Evidence for prolonged and unique amenorrhea-related symptoms in women with premature ovarian failure/primary ovarian insufficiency

OBJECTIVE: This study aims to describe premature ovarian failure (POF)/primary ovarian insufficiency (POI) symptoms experienced by women from a non-clinic-based sample of members of a POF/POI-specific support group. METHODS: Two hundred ninety women were surveyed for 6 weeks. The survey included demographics, health history, and a validated menopause-related quality-of-life questionnaire. Symptom prevalence was described. RESULTS: One hundred sixty (55%) women aged 18 to 63 years (mean [SD], 39.3 [7.3] y) responded. Age at diagnosis ranged from 10 to 39 years (median [interquartile range], 30 [24-35] y). Most respondents were white (87%), college educated (76%), and employed full time (61%). Among women reporting a history of depression (43%), 26% reported that depression occurred more than 5 years before POF/POI diagnosis. Of 29 commonly assessed menopausal symptoms, women reported a mean (SD) of 14.7 (7.4) symptoms; symptom scores did not substantially decrease with time since diagnosis, and relationship with age at diagnosis was negligible. Other common symptoms included mood swings and mental fog (>75%); hair loss, dry eyes, cold intolerance, and joint clicking (>50%); tingling in limbs and low blood pressure (∼33%); hypothyroidism (17%); hypoglycemia (16%); and gluten allergies (10%). Ninety unique symptoms were written in as free text. CONCLUSIONS: Symptom checklists created for age-appropriate postmenopausal women do not adequately capture the scope of symptoms observed in this sample. Menopausal symptoms do not seem to diminish across time in women with POF/POI, in contrast to women with age-appropriate menopause. Depression is very commonly reported in this sample, with some women clearly experiencing depression well before their diagnosis of POF/POI. Hypothyroidism in this sample is more than three times the population mean.