To Laura:To true. We were sent to both at different times. It was the urologists who eventually helped and knew how to take action. In the final surgery the Urologist was assisted by a Gynocologist for my daughter. They may have benefited by having a endo present.
Though endocrinologists are the doctors we must see to manage the adrenal dysfunction they do not always know who they should send CAH patients to when they need to address the other issues caused by CAH. It is important to understand that we are only a small fraction of their career and they spend most of their time treating diabetic and other endocrine disorders. If you keep this knowledge as part of your understanding of your doctor it helps you take more responsibility for checking their advice. I would be interested to know if anyone has a doctor that treats mostly CAH patients or just adrenal patients somewhere in (or even out of) the US.