MRKH affects around 1 in 5000 women. It isn’t visible. It isn’t even detectable in sufferers until they enter their teens; but for many, it’s devastating.

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 a congenital condition, completely undetectable from birth. 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:

1. When were you diagnosed with MRKH and what were your initial feelings?  

Anna, Australia: “I was diagnosed in 1997, when I was 16 years old. My initial feelings were really just shock and numbness; white noise. I would say even, denial. I think we just assumed that medicine could fix anything, but this wasn’t fixable”. 

Hana, UK: “I’m a Bangladeshi-British Muslim and I grew up in a very conservative household. I was 18 by the time I finally found out I was missing a womb. My doctor was Pakistani-Muslim and he found it ‘too traumatic’ to tell me what condition I had. Ultimately, I was referred to a gynaecologist who broke the news to me very coldly”. 

Caroline, Norway: “I was 16. I remember I felt really awkward going to the doctors to say I hadn’t started my periods, so I slipped it into conversation while I was there for another reason. At the time she said it wasn’t too late to start my period and she wasn’t worried, so she told me to wait another year. So, a year later, after a laparoscopy, the doctor sat me down and explained that I didn’t have a womb. My mum cried. She never cries. I just wanted to go home”. 

Josephine, Kenya: “I was diagnosed in 2016, when I was 21, and my first feeling was just sadness. Yeah, I was just sad”.Claire, USA: I think I was 15 or 16 when I found out. The doctors had just assumed I was a late developer. I wasn’t thinking about kids then, but it’s a shock to find out you can’t have them. They told my mum over the phone. I remember I was watching a film with my friend on the couch. My mum’s face when she walked into the room kinda told me everything I needed to know”.

2. How did your family and friends react when you told them about your condition? 

Anna: “My mum and dad were there at the diagnosis, as was my boyfriend at the time. So they knew about it. But what I find really interesting is that in the first weeks or months after your diagnosis, you don’t really understand the impact of it. Once you start to understand the gravity of MRKH and the associations it has with your mental health, it gets spoken about less and less. It becomes an awkward part of your family dynamic”.

Hana: “I was told to never speak of it. I was made to go to every doctor’s appointment alone and never given any compassion or support from family. My mum and sister strongly believed that I’d brought shame on the family, and my dad was heartbroken; they said I wasn’t even a woman and that no man would ever want me or want to marry me”.

Caroline: “Obviously my mum knew. But it was a bit of an odd thing to tell my brother. I know my mum told my aunties but, as a family, we never really talked about it. I think people didn’t want to upset me; like it was the elephant in the room. I did tell quite a few friends, but my boyfriend took it badly. We were only 17 but he wanted kids some day. He didn’t know how to deal with it and blurted it out in front of all his friends”. 

Josephine: “I told my parents first. My mother was sad, knowing that she would never see her grandchildren. My father was just there. He didn’t even know what I was talking about”.

Claire: “My mom was the one that told me about it, so she knew. I know she told my dad but he never spoke about it. My family knows about it now, but I don’t remember telling them. I used to get drunk and tell my friends, and they’d always be super wasted and offer to be my surrogate! They obviously didn’t really mean it, but it was sweet”. 

3. What was it like the first time you had sex? 

Anna: “I moved to Australia when I was about 17, and I lost my virginity here. I think I felt like I needed to do it away from watchful eyes because I think everyone was kinda waiting for me to say ‘it’s done’. I think the first time I was expecting it to feel more euphoric than it did. But it really wasn’t. When you’ve gone through dilation therapy; when you’ve allowed a piece of Pyrex, or apparatus, or anything to go down there before a human does, for me, it took away the sanctity of it”.

Hana: “My first time was with my husband who is a sweet soul. It took him a long time to break down my emotional and psychological barriers before we could attempt intercourse. I was petrified that he would think I was ‘different’ or not ‘good enough’, as I’d never had a sexual relationship before. I remember bleeding the first few times and then it became easier”.

Caroline: “It was horrible, actually. I didn’t know I had MRKH at the time, and there was a lot of blood. I didn’t try again until after I’d done the dilators. My boyfriend was really patient and it felt so much better than the first time”.

