‘I am female,’ Jackie Blankenship says. ‘That’s the only body I know.’
The mum-of-one, from Michigan, USA, was raised as a girl and identifies as a woman.
But when she four years old, her parents were given a rare diagnosis: Jackie was actually ‘genetically male’ with XY chromosomes.
The now 40-year-old has complete androgen insensitivity syndrome (CAIS), defined by the NHS as a condition which affects the development of a person’s genitals and reproductive organs.
Those with CAIS will have XY (male) chromosomes — and may have internal testes — but their genitals will appear female because their body does not respond to testosterone.
It took time for Jackie to come to terms with her condition, saying she ‘didn’t really face it’ until she was in her 30s.
Now, she’s on a mission to educate people about being intersex, and shares information on her TikTok page, @mrsjackieblanks. She even became the first ever intersex Miss America.
Jackie says: ‘It took age and maturity to talk really candidly. I get comments that I’m hoodwinking my husband or that I’m a man.
‘People don’t understand it, we are taught so little about how our bodies work. We’re only told black and white of male and female.
‘For the most part people are very intrigued.’
With so much misinformation about androgen insensitivity syndrome, here are four surprising facts about the condition.
What is androgen insensitivity syndrome?
Androgen insensitivity syndrome affects the development of a person’s genitals and reproductive organs.
It is a genetic alteration, passed along the female line.
People with AIS will have XY (male) chromosones, but the body doesn’t respond to testosterone either fully, or at all.
There are two types of androgen insensitivity syndrome.
- Complete androgen insensitivity syndrome (CAIS) — the diagnosis that Jackie has. In this case, testosterone has no affect on sex development, and so genitals are entirely female. Most children with CAIS are raised as girls.
- Partial androgen insensitivity syndrome (PAIS) — where testosterone has some effect on sex development, so the genitals may not be as expected for boys or girls. A penis may not form or is underdeveloped. This means PAIS is usually noticed at birth.
Source: NHS
It’s not always obvious when someone has it
When Jackie was born, there were no visible indicators of her condition.
While those with PAIS may not have genitals as expected for a boy or girl, most people with CAIS appear as female. ‘I looked like any other little girl,’ Jackie said.
However, Jackie’s mum is from a big family, and actually has some siblings with CAIS. Therefore, when she was four, they decided to get her tested.
A diagnosis was confirmed, but Jackie was nine when she learnt the truth, as her mum explained she ‘wouldn’t develop like her sisters.’
‘I took it well I think,’ says Jackie. ‘I didn’t understand the impact it would have on me. I never really asked questions. But doctors told my parents we wouldn’t want to tell anyone. They really scared my mum and dad. There was a lot of fear and secrecy around it.’
As she got older and her friends started to go through puberty, she started to notice the differences more, recalling: ‘Everyone was so stressed about having a period and where and when it would happen. I felt relieved. I didn’t understand why women have periods.’
Jackie then had to undergo surgery aged 15 to remove her testes due to a small risk that they can become cancerous if left in place throughout adulthood.
According, to the NHS, this procedure happens after puberty because the testicles produce hormones that help girls with CAIS develop a normal female body shape without hormone treatment.
It stops you from growing body hair
‘I don’t grow any body hair or public hair,’ Jackie explains.
This is because intersex people can’t respond to testosterone, which is the primary hormone that triggers body hair to grow during puberty.
She adds: ‘I don’t have pubes, and I don’t have underarm hair. I’ve never shaved my underarms a day in my life.’
Yes, you can still have sex — with a little help
It’s simply not true that people with CAIS can’t have sex, but some assistance is typically required.
Aged 18, Jackie was told she would need ‘vaginal dilation therapy’ (usingsmooth plastic devices with a flat or rounded tip in various sizes to widen and lengthen the vagina) or surgery if she wanted to have sexual intercourse.
She says: ‘I was born with a blind pouch — my vagina doesn’t have a cervix — instead it’s like a little pouch.
‘Some women have an almost fully formed vagina but many of us have an inch of depth. You dilate at home to create a vaginal canal.’
Jackie went through a year of dilation therapy, but still so young, she says it was ‘traumatic’.
‘I didn’t know what kind of sex I would be having,’ she adds. ‘I didn’t know what I wanted in that department. I felt a lot of pressure to be ready.’
Back then, Jackie says the focus was on ‘normalising her body’ for a future male partner, although she was told they’d ‘never know the difference’.
Although she now can have sex, she has to stay sexually active to avoid her vaginal canal from contracting.
People with AIS are generally infertile
Jackie is a mum to a nine-year-old daughter, Greenleigh. However, as she doesn’t have ovaries or a uterus, she’s completely infertile, meaning she can’t have biological children.
Speaking on her TikTok channel, she shared that she was eight or nine years old when she learnt she would never have children, but along with her husband, Jim, 37, always wanted to be a parent.
After briefly looking into adoption, the pair were able to have their daughter after Jackie’s sister, Danielle Martin, 38, offered to carry a baby for her.
The group went through three rounds of IVF using an egg donor before Greenleigh was eventually born.
‘I went to all the appointments,’ Jackie says. ‘It was the best way to be a part of the experience.’
She adds: ‘I went through a lot to be a mum… the road was not easy.’
Those who have PAIS may retain some fertility.
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