A woman who was born without a womb and with a 2cm vagina has opened up about learning to accept her body.
Amanda Jones, 32, from Adelaide, Australia, assumed she was a late developer after all her female classmates began their periods before her.
But in 2003, at the age of 14, doctors discovered she suffered from Mayer Rokitansky Küster Hauser syndrome (MRKH), a rare congenital abnormality, meaning her womb had never developed and her vagina was just 2cm deep.
“My mum cried when we found out but, at 14, you don’t think about all the things you’re going to miss out on," Jones explains.
Having dreamt of being a young mum, Jones says she "hated myself and my body for not doing what it was meant to.”
But 18 years on, having come to terms with her condition, Jones now lives with her fiancé Adam, 37, a carpenter, and their three dogs and offers support to other women diagnosed with the condition through online groups.
Having chosen not to pursue adoption or surrogacy as a route to motherhood, due to the chances of either option being unsuccessful and the risk of further disappointment, Jones now spends time with her partner's children, aged 13 and 11, who split their time between their parents.
“I think if I had been able to have children, I wouldn’t be where I am in life now,” she says.
“Having that choice taken away is hard, but our worth is not put on our ability to have children."
After visiting the GP aged 14 about her lack of periods, Jones was sent for further investigation, which led to her diagnosis.
“I was the only girl in my year and the year below me at school who had not started her period yet, even though I was already a D-cup bra size, so I was well into puberty," she reveals.
“I was referred to a gynaecologist and had a laparoscopy, where they put a camera into your belly through a small cut in your abdomen just above your belly button.
“They had a look around and they couldn’t find anything. I was told my uterus was completely absent.”
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Jones was diagnosed with type one MRKH, which, according to the NHS, affects one in every 5,000 women.
The condition does not affect ovarian development, and Jones was told her ovaries were healthy, but as she does not have a uterus, she has never experienced ovulation or menstruation.
Similarly, due to the lack of a cervix – the neck of the womb – developing, women with MRKH, like Jones, often experience associated genital hypoplasia – or underdevelopment.
“My vagina measured 23mm deep and 14mm wide," she explains.
“I honestly had no idea what MRKH was – it was a big shock.”
Guilt about the impact on those around her also added to Jones' worries.
“My mum worried it was her fault, which I felt so horrible about,” she adds.
“I felt awful that she blamed herself, especially when there was nothing she could have done.”
Though doctors suspected Jones might have to undergo dilation – a medical process of stretching the existing vaginal tissue to ensure sex is comfortable for women with MRKH, in the end she dilated naturally when she started having sex.
In her late teens and early twenties, Jones continued to battle with her body image and struggled with her mental health, which led to her dropping out of her final year at high school.
She was diagnosed with depression and, aged 18, made an attempt to take her own life. She was found by her mother who took her to the hospital.
Finding a love of baking and cake decorating proved a turning point.
“I worked with food and found I really enjoyed decorating cakes,” she explained.
“It’s something I’ve always loved doing.”
Jones met her now-fiance in a pub in May 2015, but as her relationship grew, she slowly began to accept that having children might not be possible.
“I accepted that it wasn’t going to happen,” she says.
“For me, if surrogacy didn’t work or I wasn’t approved for adoption, it would just have been a whole heap more hurt.
“I didn’t want to put myself in that position.
“When I met Adam, I was struggling with that and had a real moment of realising what I wasn’t going to have in my life," she continues.
“He said ‘maybe you were born this way because this is who you were meant to be’.
“It was a massive turning point for me.”
Jones loves being a stepmother and has always supported her friends and siblings in their own journeys to parenthood.
“One of my sisters has children and I can’t wait for my other sister to get pregnant,” she says.
“It never occurs to me to feel upset because I share in the joy for them.”
Now Jones, who is a member of several support groups for the condition on social media, is determined to offer a reassuring perspective to other women with the condition.
“A lot of women on there can feel very worthless and it can be hard to try and change their minds,” she explains.
“There are so many women out there with successful lives, married to understanding men – who don’t have children.
“If I hadn’t been diagnosed, life would have taken me on a very different route.”
Additional reporting PA Real Life.