An Adelaide woman who once dreamt of being a mum had her dream stolen from her after discovering she had a two centimetre vagina, leaving her hating her body.
Amanda Jones, 32, decided against adoption or surrogacy after the shock of learning aged 14 she was born without a womb.
The rare condition, Mayer Rokitansky Küster Hauser syndrome (MRKH), meant her womb had never developed and her vagina was just two centimetres 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,” she said.
“I was one of those teenage girls who loved babies and I so wanted to be a young mum … I hated myself and my body for not doing what it was meant to.”
Now, 18 years after her diagnosis, Amanda has come to terms with her condition and lives with her fiance Adam, 37, a carpenter, and their three dogs.
Amanda runs her own cake decorating business, and supports other women who are diagnosed with the condition through online groups.
Rather than risk disappointment through adoption, Amanda spends time with Adam’s children, aged 13 and 11, who split their time between their mum and dad.
At the age of 14 Amanda still hadn’t started her periods so she decided to visit her GP.
She was “well into puberty” but was the only girl in her year, and the year below her at school who had not yet started her periods.
“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”, she said.
Amanda was diagnosed with type one MRKH.
It does not affect ovarian development, and Amanda was told her ovaries were healthy.
However, as she did not have a uterus, she has never experienced ovulation or menstruation.
Amanda has also experienced underdevelopment because of the condition, which is caused by a lack of cervix.
“My vagina measured 23mm deep and 14mm wide,” she said.
“The gynaecologist recommended I dilate, which I wasn’t planning on doing until I was 16.
“Uterus transplants weren’t an option when I was diagnosed, so after my laparoscopy I didn’t have much more treatment.”
Amanda said she had no idea what MRKH was and it was only after she had recovered and returned to school that her diagnoses really hit home.
‘IF YOU’RE NOT HAVING SEX REGULARLY IT WILL SHRINK’
Aside from MRKH Amanda has no other issues with her reproductive health.
But she does suffer from mild hearing problems – common in those who have MRKH – which mean she can’t comfortably fly.
Amanda said she felt guilty that her illness would have a big impact on those in her life and her mum had worried it was her fault and “blamed herself”.
Unlike others with MRKH, Amanda didn’t have dilation therapy – where specially shaped vibrators are used to stretch your vagina.
“If you’re not having sex regularly it will shrink back down either to the dilated size or the size it was before,” Amanda said.
“It depends on the woman.”
When Amanda has had bigger partners, it would take a while to get used to it but it never stopped her from having sex.
‘THIS IS WHO YOU WERE MEANT TO BE’
In her late teens and early twenties, Amanda 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.
Before Amanda was diagnosed she had planned on getting married and having children at a young age.
But the condition left Amanda unable to do that and when she was 18 years old, she tried to take her own life.
Fortunately Amanda’s mum was able to take her to hospital in time and get help.
It was her love of baking and cake decorating that proved a turning point and said it’s something she “always loved doing”.
Amanda met Adam six years ago has now accepted having children wasn’t possible for her.
“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 said.
“He said ‘Maybe you were born this way because this is who you were meant to be.’”
This article originally appeared on The Sun and was reproduced with permission