Intersex activist Pidgeon Pagonis has shared his heartbreaking story of how they learned of their medical history.
In one Twitter feed shared earlier this week, Pagonis – who picked up the word ‘hermaphrodite’ – said they recently discovered some new information about their bodies that they didn’t know before.
When they were 18, Pagonis discovered that their medical records identified them as “46 XY male pseudo-hermaphrodite.”
“I found out then that I had been diagnosed with Partial Androgen Insensitivity Syndrome (PAIS),” Pagonis said.
They then underwent three “unnecessary cosmetic surgeries” to make them look more typically feminine.
Intersex activist Pidgeon Pagonis was incorrectly diagnosed with PAIS.
Recently, Pagonis started seeing a new endocrinologist and they asked to see all of Pagonis’ medical records.
The endocrinologist read all of Pagonis’ medical records and consulted with other experts in his field and ultimately concluded that their diagnosis of PAIS was incorrect.
Pagonis underwent 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 would be unable to use androgens, which is why they are given estrogen.
It’s infuriating. Doctors working with intersex children and young adults are incompetent and owe us reparations.
“Doing what they (doctors) did to me was quite complicated, but now I realized that they didn’t even have the right diagnosis – and that I can using androgens – is f**king infuriating beyond belief. “
I’m so hurt/sad/angry/upset.
There are things related to my intersex body. I recently discovered that I haven’t given myself the time or space to process.
— #EndIntersexSurgery (@Pidgejen) July 6, 2020
They said they now felt ‘robbed’ and criticized the many ‘good’ doctors who had failed to diagnose them correctly over many years.
“That’s what really breaks my heart, they never stopped to consider the fact that I had estrogen levels below 30 (which post-menopausal cis women usually have) throughout my twenties and early thirties was not OK or healthy.”
The activist suffers from a condition that results in loss of bone mass as a result of his medical mistreatment.
This failure occurred despite doctors checking Pagonis’ hormones every six months.
The result, the campaigner said, is that they have suffered from osteopenia – the loss of bone mass – since their mid-twenties.
“Our body needs certain levels of estrogen or testosterone to build healthy bones; and somehow for 15 years no doctor has ever connected my post menopausal (estrogen) levels to my damn bone scan results near osteoporosis. »
Pagonis added: “It’s infuriating. Doctors working with intersex children and young adults are incompetent and owe us reparations.
“It’s high time we moved into their quaint suburban gated communities and let their neighbors know what kind of bulls these pediatric urological surgeons and endocrinologists are ‘respected’ for.”
[ad_2]
0 comments