Understanding MRKH:
A Gentle Guide for Young People
graphic by Mind Over MRKH
What is MRKH?
MRKH stands for Mayer-Rokitansky-Küster-Hauser syndrome. It's a condition that some girls are born with, and it mainly affects the reproductive system. People with MRKH usually have a vagina and/or uterus that didn’t develop fully, or may be missing entirely. But here’s something important to know:
You are still fully female.
MRKH does not define your worth, your womanhood, or your ability to live a full, beautiful life.
What are the 2 types of MRKH?
Type 2 MRKH affects more than just the reproductive system. Along with the absence or underdevelopment of the uterus and upper vagina (like in Type 1), Type 2 can also affect other parts of the body — especially the kidneys, spine, and sometimes the ears or heart. This means you might have one kidney instead of two, or your spine may have a condition like scoliosis. Not everyone with Type 2 has the same additional features, so doctors usually do extra tests (like an ultrasound, MRI, or kidney scan) to check what’s going on in your body.
When is it Diagnosed?
MRKH is often discovered when a girl:
- Doesn’t get her period (usually by around age 15–16),
- Visits a doctor for related concerns like period delay
- Or during other medical check-ups or scans.
What causes MRKH?
It is fully congenital. MRKH happens during early development in the womb. It’s not your fault. It’s not something caused by anything your parents did or didn’t do. It's simply something that happened during the body’s early growth stages. Scientists are still learning more about why.
What parts of the body does it affect?
In MRKH Type 1:
The uterus (womb) is usually small or absent.
The cervix and vagina might be shorter or not fully formed.
Ovaries are usually present and function normally — which means your hormones, puberty, and feelings are all valid and real.
Most people with MRKH still have normal secondary sexual characters.
However, MRKH Type 2 is a little different and can also affect:
How might MRKH affect your life?
You might not be able to carry a pregnancy — but many people with MRKH explore other paths to parenthood like surrogacy or adoption.
You might need vaginal dilation or surgery if you choose to have penetrative sex in the future. But it’s always your choice, and there’s time to decide.
Emotionally, it can feel heavy at first. You might feel alone or confused — but you are not alone.
Is there a community?
Yes! There’s a strong and loving global community like MRKH STARS !!— full of people who get it. Many others are walking this journey too, and there are support groups.
What are the next steps?
After your diagnosis, here’s typically what happens:
Medical testing: Your doctor may recommend more scans or exams to check your kidneys, bones, and overall health.
Specialist referrals: You might meet with a gynecologist who knows about MRKH, and sometimes other doctors (like a kidney specialist or psychologist).
Exploring options: Over time (and only when you're ready), you can explore options like vaginal dilation therapy, and later, choices around intimacy and family-building if and when that becomes important to you.
Everyone processes their diagnosis differently, and that’s okay.
What support might I need medically?
Medically, your support depends a bit on whether you have Type 1 or Type 2 MRKH — but in general, here's what’s helpful:
Gynecologist familiar with MRKH: They can help explain your anatomy, guide you through treatment options (like dilation therapy if you choose), and answer intimate or personal questions.
Imaging tests (MRI, ultrasound): To check your kidneys, spine, and other areas that may be affected, especially in Type 2.
Emotional/mental health support: Talking to a therapist or counselor who understands MRKH can help you build confidence, cope with tough feelings.
Peer support: Being connected to others with MRKH — through support groups, online communities, or meetups — can be incredibly empowering.
A Message from Megan...
Answering the tough questions:
"Why me? Am I the only one who has this? What does this mean for me? What am I going to do for the rest of my life?"
Megan Westphal,
MRKH Stars Advoacy Coordinator
Why Me?
Why me? Am I the only one who has this? What does this mean for me? What am I going to do for the rest of my life?
First, I want to acknowledge that asking these questions is completely valid and normal. MRKH is challenging to process. When I was first diagnosed, I also felt so alone. I wondered how anyone else in my life could possibly understand what I was experiencing. And the truth is, not everyone could understand. Living with a condition like MRKH can feel extremely isolating.
I remember the first time I met others with MRKH over Zoom through an MRKH Connect meeting. (Please note that my attending this meeting was years after my initial diagnosis!) As tears filled my eyes seeing others with MRKH on the screen, I finally realized that I was not alone. The moment was surreal.
1 in 5,000 people with MRKH may seem like a small number, but when you take a moment to think about it, is it really that small? MRKH affects people from diverse cultures, racial and ethnic backgrounds, ages, and life experiences worldwide. In other words, MRKH doesn’t discriminate. It impacts a wide variety of people, and it just happens that you and I also have MRKH.
It’s hard to know all the answers right now as you look toward the future, and it’s okay not to know where life will take you. Give yourself time and space to process your diagnosis and make these decisions when you are ready to do so. No one should pressure you to make decisions when you are not ready to do so. That being said, you don’t even have to make any decisions if you do not want to!
After all, this is your journey—and your journey only! There is no rush, so do whatever is right for you.
Yes, everything may feel unbearable right now, but you will get through this pain and find more of yourself on the other side. Please hold on, knowing you can always reach out to us at MRKH Stars for support when you need it. We are here for you!
~ Megan x
