02 Junio 2017 11:18
Some people grow up with inexplicable scars. Then they reach adulthood and the news is broken to them: you had two genders and the doctor picked one for you.
'In those days the consensus in the medical profession was that the truth would not be disclosed to the patient… and the general advice was for parents not to disclose the true diagnoses to the children,' explains Ieuan Hughes, emeritus professor of paediatrics at the University of Cambridge and an expert in hormone disorders. Cover-ups were the norm and doctors routinely lied to patients born without a clearly defined gender, also known as intersex people.
And that is what happened to Jeannette who, at the age of 71, has opened up about her ordeal to help other people deal with the stigma of being intersex. At the age of 16 she was operated on to remove hidden testes that she didn't even know she had.
Her trial began when she was 12, and doctors told her mother that Jeanette would not develop like other girls. 'I couldn't understand at that point why she [my mum] was crying and what was wrong with me,' Jeanette told the BBC. 'Then, at 14, I started realising that things were not right with me, as I never had periods or anything.' Jeanette was told nothing about her condition, just that she needed major surgery.
Jeanette was operated on when she was 16 and left with a 8in scar. Life was difficult for her after that. She found sex very painful, which scared her off physical relationships for good. It wasn't until Jeanette was 50 that she discovered the truth when, by chance, she read the words 'testicular feminisation' – another term for Complete Androgen Insensitivity (CAIS) – on the front of her medical file.
A child born with CAIS is genetically male but their body does not respond to the hormone testosterone properly, so the external appearance of their genitals will look entirely female. It is just one of over 40 known kinds of congenital variations of sexual development disorders: an umbrella term that covers all those children who do fit into the obsolete sexual dimorphism.
Invisible children and adults. Conditions about which there is little or no awareness. Intersex people have only just been legislated for in the European legal system. In 2013, Germany led the way by allowing parents to omit the gender of a newborn on a birth certificate to enable the child to decide for him or herself in the future.
Photo: intersex flag
However, work still needs to be done in exploring the question of when to treat intersexuality with surgery. So far, only Malta has prohibited medical interventions without the patient's prior consent. In Spain, the Community of Madrid has also prohibited surgery from being carried out on infants unless they are at risk. In the UK, there is now much more emphasis on working with patients openly and honestly. Although Holly Greenbury, co-founder of Intersex UK, told BBC Radio 4 that some families were still feeling forced to make decisions over surgery in the UK, before children were of an age at which they could make an informed decision and consent themselves.
British Association of Paediatric Urologists president Stuart O'Toole said most patients were now managed within a team, with input from specialist surgeons and medics and psychologists. 'The parents of the child are involved at every stage. Irreversible surgery is rarely performed in infancy, and a gonad would be removed only if there was a credible risk of cancer.'
It looks like the days when doctors would lie to a patient and decide which sex he or she should be have come to an end. Will we soon be living in a future in which the patient's wishes finally prevail?