Re: Questions to ask the surgeon before we make a date
11/5/01 10:46 PM

For your daughter's sake...

Please ask the surgeon how many of these operations he (because 90% of urologists are men) has performed.

Please ask if this protocol of early genital surgery is entirely agreed upon by his peers, or whether there is dissention/new thoughts on how/when/if surgeries are performed.

Does he have the most recent research regarding clitoral nerve endings? (which don't {as previously believed}  end at the base of the clitoris, but rather deep inside the body)

Ask to review his planned procedures. Be aware that some surgical urologists have their own preconceived notions of how big a clitoris should be, and that there is no such thing as an emergency clitorectomy. Get his written ASSURANCE that your daughter's clitoris will NOT be removed during surgery.

Is he certain that there will be no nerve damage caused by this surgery?

Would he consider reducing the size of a baby boy's penis if it appeared too large? (because, really, what's the difference?)

If he suggests vaginoplasty during this first surgery, at what age(s) does he expect it will have to be repeated?

Does recommended follow up treatment include the practice of using dialators to keep your daughter's vaginal canal from closing? If not, exactly how will it stay open?

Ask your endocrinologist or pediatric anesthesiologist about the inherent risks of CAH infants, adrenal stress and anesthesia.

Please ask yourself these questions:

Does your daughter appear to be aware or distressed by her unique genitals?

She most certainly will BECOME aware of them once her legs are spread numerous times. Her "privates" will never seem private to her when grownups are always asking to "take a quick peek".

Whatever you ask... MAKE SURE YOU GET ANSWERS that are understandable to you, not evasive medical meanderings. This is a complicated medical, psychological and social issue. Read all that you can (try GOOGLE.com as a search engine) and be the most active and knowledgeable advocate you can possibly be.

JanetG
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