When I tell people that I have MRKH syndrome they tend to look at me with a blank look like the “I like turtles” kid. I’m not surprised, because this syndrome isn’t widely discussed most likely due to the sensitivity of the subject and the fact that the direct cause of this condition still alludes scientists. MRKH syndrome affects 1 in every 4,500 women. Look at us being all unique, right? Disclaimer: This post contains information on the female reproductive system just in case this makes you uncomfortable in any way.
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What is MRKH syndrome?
Mayer-Rokitansky-Küster-Hauser or MRKH is named after the doctors that formally discovered it. I’m glad they came up with the acronym because lord knows I’m not going around saying that long phrase. Essentially, this syndrome is where the uterus is underdeveloped or completely absent while the external genitalia and other signs of puberty are normal. Those with MRKH syndrome are genetically female, have ovaries, and appear to be like any other female on the outside.
MRKH syndrome is highly complex, because there are numerous variations of underdevelopment between patients. Sorry doctors we just couldn’t make it easy for you. For instance, some females have partial vaginal canals while others do not. As a result, they require surgery or dilation therapy to be able to have intercourse. Doctors have also linked MRKH syndrome with hearing loss, heart defects, kidney malformations, and skeletal abnormalities.
Again, this varies from patient to patient. As for myself, I never required surgery. However, I was born with a heart defect that healed on its own and have always had partial hearing loss in my left ear. Since I’m a light sleeper, I use my hearing loss like a superpower and flip on my side to get a good night’s sleep. There’s a silver lining to everything ladies!
How do women get MRKH syndrome?
This is the tricky aspect of MRKH because we are still a bit of a mystery. The most common theory is that it’s possibly genetic, but often there is no family history of the syndrome so the pattern of inheritance is difficult to establish. My family has no history of the syndrome either. The other theory is that it may be due to environmental factors. It’s difficult to recruit MRKH patients for research studies due to the sensitivity of the subject. Learn more.
How and when was I diagnosed with MRKH syndrome?
When I turned sixteen I went to the gynecologist to figure out why I still did not have a menstrual cycle. My doctor predicted that I was a late bloomer like my grandmother and put me on birth control to see if we could jumpstart my period like a car. I was on it for about two years with no success other than giving me fabulously glowy skin.
At the age of 18, they did endless amounts of blood-work on me for six months, but still they couldn’t find any reason for my lack of a period. My doctor tried to physically examine me, but she noticed that I was experiencing a lot of discomfort. She sent me for an external ultrasound instead. When they performed the ultrasound the nurse said I was perplexing them, because they couldn’t find my uterus. They also said that my ovaries were in random locations and not where they are supposed to be. I just thought, what the heck does that mean?
The doctor brought me into her office and told me that the tests indicated that I had MRKH syndrome and she explained that it meant I would never be able to carry my own child. Although, I do have working ovaries so its possible for me to have biological children via surrogate.
I felt a mix of emotions upon getting this news, including relief because the look on her face coming into that room was like she was about to tell me I had a terminal illness. It was difficult to hear, but I was glad to finally have a definitive reason if only to stop feeling like a test animal constantly going into labs and examination rooms.
How do I deal with it?
I’ve done pretty well with accepting my syndrome and laughing it off with humor, if you couldn’t tell by now right? I’m not a unicorn, so there’s no enchantment I can use to change how I was born, so I try not to let it define me. As Dr. Suess once said, “When something bad happens you have three choices. You can either let it define you, let is destroy you, or you can let it strengthen you.” All those years ago, I chose to let it strengthen me.
With such a life changing diagnosis, MRKH syndrome can impact mental health resulting in depression or anxiety. When I first found out as a teenager, I confess I felt like a mutant and like I couldn’t relate to anyone and developed depression. Being a teenager is hard enough, but adding this on top of it was a shock to the system. Over time, you learn how to find the humor in all situations and are able to rise above your circumstances.
Again, it takes time and there is no rush to rise above everything if you have been diagnosed yourself. Understand that my personal journey is not your journey so take all the time you need. I do still have my bad days where I criticize myself and get angry about my circumstances. Yet, for every bad day there far more good ones.
How should you interact with someone with MRKH syndrome?
Treat them like you would anyone else. We are all human and none of us are perfect. With the lack of awareness surrounding MRKH syndrome people usually don’t know what to say. In my experience, people spout out uncomfortable responses such as “well you can always adopt right?”
People mean well, but troubleshooting someone’s syndrome isn’t the best way. Adoption is a beautiful choice, but it is not necessarily right for everyone nor should it be referred to as a default option. Adoption is a highly complex process that doesn’t always result in success due to political or financial issues. Learn more.
Instead, if your friend tells you something deeply personal or vulnerable then I’d suggest a different approach. Something like, “Thank you for sharing that with me. I’m here if you need anything.” That is how you truly support a friend or loved one.
Relationships and MRKH syndrome
I will be open and say that dating is not the easiest thing in the world when you have this syndrome. There is always the inevitable awkward conversation to explain this syndrome. There is no right time to tell a partner. Personally, I am not one to hide my syndrome, because I feel I have nothing to be ashamed of so I explain it early on, but that is just my personal preference.
