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Northern Ireland woman born with no reproductive organs speaks out about her rare condition to give hope to others

EXCLUSIVE: When her period hadn't started by the time she was 18, Rebekah Knight sought medical advice only to discover she'd been born with a syndrome that affects only one in every 5,000 women. She tells Stephanie Bell of the anguish of realising she'd never carry a child, about her painful reconstructive surgery and how she is now rebuilding her life

A young Co Antrim woman who was born with a rare condition which prevented her reproductive organs from developing has penned a powerful book on her life story.

The Girl With No... charts 25-year-old Rebekah Knight's journey with Mayer Rokitansky Kuster Hauser syndrome (MRKH).

MRKH is a congenital abnormality, characterised by the absence of the vagina, cervix and the uterus (womb), which affects only one in every 5,000 women.

Rebekah, who works as a steward in the SSE Arena in Belfast, was 18 before she realised there might be something wrong. While her friends were all developing she still hadn't taken her period in her late teens and went to her GP. It was the start of a lengthy medical process which led to her shock diagnosis, followed by complex surgery to build her a normal vagina.

The shock of being told she had no womb and would never have children was the hardest blow for Rebekah.

Now fully accepting of her condition, she says she has shared her story in a book to help other women who are coming to terms with their diagnosis.

"While it has been traumatic I want to show that there is light at the end of the tunnel. At the end of the day, it is not life-threatening and people wouldn't even know you had it because you can't see it," says Rebekah.

"There is a UK support group on Facebook and a lot of women are posting on it who have just been diagnosed, and that's why I wrote my book. I want to do something positive and the book is my journey of what I went through and how I coped.

"The missing word in the title of the book gives the story a little bit of mystery as to what it might be.

"It is a unique condition and I hope that by writing my story it will help others going through it. The book's purpose is also to create awareness of this condition.

"I hope it might even help mothers and fathers whose daughters are going through it, as well as their sisters and brothers, to better understand."

Rebekah lives in Ballymoney with her parents Benny (56) and Debbie (52) and younger brothers Thomas (24) and Matthew (15).

Her book starts when she was at Ballymoney High School and just becoming aware that her menstrual cycle would soon be starting.

But while all her friends started to have periods, her periods never came. She waited years before her mum, who is a nurse, decided that it should be medically investigated.

Rebekah says: "Every year another birthday would pass me by and I still didn't feel a change in my body, the way that every other girl I knew was going through.

"My female family members would often ask me if I had any signs of getting my period and my response was always 'not yet'.

"So, when I turned 18 my mum thought it would be a good idea to go to the doctors and check to see why my period had not appeared yet.

"The doctor ordered blood tests and then there were different stages when I had to have scans and more tests and an MRI scan before I was told that I had no womb.

"I was told that my vagina was there but it was very small, and I had to go through surgery to get a normal vagina.

"It was quite heartbreaking. Every woman wants to be able to carry a child, and to be told at 18 that you won't was very hard. However, they explained that I could consider surrogacy or adoption.

"At the beginning it didn't seem real but I've learnt to live with it now as I have got older. It broke my mum's heart, though I now know lots of women can't have children for various reasons."

In her book Rebekah describes the emotion of receiving such a devastating diagnosis. In one of many very moving parts of her story, she writes of the moment the gynaecologist broke the news that she could not have children: "When I heard that my heart just stopped and dropped at the same time. Fighting back the tears was so difficult.

"I looked at my mum and she had already started to cry before I did. She went on to say that the MRI scan also picked up that I only had one kidney and then explained that my vagina was very small and would need reconstructing.

"When I came out of the doctor's office, I cried my eyes out. I was completely heartbroken by the news. All I could think of was my future and how I was supposed to tell anyone about this situation.

"I didn't want anybody to know for a long time because I had to get over the shock of it myself; every time I thought about it, I just cried even more.

"I started to yell at God for doing this to me; I'd say: 'Why did you do this to me Lord?'. I really started questioning it.

"But I am so thankful for my family and close friends who do know and have been so supportive throughout the whole journey so far, and even though I was really mad at God, I still trusted Him and I knew that this was part of His plan for a reason, as He always knows the bigger picture."

Surgery was major as it is an operation which is rarely carried out in Northern Ireland. In 2012 Rebekah had the first of many visits to Belfast City Hospital to discuss her options with a consultant in reconstructive surgery.

She had to have two operations, which took place in the summer of 2013 when she was 20.

The first surgery was to expand the tissue on the outside of her vagina and afterwards she was confined to her hospital bed for 12 days.

The second operation involved using the tissue created during the first surgery to reconstruct the vagina on the inside, making what was a very small vaginal area into a normal one.

She talks in her book repeatedly about her fear of hospitals, and the ordeal of being ordered to lie in bed for 12 days after her first surgery proved very traumatic for her.

She recalls: "I had to spend over a week just lying in bed. I couldn't even get up for a walk or anything. It truly was horrible, not to mention that I also had a catheter in. Anyone who has had surgery in the past will know how annoying and uncomfortable those things really are.

"I started to question whether it was all worth it and I really had my down and out moments. When you can't simply get up to go for a walk or to do everyday things, it is a struggle.

"I just wanted out of that bed, but I had nowhere to go. It felt like the longest 12 days of my life."

After her reconstructive surgery Rebekah rested for a couple of days and then had to learn to walk again with the help of hospital physiotherapists. She faced a long, slow recovery during which she spent a total of a month in hospital.

However, the relief that it was all over and the surgery had been a success was the beginning of her healing both physically and emotionally from the ordeal. Three years ago she started to write her book, which she has self-published on Amazon and Kindle.

While Rebekah has come to terms with her condition it has had its challenges, especially when it comes to dating. She feels that with any new partner she needs to tell them that she will never be able to have children.

"I was going with a boy at the time I was diagnosed and he was quite understanding and did support me," she says.

"We did break up for other reasons some time afterwards and it was for the best.

"It has been hard to tell everyone I meet that I can't have children, but it is only fair. I am not with anyone at the moment."

She hasn't ruled out becoming a mum and says one day she would like to have a family by adoption if it is meant to be.

Rebekah talks often in her book about her strong faith in God, which has helped her through the past few years.

"Having my faith has helped me a lot to get through it all. There were a lot of prayers and my church congregation were also thinking of me in their prayers, which helped a lot too," she adds.

"I have come out the other side now and I just hope my book can help people who have just found out they have MRKH."

The Girl With No... by R J Knight is available now on Amazon, paperback £10, Kindle edition £5

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