Northern Ireland woman born without vagina or cervix speaks out
A woman has told of her heartbreak at discovering she had been born without a vagina, cervix or uterus when she was 18 years old.
Growing up, Rebekah Knight, now 25, from Ballymoney, Northern Ireland, thought she would start her period in her early teens like the rest of her friends.
But when she turned 17 and was still waiting, she began to worry that something wasn’t right.
Recalling how, after a string of tests, doctors told her she had a rare condition called Mayer Rokitansky Kuster Hauser (MRKH) syndrome, meaning she was born without vagina, cervix and uterus, events steward Ms. Knight said: ‘As you can imagine, I was very heartbroken and shocked. I couldn’t believe this was happening to me.
Then, in 2013, she had vaginal construction surgery in order for that part of her body to function normally.
A woman describes her pain at finding out she has no vagina, cervix or uterus at 18
‘I was especially devastated when I was told I wouldn’t be able to carry children. There are no words to describe it.
‘But there are still options like surrogacy or adoption. This won’t stop me from becoming a mother.’
Throughout her teenage years, Ms Knight assumed she would develop like her friends and peers. Reaching 17 without her periods arriving, she initially thought she may just be a ‘late starter’ – but after sharing her fears with her mother Debbie, 52, she decided to go to the GP for some advice.
There, she was referred to Royal Victoria hospital, Belfast for a variety of tests until eventually, an MRI scan revealed she had the condition, which affects one in 5000 women worldwide.
As her ovaries still function normally, Ms Knight, who lives with mother Debbie, dad Benny, 56, and siblings Thomas Knight, 23 and Matthew Knight, 15, is able to have children that are biologically hers.
‘I was especially devastated when I was told I wouldn’t be able to carry children,’ she said
In summer 2013, Ms Knight underwent two surgical procedures to reconstruct a vagina
But, without a uterus, she cannot carry them herself, so hopes to try surrogacy or adoption instead.
Following her diagnosis, Ms Knight was also told that she only had one kidney and would need surgery to reconstruct her vagina because it was so small.
‘They said I needed to improve that part of the body, and to have it working normally,’ she said, adding that they would monitor her kidney function.
‘I was always a bit terrified of hospitals, but I knew it was going to benefit me in the long run.’
So, in summer 2013, Ms Knight underwent two procedures at the Royal Victoria hospital.
Firstly, surgeons stretched the tissue on the outside of her vagina before using that tissue to reconstruct the area, expanding the previously small opening into a normal-sized one.
Though she healed well and thankfully did not suffer any infections, Ms Knight still spent 12 days confined to a hospital bed whilst she recovered.
She also spent a month undergoing tough physiotherapy to enable her to walk again before she was finally discharged.
Boosted by her faith
She said: ‘There were times when I questioned everything and whether it was worth it and it was a lot of hard work.
Determined to help others with the condition, Rebekah Knight has written a book about her experiences, called ‘The Girl With No…’ , which is currently available on Amazon
‘My faith plays a big role in helping me, as there were always people from church praying for me. I believe that God got me through this and pulled me to the other side,’ she said
‘My faith plays a big role in helping me, as there were always people from church praying for me. I believe that God got me through this and pulled me to the other side.
‘When I had my lonely nights, I just knew he was with me the whole time.’ Though she is currently single, she hopes to one day meet someone who can look past her condition.
She said: ‘I don’t worry too much about relationships, as I believe the right person will stick by you for you for who you are. Dating people can be difficult as it’s always hard to tell them about this – especially that I can’t carry children.
‘This is part of myself, but I have just learnt to live with it. Everybody has their own battle, this is just mine.’
Once she left hospital, Ms Knight started to think about charting her journey to help other people in a similar position.
Throughout everything, she has been helped by support groups on Facebook and she noticed newly-diagnosed women would join the pages, confused and frightened about what was happening.
Ms. Knight with her friend Emma. ‘Everybody has their own battle, this is just mine,’ she said
Determined to help, she has now written a book about her experiences called ‘The Girl With No…’ , which is available on Amazon.
She explained: ‘I started writing the book in 2015, a couple years after I was in hospital.
‘I just felt it naturally in my heart to do this, as it is a very unique condition to have, and I wanted to help other women who also had MRKH – but also women in general, so they could learn about it.
‘After I was diagnosed, for so long I didn’t talk to anybody about it, was very secretive and private. I just spoke to my family because I didn’t want anyone else to know.
‘But now I’m not embarrassed by my condition and speaking out was therapeutic.
WHAT IS MAYER ROKITANSKY KUSTER HAUSER?
Rokitansky Syndrome, or MRKH (Mayer Rokitansky Küster Hauser), is a congenital abnormality characterised by the absence of the vagina, womb and cervix.
Women suffering from the condition will have normally functioning ovaries, so will experience the normal signs of puberty – but will not have periods or be able to conceive.
The external genatalia are completely normal which is why MRKH isn’t usually discovered until women are in their teenage years.
Rokitansky Syndrome, or MRKH (Mayer Rokitansky Küster Hauser), is a congenital abnormality characterised by the absence of the vagina, womb and cervix
Many women are able to create a vaginal canal using dilation treatment, which uses cylinder shaped dilators of different sizes to stretch the muscles.
However, if this is unsuccessful then surgery will be used to stretch the vaginal canal.
Following treatment women are able to have intercourse and can have their eggs removed and fertilised to be used in surrogacy.
It affects one in 5,000 live female births, according to an 1985 article in the Journal of Reproductive Medicine.
Source: Centre for Disorders of Reproductive Development & Adolescent