Examining the Prevalence of Misdiagnosis among Women with PCOS (Polycystic Ovary Syndrome)

Background: Polycystic Ovary Syndrome (PCOS) is one of the most common endocrine disorders, effecting 1 in 15 women of childbearing age. Symptoms of this syndrome usually present during the onset of puberty and are often mistaken for other chronic illnesses. Limited research on barriers to early diagnosis and an accurate diagnosis exists. Objectives: To assess the occurrence of misdiagnosis among women with PCOS and processes by which they are diagnosed during adolescent years (10-19) versus post adolescent years (≥20). Methods: A cross sectional study was conducted using a ten item online survey with four open-ended questions via support groups and discussion boards of women living with PCOS. Results: Preliminary data show that of the 179 women who completed the survey, the average age of diagnosis was 25.2 (range 13-47). Forty-six percent of women saw one to two doctors before being accurately diagnosed while other women saw over six doctors before correct diagnosis. Fifty-three percent (n=96) were diagnosed by a Gynecologist while 15% (N=28) were diagnosed by an Endocrinologist. Although all women who took the survey experienced symptoms, more women were diagnosed during post adolescent (78.9%) then during adolescent years (21.1%) and 81% were misdiagnosed as solely having metabolic /reproductive disorders and/or obesity problems. Conclusion: Examining the processes of how women are diagnosed earlier with PCOS compared to women with later diagnosis can help researchers and health educators learn teaching tools or information to encourage women to inquiry about PCOS.