Home' Trinidad and Tobago Guardian : May 26th 2017 Contents A24 body & soul
guardian.co.tt Friday, May 26, 2017
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 "wide-
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 an-
drogen 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 per-
fectly healthy and I can remember sit-
ting up in up in bed, thinking, 'What
the hell am I doing here?'"
Surgeons had removed internal tes-
tes from Jeanette's body, but Jeanette
didn't even know she had them and
doctors didn't tell her why they had
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 fem-
, 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 match-
stick and two fully grown testes, and I
cried my eyes out."
Ieuan Hughes, emeritus professor of
paediatrics at the University of Cam-
bridge and an expert in hormone disor-
ders, says cover-ups used to be routine
in cases such as this.
"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 explanation for why the per-
son could not have periods, could not
have children---a story was spun that
the ovaries had not developed properly
and were at risk of developing cancer,
therefore they needed to be removed."
He says a number of women who had
been told "a pack of lies" by the medical
profession have since contacted the An-
drogen Insensitivity Syndrome Support
Group (AISSG), with which he works.
"Apparently there had been a couple
of examples where patients had been
so upset they had taken their own lives
A AISSG representative told the BBC
the practice of routinely withholding
the truth from patients didn't stop
British Association of Paediatric
Urologists president Stuart O'Toole
said most patients were now man-
aged within a team, with input from
specialist surgeons and medics and
"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."
Holly Greenbury, who co-founded
Intersex UK, a campaign group founded
to end stigma around intersex variations
and to fight for equality and protection
of intersex people, 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.
"What this highlights is that there
is a break down of communication, a
lack of education and, currently, the UK
is not following internal human rights
law and ensuring that our legislation
protects the future wellbeing and the
bodily autonomy of infants and young
Malta became the first country to
outlaw non-consensual medical inter-
ventions on intersex, in 2015. Intersex
UK is one of several British organisa-
tions now lobbying for corrective sur-
gery to be outlawed in the UK. (BBC)
• There are more than 40 congenital
variations of disorders of sex devel-
• Intersex is an umbrella term used to
describe people born with sex charac-
teristics (including genitals, gonads and
chromosome patterns) that do not fit
into the typical notions of female or
• Some traits are visible at birth, others
not until puberty and some variations
in chromosomes may not be physically
apparent at all
• Worldwide, up to 1.7 per cent of peo-
ple have intersex traits, according to
the Office of the United Nations High
Commissioner of Human rights.
Jeanette was 50 when she discovered the truth about her own body. Her doctors lied to her. PHOTO: BBC
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