Intersex and VENUS Clinic
(Vaginal Enhancement in Unique Situations)
Anthony Balcom, MD, Assistant Professor, Pediatric Urology
While the terminology has changed, the emergency situation of a newborn with an indeterminate (or ambiguous) gender still exists and is a very stressful circumstance for the family. The current terminology for intersex and ambiguous genitalia is now “disorder of sexual differentiation.” This classification system was introduced in 2006 by the European Society of Pediatric Endocrinology and the Lawson Wilkins Pediatric Endocrine Society. Spearheaded by Pediatric Urology, a newly formed working group at Children’s Hospital of Wisconsin is dedicated to the evaluation and management of children (especially infants) with disorders of sexual differentiation. The working group includes representatives from Pediatric Urology, Endocrinology, Psychiatry, Psychology, Social Work, Ethics Committee, Pathology and Pediatric Radiology. This group of individuals meets to discuss children who have a disorder of sexual differentiation. The group carefully considers evaluation of the neonate or child, including a complete physical and biochemical evaluation and a targeted radiographic evaluation. Gender identity and assignment, surgical management, including masculinizing genitoplasty and feminizing genitoplasty, as well as future fertility issues for each patient are discussed, and a conference is held with the parents. Grandparents are also typically invited, and the families may choose to have a spiritual advisor involved. Our goal is to establish as precise a diagnosis of the disorders of sexual differentiation as possible to ensure appropriate treatment, and to address potential chronic medical, psychological and social issues that have lifelong consequences to help the patient and family through a stressful time. This will form the basis of a healthy long-term relationship with the family for years to come.
Another new program recently started by Pediatric Urology is the Vaginal Enhancement in Unique Situations, or VENUS Clinic for vaginal inadequacy. There are many different diagnoses that can result in vaginal inadequacy, such as Complete Androgen Insensitivity Syndrome, Mayer Rokitansky Kuster Hauser Syndrome and cloacal anomaly/exstrophy situations, to mention a few. There is also multidisciplinary representation in this clinic, including Pediatric Gynecology. These patients can present as neonates or as older adolescents. A targeted physical exam, biochemical evaluation, radiographic evaluation and counseling process are undertaken. Our goal is to treat patients with vaginal inadequacy in a very sensitive, individualized, age-appropriate, patient-directed manner. We offer the complete range of treatments including the no treatment/delayed treatment approach, nonsurgical treatments such as progressive pressure techniques, and surgically constructed/enhanced neo-vaginas that may be performed using laparoscopic techniques. The patients treated in the newly formed Disorders of Sexual Differentiation Clinic will benefit from the multidisciplinary approach to disorder of sexual differentiation, and ultimately may also need the expertise of the new VENUS Clinic.