At 15 years old Mikayla Cahill learned she was supposed to have been born a boy. Mikayla was born with an intersex condition called complete androgen insensitivity syndrome, meaning she started to develop as a male foetus, but her body couldn’t process testosterone so she developed as a female.
At the age of 23, Mikayla had her testes – which were in her abdomen – removed in order to mitigate the risk of cancer. It’s something she now regrets and feels she wasn’t provided enough information to make an informed choice.
Intersex people make up roughly two percent of the population - comparable to the percentage of people born with red hair. However, people with intersex variations have long been stigmatised and left feeling unseen. For years Mikayla, now 26, was reluctant to identify as intersex because she was told it would be too hard for other people to understand. But talking about her condition has opened up a whole new world.
Photo: Courtesy of Re: News
Listen to the full interview with Mikayla Cahill
She says her mother knew about Mikayla’s intersex condition by the time she was around one year old because of the hernias she got as a baby. Mikayla didn’t find out properly until she was 15-years-old.
“When I was 11, I found out I wouldn’t get my period or be able to have children but I didn’t exactly know why. When I was 15, I was called into an appointment at the paediatric ward in Christchurch Hospital and my specialist at the time sat me down and said ‘you were meant to be born a boy, you don’t have a womb.’
“I completely disassociated. I remember him drawing the diagrams of a female internal reproductive systems and the outline of a female body and a circle that represented a hollow mass that was inside my body.”
However she says her mother and the specialist had a good discussion - it being the first time she was able to fully understand, medically, what was going on.
Mikayla says, although according to her chromosomes she’s not, she has always felt like a woman and was raised as such.
“I was raised very girly and always liked and naturally gravitated towards very girly things, which I still do. One thing I find interesting is that I never felt intersex until all of the medical and surgical intervention.”
The reason it’s advised testes are removed for people like Mikayla is because being undescended in the abdomen means they’re at a hotter temperature and therefore more mutagenic and likely to develop cancer.
“I was told flat out that I have a 30 to 35 percent risk of cancer, whereas the medical research over the last 20 years, from what I’ve seen, shows it to be anywhere ranging from 0.8 to 30 percent at a maximum.
“I was told by the head of female multidisciplinary clinic in Greenlane Hospital in Auckland last year that the risk of me actually contracting cancer was closer to five percent and that I had a 95 percent not developing cancer, but they would still recommend that surgery as a precaution.
“One thing I think is really interesting is that, when it comes to breast cancer and testicular cancer in typical males and females, doctors don’t just recommend that you cut off their organs because they might potentially become cancerous.”
Head over here to watch a short documentary about Mikayla by Re: News.
Where to get support:
Intersex Youth Aotearoa – National intersex youth community network run by Intersex Awareness New Zealand.
Rainbow Youth – A support network for sexuality and gender diverse youth in Aotearoa.