I fully support you trying to get Clitoral surgery stopped without informed consent. I work with many women in UK as Adult support Co-ordinator for both CAHG and Founder of AHN that have had surgery and the outcomes have rarely been good. Surgery has hardly changed in 30+ years apart from Clitorectomy no longer being performed in most countries so please don't be afraid to stand up and shout to stop it. The Clitoris is the most innervated part of the body and is highly susceptable to damage from surgery. I am currently working on the Human Rights Issues of this to put forward to UK government and medical establishments. I am also working on preparing a booklet on surgery and dilation with various surgeons and psychologists to show both the negative and positive sides of surgery. Parents considering that this surgery does no harm are looking through rose tinted glasses, yes it may be upsetting and if the child but the child should still have a say as it will effect her whole life. It is just as if not more psychologically upsetting to have surgery than to not have it. A lot  having surgery is down to socialogical (parents have difficulty coping, society, Dr's cannot cope with different looking children) rather than real medical need, yes vaginal surgery is often required to prevent complications and allow sexual intercourse but clitoral surgery should be upto the girl herself. If children grow up with good psychological support from medics and parents then  they will be able to make their own choices, fine if they want surgery then knowing all the consequences but to mutilate just to look semi normal is barbaric. Sensation is always damaged to some extent however careful a surgeon is. Most of  this surgery was brought about by the research of John Money and many surgeons even today work by his ideas that IS can be manipulated into fitting in standard A or B boxes this has done a lot of damage to IS and CAH people over the years. If you think my views are very strong I have CAH (32 years old) and have been through this surgery plus know over 80 others that have and it is soul destroying.

Melissa Cull

CAHG Adult Support Co-ordinator & Adrenal Hyperplasia Network Founder.