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‘I exist in the gray’: 29-year-old who looks like a woman but has male genitalia speaks out about rare intersex condition
- Jennifer Pagonis has Androgen Insensitivity Syndrome (AIS)
- The disorder prevents a womb from growing and causes testes to grow in the abdomen or other unusual places
- 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
- Pagonis now uses the first name ‘Pidgeon,’ doesn’t identify as female or male and works as an artist and intersex activist against surgery
By SADIE WHITELOCKS, US SENIOR HEALTH REPORTER
Published: 11:44 EST, 17 April 2015 | Updated: 19:50 EST, 29 April 2015
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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.
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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.
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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
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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.
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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
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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.’
WHAT IS ANDROGEN INSENSITIVITY SYNDROME?
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.
SOURCE: MedLinePlus
![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.'](https://i.dailymail.co.uk/i/pix/2015/04/17/16/27ABFEC900000578-3043767-Using_social_media_to_voice_her_thoughts_she_recently_tweeted_Di-a-12_1429285983699.jpg)
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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.’
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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.
Share or comment on this article: Jennifer Pagonis looks like a woman but has male genitalia talks about intersex condition
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ranchhouse5, Land of the Buttercups, United States, 1 decade ago
more power to you!Click to rate33826
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You are all terrible, New York, United States, 1 decade ago
The article clearly states Pidgeon does not consider themself to be male or female and yet the Daily mail sees it fit to use their birth name and She/Her pronouns. OKAY.Click to rate49297
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Copacetic, Dogpatch, United States, 1 decade ago
These kind of birth conditions are more common than people realize. I have a male friend who was born with Klinefelter’s Syndrome. Instead of having 1 X and 1 Y chromosome as most men he has an extra X, so is XXY. The condition makes him sterile. He …. See moreClick to rate52015Show 1 More Comments
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