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Purpose: Vulvodynia is considered to be a common cause of sexual pain in women of reproductive age and has a significant negative impact on their psycho-sexual health and quality of life. This study aimed to investigate the felt and known experience of living with provoked vulvodynia (PVD) in a group of women in Sweden and to explore the support, information, and treatment perceived to be important based on experienced symptoms.

Methods: Ten women recruited by staff, from the vulva clinic at two hospitals in Sweden, participated in individual interviews. The results were analysed using qualitative content analysis.

Results: The analysis resulted in the overarching theme ‘The women’s dilemmas regarding a sustainable daily life’. This theme is based on the difficulties the women experienced in being listened to and getting information and treatment to have the quality of life they want. Most important was understanding their own body, understanding the purpose of the treatment, and getting manual guidance to break the fear of pain.

Conclusion: The results give a detailed picture of women’s experiences of PVD and delineate components of treatment perceived as important. This interview study is significant for healthcare professionals involved as the knowledge can contribute to faster diagnosis and better patient-specific treatment. The study may also guide future healthcare-related political decisions and the patient flow for these patients.