'I'd never had a period ... the doctor's words shocked me'

"It just never happened. I didn’t speak up about it, because I wasn’t really sure if it was normal or if I was a late bloomer."

Claudia Poposki

@claudiajourno

3 min read

September 16, 2024 - 4:19PM

Family Life

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A 21-year-old woman has revealed how she “grew a uterus” after never going through puberty.

Ashley Reilly, from Western Australia, said she was at the end of primary school when many of her friends started menstruating and going through puberty.

“For me, it just never happened. I didn’t speak up about it, because I wasn’t really sure if it was normal or if I was a late bloomer,” she told news.com.au.

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It wasn’t until she was 16 that she confided in her mother and aunt about what was going on, and in turn, they took her to the GP.

After telling the doctor that she’d never had a menstrual cycle or developed breasts, she was sent for an ultrasound. The exam uncovered that she had no uterus or cervix, as well as a shortened vaginal canal.

It resulted in her being diagnosed with MRKH syndrome, which is a condition that causes the vagina and uterus to be underdeveloped or absent — despite external genitalia appearing normal.

Ashley Reilly, from Western Australia said she was at the end of primary school when many of her friends started menstruating and going through puberty. Picture: Supplied

"I still can't really get over it"

It meant for the last five years, Ashley had countless specialist appointments, scans, blood tests and MRIs. She was also given medication for the hormone oestrogen.

“The last scan I had was an internal ultrasound and they were like, ‘there’s your uterus’. I was like, ‘Excuse me’. I was shocked,” she said.

“I didn’t know what to say, especially after all these years thinking there’s nothing there. I still can’t really get over it.”

Ashley said a specialist told her that what happened to her was “rare”, saying most people couldn’t “grow” a uterus simply by being on oestrogen.

She was told that if her uterus continues to grow, there is a chance of her falling pregnant, but IVF would likely assist it as her ovaries aren’t incredibly active.Once she switches up her medication, based on doctors’ advice, she can expect to get her period at some point soon.

But, for her, it never happened. At 16 she went to the doctor. Picture: Supplied

"I don't really want to get my hopes up"

However, it hasn’t all been positive news. Ashley said a whole body X-ray revealed she had developed scoliosis due to the hormones, and due to her condition, her bone density and size are the equivalent of a 14-year-old.

“There’s some kind of hope, but at the same time, I don’t really want to get my hopes up,” Ashley said.

The young woman revealed she had wanted to be a mother her whole life, and the news was tough to take in when she first discovered her situation five years ago.

“My original plan was to go through surrogacy,” she said.

“I’m kind of switching my mindset, which I don’t know if that’s a good thing or a bad thing.”

She was put on oestrogen. Picture: Supplied

New diagnosis changes Ashley's plans

However, it turns out that her initial diagnosis of MRKH wasn’t correct. Since then, she’s been rediagnosed with hypogonadotropic hypogonadism — also known as hypo hypo.

Hypo hypo is a condition where the ovaries produce little to no sex hormones due to an issue with the pituitary gland. Ashley said she’s still learning about the condition.

Ashley is sharing her story on her TikTok page as she knows there isn’t a plethora of information available about MRKH or hypo hypo, and she wants to be a person people can turn to as an example. As someone who experienced it and felt like she couldn’t speak up, she wants to give others the confidence to do so.