Polycystic ovary syndrome in adolescent girls: Fertility concerns and sexual behavior

BACKGROUND: Polycystic Ovary Syndrome (PCOS) affects 5-10% of women of reproductive age. Common findings in affected women include irregular menstrual cycles, hirsutism, acne, obesity, and infertility. Adolescent girls with PCOS may be particularly affected because they are at the height of identity development, body awareness, and sexual experimentation. A previous study of adolescent girls with PCOS in Singapore found that they were highly concerned about attractiveness to the opposite sex and possible infertility, and none were sexually active. No research to date has examined fertility concerns and sexual behavior in girls with PCOS in the United States. The purpose of this study was to examine fertility concerns and sexual behaviors among adolescent girls with PCOS as compared to healthy adolescent girls. METHODS: A group of ethnically diverse adolescent girls with PCOS (n = 88) and without (n = 168), aged 13-22 years were recruited from an urban-based adolescent program to participate in a quality of life study. Participants in both groups were asked to complete general health history questionnaires that included items regarding sexual activity, contraception, worries about ability to have children, and perceived severity of illness. Physicians screened patients for chronic medical illnesses and provided information on Ferriman Gallwey scores as a measure of hirsutism, global acne scores, height, and weight for patients in both groups. Findings were evaluated using Mann-Whitney U, chi-square, and logistic regression with SPSS, version 10.0. RESULTS: Mean (± s.d.) age of participants was 17.0 ± 2.0 years (PCOS) and 16.9 ± 2.4 years (comparisons). Mean age at diagnosis of PCOS: 15.2 ± 1.7 years. There were no differences between PCOS and comparison groups regarding race/ethnicity, age, or insurance status. Among sexually active girls, the mean age at initiation of sexual intercourse was not significantly different between PCOS participants (15.6 ± 1.5 years) and comparisons (15.6 ± 1.9 years), (Z = −.057), p = 0.955). Comparison subjects, however, were more likely to have had sexual intercourse than PCOS participants (55% vs. 36%), controlling for age and race/ethnicity (odds ratio [OR]: 3.0, 95% confidence interval [CI]: 1.6,5.5; p = 0.001). In the qualitative portion of the general health history questionnaire, 20% of adolescent girls with PCOS thought that fertility concerns were a part of how they viewed PCOS and its impact on their lives. Furthermore, girls with PCOS were more likely to be worried about their ability to have children in the future than comparisons (68% vs. 40%) controlling for age (OR: 3.3, CI: 1.9, 5.8; p < 0.001). Among patients with PCOS, severity of disease and worry about ability to have children in the future were not associated with odds of being sexually active. CONCLUSION: This study demonstrates that adolescent girls in the United States with PCOS are more concerned about fertility than their peers. Unlike the previous study, more than a third of the adolescents with PCOS in this clinical practice are sexually active. This underscores the importance of ongoing counseling on fertility issues, contraception and STD prevention as a part of treatment for adolescent girls with PCOS.