Most everyone takes their reproductive organs and the ability to use them to produce offspring for granted. But what would you do if you discovered that you had been born without any? That’s the situation that faced a young woman from Ballymoney, Northern Ireland. Rebekah Knight, now 25, recalls that she expected to start getting her period in her early teens. But 13 came and went with no period. As did 14, and 15, and 16. By the time she’d reached 17 both she and her mum Debbie were starting to get worried. They were aware that some girls started later than others, but 17? That seemed a bit much any way you chose to look at it.
Finally, they decided to go to the family GP for a sit-down. After doing an initial assessment, the doctor referred Rebekah to specialists at the Royal Victoria Hospital in Belfast where she would undergo a battery of tests. When testing was complete the medical team compiled the information and came to a startling conclusion: Rebekah, it seems, had been born without a vagina, cervix or uterus. This condition is known as Mayer Rokitansky Kuster Hauser (MRKH) syndrome, and it’s estimated to affect 1 in every 5,000 women worldwide, although due to underreporting and misdiagnoses many women with the condition are unaware they suffer from it.
Rebekah was told that although she possessed ovaries and that they were still able to function normally the fact that she was without a uterus meant that she would not be able to carry children. “As you can imagine” Rebekah says now “I was very heartbroken and shocked. I couldn’t believe this was happening to me.” Particularly distressing was the news that she wouldn’t be able to carry children. “There are no words to describe (her feelings)” at learning the news she says.
As if all of this was not troubling enough Rebekah also learned at the same time that she was born with only a single kidney and that her vagina was so small it would need to be surgically reconstructed. As she recounts “They said I needed to improve that part of the body, and to have it working normally. I was always a bit terrified of hospitals, but I knew it was going to benefit me in the long run.”
Armed with the knowledge that surgery would improve her chances for a more normal life Rebekah underwent a pair of procedures in the summer of 2013. The goal of the operations was to expand the tiny vaginal opening she’d been given by nature into a more naturally sized one. To do so, they stretched the tissue surrounding her vagina and then used it to reshape the area. The procedures were exhausting, but thankfully all went as well as could be expected. Rebekah spent 12 days recovering from the procedures in hospital before beginning a month of intense, hospital-based physiotherapy designed to enable her to regain a normal walking motion before she was finally discharged and allowed to return home.
“There were times when I questioned everything and whether it was worth it and it was a lot of hard work.” She says today. “My faith plays a big role in helping me, as there were always people from church praying for me.” Rebekah also believes God had a hand in seeing her through: “When I had my lonely nights, I just knew he was with me the whole time.” Today, one of her biggest challenges is meeting someone who will be accepting of her the way she is and who would be willing to start a family with her. Yes, that’s right. In spite of her condition, she hasn’t given up hope on becoming a mum herself. “…there are still options like surrogacy or adoption.” She says “This won’t stop me from becoming a mother.”
As for relationships, she’s not overly concerned about what some might see as the potentially daunting task of finding a special someone. She accepts that dating may be difficult and that telling someone you can’t have children could dissuade them from a long-term relationship. But she’s not deterred. “I don’t worry too much about relationships, as I believe the right person will stick by you for who you are. This is part of myself, but I have just learned to live with it. Everybody has their own battle, this is just mine.”
Rebekah’s plight has shone a spotlight on a condition that had previously been known only to a handful of medical professionals who specialize in rare diseases. So what is Mayer Rokitansky Kuster Hauser (MRKH) Syndrome and why does it afflict someone like Rebekah?
The precise cause of MRKH remains something of a mystery although research is currently underway to try and uncover some clues to how it works and why it affects some women and not others. Early indications were that occurrences of MRKH syndrome were completely random in nature perhaps instigated by the presence of non-genetic factors such as exposure to a teratogen or the onset of gestational diabetes. But this train of research has not yielded anything conclusive, and no environmental cause has been established as of this writing.
In recent years, however, focus has shifted toward a possible genetic source. Researchers point to an increasing amount of clinical data that seems to indicate that in familial cases MRKH may be inherited. Still, establishing a genetic source can be devilishly difficult and time-consuming although research continues apace.
At this point whether or not MRKH is a genetic disorder or not is a secondary concern for Rebekah, who is simply trying to carve out a normal life for herself in the wake of her diagnosis. She concluded that perhaps the best thing she could do both for herself and to raise awareness of MRKH was to write a book chronicling her experience. That book, entitled “The Girl With No…” is now available on Amazon and Rebekah hopes her tale will provide strength and comfort to others suffering the same or similar challenges in their life.