ALYSSA BALL always felt different to other kids as a child.
But it wasn’t until she had the “period talk” with her mum when she was 11 that she realised she was genetically male – and had been born with “balls in her belly”.
Alyssa was hit with the life-changing news that she was born intersex, meaning she had both male and female biological traits.
The now 27-year-old had premature testes removed from her stomach in an operation just a month before her first birthday.
It’s a decision which she now questions, as the testes weren’t life threatening.
The condition, known as “complete androgen insensitivity syndrome”, meant that despite being genetically male with XY chromosomes, Alyssa would likely never grow pubic hair nor have her voice drop due to her insensitivity to testosterone.
The psychology student also had no ovaries or uterus, so was unable to have periods.
The self-love coach claims she struggled as a teenager due to her surname “Ball” when classmates discovered she was intersex and used to fear potential love-interests would reject her for not being able to have kids.
Despite her mum’s decision for her to have surgery as a baby, the yoga-teacher blames fear-mongering doctors instead, who “kept her in the dark” and urged her to keep it “secret” when she began taking the medication.
She now hopes that by speaking out about the subject she will help other people not feel the “shame” she did.
The former-model shared her first video to TikTok this month, detailing how she found out she was intersex. She expected it would reach a couple hundred people at most.
To her surprise, it received more than 3.4 million views and thousands of likes and comments – she hopes sharing her story will raise awareness about what it means to be intersex.
Shame, isolation and secrecy
Alyssa, from Pittsburgh, Pennsylvania, US, said: “As a child, I think I always felt different and like nobody understood me.
“I was a tomboy and I always played soccer and softball and I was friends with the boys.
“I was always getting into fights, I was more rough and rugged.”
Alyssa recalled knowing she’s had surgery as a child, but not understanding what it was for.
She went on: “When I was 11, like most pre-teen girls I wanted to know when I was going to get my period and get boobs and have the whole puberty experience.
“My mom sat me down and she had this folder of medical information that she had kept for the first 11 years of my life.
“She told me that I wasn’t going to get a period and that I had an intersex condition called complete androgen insensitivity syndrome, where my body didn’t develop into a boy in the womb but it also never fully developed into a female.”
Her mum also revealed Alyssa had developed premature testes in her stomach.
“I was born with balls in my belly,” she joked.
“I remember feeling so sad when I found out because I was told to keep it a secret and there was all this shame and isolation and secrecy around it.”
Despite being told to keep it a secret, Alyssa immediately went to tell her little sister and close friends but but word got out about her condition at school.
What does it mean to be intersex?
Being intersex means that a person’s sex doesn’t fit neatly into the boxes of ‘male’ or ‘female’.
This can be based on their chromosomes, hormones, genitals and reproductive tissue.
According to the NHS, there are two types of androgen insensitivity syndrome:
- complete androgen insensitivity syndrome
- partial androgen insensitivity syndrome
It’s caused by a genetic alteration, which makes the body not respond to testosterone fully or at all, despite having usual male pattern chromosomes (XY).
This prevents typical male sex development, according to the NHS, meaning a child’s genitals may develop as female, or are underdeveloped as male.
They may also have may have fully or partially undescended testicles, but no womb or ovaries.
Complete androgen insensitivity syndrome can be more difficult to spot, as the genitals usually look like those of any other girl.
It’s often not diagnosed until puberty, when periods do not start and pubic and underarm hair does not develop.
Alyssa said: “The doctors told me no one was going to understand.
“At high-school, word got out and I grew up always trying to hide.
“With the last name ‘Ball’ with this situation, middle school and high school were really rough. ‘Alyssa has balls’ was a big thing.”
Alyssa also found out she wouldn’t be able to have children.
“I was really heartbroken because we have these ideas of the way we think life works, even at a young age, and I wanted children.
“As I got older, I worried people wouldn’t want to be with me because I couldn’t have kids and that it could ruin a relationship.
“I now tell everyone on a first date and just tell them because I’m so much more open.
“There’s so much shame and stigma around it, I really want to advocate for people to love and accept who they are and feel that there is no pressure to keep it a secret.”
At age 12, Alyssa was put on progesterone and oestrogen in order to mimic the hormonal experience of the female body during puberty.
Alyssa said: “It still didn’t give me a period, as I’d have to have a uterus for that and I had none of those organs.
“I’m genetically XY, so I’m taller, I’m 5’11. There’s some elements of the masculine traits but at the same time I have very feminine bones like a petite bone structure.”
But the student said she would ‘never have had any masculine characteristics’, as her body couldn’t respond to testosterone.
She explained: “All genders have a baseline of testosterone, but my body doesn’t do anything with it so I’ve never had body odour, armpit or pubic hair, I’ve never had a zit or pimple in my life, but also no period and no cramps.”
Celebrating the differences
Alyssa believes doctors should never have told her to ‘keep it a secret’ or operated on her at just 11 months old.
Alyssa said: “They took [the premature testes] out because they tell parents they could become cancerous, but the risk of them becoming cancerous is actually really low.
“Maybe had I had that choice as an adult, I wouldn’t have made it.
I’m just a big advocate for the fact that everybody should be able to make their own choice when it comes to that and I didn’t get a choice.
Alyssa still maintains that her mum “made the best choice that she could”.
“It’s the doctors who were really working to instil fear in parents, saying they could be cancerous.
“The fear we put in the parents and the whole ‘need to keep it a secret’ is only keeping people in the dark.”
Alyssa hopes sharing her story will encourage others to celebrate everyone’s differences.
Alyssa said: “My biggest message for people, whether you’re intersex or not, you’re not born broken.
“We are all born unique and we should really embrace who we are and how we came into this world.
“We should celebrate everybody’s unique differences and beauty. I think we should take it upon ourselves to just learn about ourselves and the way human beings can be, and be more loving and understanding and their journeys instead of being quick to judge and make assumptions.”
The University of Manchester states that there are more than 40 different variations which a person’s physical sex characteristics can take.
Approximately 1.7 per cent of the global population are intersex, with up to 1.1 million people in the UK alone.