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Noémie- MRKH, scoliosis & me

Noémie- MRKH, scoliosis & me

My name is Noémie I am 21 years old and I live in Germany- I’m French but I’ve been living in Berlin for the past year now and I’m loving it!

Two years ago, I got diagnosed with MRKH after not having my period despite being almost 19 years old with a perfectly normal “exterior puberty”.

As a lot of MRKH girls, I kind of knew something was wrong but I was still hoping that it wouldn’t be it since I’ve always wanted to be a mother and I was thrilled about getting pregnant one day. I avoided, if I may say, my diagnosis for the first year. Everything went super fast after that, so fast that I didn’t have time to think about it. I went on vacation with my ex-boyfriend at the time, went back to school, had a busy schedule etc. No place for that little part of me, invisible, I didn’t explain to anyone why I missed a whole month of school at the end of our first year…

I really started getting interested again a few months ago, when I was desperate to find someone to talk to, to ask questions to and to discuss what I have. Ideally, someone who would understand and be like me. I found some Facebook groups at the end of November I think and it changed my life. To see different people, questions everyday popping up on my feed also. The community is so cute and it’s the safe place I needed.

At the end of November I needed more and I wanted to do my part: give a platform for others to share their stories, as well as mine, on my blog. I really like writing and I’ve always dreamed of blogging about things I could help others to deal with It’s not as fancy as having a fashion, lifestyle blog but we have plenty of those.

I got the inspiration to do my part from a former schoolmate who opened her blog on scoliosis and her spinal fusion surgeries and I just thought: why not me ? I didn’t find so many blogs or pages and I just remembered a 19 year old me with that new syndrome my doctors almost didn’t know about. I would have loved to find these kinds of websites so I just launched it ! It allowed me to find other people like me, ready to share their stories also and super enthusiastic about it. As well as Ella’s blog :) My feelings now about MRKH? It’s still quite weird. I’m still young, I have time to worry about having children but with this syndrome time is quite short. You have to prepare things ahead compared to other people because it’s going to be difficult and quite pricey regardless of what solution you want to choose to have children.

But I always tell myself to not torture my mind with that, because I know it’s going to hurt even more one day, that this is just the beginning. So I keep my mind at peace for now. Most of my entourage is not aware of my condition, and I don’t plan on telling them for now. It’s quite private and I promised myself to not tell anyone before I announce it to the person who wants to have children with me. Then we can tell others, maybe.

I’m sad to not be able to tell my best friends for now but I know for sure they’ll feel bad and be sad for me and I don’t want to hear it. I don’t want people to feel any pity, I’m not miserable. One perk of having this syndrome is how tough it made me! I was always a tough person I want to say, mainly because I have difficulties talking to people so I keep a lot for me and go through battles on my own. But with MRKH it’s like having this new challenge that goes on several years and forces you to give your all. Yes, I can’t bear children, but hell it doesn’t stop me from having some ! I still dream about a big house with 4 little children running around.

As a Chrsitian, I felt betrayed by God for quite some time until I switched my mindset. I just imagine God being like:

“OH YOU WANT CHILDREN? YOU BETTER WORK FOR IT SWEETIE”. I also remember that in the Bible it says that God never gives you challenges you can’t surpass. This is also a good mantra even if you’re not a believer !

My main struggle with MRKH (for now) has been my sexuality. I had some “random affairs” but you know, not having a vagina and not having penetrative sex in a society where it’s quite the norm is difficult. I’ve just been learning recently that other forms of sex are totally valid, and I now hate the word foreplay because for me it’s still sex.

I just got an appointment to consider surgery and I’m thinking about the reasons I want to do it: is it for me or is it just a way for me to feel more normal ?

Plus I will be alone and the whole process freaks me out. I’d like people with my condition to remember that the final decision is always yours and to not do things to please others.

I would also like to tell anyone struggling with the syndrome to keep a positive mind. THAT EVEN IF YOU FEEL ALONE OR DOCTORS/PEOPLE MAKE YOU FEEL LIKE YOU’RE SOME KIND OF SUPER RARE POKEMON, YOU’LL ALWAYS FIND ANOTHER POKEMON TO TALK TO! Follow Clair here @clairtheblogger
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