Premature Ovarian Failure/Primary Ovarian Insufficiency: Not Your Mother's Menopause

Program: Abstracts - Orals, Featured Poster Presentations, and Posters
Session: SUN 554-573-Ovarian & Uterine Function I
Sunday, June 16, 2013: 1:45 PM-3:45 PM
Expo Halls ABC (Moscone Center)

Poster Board SUN-565
Amanda Ashleigh Allshouse*1 and Amy Semple2
1University of Colorado Denver Colorado School of Public Health, Aurora, CO, 2International Premature Ovarian Failure Association
Background: Few data describe the symptom experience of women with premature ovarian failure/primary ovarian insufficiency (POF/POI).

Purpose: To describe POF/POI symptoms within a non-clinic-based sample of women subscribing to the International Premature Ovarian Failure Association (IPOFA) website.

Methods: 290 women were surveyed via the IPOFA list serve over 6-weeks. The survey included demographics, health history, the Menopause-specific Quality of Life Questionnaire (MenQOL), ten additional symptoms (reviewed by women with POF/POI for face validity), and free-text for comments.  Women providing a date of birth and age at diagnosis < 40 were included in all analyses. Categorical (frequency, %) and continuous (with mean +/-SD, or median and IQR) variables were summarized appropriately. Pearson correlation of symptom count with MenQOL score was assessed.

Results: 160 women ages 18-63 (mean age 39.3 [SD 7.3]) were included (55% response). Age at diagnosis ranged from 10-39, median 30 (IQR: 24-35). Most respondents were white, had at least a bachelors degree and were employed full time. 43% of the respondents reported a history of depression, 25% of whose episode occurred more than 5 years before their POF/POI diagnosis. Women reported a mean of 14.7 (SD 7.4) out of 29 MenQOL symptoms; the correlation of each of 4 MenQOL domain scores and time since diagnosis, current age and age at diagnosis was weak (all ρ <|0.25|). Other common symptoms included mood swings and mental fog (>75%); hair loss, dry eyes, cold intolerance and joint clicking (>50%), followed by tingling in limbs and low blood pressure (app 33%), hypothyroidism (17%), hypoglycemia (16%) and gluten allergies (10%). 90 unique symptoms were written in an “other symptoms” field; 58% included a personal story, 27% described HRT experience and 18% gave questionnaire feedback.

Conclusions: Symptom checklists created for age-appropriately menopausal women do not adequately capture the scope of symptoms we observed in this sample. Menopausal symptoms do not appear to diminish over time in women with POF/POI, in contrast to women with age-appropriate menopause. The relationship between depression and POF/POI may be bidirectional, with some women clearly experiencing depression well before their diagnosis. Hypothyroidism in our sample is >3x the national mean. Mood, symptom and fertility questions specific for women with POF/POI are needed.

Nothing to Disclose: AAA, AS

*Please take note of The Endocrine Society's News Embargo Policy at

Sources of Research Support: The International Premature Ovarian Failure Association (IPOFA) actively participated via intellectual contribution and in making the fielding of the survey feasible. The International Premature Ovarian Failure Association, Inc. (IPOFA) is a nonprofit, 501(c)3, international organization whose mission is to provide community, support and information to women with Premature Ovarian Failure (POF) and their loved ones; to increase public awareness and understanding of POF; and to work with health care professionals to better understand this condition.