Intersex activist Pidgeon Pagonis’ heartbreaking, powerful story of how they learned about their medical history on Twitter is a story that is sadly all too common for many intersex people around the world.
In a Twitter thread, Pagonis – who has reclaimed the word “hermaphrodite” – explained that they had discovered new information about their body that they hadn’t previously known.
When they were 18-years-old, Pagonis discovered that their medical records identified them as “male pseudo-hermaphrodite 46 XY”.
“I discovered then that I had been diagnosed with partial androgen insensitivity syndrome (PAIS),” Pagonis said.
They went on to have three “unnecessary cosmetic surgeries” performed on them in an effort to make them look more typically female.
Intersex activist Pidgeon Pagonis was incorrectly diagnosed with PAIS.
Pagonis started seeing a new endocrinologist, and they asked to see all of Pagonis’s medical records.
The endocrinologist read all of Pagonis’s medical records and consulted with other experts in his field and ultimately came to the conclusion that their diagnosis of PAIS was incorrect.
Pagonis was given a genetic test, and last month, their endocrinologist’s suspicions were confirmed.
“Turns out, I don’t have PAIS,” Pagonis wrote. “I actually have something else known as NR-5A1.”
Pagonis noted that intersex people with PAIS are thought to be unable to utilise androgens, which is why they are given oestrogen.
This is infuriating. Doctors working with intersex kids and young adults are incompetent and owe us reparations.
“Doing what they [the doctors] did to me was f**ked up enough, but now realising that they didn’t even have the diagnosis right – and that I can utilise androgens – is f**king infuriating beyond belief.”
I am so hurt / sad / angry / upset y’all.
There’s some things related to my intersex body I’ve recently found out that i havent given myself time or space to process.
— #EndIntersexSurgery (@Pidgejen) July 6, 2020
They said they feel “robbed” and criticised the many “good” doctors who failed to correctly diagnose them over the course of many years.
“This is what really breaks my heart, they never ever stopped to consider the fact that me having oestrogen levels below 30 (which is what post-menopausal cis women typically have) throughout my twenties and early thirties was not OK or healthy.”
The activist has a condition that causes loss of bone mass as a result of their medical mistreatment.
This failure occurred despite the fact that doctors were checking Pagonis’s hormones every six months.
The result, the activist said, is that they have osteopenia – the loss of bone mass – since their mid twenties.
“Our bodies need certain levels of either [oestrogen] or [testosterone] to build healthy bones; and somehow for 15 years no doctor ever connected my post-menopausal [oestrogen] levels with my damn near osteoporosis bone scan results.”
Pagonis added: “This is infuriating. Doctors working with intersex kids and young adults are incompetent and owe us reparations.
“It’s past time we roll up to their homes, in their quaint suburban gated communities, and let their neighbours know what type of bulls**t these ‘well respected’ paediatric urology surgeons and endocrinologists be on.”