There have been men in my life that ended our relationship because they didn’t like the idea of myself not being capable of carry their child in the future. Naturally, this is painful and harmful to a person’s sense of self-worth. After years of dating, I now see I dodged a bullet with those types of men. There are plenty of kind hearted and genuine people out there that will care far more about you than any potential obstacles you may face together.
In terms of a sex life, I am very fortunate that I never required surgery. I definitely feel for the MRKH ladies that had to go through that. Shout out to you ladies, because you are rockstars and I’m sending lots of love your way because that surgery is no simple task. If you are curious about how the surgical aspect of this syndrome works then I will refer you to Young Women’s Health.
I hope this post will give you some understanding of this relatively obscure syndrome. While we are 1 in 4,500 women, I’ve never met anyone else with my syndrome in person. Then again you don’t exactly walk up to women asking whether or not they have a womb. We all know that’d be weird. Statistically speaking, I’m sure I’ve passed many of my fellow MRKH ladies without ever even knowing.
If you have been diagnosed with this syndrome please know that there is support out there for you. You are not alone and you are loved. I will put some resources below for more information or potential support groups if you have been diagnosed.
- Beautiful You Foundation
- Sisters for Love Foundation
- Center for Young Women’s Health
- National Organization for Rare Disorders
Do you have a question or comment regarding MRKH syndrome?
Post it below in the comment section.
Hello everyone! I am a Boston based blogger that loves all things travel and lifestyle. You can usually find me working away at my university job, snapping pictures, thrifting, or trying out some new recipes.
Milly Hailstone says
It takes some serious guts to write your story online! You’re clearly such a brave and strong person and it’s amazing that you’ve not let MRKH Syndrome define your life. Keep raising awareness lady, you should be proud of yourself 🙂
Janelle (Simply Nel Belle) says
Thank you for your support Milly!
Thank you so much for your story. I had no idea about MRKH Syndrome. I hope you will get a chance to meet more people who also have the syndrome and getting your story out there will definitely help. It is always helpful to have those who are going through the same thing as you emotionally. I wish you well and good luck.
Janelle (Simply Nel Belle) says
Thank you Jovane. It’s true, not many people know about this syndrome. It’s all about raising awareness! : )
It’s brave of you to share your story. I really appreciate it.
M_of_IVF baby says
I wanna thank you for sharing your story with us. I’m sorry to hear so many of lovely women suffer from MRKH! My case differs, and it was enough to apply for IVF to have our baby. However the close friend of mine is less lucky..She got to know about her ”special state” at 18. I mean, it was when the diagnosis was officially confirmed by her doc. I can hardly find the right words to describe how she felt then. I’m sure that was a kind different perception comparing with nowadays one. You know, when you don’t hurry, you don’t think about your own family and kids…you feel like everything’s still ahead..! I believe she didn’t take it seriously then, neither did I. We both led the lives of happy youngies.. Unless now, when her dh and she got truly ready for kids. This is their obsession now, a heavy burden they’re trying to find solutions to fight with..At times my sweety looks like she abandons hope..But her husband is the rock of support, and helps her through..From what I know now, they’re doing researches a repro center abroad. They are considering to pass surrogacy there (The thing the clinic includes mitochondria donation treatment into the surrogacy package makes their interest even more heated..) Well, I’m just hoping for them and others in the same boat. Stay strong, brave people!
M_of_IVF baby says
Yep. Nel Belle is just amazing! I’ve got to know some details about MRKH too. Though I’m not new to the condition. I mean I have the one from my surrounding who suffers the disease..Poor girl she’s been hiding for so long behind the screen!! Now things changed due to sweet people like you who tell their stories for others, so that they don’t feel alone..She’s currently considering applying for surrogacy..
Sending all my positive thoughts your way!
I think for some people, the desire to have children IS all consuming, while for others it is less pressing but still important. I am not one of those people, but I think the desire is very real. To some degree, genetically and culturally programmed. It is also intimately connected to a sense of self and of sexuality..Feeling whole, not being an outsider or “different,” of not being “defective.” I sometimes marvel at the painful lengths to which people with MRKH will go to have their “own” biological children..
Thank you for being this open with us.
Thank you so much for sharing. I also have MRKH. I also didn’t get a menstrual cycle at the age of 16 years. I went in to get checked out for birth control and told them. They did testing and told me I couldn’t carry my own child due to not having a uterus. I’m now 38 and it still hurts but I know God chose a different path for me. I’m married to an amazing man and I have a 19 year old step son who I helped raised from age 7. I watch all my friends and family having babies and it hurts, I’m happy for them but still cuts deep. Thank you for sharing your story. I’m so happy I came across this. Its nice to know, I’m not alone out here. ❤❤
Janelle (Simply Nel Belle) says
You are never alone! I’m so glad you found this post helpful. Us MRKH sister have to stick together. Take care of yourself!