Kelly, Ella, Zoe and Jo all have MRKH (Picture: Kelly/Ella/Zoe/Jo/Metro.co.uk)

‘It’s that time of the month again,’ Ella told her friend, rubbing her stomach.

Although Ella was 16, she couldn’t bear to tell her friends that she had never had a period – so instead she would pretend.

She thought it would happen some day – she was sure she was just a late developer.

But it wasn’t until a trip to the doctor revealed that she had actually been born without a womb that she realised how serious it was.


Ella had Mayer-Rokitansky-Küster-Hauser (MRKH), a condition which affects one in 5000 women worldwide.

The condition means that the uterus, cervix and upper vaginal canal failed to develop properly when the woman was in the womb.



Women with MRKH have normal genitalia on the outside and usually it is not discovered until they reach puberty.

It means that anyone with the condition cannot carry a baby as there is nowhere for it to grow.

The women usually have functioning ovaries and produce eggs so can have children that are biologically theirs through surrogacy.

Some also need to use a dilator to slowly stretch the vagina over time and others may need surgery to create a vagina from a skin graft, followed by dilation.

Many find it difficult to speak about the condition and they suffer from anxiety, depression and problems in relationships.

But for these four women, meeting through a Facebook support group encouraged them to be more open about having MRKH and helped them to accept what it meant.

Ella, 26, London

I was 16 and I hadn’t got my period so I got referred from my GP to Queen Charlotte’s and Chelsea Hospital in London.

I had an ultrasound there and they found that I was completely female with ovaries but I had a tiny non functional uterus and no cervix, also an underdeveloped vaginal canal.

It turned my life upside down and it was hard to take in.

I think one of the biggest things is the embarrassment at that age. It’s difficult to talk about when you are a teenager. You might already be experimenting with sexual relationships that don’t quite work, and the fact that you aren’t the same as all the other girls who are starting their periods means conversations are awkward and you feel isolated.

I spent about four days in hospital to begin my dilating therapy. It was a traumatic time. I then had to do it for about three months morning and night. My advice to other girls would be it’s worth it in the end. Everything works normally.

I also worried about not having children pretty much the moment I was told, even though I knew I had eggs and there were options. When I was 17 or 18 and still now, I would cry a lot about not being able to carry a child.



You grow up thinking this is something every female will do one day. I think being told you can’t just makes you want them because it’s been taken away from you.

During my last years at school and at college, I didn’t cope well with the mental struggle. Queen Charlotte’s and Chelsea Hospital provided emotional support and I saw a psychologist for cognitive behavioural therapy, which helped.

I think I experimented a lot more with relationships than I would have had if I didn’t have MRKH. I didn’t care about my body at all. It didn’t work as it should so why would I? It was also a case of me wanting to feel normal and wanted.

I have suffered from a lot of anxiety and depression with MRKH and I didn’t tell my friends the name of the condition until a few years ago because I was scared of them googling it.

I felt like it was a bit of a taboo but speaking about it with other girls online has helped me talk about it a bit more openly. The reactions from loved ones have also been incredible. I wonder why I didn’t tell them sooner now.

MRKH can consume you and make you feel isolated.

I had a poor relationship with myself, and I punished my body for what it couldn’t do, which completely ruined my mind. I wanted to block it out, in any way I could. It got to points where I felt like I couldn’t cope any more, but so many things in life are worth living for.


I’m 26 now and I have been with someone for three and a half years.

He’s incredibly understanding and he completely gets me. He makes me feel stronger and is the reason I love myself more for who I am.

I feel lucky that I have my own eggs and that I can have my own biological child through IVF and surrogacy. When we are ready I would like to go through Surrogacy UK. I’m also in absolute awe of surrogates.

I am daunted by it and I know it’s going to be a really emotional rollercoaster but I am excited about that different journey. I would also love to adopt, I think I would want to even if I didn’t have MRKH.

Other people having babies does remind me of what I will never go through, but this doesn’t take away my happiness for them.

After 10 years, I feel like I’m growing with MRKH rather than it overwhelming me. I’ve travelled the world, and have a fantastic career. I have pushed myself beyond belief.

I have people around me who have empowered me to be the best version of myself.

The most frustrating thing is that it’s not well known, even GPs don’t know about it and you have to explain every time you go there.

I’m personally still getting used to being open but I feel better for sharing it and I want to reach out to others.


We are all over the world and need to support eachother. There are great online pages and charities that are connecting us. I set one up to meet a group of girls in London soon.

I’ve never had any close friends who share the condition and who fully understand so I am really excited.

I am sharing my story because I want to be who I needed at 16.

Joanne, 31, Hillingdon, West London

(Picture: Joanne Costin/Metro.co.uk)

I first found out I had MRKH when I was 17. My mum was worried I hadn’t started my periods and the GP had been saying for over a year that I’m just a late starter and it would happen but my mum knew something was wrong so demanded a referral to a gynecologist.

I had various blood tests, examinations and an ultrasound that confirmed an absent uterus and cervix.

The consultant that diagnosed me basically said I could never bear a child and that was it – I was discharged from hospital care. He didn’t even give me a name for my diagnosis. It was three years later I found out what my condition actually was.

For as long as I can remember I wanted babies and I had always assumed I would be a mum some day.

However when I was diagnosed I basically shut that right down and kind of had the view that I never wanted children anyway. I think that was a defence mechanism and my way of coping.

It’s been a really long road. I harboured a lot of emotions and pretended I was okay.

I turned to alcohol massively because I thought I was having fun but in reality it helped the painful emotions and it made me feel good and confident.

I would seek attention when I was out to gain better self esteem. I guess it was a way to make myself believe people would like or love me, regardless of my diagnosis.

