“Worse Than Disappointing”: Prediagnostic Health Care Challenges of Women With Inflammatory Vulvar Dermatoses

Abstract

The purpose of this study was to investigate challenges women face before inflammatory vulvar dermatosis diagnosis to guide interventions for improving time to diagnosis and health care experiences. Materials and Methods:The present analysis was part of a larger study exploring sexual health and quality of life of women with vulvar and nonvulvar inflammatory dermatoses, evaluated via a 20-minute web-based survey. One open-response item asked participants to "briefly describe any challenges you faced with regards to health care or health care providers in the time when you were seeking a diagnosis"; this item informed the present study. Eligible participants were women older than 18 years, living in the United States, with diagnosis of an inflammatory vulvar dermatosis persisting at least 1 month. Participants (n = 118) had a mean age of 46.55 ± 15.35 years, and 64% (n = 75) had lichen sclerosus.Results: Provider-based challenges consisted of insensitive communication and ascribing physical symptoms to mental health issues, self-harm, or other factors. System-based challenges included confusing referral networks, limited specialist access, and widespread lack of provider education. Personal challenges for participants seeking care included feelings of embarrassment and reduced health care efficacy. Challenges led to emotional response and impact for participants, characterized by negative (e.g., distrust in the medical system) or positive (e.g., self-advocacy efforts, strong social media communities) outcomes. Conclusions:Findings provide unique insights into the challenges women experience before inflammatory vulvar dermatosis diagnosis. This study creates new knowledge exploring the diagnostic journey accompanying inflammatory vulvar dermatoses and contributes practically to clinical and research needs of this understudied population.

Living with vulval lichen sclerosus: a qualitative interview study

“…A decade on from the research by Wehbe‐Alamah et al ., 17 our participants’ stories demonstrate that women continue to struggle to obtain a timely and accurate diagnosis of VLS. Being dismissed is a theme which echoes throughout the body of existing qualitative research on women’s experiences of VLS 20,23 . This results in women having to emotionally prepare for attending or even phoning their doctors’ surgery, if they anticipate resistance to accessing diagnosis or their treatment.…”

“…This encompassed several basic themes including silence, lack of validation and support, and feeling different. 22 In a survey study 23 exploring quality of life of women with vulval and nonvulval inflammatory dermatoses (64% with VLS), participants were asked to describe challenges they experienced when seeking a diagnosis. Four themes were developed: provider-based challenges including misattribution of symptoms and insensitive communication; system-based challenges incorporating provider education; personal challenges including reduced healthcare efficacy and embarrassment; and positive and negative emotional responses and impact.…”

“…Four themes were developed: provider-based challenges including misattribution of symptoms and insensitive communication; system-based challenges incorporating provider education; personal challenges including reduced healthcare efficacy and embarrassment; and positive and negative emotional responses and impact. 23 VLS remains an under-researched disorder. Further evidence is badly needed to identify how to best help women, ensuring their voices are heard.…”

Genital Self-Image, Sexual Function, and Quality of Life Among Individuals with Vulvar and Non-Vulvar Inflammatory Dermatoses

“…In people with VID, an aversion to genital examinations by healthcare providers could lead to significant delays in seeking care. Embarrassment or shame with healthcare provider interactions has been identified as a barrier to care in some women with VID and remains a concern for this population (Bentham et al, 2021 ; Rivera et al, 2022 ; Wehbe‐Alamah et al, 2012 ).…”

“…The relationship between mental health and vulvar disease is complex and frequently mismanaged. People with VID report that healthcare providers at times attribute their experience of vulvar symptoms to psychiatric conditions, leading to patient frustration, delays in care, and adverse healthcare experiences (Rivera et al, 2022 ). Clinical evaluation of people with confirmed or possible VID should include mental health screening in addition to—and never instead of—thorough physical examination and careful history of symptoms.…”