We did not have exactly the same problem, but the urologist that sees my daughter suspected she had some problem in one of her kidneys, as an earlier echography showed that something was not right (I do not know what the proper word is in English for this, but in Spanish they call it “dilatación pielocalciaria”). He said that sometimes in female CAH patients, when the urethra and the vagina are united, the urine goes back to one kidney (or to both of them).  My daughter underwent a cystoscopy—a procedure to examine the bladder and urethra with an endoscope-- which in fact showed that there was some reflux of urine. We had agreed not to perform a surgery on my daughter until she can understand its implications.  However, he explained to us that when urine goes back to the kidneys (as opposed to regular UTIs, which affect the “lower” urinary tract only) an infection may have long term effects on her kidneys that could be irreversible. He suggested a minimally invasive surgical procedure intended to separate the vagina and urethra only and to facilitate the discharge of urine. She had this surgery in March (when she turned one year old) and it did eliminate this reflux problem. My suggestion would be to see an urologist who is used to deal with CAH patients and to ask him or her if your daughter could be having the same thing that affected my daughter, just to be on the safe side.

Good luck!

 

Ro