Living with premature ovarian insufficiency: A thematic analysis of women's quality-of-life experiences

Objectives:
Quality-of-life research in premature ovarian insufficiency is limited by the under-representation of women aged ≤25 and the lack of attention to how age at diagnosis shapes outcomes. This study addresses these gaps by employing recruitment strategies to increase participation of younger women, while exploring age at diagnosis as a key influence on their experiences.

Study design:
A qualitative design was employed using an online open-ended questionnaire distributed through social media support groups. Data was analysed using thematic analysis.

Results:
Participants were 191 women aged 20–56 years from three English-speaking countries. Women described debilitating symptoms affecting sleep, cognition, mood, sexual functioning and relationships, alongside treatment-related burdens that disrupted education and employment. Difficulties accessing timely diagnosis and care were reported, citing provider knowledge gaps and limited adolescent-focused diagnostic expertise. A number of women disclosed a history of suicidal ideation, with some attributing it to untreated hormone-related symptoms and others to existential loss related to infertility and disrupted life trajectories. Age at onset shaped identity disruption; adolescence-onset was associated with developmental stalling. Women approaching midlife described a ‘care cliff’ where they felt abandoned by services. Across groups, interactions with healthcare providers were central to adjustment and long-term health.

Conclusions:
Reports of suicidal ideation highlighted the need for both optimised hormonal treatment and psychological support. Participants reported that many clinicians were inadequately prepared to manage the condition. Provider education in premature ovarian insufficiency is essential, particularly to improve timely adolescent diagnosis and prevent irreversible permanent developmental impacts.