Josephine: “I haven’t had sex yet. I haven’t had any romantic relationships, because I’m always, like, how can I explain this? In African culture it’s not easy to be understood as a woman. So, why should I go through emotional torture? It will be painful”.

Claire: “Oh my god, it was a disaster. I think I was about 15; drunk, at a party at my friend’s house. This guy and I disappeared to a park nearby. It wouldn’t go in and neither of us knew why. He ended up trying to put it in my ass! Luckily, the next time I tried it was with my college boyfriend and he was really slow with me”.

4. Has MRKH affected your romantic relationships? 

Anna: “oh, fucking hugely! I’ve been in therapy for 3 years trying to figure out why I can’t have a proper relationship. I take it back to dilatory therapy. It fucked me up. I never felt desired. I always felt like I was bringing an apology into the relationship. Like I wasn’t a woman. So I allowed men to hurt me; physically, emotionally for so many years, because I didn’t think I was worthy of more. It’s only in the last 6 months I’ve believed that I’m worthy of a happy relationship”.

Hana: “In my culture, a woman who can’t have children isn’t desired. After the initial diagnosis at age 18, my family drummed it into me that no man would want me when they found out I was a freak who couldn’t have children. So, to prevent questions arising, they tried to force me into marrying a guy from abroad who could become legal in the UK; and then he could just divorce me and I’d live life as a divorcee”.

Caroline: “No, I would say no. Maybe I’ve been quite lucky, but I’ve always been quite open about it from the start because I never wanted it to get awkward down the line. Up until my early thirties I really wanted kids; I wanted to find a way to do that. That was always in my mind. I’m now at a stage where I’m childless, but happy”.

Josephine: “I haven’t had romantic relationships yet. To tell you the truth, I’m scared. When I think about what I’ll be going through, it won’t be easy. I’ll be called all sorts of names; mostly by women. When you can’t provide children, they start calling you names”.

Claire: “I want to say no, but it did. My last relationship before the one I’m in now, the guy would say things like ‘you’re too boyish’ and ‘why can’t you dress more like a woman’. I thought it was weird, but then it came out that he was struggling with the idea that I wouldn’t be able to carry his children. He admitted it eventually. I think he wanted me to act more like a woman so that he could pretend for a little while longer that I was going to be a mother. Needless to say, the relationship didn’t last”.

5. Have you pursued having children through surrogacy/adoption? 

Anna: “I did. In 2019 I was looking at freezing my eggs. I was on a uterus transplant trial in Australia and I was in a relationship at the time. I went down the path of egg retrieval; it was really intrusive, but I wanted to give myself options. I plucked up the courage to tell my boyfriend and he said ‘that’s going to be really good for you and your future partner’. At that moment, I went home and threw away all my tests, all my results and I grieved. Re-grieved my infertility”.

Hana: “My husband and I have discussed surrogacy and adoption. We looked into surrogacy, but for medical and religious reasons we couldn’t continue with that route. This led to further loss and new grief for me in accepting the impact of having MRKH. We are open to adoption in the future, God willing”.

Caroline: “My partner and I looked into surrogacy. It’s quite an intense, long process, which we were completely unprepared for. And if you’re not talking about it together, then you’re not sharing your fears and your stress about it, which is what you need in that situation. Ultimately, I think that’s why we didn’t take it further. Now I don’t know if I want to go through that again. I realised having kids wasn’t as important to me as I thought it was”. 

Josephine: “When the time comes, adoption will be the best for me. Surrogacy in Kenya is expensive”.

Claire: “Nah. I thought about it, but I like being the ‘auntie’ to my friends’ kids. I thought about adoption; surrogacy seems strange to me. There are so many children in the world that need a family, so I would’ve opted for that. But I’m not maternal. I never really wanted kids. I just thought I did because everyone around me always seemed so sad that I couldn’t”. 

If you’d like to know more about MRKH syndrome, you can find more information and details of support groups at: mrkhconnect.co.uk, mrkh.org and beautifulyoumrkh.org.