Exploring the health care experiences of women diagnosed with vulvodynia

Background: Although seeking diagnosis and treatment for chronic pain should be straightforward, this is often not the case for those living with vulvodynia, who often describe it as a battle, frequently involving misdiagnosis, dismissal, and gender-based discrimination.
Aim: This study explored the healthcare experiences of women living with vulvodynia in the United Kingdom.
Methods: As they are less explored in literature, experiences post-diagnosis and across varying healthcare settings were specifically considered. Interviews were conducted with six women, aged 21 to 30, to explore their experiences when seeking help for vulvodynia.
Outcomes: Through interpretative phenomenological analysis, five themes emerged: the impact of diagnosis, patients’ perception of healthcare, self-guidance and lack of direction, gender as a barrier to effective care, and a lack of consideration of psychological factors.
Results: Women often experienced difficulties before and after diagnosis, and many felt their pain was dismissed and ignored due to their gender. Pain management was felt to be prioritised by healthcare professionals over wellbeing and mental health.
Clinical Translation: There is a need for further exploration of experiences of gender-based discrimination of vulvodynia patients, healthcare professionals’ perceptions of their own capabilities in working with vulvodynia patients, and the impact of improving professionals’ training in working with these patients.
Strengths & Limitations: Healthcare experiences after diagnosis are rarely examined within literature, with studies predominantly focusing on experiences surrounding diagnosis, intimate relationships, and specific interventions. The present study provides an in-depth exploration of healthcare experiences through participants’ lived experiences and gives insight into an under-researched area. Women with negative experiences of healthcare may have been more likely to participate than those with positive experiences which may have resulted in their overrepresentation. Furthermore, participants were predominantly young, white, heterosexual women, and almost all had comorbidities, further limiting generalisability.
Conclusion: Findings should be used to inform healthcare professionals’ education and training to improve outcomes for those seeking care for vulvodynia.