ROME, Jan 31 (Thomson Reuters Foundation) - When Daniela Truffer was born no one could tell what sex she was so the doctors chose for her - that decision has caused her decades of pain and anguish, driving her to the brink of suicide.
Today, Truffer is calling for a ban on genital surgery and other harmful treatments on intersex babies and children.
“At two months old they castrated me and threw my testicles in the garbage bin without telling my parents,” said Truffer who was born with testes inside her.
“I was mutilated. I have spent my life in fear, pain and shame. I would have liked to decide for myself.”
Intersex people, or hermaphrodites, are born with ambiguous genitalia.
Truffer said doctors usually perform surgery in the first two years of life to “masculinise” or “feminise” intersex babies in the belief that it will make their lives easier and to relieve parental distress.
“These surgeries are medically unnecessary, irreversible and non-consensual,” said Truffer, co-founder of the international pressure group StopIGM.org - which stands for intersex genital mutilation.
“We don’t deny there are psychosocial issues but these should be addressed with psychosocial tools, not with surgery,” she told the Thomson Reuters Foundation.
Intersex is an umbrella term covering many variations of sex anatomy. Truffer says there is no data but estimates one or two babies in 2,000 are intersex.
In developed countries most will undergo surgery, she told an international conference on female genital mutilation (FGM).
Surgery can cause life-long pain, scarring, loss of sexual sensation and health complications. Truffer knows of one intersex person who had to go on dialysis after a botched procedure.
Truffer, who now talks to doctors and hospitals, said intersex children should be given support until they are older and can decide whether they want to undergo surgery.
After Truffer was born the doctors cut her open to try to find a vagina. When they couldn’t see one they opened her abdomen and found testes which they discarded.
When she turned seven there was more surgery to make her external genitalia look like a girl’s, leaving her with scars and pain. At 12 she was taking female hormones of the type used by menopausal women, which left her with osteoporosis by the time she was 30.
“If it wasn’t for psychotherapy I probably wouldn’t be here today,” she said.
Truffer, now 51, who did not meet anyone like herself until she was 35, says a high percentage of intersex people commit suicide because of the surgery and shame.
“They always told me and my parents I shouldn’t talk to anyone about it. There was a lot of shame and secrecy in the family. I was always hiding to make myself as invisible as possible.
“I spent 40 years like that. Then 10 years ago I started activism because I didn’t want future intersex children to suffer as I did.”
She told the BanFGM conference in Rome that there were parallels between IGM and FGM, a practice involving the partial or total removal of the external female genitalia which is prevalent in at least 30 countries.
Both can cause severe long-lasting physical and psychological problems, are done without consent and are a major rights violation, she said.
She added that clitoral reduction was a common procedure on intersex babies and that up until the 1990s doctors would often amputate the whole clitoris.
But while many countries have banned FGM no country has banned intersex surgery on babies and children.
However, several U.N. treaty bodies, including the Committee on the Rights of the Child, have criticised IGM as a harmful practice, Truffer said.
She believes doctors today would have tried to make her into a boy. Because of the surgery and hormones, she cannot say if she would have felt more like a boy or a girl given the choice.
“It’s a question I cannot answer. Part of the trauma is this question of ‘What if? What might have been?’ It’s something that always haunts you.” (Editing by Ros Russell; Please credit the Thomson Reuters Foundation, the charitable arm of Thomson Reuters, which covers humanitarian news, women’s rights, trafficking, corruption and climate change. Visit news.trust.org to see more stories.)