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Pidgeon Pagonis on the moment she discovered intersex condition
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Published: 16:44 BST, 17 April 2015 | Updated: 00:50 BST, 30 April 2015
She might have the physical attributes of a woman but Jennifer Pagonis was in fact born intersex, meaning she is genetically male and has the reproductive organs to match.
The 29-year-old from Chicago has Androgen Insensitivity Syndrome (AIS), a very rare disorder affecting 1 in 20,000 which prevents a womb from growing and causes testes to grow in the abdomen or other unusual places in the body.
Pagonis said she always felt different with constant hospital visits but didn't learn the full truth about her condition until a college instructor described the hormone syndrome one day during class.
The brunette - who currently works for a non-profit addressing the legal rights of intersex individuals - immediately phoned her mother to discuss her suspicions and was shocked to find her worst fears confirmed.
Speaking out: She might have the physical attributes of a woman but Jennifer Pagonis (above) was in fact born intersex, meaning she is genetically male and has the reproductive organs to match
Flashback: The 29-year-old (seen above circa 1990) has Androgen Insensitivity Syndrome (AIS), a very rare disorder which prevents a womb from growing and causes testes to grow in the abdomen
'I was like, "Oh. My. God! That's the thing the teacher was talking about ... ,"' Pagonis told the Associated Press. 'And then I went into like a freefall.'
Two decades ago, there was little information about AIS and Pagonis' parents were'n't sure how to talk openly about the condition.
Pagonis was born with an enlarged clitoris, no uterus and a partial vagina that surgeons later extended so that as an adult she might have normal sexual intercourse.
However, Pagonis says she learned as a teenager that this was 'almost impossible'.
Undescended testes were also removed from her abdomen to prevent them from developing cancer; although some doctors now think affected children can be monitored instead.
For a long time Pagonis struggled with depression and angst until meeting young intersex adults who've embraced their differences.
Growing pains: Pagonis said she always felt different with constant hospital visits but didn't learn the full truth about her condition until a college instructor described the hormone syndrome one day during class
Body confident: Pagonis now uses the first name 'Pidgeon,' doesn't identify as female or male and works as an artist and intersex activist against surgery
Pagonis now uses the first name 'Pidgeon', doesn't identify as female or male and works as an intersex activist against surgery.
Using social media to voice her thoughts, she recently tweeted: 'Diagnosed [with] testicular feminization (AIS) & labeled male pseudo-hermaphrodite exist in the gray. But, I believe, so does everybody.'
Pagonis' advice for parents with intersex infants?
'Take them home and love them ... just the way they are.'
Alice Dreger, a Northwestern University ethicist and author, says it makes sense for parents to raise affected kids as boys or girls.
'But sometimes we get that gender assignment wrong. And in those cases it's particularly important that we've not done unnecessary interventions.'
Androgen insensitivity syndrome (AIS) is when a person who is genetically male (who has one X and one Y chromosome) is resistant to male hormones (called androgens). As a result, the person has some or all of the physical traits of a woman, but the genetic makeup of a man.
It is caused by genetic defects on the X chromosome. These defects make the body unable to respond to the hormones that produce a male appearance.
Complete androgen insensitivity prevents the penis and other male body parts from developing. At birth, the child looks like a girl. The complete form of the syndrome occurs in as many as 1 in 20,000 live births.
How many male traits people have differ in incomplete AIS. A person with complete AIS appears to be female but has no uterus, and has very little armpit and pubic hair. At puberty, female sex characteristics - such as breasts - develop. However, the person does not menstruate and become fertile.
Persons with incomplete AIS may have both male and female physical characteristics. Many have partial closing of the outer vaginal lips, an enlarged clitoris, and a short vagina.
Complete AIS is rarely discovered during childhood. Sometimes, a growth is felt in the abdomen or groin that turns out to be a testicle when it is explored with surgery.
Most people with this condition are not diagnosed until they do not get a menstrual period or they have trouble getting pregnant.
Incomplete AIS is often discovered during childhood because the person may have both male and female physical traits.
Tests used to diagnose this condition may include blood work, genetic testing or a pelvic ultrasound.
When it comes to treatment, testicles that are in the wrong place may be removed when a child finishes growing. Estrogen replacement can also be prescribed after puberty.
Vocal: Using social media to voice her thoughts, she recently tweeted: 'Diagnosed [with] testicular feminization (AIS) & labeled male pseudo-hermaphrodite exist in the gray. But, I believe, so does everybody.'
Idea exchange: It's estimated that at least 1 in 5,000 U.S. babies are born each year with intersex conditions
Pagonis hopes that by speaking out about her condition she can help comfort others with AIS.
Efforts in the medical sphere also are underway to change the way intersex children are treated.
'The way that we took care of things in the past... where there was a fair amount of secrecy, where there was surgery done in the infant state, and potentially irreversible surgery, is probably not the best way to go about things,' said Dr. Earl Cheng, who runs the two-year-old sex development disorders program at Chicago's Ann & Robert H. Lurie Children's Hospital.
The program is one of several nationwide that employ a team of specialists including surgeons, hormone experts, genetic counselors, psychologists and ethicists.
The team helps families weigh their options, including whether surgery should be considered at all.
It's estimated that at least 1 in 5,000 U.S. babies are born each year with intersex conditions.
Some affected children have typical male or female chromosomes, but genetic glitches and hormonal problems that begin in the womb, cause genitals to resemble those of the opposite sex.
Others have a male-female blend of sex chromosomes and reproductive organs.
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The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline.

