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Friday, 26 May 2017

Intersex patients 'routinely lied to by doctors'

Doctors in the UK routinely lied to patients with disorders of sex development known as intersex conditions, the BBC has found.
A leading paediatric consultant told BBC Radio 4 that withholding the truth of patients' diagnoses had been "widespread".
Jeanette, now 71, was operated on at the age of 16 to remove her hidden testes.
She discovered the truth only when she was 50.
Jeanette was born with complete androgen insensitivity (CAIS), a genetic disorder occurring in between one in 20,000 and one in 60,000 births.
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.
Jeanette was 12 when doctors told her mother that Jeanette would not develop like other girls or be able to have a baby.
Jeanette says: "I couldn't understand at that point why she [my mum] was crying and what was wrong with me.
"Then, at 14, I started realising that things were not right with me, as I never had periods or anything."
Two years later, aged 16, Jeanette was taken to hospital and operated on, still unaware of her diagnosis.
At that time, she was told nothing - just that she needed major surgery.
"I've got an 8in [20cm] scar right across my stomach. I was feeling perfectly healthy and I can remember sitting up in up in bed, thinking, 'What the hell am I doing here?'"
Surgeons had removed internal testes from Jeanette's body, but Jeanette didn't even know she had them and doctors didn't tell her why they had operated.
Life became very difficult for Jeanette.
At 28, she got married but found sex with her husband too painful. "I was in so much pain afterwards I couldn't walk.
"So my mother came with me to hospital and they told me, 'Go home, things will get better.'"
She left her partner two years later, saying she was too "frightened" to have another physical relationship.
She did not find out the truth about her medical history until she was 50, when saw the words "testicular feminisation", another term for CAIS, on the front her medical file by chance at an outpatient appointment.
She talked with her GP, who then gave her her medical records to read.
"I read my notes and that's when it said I had the womb the size of a matchstick and two fully grown testes, and I cried my eyes out."
Source By BBC.COM


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