Satisfaction with Hormone Replacement Therapy (HRT) and Vaginal Function in Orchiectomized Women with Complete Androgen Insensitivity Syndrome (CAIS)

Program: Abstracts - Orals, Featured Poster Presentations, and Posters
Session: MON 586-595-Reproductive Axis Determination, Development & Transgender Medicine
Basic/Clinical
Monday, June 17, 2013: 1:45 PM-3:45 PM
Expo Halls ABC (Moscone Center)

Poster Board MON-589
Erica A Eugster1, Julia R Heiman2, Kristina Bryk3 and Charmian A Quigley*1
1Indiana University School of Medicine, Indianapolis, IN, 2Indiana University, Bloomington, IN, 3The Pennsylvania State University, University Park, PA
Background: Women with complete androgen insensitivity syndrome (CAIS) have 46,XY karyotype and testes, a blind-ending, sometimes shortened vagina, but otherwise normal female external genitalia and gender identity. Standard of care has included routine orchiectomy and post-pubertal hormone-replacement therapy (HRT).  However, little information regarding perceived physical and emotional changes following orchiectomy in women with CAIS is available. Similarly, data regarding sexual function and satisfaction with HRT are limited and inconsistent. The objective of this analysis was to characterize history, clinical management and self-reported satisfaction with HRT and vaginal function in a cohort of orchiectomized women with CAIS.

Methods: Questionnaires (mainly multiple-choice) regarding demographics and treatment history were completed by women recruited from a patient support group*. Inclusion criteria for this analysis were CAIS and history of orchiectomy. Because of the qualitative and exploratory nature of the study, data are provided as descriptive summaries, without inference testing.

Results: Median age of 30 participants was 49.4 years (23.6-76.4) and 19 (63%) were married or cohabiting (17 with men). Fifteen women (50%) responded “Yes” to the question “Do you consider yourself intersexed?”. Most women (77%) were diagnosed during teen or adult years, 60% due to amenorrhea. Orchiectomy was performed during childhood or early teens in 13 (43%) and after puberty in 17 (57%). Changes reported following post-pubertal orchiectomy included weight gain (41%); withdrawal, moodiness or depression (35%) and reduced libido (47%). All women had received HRT consisting of estrogen alone in 24 (80%; oral 18, transdermal 6) and in combination with testosterone in 4. Satisfaction with HRT (5-point Likert scale) was high, being ≥4 in 15/21 women (71%) whereas incomplete satisfaction with vaginal function (≤4) was noted in 22/28 (79%).  Vaginal size was rated as "smaller than average" in 22/30 (73%); 2 women who had undergone skin graft vaginoplasty (age 28, 36) rated satisfaction as 3. Nineteen women cited specific reasons for dissatisfaction with vaginal function; the most common were difficult or painful intercourse (15/27 responses, 56%) and inadequate lubrication (9/27 responses, 33%).

Conclusions: In this cohort of predominantly heterosexual women with CAIS, 41% reported weight gain and almost half reported reduced libido following post-pubertal orchiectomy. Although satisfaction with standard HRT was high, most women reported incomplete satisfaction with vaginal function. Whether these results can be generalized to women outside this support group is unknown. More research is needed to identify optimal management strategies of importance to women with CAIS.

*Androgen Insensitivity Syndrome - Disorders of Sex Development Support Group of the USA (www.aisdsd.org)

Nothing to Disclose: EAE, JRH, KB, CAQ

*Please take note of The Endocrine Society's News Embargo Policy at http://www.endo-society.org/endo2013/media.cfm

Sources of Research Support: Partial support from National Institutes of Health grant HD044398; partial support from independent sources.