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The Worst Of Both Worlds |
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The Sunday Times Being born of uncertain gender is the last
sexual taboo. But why is the truth about "intersex" so
often kept from the patients themselves? Christine Toomey
reports
How would you feel if you'd grown up
thinking you were a girl and discovered at 20 that,
genetically, you were a man? Or if, as a girl of 18, you
found your parents gave you a boy's name when you were born
because doctors were confused about your gender? Imagine
you are a happily married man of 29, whose only problem is
that your wife is failing to conceive, and that tests
reveal the problem lies with you your genes are 100%
female. Or imagine you discover your parents had been
advised by doctors never to tell you there had been doubts
about your gender, or that surgeons operated on you and did
not tell you the real reason for the surgery? Would you
feel sad, angry, confused?
This is the story of men, women and
children who face such problems. They were born with a
medical condition called intersex. It is not as unusual as
you might suppose, and according to some medical experts is
becoming more common.
The large brown envelope that made sense
of Melissa's troubled past arrived in the post shortly
after her 18th birthday. Melissa took the package to the
privacy of her bedroom before breaking the seal on
information she hoped would explain the feelings of shame
and secrecy that had dominated her childhood and the
reasons for the repeated gynecological surgery she had
endured. She was shocked and angered by what she read.
As Melissa was growing up, she had been
told that she suffered from a rare metabolic disorder that
caused her body to lose excessive amounts of salt and led
to her being placed on medication she would need for the
rest of her life.
She knew she had been a small, sickly baby
who had not been expected to survive. She knew the
condition she was born with was called congenital adrenal
hyperplasia (CAH). What she was not told, but discovered
from the information sent to her that day, was that CAH is
an "intersex" condition. She had been born of mixed gender,
with ambiguous-looking genitalia, neither wholly female nor
male.
"I was told as I was growing up that
something was 'not quite right down there'. But I was also
told not to ask too many questions. I thought it must be
something horrible," Melissa, now 33, recalls. "My mother
just told me that I should always use a cubicle to change
at school and that nobody but a doctor was ever allowed to
touch me."
When Melissa confronted her mother, and
asked her why she had never been told the truth, "She said
she thought the truth would upset me," says Melissa. "She
told me for the first time that doctors had thought I was a
boy when I was born, and that she and my father had named
me Nicholas." But when doctors pumped dye through her
genital tract when she was three weeks old, they discovered
Melissa had a womb and ovaries. "My parents were told I was
a girl after all, but that I would need surgery to
'normalise' things. I was devastated. Not that I was
intersex, but that I had been lied to."
After requesting that her medical records
be released to her, Melissa discovered that the operations
she had undergone as a baby, and later at the ages of 4, 12
and 14, consisted of a complete removal of the clitoris
hers was considered too large. She also underwent extensive
reconstruction of her vagina. "The outcome," she says, "was
a mess."
Anna was also never told the truth about
her condition, or the real reason she underwent surgery at
the age of 20. After seeking advice from her doctor about
her failure to menstruate, Anna was sent to a London
hospital for examination, where she was told she had lumps
in her abdomen that needed to be removed. After surgery,
she was prescribed a high dosage of the female hormone
oestrogen and discharged with little follow-up.
"I felt confused, like something was very
wrong. But I didn't understand what was happening," says
Anna, now 44. "When I looked through some medical notes
that were left by my bed in hospital, I saw someone had
written, 'She is not aware of her condition.' When I asked
my mother what that meant, she told me never to ask the
doctors about it."
In the years that followed, Anna tried to
find out more about what had happened to her in hospital.
Her mother gave her "a few snippets of information to go
on," she says, almost casually, such as the fact that she
was born with XY chromosomes, which meant that genetically
she had been born male, not female. It was then, she says,
that her childhood began to make sense. Anna remembers
quite clearly at school feeling she did not belong with the
other girls. "I looked like a girl. But I knew I was a boy.
"I always played with the boys. As a
teenager I fell in love with girls. But I didn't become
sexually active."
What Anna slowly discovered in medical
journals was that she had a rare genetic disorder called
androgen insensitivity syndrome (AIS), also classed as an
intersex condition. This meant that although externally she
looked like a girl, she had no womb or ovaries, her vagina
was undeveloped, and her body produced high levels of
testosterone.
The lumps that doctors removed when she
was 20 were undescended testes. "Because they kept what
they were doing secret, I had no way of knowing what a huge
impact removing this source of testosterone would have on
my psyche, no way of objecting to it," says Anna.
"If I had been 100% male, they would never
have got away with it. But if you are mixed gender you are
treated appallingly, as if you have no rights."
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