My Story: I Made My Vagina
MRKH – Mayer Rokitansky Küster Hauser Syndrome
I made my vagina
These are the words that not many people can say and I have been proud to say for a very long time.
I don’t have Vaginismus but I do have MRKH and many of us that do end up using dilators at some point in their journey.
I had never heard of Vaginismus until a few years ago when I had a friend diagnosed with it. She was really struggling with the condition and the lengths she was going to, to numb the pain reminded me so much of my own dilation journey. Of literally trying to do anything to normalize it and feel comfortable, particularly in the early stages when all I felt was shame and embarrassment.
20 years ago I was 17 and diagnosed with MRKH – Mayer Rokitansky Küster Hauser syndrome. This is, as simply as possible, a congenital condition (present at birth) that affects 1 in 5000 women and leads to the absence of uterus, cervix and the shortening of the vaginal tract.
So that was one big unexpected whirlwind. From not starting my periods to suddenly being faced with infertility.
I quite honestly did not know what this meant or what to do.
I was referred to a specialist soon after my diagnosis who explained in more detail what MRKH was, how it typically affected the body (there are two Types, I have the more common Type 1) and that there was treatment available if I wanted to lengthen my vagina, which I was told would be needed to have a comfortable sex life.
Dilation is the most common and least invasive process for this (versus surgery) and I chose to start that a few months later. t is important to note that what is right for you and whether you should do this is totally your choice and the options available and best approach should you decide you want to consider further should be discussed with your doctor who can help discuss the options and relevant information for your situation. There is absolutely no requirement to take this step.
I remember first being told about dilation and thinking ‘I need to do what with that piece of plastic?’
It was scary, being presented with some hard phallic looking plastic and being told that to lengthen my vagina I would need to essentially push them, with applied pressure into my vagina 2 to 3 times a day for 15-20 minutes (regularity may vary person to person). It kind of seemed like a joke right? This couldn’t be real, yet it was.
I remember going to the hospital for this as at the time the dilation treatment started with a short stay in hospital so they could help guide you through the process and check on how you were getting on. I remember revising for my A-levels in the hospital in between these sessions.
I needed distractions during this process particularly when the nurse was there too and found myself watching Midsommer Murders thinking this has to be one of the weirdest things I have ever done.
The hospital, the national centre for MRKH – Queen Charlotte and Chelsea Hospital, have a specialist team and I felt well supported from a medical point of view both during dilation and with the checkups yet at the time there was no psychological support for anyone going through that process. I look back now and see how beneficial that would have been.
It was uncomfortable. It was also so painful. Like searing pain. Pain that leads to tears kind of pain
There were a couple of points where I felt like someone was hammering nails into my vagina from the inside.
I was embarrassed. I was doing something no one else at school had to do. I felt like a freak. I couldn’t talk about it with my friends they wouldn’t understand. I didn’t talk about it at home because, well come on, sharing intimate details like that is not easy at the best of times and not something I wanted to share with my parents. I started to wonder why I was doing this and kept reminding myself that this was a step that I wanted to take that for me helped process my MRKH diagnosis.
As I increased the size of the dilator the pain grew for a bit then it would get to a level of pain I recognized as ‘not getting any worse’. The kind of constant dull pain I had come to expect and almost be used to. As I worked my way up through the different sizes I came to realise that the pain did subside. I even got to a point that I then felt comfortable also using my partner which helped immensely. I also invested in a vibrator which honestly was amazing, the vibration seemed to make things so much easier. Suddenly there seemed a light at the end of the tunnel that this weird process seemed to may be nearing the end
In all it took about 8 months to get to a point where I didn’t need to dilate regularly anymore. I admit I was elated. I suddenly felt a little more ‘normal’ (whatever normal is) it felt like this was one step in my MRKH journey that I had some control over and that I personally wanted to do something about. It was important for me to take that step.
There is absolutely no shame in how I felt or how any of us feel using dilators yet of course we are only human and we do feel embarrassment about the process and about talking about it. There is still so much taboo around our ‘private parts’. I for one, along with many in our community, want to help normalize that discussion to help others realise that it is ok. Sex is normal. Challenges during sex or related to sex in some way are also more common than we think because we are never told these other issues exist. No wonder we feel shame and embarrassment when it happens to us.
But it is ok and you will be ok and there is support out there. You are not alone.
If I was to give anyone advice going through dilation now it would be the following:
If you have MRKH and are looking for more information, or to connect with others or just want to say hi, please check out MRKH Connect. We are a charity dedicated to bringing those with MRKH together. Our secure online platform allows you to connect to others via our unique Members Map, chat in our forum, submit your blogs or input to one of our campaigns. We also provide public resources to help connect with the community and their friends and families. We are here for you whatever age or stage you are.
I made my vagina and I am proud.
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