A Coffee and Catch-Up!
Join Sydney and Julianna for a (virtual) hug and a chat discussing all things MRKH! Sydney and Julianna have both lived with MRKH for a year or two and have reflected on that all important new diagnosis phase whilst still adjusting to their diagnoses themselves.
~ Julianna
How did it feel to be diagnosed with MRKH?
Being diagnosed with MRKH may have been one of the hardest things for me to go through. I was 15 and it felt like my whole life was ending. It hurt, and it felt really unfair but after some time you adjust and realise this is just how life is.
~ Sydney
What was the first thing you did after your diagnosis?
Straight after my diagnosis I don’t think it sunk in until I got back in the car and was completely silent. It was when I got home I balled my eyes out for hours and was still distraught the next morning but still made myself go to work to block out my thoughts and focus on something else. I learnt quite soon after that to not block my feelings and thoughts and come to terms with my diagnosis and find out more about it and what I can do to help myself positively. I found it easier to cope with once I had voiced my feelings to my mum and close friends.
~ Julianna
Have you told any of your friends/family?
Yes. I'm bad at keeping secrets anyway but MRKH is a part of me and it was important to me that the people closest to me knew about it.
~ Julianna
How did they react?
Mostly everyone was very understanding, many of my friends made some comments that they meant well with but they sat wrong. Specifically the comment of "at least you can't accidentally fall pregnant" or "at least you don't have a period" always sat wrong with me but people will say things they don't mean harm by. The safest bet is to simply explain why it hurts or sits wrong with you.
~ Julianna
How does MRKH impact your mental health?
It impacted my mental health the worst straight after my diagnosis, I couldn't eat, couldn't sleep unless I cried myself to sleep, I fell into a depressive episode that lasted what felt like months. After a while I found the community which definitely helped but it still affects me for sure. I find myself tearing up or almost fading whenever pregnancy or babies are brought up. I find that days leading up to my check up appointments I talk less, go out less. But the best way to tackle it for me is distraction, I usually try to study but going out with close friends or family works as well, reading, journalling. Anything that works for you is valid.
~ Sydney
Do you have days that are harder than others?
Some days are definitely harder than others. I’ve figured out it can worsen when my hormones are high at the beginning of the month and also when I’m confronted with difficult questions from my boyfriend or family members. It’s also hard when I’m on social media and I can see a lot of people falling pregnant and having babies as that’s what I’ve always wanted to have.
~ Sydney
How do you get through those hard days?
To get through the hard days, I choose self care whether that be to have a long nice shower and do my makeup, binge watch a series or I found talking through things with my mum or boyfriend helps a lot.
~ Sydney
Do you have a partner? If so, how did you tell them and how did they react?
My boyfriend’s reaction couldn’t have been any better. To be honest, he knew a little about my condition before we started dating as I had posted a tiktok about it. But when we actually got together and I told him properly about it all, including its negatives and positives and what our future could hold, he was so caring and understanding of it. He loves me for me.
~ Julianna
Have you made any friends in the community? If so, who?
I'd definitely say I've made friends and connections in the community. I am in the MRKH Constellations Snapchat group and it is an amazing space for everyone. I've found women i relate to and that can support me through the tough parts of MRKH. Along side this outside of MRKH Stars I've also made friends through a conference my hospital held for people with conditions similar to MRKH. The community is larger than you think and everyone is very understanding as we are all in similar scenarios.
~ Sydney
What did finding MRKH Stars do for you?
MRKH Stars has allowed me to know that I’m not alone with my condition and in fact many girls my age are going through similar journeys to myself. They have also given me a platform to talk about my diagnosis and everything along side it and it has helped me a lot.
A final message from us...
We are sending lots of love to every MRKHer out there reading this, especially to those coming to terms with their new diagnosis. We have each written a few words to you to sign off, please don't hesitate to contact us if you are in need of a chat or any support.
"You’re not alone! And it doesn’t make you any less of a woman!"
~ Sydney
"Your life may feel like its over but I promise it isn't. People will tell you ways to make it better and ways to make you feel normal but its your own journey. You aren't alone I promise."
~ Julianna