I became depressed and at times a little suicidal. I just couldn’t understand why this was happening to me.

When I was 20, I had enough and figured there must be support for me, so I googled it and came up with MRKH and found my saviours at Queen Charlotte’s and Chelsea Hospital (QCCH)

On my first appointment I was dropped with another bombshell. Usually girls born with MRKH are born with either absent or shortened vaginas and mine was shortened so I would need an inpatient stay for treatment.

All the professionals at QCCH are amazing and still are 11 years on I still get regular emails, but I feel that the lack of support initially and lack of referral to QCCH in the first place made it so much harder for me.

I was left for three years with a condition I didn’t understand.

I completed the treatment and had so much counselling with them once a week for about a year and now I’ve accepted it. I embrace my diagnosis I’m not ashamed of it.

I worked in maternity for six years and in some ways it helped me massively but it was really hard for me. In my mind, I thought I can’t have a baby myself however i can help and support ladies that can.

Sometimes it’s hard when friends and family members are having babies but I’m genuinely happy for them.

I have suffered a lot of anxiety and panic attack disorders over the last five years but I’m coping so much better now.

(Picture: Joanne Costin/Metro.co.uk)

I’m still really hopeful that I’ll be a mum one day. Surrogacy has never really been a route I’ve wanted to go down.

I feel like it’s really complicated, it’s costly and there’s so many legal issues around surrogacy. It’s just not for me.

I’m hoping to adopt in the future. I know that a child doesn’t have to be biologically yours to love it just as much and there’s so many children out there that need a loving home.

I am in a relationship now with a wonderful man who supports me through and through but telling him petrified me.

My diagnosis caused so many problems in previous relationships that I had my heart broken so many times and I developed a fear of abandonment so afraid that yet another man would walk out on me because of it.

I told my current partner in dribs and drabs never really coming out with the full story to see how he would react to small snippets but he now knows everything now and he is wonderful about it.

He loves me regardless of my diagnosis, he supports me through all of my bad days which I still have occasionally.

I believe everything happens for a reason and my MRKH is a part of me, it’s who I am I’m not ashamed of it I embrace it so much, I don’t let it control me anymore.

There’s so much more support out there now than there was before and there’s more of us coming out as a group and supporting each other it’s amazing.

Kelly, 38, Liverpool

Picture: Kelly Burns/Metro.co.uk)

I was diagnosed with MRKH in around 1995 or 1996 when I was about 15 or 16 years old.

At first it was a shock as I’d never heard of the syndrome before. I had been referred to find out why I hadn’t started my periods so to be told I actually didn’t have a womb was a lot to take in.

I’d never really given having children much thought when I was diagnosed as I was so young and so it wasn’t on my radar so to speak.

It was one of those things that I always thought of maybe one day I will with the right person so to be told that MRKH affects my fertility was something that I just took in my stride as my philosophy became you can’t miss something you’ve never had.

It has definitely had an impact on me since I was diagnosed, due to not being able relate to other women when they talk about periods and pregnancy but I don’t let it get to me.

As I have never known any different, I don’t let it affect me in a negative way as I feel, this is something I was born with and it has its advantages as well as it’s disadvantages.

I feel surrogacy is a wonderful thing and a gift as it’s a big thing for a woman to do to enable women like myself to actually have their own biological child.

As this is one of the few options I have to have my own child, then it is something I would consider if I wanted to settle down and start a family. It would all depend on the situation and status of any relationship I was in.

I’ve always been honest and upfront in relationships about my condition from the outset and brought it up as soon as I’ve felt comfortable too.

Usually within the first few weeks, I mention it as it can be a good conversation starter and I can educate people at the same time, due to it being not something that is openly talked about.

Zoe, 28, North London

(Picture: Zoe Kyriacou)

I had constant pain on the left side of my ovary and was always told it was due to a cysts but during that period I was struggling to keep anything down – I had multiple visits to the GP and hospital but no one really seemed to be able to establish the problem.

I found out at the age of 14 just before my 15th birthday following my visit to the University College London Hospital where they had informed me that I had to have the womb removed as the horn will never function.

At that age I found out I felt useless, hopeless and like no one will ever want to be with me as I am unable to have children.

I blamed my mum for a very long time after being told I had MRKH as being under the age of 16 at the time I was unable to make the decision myself.

I wanted them to try whatever was possible to try to connect it and make it a functional womb but that was never possible.

My mother had made the decision for me to have key hole surgery to remove the horn of the womb along with the large cysts that were sitting on my left ovary.

I’ve always wanted to have children even from the very young age of when I was finally diagnosed.

Since my diagnosis I have found it extremely hard to deal with not being able to conceive my own child and have always felt like a failure or that I will never be accepted by someone as I’ve always believed that the minute I open up and tell someone that I love that I’m not able to have children, they will run away.

I have accepted surrogacy as being one of my options in having children and I have already started looking into how much it will cost to freeze my eggs for when I am ready to follow the process through.

I would give anything to have my own child one day.

Currently I am not in a relationship. I split up with my partner a little while ago.

I never actually told my partner at the time face to face as I was far to embarrassed so I found it easier to do it over text. I think now if I was to have to tell another partner it would be a lot easier for me to do this face to face.

My partner at the time was understanding and always came along to the meeting and hospital appointment and would always reassure me that he loved me for me and we would one day make sure we had our own child.

As I have grown older I believe that I would be able to speak to anyone about my condition now as hard as it is.

I still have my off days but I am much more confident and open about it.

I believe it was roughly two years ago now where there was an open day at UCLH which I had attended to and I spoke out to a group of other ladies with the same condition about my journey.

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