The silent grief: psychosocial aspects of premature ovarian failure.

Objective: Premature ovarian failure in women under 40 years is uncommon, but not rare (1-3%), with up to 2.5% of adolescents affected. This study aims to investigate women's experiences of diagnosis, perception of cause, treatment, main concerns, long-term consequences and impact on self-esteem, sexual functioning and health-related quality of life.

Design: This was a cross-sectional study, using a single-group design, including quantitative and qualitative measures. Two hundred and twenty questionnaires were sent to women recruited from the databases of two London specialist multidisciplinary clinics and from a national premature menopause self-help website. The questionnaire included the Rosenberg's Self Esteem Questionnaire, SF 36 Health Survey (quality of life), the Sexual Personal Experiences Questionnaire and the Young Menopause Assessment questionnaire, following a pilot to assess acceptability and feasibility.

Results: The response rate was 62% in women aged 19-61 years. The majority of women felt that they had been offered inadequate information; 53% did not know the reason for their condition, 30% obtained a diagnosis within 6 months, and the diagnosis for 22% took up to 3 years. Fertility and bone health were main concerns, followed by emotional well-being. Libido and vaginal dryness were perceived as the main long-term effects by 79% of the women. The internet was the main source of information. The majority requested more information targeted to their age group and 49% requested psychological support, citing a negative impact on their self-esteem.

Conclusions: This study examined women's perceptions of premature ovarian failure, its impact and the services they received. The results can be used to inform service reconfiguration and improvement.