Little is known of Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), but unsurprising because women with this syndrome, often feel embarrassed, ashamed and, are terrified of anyone finding out that they are different. They are born without a womb, cervix and vagina, so they immediately feel abnormal. It effects one in every 5,000 women so it's not a rare syndrome it's just not talked about openly.
When I was working as part of a team, specialising in this field of expertise, I was privileged to have met several hundreds of women with MRKH. I was a part of so many of their journeys and, this was something that I will always cherish. Now retired, I still feel passionate and, I wanted to let the public know about these beautiful women with MRKH and, it inspired me to write Elizabeth Just Sixteen. It took me over a year to complete the book but another year to find the courage to get it published because I was afraid of any backlash or adverse reaction and, I was also mindful of the ethical and confidentiality issues, having been steeped in this practice throughout my working career. However, I still felt that I had an important story to tell, to be their voice and, that no fear was going to stop me so I decided to write my novel as a fiction, albeit that it was inspired by factual events.
MRKH has a huge psychological impact on the women with MRKH because of its direct inferences on their womanhood and sexuality. I wanted the women to know that their emotions and experiences are normal and, maybe when they can identify with my characters' journeys and their psychological ups and downs they will know they are not alone. MRKH also impacts on their families and loved ones so hopefully, together they can pick out the positives from my novel to help them understand and cope better.
I also want to raise awareness as to why the management by a multi-specialist team is crucial in helping the women to accept and live with their MRKH. I also know the women are often frightened by the treatment to correct their under-developed vaginas, so I have explained very honestly, to try to allay their anxieties and fears and, I have shown that their treatments, when successfully completed will enable them to be sexually active and, hope this will further encourage them. Their inability to bear their own children is often their biggest issue, so I hope they will appreciate that, with psychological support and counselling, they will be able to come to terms.
I am aware of some of the women's disturbing treatment by the public and health professionals so I have highlighted the importance of correct referral to specialist centres by professionals with no or little experience to ensure the women receive the appropriate care. This was always poignant to me and, further urged me to write my novel. I also wanted to share my experience and knowledge because I believe that when the public is more informed, they can empathise and appreciate the psychological effects, MRKH, have on the women and, come to accept and respect the women more. And, maybe then, the women will not be so frightened of being ridiculed or let anyone know they have MRKH.
It is also important for every woman with the syndrome to know that there was nothing they did or could have done, to prevent it. I hope that when the public is more knowledgeable and receptive, the women will no longer need to keep their MRKH their deeply-seated secret.