Intersex people are not yet very visible in the Netherlands. That while intersex can have a big impact on someone’s life. For example, because of shame, or how it is sometimes dealt with in the medical world. NU.nl asks two people, during Awareness day on intersexualityto their history.
What is intersexuality?
- Intersex concerns the experiences of people who are born with a body that does not meet the current norm of man or woman in society. Their bodies have the characteristics of both. Very occasionally this is visible (genitals), more often invisible (hormones or chromosomes).
Bertine van Dalen (41) grows up as a girl and feels that way. When she reaches puberty, she doesn’t have a period. She is sixteen and then she goes to the general practitioner, who cannot find anything about her and sends her back to the hospital for check-ups.
“I didn’t realize at the time that maybe something was going on,” he says. Until one Friday she is suddenly snatched from the classroom.
He has to go home soon to go to the hospital with his parents – the results are here. There she gets the heavy message that she has no ovaries and no uterus. You appear to have complete androgen insensitivity syndrome (AOS).
This means it has the XY genotype, which usually occurs in a male. But due to the syndrome, her body did not develop male sexual characteristics.
‘This could be used against me’
“It was immediately said: it is better not to share this with other people”, Van Dalen looks back. “Because it could be used against me.”
In retrospect, it’s something that haunts her for the rest of her life. “I was a ‘normal’ guy, but suddenly I had a secret. I was actually told not to be visible.”
Due to the lack of the uterus, her vagina remained closed. The gynecologist immediately gives her some plexiglass wands to take home, with which she has to further stretch her vagina. He follows that advice because the doctor says so.
“This was an alienating and traumatic experience and I thought the pain of this process was part of being normal. In hindsight, this wasn’t necessary advice and thought from old-fashioned perspectives.”
confidentiality
- Van Dalen isn’t the only one who has been advised to shut up: until 2003 it was a standard part of inpatient treatment. According to Miriam van der Have of NNID, the Dutch Organization for Sexual Diversity, it still occurs today. “We are still receiving stories from young people who are advised not to talk about it.”
The eternal regret of surgery
After the diagnosis, he is not well. She doesn’t feel connected to her peers and her body. This leads to her depression.
She also struggles with something else. At the age of four she had an inguinal hernia, which later turned out to be related to underdeveloped testicles. Doctors advised her to remove it before she was eighteen, because she could develop malignant. But she wasn’t ready for that yet.
At the age of 24, after repeated insistence from doctors, he decides to do it after all. I’ll get cancer soon too, he thought.
She “regrets forever” the surgery. Because her hormones were altered, she experienced many physical and emotional ailments. The operation also appears not to have been necessary at all: research shows that the gonads do not need to be removed beforehand. That investigation came too late for Van Dalen.
“It would be nice if we no longer think in terms of ‘deviations’: nature is made up of all kinds of variations.”
Bertin Van Dalen
Eventually it takes more than twenty years before she can truly accept her body and feel more comfortable with her body. Looking back, she says a lot of things went wrong with the diagnosis. “I was told: you have to deviate from the norm. It gave me the feeling of not having succeeded as a person, as a woman”.
“It would be nice if we no longer think in terms of deviations: nature is made up of all kinds of different variations,” continues Van Dalen. “Intersex people exist and we have the right to exist as we are.”
According to her, doctors should not advise or perform unnecessary interventions until the child still has a developed voice or consciousness. “Give people the space to sink it. There is no need to change anything in a healthy person.”
Geert de Vocht: “When I had breasts I stopped playing football”
Geert de Vocht (63) discovers around the age of seven that there is something different about his body. “My twin brother could pee standing up, but I was always put on the potty.”
Investigation shows that her urethra doesn’t end up in the right place. When he was ten he was operated on, but the operation failed. “There were holes everywhere that he leaked through.”
When he tells the doctor, his parents scream out loud. “My brother had recently died and I didn’t want to cause him any more pain. I later told the doctor that he was fine.”
During puberty, she develops breasts, which she is also very ashamed of. “At one point someone in football asked: is it a boy or a girl? Football was my passion and my life, but I stopped immediately.”
It was only at the age of seventeen that he again dared to seek help. He is operated on again and his breasts are removed a few years later. Meanwhile, his doctors still haven’t told us exactly what’s going on.
The shame after surgery doesn’t go away
The shame didn’t go away after the operations. “I could wear a shirt, but my chest was sunken. When I went swimming with friends, I always made sure to lie on my stomach.”
At work he is called gay because he has no partner. “Over a drink, colleagues put money on the table so I could go to the whores. Someone came with me to check if I was coming in. I can’t describe how anxious I was.”
He later marries a woman, with whom he has been happily married for thirty years. They separate, after which he sets in motion a search for himself.
“I could have used a lot of support, but it was taken away from me.”
Geert de Vocht
Only a few years ago, after requesting his medical records at the hospital, he discovered that he had Partial Androgen Insensitivity Syndrome (PAOS). PAOS lacks androgens, which cause the activation of male hormones.
The diagnosis had already been made in 1979. He blames the doctors for never having been informed. “The idea was to protect me. Because if the other guys knew, they’d think I’m weird.”
“But they just left me to my fate. I could have used a lot of support, but that was taken away from me,” he concludes.
