September 16th to 22nd is World Childless week, a week that aims to raise awareness of the childless not by choice (cnbc) community. There are so many reasons, some of which are not medical, as to why someone, male or female, may be childless.
One of those reasons is MRKH.
Its difficult to really explain what being in that position feels like for most people and how it can affect you psychologically in particular. I have touched on a lot of specific points in my blogs before but I wanted to strip it back to some basics in the hope of shining a more specific light on this as part of a series of blogs over the coming weeks/months that I will be writing which have been based on my own experiences, reactions, challenges and more recent direct participation to support new research by my friend Mia*, designed to start to shine a light not on those newly diagnosed but on those whose diagnosis was 15+ years ago and how it has challenged their own identity at a different stage in their lives.
Part of this research included an interview which I have (very much) adapted here as a starting point.
What is MRKH?
Is a rare congenital syndrome named after the first publications by Mayer (1829), Rokitansky (1838) and Kuster (1910), Hauser (1961) often shortened to MRKH but sometimes also known as Rokitansky syndrome or Mullerian Agenesis. In practical terms it is the significant malformation or complete absence of the womb and under development of the vaginal tract. What causes this underdevelopment during the embryo’s development is still unknown. It affects approximately 1 in 4500 women globally.
When did you find out you had MRKH?
I was 17
How did it make you feel when you first found out?
I was with my mum. It took ages for the Doctor to come back after the laparoscopy and tell us what it was by which point I was tired and in pain and just wanted to go home. Mum cried but I admit it kind of washed over me a bit at first. I couldn’t really comprehend it if I am totally honest.
How does it feel to have a condition that affects 1 in 4500?
I don’t even know how to explain it. It really doesn’t feel that it’s just a small number. Granted at first when I hadn’t met anyone else it seemed impossible I would ever do so and therefore felt quite lonely but in reality that was for a short time. Having met so many more people a few of whom are now really close friends it doesn’t feel-, quite as daunting and actually like quite a big number in reality. The key reason for that indifference to me is the support I have both received and sought out myself directly. It has had a huge impact on my perception here.
What challenges have you faced?
My main challenges have really been with myself and comprehending, managing and coming to terms with it. A concern with what other people think, have thought or may think rather than reality. So there have been a lot of ups and downs over the years, most specifically emotional and psychological which are basically impossible to prepare for. It was my boyfriend at the time who mentioned to me that perhaps I should go and talk to someone. I remember being really nervous saying to my parents that I thought I needed to talk to someone. I’ve now gone through four different cycles of counselling at different times over the last 17 years to focus on the different stages or triggers in my life. There is still such a stigma around asking for help which continues to sadden me. The only other key personal challenge has been related to access to fertility treatment. You can read my blog on IVF Surrogacy here.
Would you say that MRKH has an impact on your life right now?
I think it’s something I will always think about or at least have in my mind. Saying that I actually feel it’s had a quite a positive impact, sounds a bit silly when I say it, in the sense that I think it’s made me, so much more aware of- different situations, different emotions, different ways of dealing with things. You don’t expect this to happen to you, and then when it does you have to process how you deal with it which is a little alien as its something you are totally unprepared for. So I think it’s given me a newer perspective as to, how difficult that part is whilst also providing me with new tools and skills I would otherwise have likely never known. Its not just something you snap your fingers and get over. Yet aside from the negative outcomes I feel more positive about it now than I have ever done.
So how has your viewpoint on MRKH changed over time since your diagnosis?
Quite a lot to be honest. When I was first diagnosed I was really embarrassed about it. A 17 year old girl who finds out there is something wrong with her own reproduction system it is going to have an impact. You don’t feel like other girls who are experiencing the full throws puberty with the addition of periods (a clear positive I don’t have to deal with I must add). At that age I wasn’t at all sure how to deal with the rest of it. A little later came the anger, sadness the drinking too much, the burying it. In many ways common (but totally ineffective overall) coping mechanisms I must add. Then of course the stages in mid to late 20s when my friends started having their own kids to then over time considering those options myself with the raft of emotions that also brought. To now where I am largely at peace with it to be honest and very much content with life as it is. Who knows perhaps even without MRKH I would be childless just by circumstance. We will never know.
What would you say to someone who has found out they can’t have children?
Nothing can prepare you for how you will feel. My best advice would be to find support in whatever way best works for you. Talk to people. Find comfort and find a way to process this. Don’t think it can be solved overnight. Cry. Scream. But most of all don’t think its the end of the world. It may feel like it and I get it, I have been there but give it time. If you can come to terms with it you will find happiness in your life however that comes.
*Mia’s name has been changed on her request to remain completely anonymous but she has provided me permission to kindly share parts of her research specifically for my blog. Love you M x.