience of pain, but there exists little understanding of the role and impact of such language for women with endometriosis. A qualitative, semi-structured interview design. Conceptual Metaphor Theory (CMT) and Interpretative Phenomenological Analysis (IPA) were utilized in a mixed-methods study to examine the prevalence, types, and meaning of metaphors and metaphor use as a health communication strategy. Twenty-one women aged between 23 and 53years (mean age 36.1years) with endometriosis took part in audio-recorded interviews. The women reported experiencing symptoms for an average of 11years before receiving a formal diagnosis of endometriosis, and the mean age of diagnosis was 27.6years. Seven distinct conceptual metaphors were identified in 221 metaphorical expressions used across all participants, with most common ones referring to pain as physical properties of elements such as temperature and pressure, physical damage, and an external attacker. IPA revealed three themes pertaining to the feeling of vulnerability and helplessness, pain being incomprehensible, and a drive to manage and conceal pain simultaneously. This study demonstrates the power of language in facilitating understanding and empathy in the listener, alongside the challenge of communicating endometriosis pain to others. Imagery-based techniques may assist in adaptation to, interpretation, and acceptance of pain to reduce pain-related distress.
Highlights
Endometriosis is a debilitating gynaecological condition, affecting one in ten women of reproductive age (Endometriosis UK, 2017), in which tissue similar to the uterine lining is found outside the uterus.Symptoms include heavy and/or painful periods, fatigue, and bowel and bladder problems, with long-term effects such as risk of infertility and chronic pain
The present study used a novel, mixed-methods design, combining Conceptual Metaphor Theory (CMT) with Interpretative Phenomenological Analysis (IPA), to examine metaphors in the communication of endometriosis pain, with qualitative findings complemented by quantitative findings
The Metaphor Identification Procedure (MIP) and IPA revealed that conceptual metaphors adopted to describe endometriosis pain were wide ranging, most often emphasizing the sensory qualities and perceived threat of pain, which may offer women a way to make sense of and qualify their pain experience
Summary
Endometriosis is a debilitating gynaecological condition, affecting one in ten women of reproductive age (Endometriosis UK, 2017), in which tissue similar to the uterine lining is found outside the uterus.Symptoms include heavy and/or painful periods, fatigue, and bowel and bladder problems, with long-term effects such as risk of infertility and chronic pain. Interview data highlight that this impact is further complicated by the perceived normalization, trivialization, or disbelief of pain by medical professionals and families, and diagnosis delays, both of which are key sources of distress (Bullo, 2018; Facchin, Saita, Barbara, Dridi, & Vercellini, 2017). Likewise, this is echoed in a recent systematic review of qualitative research with women with endometriosis, summarizing that endometriosis and its associated pain poses significant risk to women’s well-being and quality of life (Young, Fisher, & Kirkman, 2014)
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