In early 2021 Alyx Tzamantanis reached out to the MRKH community to write an article on what it is like to have MRKH and why MRKH is a condition that so many won’t have heard of. Passionate about the topic, as she also has MRKH, Alyx spoke to 5 MRKH women and interviewed them with their experiences of what it was like to be diagnosed with MRKH.
This piece provides a small snapshot and glint into life with MRKH through 4 questions:
- When were you diagnosed with MRKH and what were your initial feelings?
- How did your family and friends react when you told them about your condition?
- What was it like the first time you had sex?
- Has MRKH affected your romantic relationships?
Her article was published in Disgraceful Magazine – an online and in print magazine brought to you by a community of women. Disgraceful sets out to support, inspire and empower women, helping women achieve whatever makes them happy.
Here is a glimpse of her article….
The Women Without Vaginas
Mayer Rokitansky Küster Hauser syndrome (MRKH), with its impossibly long name, isn’t deadly. It isn’t visible. It isn’t even detectable in sufferers
until they enter their teens; but for many, it’s devastating. You’ve probably never heard of it, as people with MRKH syndrome tend to deal with it alone, but it isn’t as rare as it may seem.
MRKH affects around 1 in 5000 women and is acongenital condition, completely undetectable frombirth. It is characterised by the lack of a womb and,in most cases, the absence of a fully formed vagina and/or no ovaries. MRKH women are usually diagnosed around the age of sixteen, with no forewarning of the condition and absolutely no idea what has happened to them.
MRKH is tough, to say the least. First of all, you can never have kids. Plus, most sufferers can’t have sex without first going through an operation, or some form of medical procedure. Just say the word ‘dilator’ to an MRKH woman and watch her wince.
In fact, as MRKH women move through their adult lives, the condition is waiting around every corner; a constant reminder that they were born ‘different’. I interviewed 5 MRKH women from around the world and asked them the same 5 questions. This is what they said…
Read the article in full by checking out Disgraceful Magazine (magazine has a small charge)