For those of us with MRKH visiting doctors & specialists can be challenging. The time leading up to an appointment can be fraught with anxiety & reminders of previous experiences including the first time we were told we had the condition, or when we have been gaslit by the very professionals we expect to meet us with understanding and compassion.

It is natural to be anxious over this time. We are often put in highly vulnerable situations & are asked to talk about deeply private things. The body wants to protect us. Anxiety is a tool, a way for the brain to run through scenarios to find answers.

So what can we do to prepare or settle nerves?

You can send the “what is MRKH” resource found on the MRKH Connect website.

You can write down questions or comments you want to cover.

You can write down what you want from the appointment.

For me, I have my folder.

I am a very tactile person, so having something to hold onto & hug to my body helps me feel safe & keep me calm.

The front is covered in daisies because they’re a flower that holds a lot of meaning & seeing them makes me feel happy. The words beautiful warrior reminds me I am strong, beautiful & enough just as I am & that I am not alone, I am part of an incredible community of beautiful MRKH warriors.

The back lists some of the titles I have gained in life. Sitting in a waiting room the list gives me something other than pregnant women, children or triggering posters on the walls to look at. It is there to remind me that I am made up of far more than the words MRKH, abnormal, different or infertile & that I can still accomplish so much in this world.

When setting up my folder I accessed my hard copy records from my GP & copied the papers. I now always ask to receive copies of any correspondence or medical results & these are printed & added into my file.

As I have MRKH type 2, there are individual sections for different parts of the body. This helps me keep track & make sense of it all. The paperwork in each section has been put on a flip ring, this helps when discussing something with a doctor to be able to pull out paperwork relating to the part of the body being discussed & easily find the result or correspondence that is relevant.

Also included in the front of the folder is the MRKH Connect “what is MRKH” resource and a brief medical timeline which shows in bold when key parts of my MRKH diagnosis were discovered. Because I received my diagnosis a lot later in life, I also have a statement I can show doctors which explains why I was unable to advocate for myself earlier.

Having this folder is empowering & validating. Often in the past I was gaslit, but now I know I have tangible evidence to backup what I am saying.

The first time I took my folder to a doctor they had never heard of MRKH before. I had emailed them the “what is MRKH” resource ahead of time. When I got there I opened up my folder & held it up so they could see all the tabs & said “MRKH type 2  involves ALL of this” They looked at me shocked & replied “wait, really? Everything is connected to MRKH? ALL of that?”. It finally sunk in & I was able to ask them to approach my medical needs in a more holistic way.

Needless to say, walking out of the appointment that day I felt like a mighty warrior that had just slayed her first dragon!

Emma-Mai xx