Women’s Subjective Experiences of Living with Vulvodynia: A Systematic Review and Meta-Ethnography

Abstract

Vulvodynia, the experience of an idiopathic pain in the form of burning, soreness, or throbbing in the vulval area, affects around 4–16% of the population. The current review used systematic search strategies and meta-ethnography as a means of identifying, analyzing, and synthesizing the existing literature pertaining to women’s subjective experiences of living with vulvodynia. Four key concepts were identified: (1) Social Constructions: Sex, Women, and Femininity: Women experienced negative consequences of social narratives around womanhood, sexuality, and femininity, including the prioritization of penetrative sex, the belief that it is the role of women to provide sex for men, and media portrayals of sex as easy and natural. (2) Seeking Help: Women experienced the healthcare system as dismissive, sometimes being prescribed treatments that exacerbated the experience of pain. (3) Psychological and Relational Impact of Vulvodynia: Women experienced feeling shame and guilt, which in turn led to the experience of psychological distress, low mood, anxiety, and low self-esteem. Moreover, women reported feeling silenced which in turn affected their heterosexual relationships and their peer relationships by feeling social isolated. (4) A Way Forward: Women found changing narratives, as well as group and individual multidisciplinary approaches, helpful in managing vulvodynia. The findings of the review conclude that interventions at the individual level, as well as interventions aimed at equipping women to challenge social narratives, may be helpful for the psychological well-being of women with vulvodynia.

Vulvodynia Viewed From a Disease Prevention Framework: Insights From Patient Perspectives

“…Research shows that sufferers see an average of 5 physicians before receiving a diagnosis, 31 leading many to report feeling judged, dismissed, or disbelieved by HCPs. 9 , 10 , 32 , 33 , 34 , 35 This contributes to patients' self-doubt, frustration, despair, wavering confidence in the medical system, and their need to become advocates for their own care. 9 , 10 , 36 , 37 Particularly in regards to health concerns that predominantly affect ciswomen, some suggest that misogynistic ideology encourages HCPs to evaluate certain patients as hysterical, neurotic, or uptight 37 and to provide unhelpful advice.…”

Qualitative analysis of treatment needs in interstitial cystitis/bladder pain syndrome: Implications for intervention

“…This finding mirrors qualitative inquiries of vulvodynia where patients identified shame, guilt, communication difficulties, and relationship strain due to dyspareunia. 54,55 There are initial indications of self-management interventions improving IC/ BPS symptoms and quality of life. 15,51,53 Our study provides additional insight into specific elements of focus for psychosocial intervention.…”

Psychosocial factors associated with pain and sexual function in women with Vulvodynia: A systematic review

“…The most common subtype, 'Provoked Vestibulodynia (PVD)', refers to pain that is elicited when pressure is applied to the vulvar vestibule, representing 80% of cases of Vulvodynia (Wesselmann et al, 2014). To date, Vulvodynia represents the most common form of dyspareunia (Dunkley & Brotto, 2016), and spontaneous pain can occur during daily activities such as walking and sitting (Shallcross et al, 2018), significantly affecting women's quality of life, mental and physical health (Bornstein et al, 2019;Chalmers et al, 2017). The direct and indirect costs of Vulvodynia in the United States range from 31 to 72 billion dollars annually (Xie et al, 2012).…”