Abstract Background Vulvar lichen sclerosus (VLS) is a chronic remitting condition that affects the genital skin of females of all ages. Although qualitative studies have been conducted that have focused on women with VLS in mid-life or beyond, less is known about the experiences of individuals with VLS from childhood or adolescence onward. Objectives To gain an understanding of the experiences of women with a history of juvenile VLS (JVLS) with regard to the impact of the disease on their personal lives, and their experiences and needs regarding care and guidance. Methods A qualitative study was conducted consisting of 27 in-depth face-to-face interviews with adult women with a histologically confirmed history of JVLS, striving for maximum variation and saturation. Interviews were audio recorded and transcribed verbatim. A thorough thematic content analysis was performed. Results Three main themes were identified. Theme 1 was named ‘Varying impact of living with JVLS’: women experienced diverse emotional and physical impacts, from shame and denial to complete acceptance, from restrictions in daily functioning to no limitations; they felt hindered by their own lack of knowledge about JVLS and generally expressed positivity in sharing their experiences with people close to them. Theme 2 was entitled ‘Finding one’s way in care and guidance’: while navigating care and guidance, women often felt hindered by knowledge gaps among healthcare professionals (HCPs), lack of continuity in care and guidance, lack of life phase-adjusted and future-oriented information provision, inadequate guidance around life events and insufficient monitoring of determinants of treatment adherence. Theme 3 was named ‘Need for patient-tailored care involving appropriate and compassionate care and guidance’: patients stressed the need for age-appropriate and life phase-adjusted information, guidance around life events and compassionate contact with knowledgeable HCPs aware of the determinants of treatment adherence and influencing factors. Conclusions Age-appropriate, life phase-adjusted, individually tailored care for women diagnosed with VLS in childhood or adolescence is needed. Care and guidance from childhood onward should encompass a standard of care adapted to the individual as their needs change over time. This involves taking interpersonal differences into account, including differences in support network and coping strategies. These findings demonstrate the need to improve awareness and knowledge about JVLS/VLS among HCPs, especially primary care providers, and among the general public.
