A woman who was born without a womb and a 2cm vagina has spoken about how she’s learned to accept her body, and why she hasn’t got surgery.
Amanda Jones, 32, from Adelaide, southern Australia, thought she was a late developer after all her female classmates began getting their periods before her.
However in 2003, doctors discovered Amanda suffered from Mayer Rokitansky Küster Hauser syndrome (MRKH). This is a rare congenital abnormality, which means her womb had never developed and her vagina was just two centimetres deep.
Amanda was diagnosed after a visit to the GP about her lack of periods.
She revealed: “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.
“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.”
Amanda was diagnosed with type one MRKH, which affects one in every 5,000 women, according to the NHS.
The condition doesn’t affect ovarian development, and Amanda was told her ovaries were healthy, but as she didn’t have a uterus, she has never experienced ovulation or menstruation.
Due to the lack of a cervix – the neck of the womb – developing, women with MRKH often experience associated genital hypoplasia – or underdevelopment.
She added: “My vagina measured 23mm deep and 14mm wide.
“Uterus transplants weren’t an option when I was diagnosed, so after my laparoscopy I didn’t have much more treatment. I honestly had no idea what MRKH was – it was a big shock.”
Amanda went back to school, but the knowledge of her condition had a big impact on her as she ‘knew her body wasn’t the way it was supposed to be.’
Talking about the diagnosis, Amanda said: “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.
“I was one of those teenage girls who loved babies and I so wanted to be a young mum.
“As I grew up, I realised I won’t ever have those Christmas mornings and Easter mornings – those special moments with my own children.
“I hated myself and my body for not doing what it was meant to.”
Amanda did not end up needing to undergo dilation – a medical process of stretching the existing vaginal tissue to ensure sex is comfortable for women with MRKH.
She explained: “It hasn’t ever really been an issue for me as I ended up dilating naturally when I started having sex.
“Among women with MRKH, we’ve got a saying, ‘If you don’t use it, you’ll lose it’.
“If you’re not having sex regularly it will shrink back down – either to the dilated size or the size it was before. It depends on the woman.
“When my partners have been bigger, it’s taken a while to get used to it. It would hurt sometimes, but it doesn’t prevent you from having sex. Some of them have said it’s like hitting a brick wall – which wasn’t very nice of them!”
Amanda said she also suffers from a ‘slightly weak bladder’ and mild hearing problems which mean she would not now be able to comfortably fly.
Despite all this, the brunette says she has come to terms with her condition 18 years on.
She now lives with her fiancé Adam, 37, a carpenter, and their three dogs, chihuahuas Izzy and Orlando, rescue-cross Boo.
Amanda runs her own cake decorating business and tries to support other women who are diagnosed with the condition through online groups.
She has decided not to pursue adoption or surrogacy as a route to motherhood, as she is worried either option could be unsuccessful and could cause further disappointment.
Instead, Amanda spends time with Adam’s children, aged 13 and 11, who split their time between their mum and dad.
She added: “I think if I had been able to have children, I wouldn’t be where I am in life now.
“Having that choice taken away is hard but our worth is not put on our ability to have children. If that was the case, Oprah would be worthless.