Where do I begin ? From the beginning …..
I was born with a rare condition called Mayer-Rokitansky-Kuster-Hauser syndrome (MRKH for short!) which affects 1 in 5000 women this is a congenital condition, the cause of which remains unknown. This condition means you are born without a womb/uterus, cervix or vagina. There are two types of MRKH – type 1 and type 2.
Women with MRKH have functioning ovaries, but are typically unable to carry a pregnancy? The outward appearance of someone with MRKH is the same as all other women. I have MRKH type 1 and I now think how lucky I am as with MRKH type 2 other organs are also affected where you can have hearing problems, kidney and vertebral system and musculoskeletal anomalies. We are all slightly different. When I was in hospital at 16 I met another girl with MRKH who had a prosthetic hand (if you ever read this I’d love to meet you again – I’ll never forget you we had such fun together, making up poems and I remember we bought our doctor a pair of boxer shorts as a thank you present🤪🥰).
I was diagnosed at 16 after not starting my menstrual cycle and I remember going to the doctors with my mum and her being asked “does she eat properly?” When my periods didn’t happen I was sent for a laparoscopy, an operation to look inside your abdomen. It was a huge shock to hear at 16 and be told ‘You don’t have a vagina or womb’. I was so lucky to be referred to the right place even 30 years ago and my thanks go out to my knowledgeable doctor at the time and Queen Charlottes and Chelsea Hospital in London.
I have been through a lot of counselling as growing up has been hard realising that you are not the same as other girls and women and has been difficult. MRKH is often a grieving process. I realise now that the mental health side of things is so very common in girls and women with MRKH as when friends and family start building families this can be very isolating and even now it can pop up in your head when you least expect it even when you thought you’ve accepted it!
You need someone who you can talk to and relate to and in today’s society this has become so much easier with social media and the internet which is the reason why I am now telling my story. I feel it is so important to get the message ‘out there’ to other young girls and younger women that have been newly diagnosed to know that you are not alone 🤗 👯♀️. You may not know or think this yet but you are important and you are here for a reason. I know this now after connecting with other women all over the world (thanks to social media and especially MRKH Connect).
‘God gives his hardest battles to his strongest fighters’
I know that you will go through life attending medical appointments where you will asked the most awkward questions and these just ‘twist the knife in even further’ 🥺. Doctors and Nurses are still very unaware of the condition and even after they have read your notes and you have told them you have MRKH they will still ask “So when was your last period?” , “is there any chance that you might be pregnant?” I’ve even been asked “so when did you have a hysterectomy?”. I know that you may question your sexuality also but you just be who you want you to be!
I’m definitely not writing this for sympathy (as I’m far too old and past that stage) and I’ve wallowed in enough self pity but I want to raise awareness and for women to speak out more. In this day and age and in today’s society women need to be more open about their infertility (which is still a taboo subject) and MRKH needs to be more recognised to prevent young women being so wrongly diagnosed and mistreated. Coming out of my ‘everyday life’ comfort zone to tell the world is a big thing for me but because I have become friends with so many inspiring women with MRKH since social media has become progressive and for that I am truly thankful and to have this available is amazing. When I was diagnosed at 16 this was not available and they really are a wonderful resource of ‘not feeling alone’, hope, reassurance, coping with emotions, guidance and friendship. I can’t wait for the time when I can meet up in again in person with these incredible, inspiring people.
Saying all of the above, the more I think about it ‘a small part of this is ‘about me’ as after this past year I am appreciating the life I have been given more than ever and the weight being lifted from my shoulders’ to come clean and not hide away with shame has motivated me.
I also want girls that think ‘I can never have children’ to change their thought and wording to ‘I can have children’ – I have a beautiful biological son born through IVF surrogacy, who is my absolute world. He is now 14 and growing into a handsome, talented young man who I couldn’t love more and be more proud of 😊.
‘ I asked God for an angel and he gave me my son’ !
I can’t publish this post without mentioning my fiancé – ‘my rock ‘, the support he has given me is outstanding and I love him so much for the encouragement he has given me to do this and just be there for me (which I appreciate at times has been challenging 😬🤪) – he really doesn’t know how much strength and courage he has given me 🥰
Those that have read this this far – thank you 🤗.
And for those of you that (really know me for who I am) will know that to me MRKH also stands for ‘More Rose Kinda Helps’ 🤣🍷 and without you lot I wouldn’t be the person I am today – I can’t mention everyone but you know who you are 😊
I am proud of the woman I am today as I’ve gone through a hell of a lot to become her !