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Endocrine Abstracts (2023) 90 RC4.6 | DOI: 10.1530/endoabs.90.RC4.6

ECE2023 Rapid Communications Rapid Communications 4: Reproductive and Developmental Endocrinology (6 abstracts)

Bone and sexual health in adult women with complete androgen insensivity syndrome: A single centre experience

Eriselda Profka 1 , Giulia Rodari 1 , Federico Giacchetti 1 , Claudia Giavoli 1,2 , Maura Arosio 1,2 & Giovanna Mantovani 1,2


1Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy; 2University of Milan, Department of Clinical Sciences and community Health, Milan, Italy


Background: Low bone mineral density (BMD) and reduced sexual satisfaction have been reported in complete androgen insensitivity syndrome (CAIS). Nevertheless, conclusive data on the prevalence and on the optimal management of these conditions are still lacking.

Aims: To assess bone and sexual health in adult women with CAIS with and without gonadectomy.

Methods: Single-centre, prospective study of 27 adult CAIS (age 35.2±8.7 years), 22 patients with gonadectomy (age 13.4±7.1 years) and 5 with intact gonads. All patients with gonadectomy were on hormonal replacement therapy (HRT) (median age of start 16 years, range 12.5-19.5 years). Two patients were on testosterone therapy while all the others on estradiol (8 transdermal and 12 on oral formulation). Adherence to HRT was assessed through self-reporting and it was intermittent in two patients. The primary outcome was the evaluation of bone health, as measured with dual-energy x-ray absorptiometry and morphometric vertebral fractures. Secondary outcomes were sexual function, as measured with the Female Sexual Function Index (FSFI) and Female Sexual Distress Scale-Revised (FSDS-R) and body uneasiness, as measured with the Body Uneasiness Test (BUT).

Results: in all patients, BMD Z-score was reduced at lumbar spine (LBMD-Z -1.66±0.88) and at the hip (THBMD-Z -0.4±0.8). In particular, LBMD-Z and THBMD-Z was −1.4±0.64 and 0.04±0.62 in patients with intact gonads and −1.7±0.9 and -0.5±0.8 in patients with gonadectomy, respectively. LBMD-Z was <-2 in 2 patients with intact gonads and in 8 patients with gonadectomy. No fractures were recorded in any patient. FSFI, FSDS-R and BUT tests were collected in 20 patients. Eleven patients (4 with intact gonads) showed a sexual dysfunction at FSFI (score<26,55). Interestingly, in the group with intact gonads, 3 of 4 patients with sexual dysfunction had testosterone levels below normal range. When considering FSDS-R, 12 patients (2 with intact gonads) showed a hypoactive sexual desire disorder (HSDD) (score>11). Similarly, 9 patients (2 with intact gonads) reported body uneasiness at BUT (Global Severity Index >1.2).

Conclusions: Our results confirm the reduction of BMD in CAIS with and without gonadectomy. Moreover, sexual dysfunction, HSDD and body uneasiness is common. Preservation of gonads not always guarantees optimal hormone levels and gonadectomy must be considered after spontaneous pubertal development. The lack of defined guidelines on the most appropriate management of CAIS, reinforces the need to perform further investigations, in order to establish an adequate treatment, thus guaranteeing an improvement quality of life and reducing the risk of complications.

Volume 90

25th European Congress of Endocrinology

Istanbul, Turkey
13 May 2023 - 16 May 2023

European Society of Endocrinology 

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