Diagnostic criteria Mayer-Rokitansky Syndrome (MRKH) Congenital Adrenal Hyperplasia (CAH) Androgen Insensitivity Syndrome: Complete and partial (AIS; CAIS) Gonadol Dysgenesis and Turner’s Syndrome Premature Ovarian failure Vaginal tissue abnormalities i.e. graft vs host disease Didelphus uterus and other uro-genital septum abnormalities Uro-genital structural abnormalities from S.A & FGC abnormalities
Paediatric & Adult gynaecologists Lead consultants: Valeria Ivanova; Anna Bashford; Paddy Moore MRKH & 1:10 urethral displacement, Shear's vaginoplasty all Mullerian anormalies: i.e. Didelphus uterus or partial endometrial or uterine tissue other uro-genital differences that require reconstructive surgery and medical treatment i.e. vaginal scarring Support endocrinology with laparoscopic diagnosis, EUA, gonad removal, and any surgery required by CAH and AIS young women etc.
Endocrinology Lead consultants: Stella Milsom & Megan Ogilive Congenital Adrenal Hyperplasia (CAH) Partial and Complete Androgen Insensitivity Syndrome (AIS:CAIS) Premature ovarian shut down Turner’s and Gonadol dysgenesis All other metabolic and karotype differences that impact on fertility and sexual functioning, gender orientation. Support colleagues with HRT advise Currently our lead researchers/publishers.
Physiotherapy: Jillian Wood Major role in vaginal construction through dilation Provides a pelvic floor assessment to assist diagnosis and treatment plans Reversing hypertonic pelvic muscles and pain syndromes from past treatment, historical S.A., circumcision MRKH women with urethral differences, continence and hypertonic pelvic floors/pain problems Associated urinary & bowel problems Prepares adolescents for Internal exams
Clinical Psychologist (Prue) Works within a Critical Health theoretical paradigm Facilitates treatment outcomes by identifying individual’s subjective desires that may not fit within cultural or medical normative practises Where subjective desire is co-constituted through the intersection of our physical bodies, cultural training and available material resources. Example: The idea of being ‘intersex’ has been formed through advocacy groups and the shift in medical treatment protocol’s, which themselves are both material and cultural resources
Psychology assumptions: Therefore we cannot assess our patients future needs through either medical or cultural theoretical models alone This group of patients have very specific competing desires i.e. such as wanting to be ‘normal’ and have ‘sex’ like their friends but have different corporeal bodies which are not necessarily ready to structurally change to fit cultural norms Because subjective desire is co-constituted through the intersection of unstable bodies within unstable cultures, sexual preferences and gender orientation are not always stable.
Psychology Assessment necessary for treatment decisions Physical & emotional safety Cognitive and emotional development Interdependent and independent decision-making Understands and is adjusting to diagnosis Can tolerate the unexpected and understands medical limitations in that we cannot predict every treatment outcome Can identify current gender orientation, sexual readiness and preferences Maintains family, friendship relationships and avoids social isolation Have a critical analysis of medical and cultural norms and can negotiate their own treatment preferences within our clinic Corporeal readiness for dilation necessary for vaginal construction
Aims for national network (FPAMN) Equal and standardize access within NZ Access to a corporeal form (where medically & financially possible) that meets patients preferences Provide a seamless & consistent transfer from paediatric services To audit our services fit with current social/medical ethics and does not marginalize sexual/cultural differences Succession planning to maintain expertise within NZ
6-12 monthly goals for FPAMN network (if funded) To increase from our current 188-240 appointments per year To appoint a co-ordinator To run weekly clinics within GOP National Women’s To develop strong network ties and training throughout NZ To provide virtual consultations throughout NZ To formulate a website and patient information pamphlets