Reproductive congenital anomalies: identifying paths to care within student-run free clinics

Abstract

Reproductive system congenital anomalies can have debilitating impacts on patient sexual function and reproductive capacity. We present the experience of a 26 year-old phenotypic female patient who identified as female with primary amenorrhea in the student-run free clinic (SRFC) setting. Following clinical evaluation, bloodwork noted an elevated testosterone level. Pelvic ultrasound demonstrated intact bilateral upper genitourinary tracts, bilateral adnexal masses without follicles, with absence of uterus, cervix and upper vagina. Subsequent pelvic magnetic resonance imaging confirmed these findings. Karyotype testing resulted 46XY, confirming androgen insensitivity syndrome. Urologic consultation was obtained, with plans for subsequent referral to a regional SRFC associated with a multi-disciplinary team specializing in reproductive tract anomalies. Unfortunately, despite approvals for charity care and extensive care coordination between the patient and our SRFC, the patient ultimately was lost to follow-up. Despite this suboptimal outcome, this experience provided valuable exposure to rethink how both our SRFCs and others can evolve operations into effective care systems for similar patients in the future. Lessons accrued here provided opportunities to reflect on how to develop a standardized referral and operational framework generalizable to other SRFCs who may care for similar patients.