Session: MON 586-595-Reproductive Axis Determination, Development & Transgender Medicine
Poster Board MON-589
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
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