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Published by Associated Newspapers Ltd
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Queen reveals what's inside her handbag while having tea with cheeky Paddington Bear in sweet Platinum Jubilee clip
Platinum Jubilee concert: Mummy laughs and cries with us all, says Prince Charles
Platinum Party: Prince George sings along to Sweet Caroline
Ukraine forces pushing back Russia in Sievierodonetsk
Man in critical condition after being tasered by police and falling into Thames
Poll predicts heavy Tory by-election loss amid reports Johnson faces leadership test
Kremlin assassin who killed ex-spy at London hotel dies from Covid in Russia
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Published: 16:57 GMT, 9 April 2016 | Updated: 10:01 GMT, 10 April 2016
An Australian model who was born with a penis and vagina has kickstarted a modelling career despite being bullied mercilessly at school.
Sophia Young, born in Nowra on the south coast of NSW, was only eight-years-old when she started feeling pain in her pelvic area, and doctors soon discovered her ovaries were positioned abnormally, with one being much higher than the other.
As she got older, both reproductive organs developed, but her penis became so large that her parents stopped raising her as a girl, and changed her name to Harrison.
An Australian model who was born with a penis and vagina has kickstarted a modelling career despite being bullied mercilessly at school
'I want to get rid of all the male parts so I can have a sense of normality'
'I have a vagina, uterus and ovaries, but my clitoris is so oversized it looked like a penis. You can't tell what it is, but it has no function and I can't have kids,' she told Daily Mail Australia.
'I want to get rid of all the male parts so I can have a sense of normality.'
Now 22, Ms Young hopes to earn enough money as a model to fund her genital correction surgery and is in the process of changing her legal name from Harrison to Sophia.
Before she entered the modelling industry, Ms Young, who was initially raised as a girl in the regional NSW city of Wagga Wagga, was constantly bullied, suspended 11 times and kicked out of various schools, before dropping out in Year 11.
Sophia Young, born in Nowra on the south coast of NSW, was only eight-years-old when she started feeling pain in her pelvic area
Doctors soon discovered her ovaries were positioned abnormally, with one being much higher than the other
'I got suspended a lot at school and bullied lots, it was really bad.'
Ms Young had Asperger's syndrome and didn't start walking or talking until the age of five or six.
'I was a slow developer, I didn't get on well, I got bullied and teased so much that I used to isolate myself so much from kids in the playground that I became a loner and the other kids viewed me as strange,' she told Daily Mail Australia.
'I punched a kid in the face, broke school property, twisted school laptops because I was bottling up my pain, I was always really angry.'
As she got older, both reproductive organs developed, but her penis became so large that her parents stopped raising her as a girl, and changed her name to Harrison
From 2003 to 2011, Ms Young attended various preparatory and public schools in NSW before eventually dropping out after falling behind on assessments, despite wanting to finish the HSC.
'My mum originally wanted me to go to special education school but I refused because all the kids copped a lot of flack, and I didn't want to be treated just like the way they were. I want to get the same privileges as everyone else.'
Ms Young told Daily Mail Australia that the relentless bullying she endured resulted in six suicide attempts.
'I tried to shoot myself but the gun didn't work and tried to overdose on Ritalin,' she said.
'I have a vagina, uterus and ovaries, but my clitoris is so oversized it looked like a penis. You can't tell what it is, but it has no function and I can't have kids,' she told Daily Mail Australia
In 2014, Ms Young moved to Sydney and was only 21 when she was thrown into the modelling world.
'One of my friends told me I looked pretty interesting and that I should start to model but I didn't think much of it as I was very rough on the outside and have a big, blunt personality unlike most models.'
Despite being signed to various modelling agencies, Ms Young told Daily Mail Australia that it has been difficult finding gigs.
'Every company or client is looking for either a male or female, but if you're both they don't want it,' she said.
'Inter-sex and androgynous models are still considered taboo in the industry.'
Now 22, Ms Young hopes to earn enough money as a model to fund her genital correction surgery and is in the process of changing her legal name from Harrison to Sophia
Ms Young said the only reason she started modelling in the first place was to fund her genital correction surgery, which costs up to $60,000 in Australia.
The lack of modelling jobs available prompted her to start a Go Fund Me page to raise money for the corrective procedure, where she received almost $500 in donations.
On Saturday night, however, Ms Young removed the page and refunded everyone.
'I didn't want to feel like I was sponging off other people. I took it down because I feel guilty for taking money from people that work hard for it, I want to try get the money through modelling,' she told Daily Mail Australia.
But Ms Young said she doesn't want to be a model forever, and eventually wants find a 'real' job.
Before she entered the modelling industry, Ms Young, who was initially raised as a girl in the regional NSW city of Wagga Wagga, was constantly bullied, suspended 11 times and kicked out of various schools, before dropping out in Year 11
Ms Young (left) told Daily Mail Australia that the relentless bullying she endured resulted in six suicide attempts
'I tried to shoot myself but the gun didn't work and tried to overdose on Ritalin,' she said
In 2014, Ms Young moved to Sydney and was only 21 when she was thrown into the modelling world
Despite being signed to various modelling agencies, Ms Young told Daily Mail Australia that it has been difficult finding gigs
Ms Young said the only reason she started modelling in the first place was to fund her genital correction surgery, which can cost up to $60,000 in Australia
The lack of modelling jobs available prompted her to start a Go Fund Me page to raise money for the corrective procedure, where she received almost $500 in donations
On Saturday night, however, Ms Young removed the page and refunded everyone
But Ms Young said she doesn't want to be a model forever, and eventually wants find a 'real' job
The comments below have been moderated in advance.

The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline.

We are no longer accepting comments on this article.
Published by Associated Newspapers Ltd
Part of the Daily Mail, The Mail on Sunday & Metro Media Group

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