title: Long-Term Gynecological Outcomes in Women with Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency.
abstract: Background. Our knowledge on long-term outcome in CAH remains incomplete. Methods. In a prospective study (33 CAH patients, 33 age-matched controls), reproductive outcomes, self-rating of genital appearance and function, and sexuality were correlated to degree of initial virilisation, genotype, and surgery. Results. Patients had larger median clitoral lengths (10.0 mm [range 2-30] versus 3.5 [2-8], P < .001), shorter vaginal length (121 mm [100-155] versus 128 [112-153], P = .12), lower uterine volumes (29.1 ml [7.5-56.7] versus 47.4 [15.9-177.5], P = .009), and higher ovarian volumes (4.4 ml [1.3-10.8] versus 2.8 [0.6-10.8], P = .09) than controls. Satisfaction with genital appearance was lower and negatively correlated to degree of initial virilisation (r(s) = ≤-0.39, P ≤ .05). More patients had never had intercourse (P = .001), and age at 1st intercourse was higher (18 yrs versus 16 yrs, P = .02). Conclusion. Despite overall acceptable cosmetic results, reproductive outcomes were suboptimal, supporting that multidisciplinary teams should be involved in adult follow up of CAH patients.
authors.affiliation: University Department of Growth and Reproduction, GR-5064, Rigshospitalet, Blegdamsvej 9, DK-2100 Copenhagen, Denmark.
authors.forename: T H
authors.initials: TH
authors.lastname: Johannsen
authors.forename: C P L
authors.initials: CP
authors.lastname: Ripa
authors.forename: E
authors.initials: E
authors.lastname: Carlsen
authors.forename: J
authors.initials: J
authors.lastname: Starup
authors.forename: O H
authors.initials: OH
authors.lastname: Nielsen
authors.forename: M
authors.initials: M
authors.lastname: Schwartz
authors.forename: K T
authors.initials: KT
authors.lastname: Drzewiecki
authors.forename: E L
authors.initials: EL
authors.lastname: Mortensen
authors.forename: K M
authors.initials: KM
authors.lastname: Main