Women\u2019s Experiences of Vulvodynia: An Interpretative Phenomenological Analysis of the Journey Toward Diagnosis

Rebekah Shallcross,Gundi Kiemle,David Nunns,Kate Taylor,Joanne M Dickson

doi:10.1007/s10508-018-1246-z

Abstract

Vulvodynia is the experience of idiopathic pain characterized by burning, soreness, or throbbing in the external female genitalia or vulva and is estimated to be experienced by 4–16% of the female population, yet only half of women seek help regarding their symptoms. Of the women who do seek help, only around 2% obtain a diagnosis. Therefore, the aim of the current study was to explore the experiences of women with vulvodynia on their journey toward diagnosis, by using semi-structured interviews and an interpretative phenomenological analysis (IPA) methodology. Eight women were interviewed, and their experiences were analyzed and interpreted into three master themes, each with constituent sub-themes: (1) The Journey Is a Battle, (2) “What Is Vulvodynia?”: Ambivalence Toward Diagnosis, and (3) Patriarchy, Women, and Sex. Overall, women perceived a healthcare system which was dismissive and shaming, with an inadequate knowledge of vulvodynia. This in turn impacted on women’s psychological well-being. Psychological understanding, one-to-one therapy, and consultation and training for healthcare professionals may help to improve the psychological well-being of women with vulvodynia.

Highlights

Vulvodynia is the experience of idiopathic pain characterized by burning, soreness, or throbbing in the external female genitalia or vulva (Nunns & Murphy, 2012), and is experienced by 4–16% of the female population in the U.S (Eppsteiner, Boardman, & Stockdale, 2014), with no UK population
The current study included both pre- and post-menopausal women, which may be deemed to breach the homogeneity needed for the conduct of interpretative phenomenological analysis (IPA) research
The decision to exclude women based on pre- or post-menopausal status in previous research (Marriott & Thompson, 2008; Sadownik et al, 2012a, b) was viewed as unhelpful, given that both groups are affected by vulvodynia and within this small sample both recounted similar experiences in their journeys toward diagnosis

Summary

Introduction

Vulvodynia is the experience of idiopathic pain characterized by burning, soreness, or throbbing in the external female genitalia or vulva (Nunns & Murphy, 2012), and is experienced by 4–16% of the female population in the U.S (Eppsteiner, Boardman, & Stockdale, 2014), with no UK populationKate Taylor is a pseudonym.estimates available. Vulvodynia is the experience of idiopathic pain characterized by burning, soreness, or throbbing in the external female genitalia or vulva (Nunns & Murphy, 2012), and is experienced by 4–16% of the female population in the U.S (Eppsteiner, Boardman, & Stockdale, 2014), with no UK population. Social constructions around sex and womanhood exacerbate psychological difficulties by increasing shame, silencing, and guilt at not being able to “perform as a woman,” which in turn leads women to feel de-gendered and no longer “a real woman” (Ayling & Ussher, 2008; Kaler, 2006; Marriott & Thompson, 2008). The psychological impact of vulvodynia should be understood in the context of individual experiences, and within a societal context, and experiencing pain in an area intrinsically linked with sex, gender, and femininity (Shallcross, Dickson, Nunns, Mackenzie, & Kiemle, 2018)

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Conclusion