My body. My choice.

Kristen picture

I think back ten years ago when I was sixteen to the moment I was first diagnosed with MRKH, and the whole thing seems like a blur. I can’t remember much besides feeling overwhelmed and completely confused, and I struggled with a strong feeling of isolation for a long time. It wasn’t until just after my twenty-sixth birthday that I found the Beautiful You MRKH Foundation and suddenly my eyes were opened to just how many women there were in the world struggling with the same things I was. It was such an incredible feeling to know I wasn’t alone! One thing really stood out to me, though, as I developed relationships with these women online… everyone I spoke with had already resolved their “not being able to have sex” issue. Whether by surgery or dilation, it seemed that they had all done something.

I am almost twenty-seven years old and have still done nothing to resolve that issue.  And I am okay with that!

The main reason I did not have anything done when I was first diagnosed was because the doctors who diagnosed me knew nothing about MRKH.  It was apparent that I was the first woman they had met that had the syndrome, and they didn’t have much information for my mother and me on what to do.  One doctor did mention that there may be a surgery that could be done, but he didn’t know anything about it and he had no information for us on who to talk to about it.  Basically, they explained to me what was different about my body, told me it was “very rare”, and sent me on my way.  My mother and I spoke about it, and I decided that it wasn’t something I really wanted to pursue at the time. Had I been adamant about getting it fixed, I know she would have searched everywhere for a doctor to help me. However, I was dealing with enough just with the diagnosis of MRKH and I did not think that adding the stress of a surgery on top of it was the right thing to do (at the time I was not aware dilators even existed). So I just pushed it to the back of my mind.

As I got a little older, I started thinking more about it. I knew that I would have to do something about it eventually, but I honestly just didn’t think I was ready. I saw a doctor when I was 20 who mentioned that there were options for me, and I told him I wasn’t interested. He seemed a little surprised by that… but when it came down to it, it was my decision. He tried talking with me about it, but I brushed him off.  I wasn’t going to change my body because a doctor said I should. It’s my body, and I wasn’t going to allow myself to feel pressured to change something I wasn’t ready for.

Once I hit twenty four, I thought I was ready to discuss my options. I spoke with a gynecologist, who referred me to a big hospital in the closest city. He wrote the information down on a card and I left with it in my pocket. I stared and stared at the card for weeks, willing myself to make the phone call. And then I realized, “if I have this much anxiety over this, maybe I am still not ready!” So I tucked the card away.

This year, at age twenty-six, I “came out” to all my friends and family about having MRKH, something I had kept mostly hidden for the ten years since my diagnosis. As I shared my story and spoke with other MRKH sisters I found through the Beautiful You MRKH Foundation, I really started to come to terms with my diagnosis. I started feeling more comfortable with it, and with myself.  And it hasn’t been until this point in my life that I have really started to accept the body that I was born with.  And now that I have begun to accept my body… now I feel like this is the right time for me to explore my options.

I understand that every woman is different in how they handle MRKH, and waiting like I did was a personal decision that I made for myself.  I do not regret my decision to wait.  I am glad that I waited until I was comfortable with my body before making any big changes to it. I am happy that I did not allow myself to feel pressured by others to do something I wasn’t ready for. And more than anything, I am thrilled that I have the support of so many MRKH sisters standing behind me.

Unlike when I was sixteen, twenty, and twenty-four, and feeling anxious and terrified at the thought of having anything done, I feel excited when I think of the prospect of getting this process started. I feel like I truly waited until the time was right for me, not for when anyone else told me it was right. I’m finally ready for this next chapter in my life, and I can’t wait to start it!


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3 Responses to My body. My choice.

  1. Susan says:

    I meant to tell you that the doctor who did Emily’s surgery is dr. Kropp at children’s hospital in Oklahoma City. Women come from all over to have the surgery. I think he’s the only one who does it that way.

  2. susan mrkh says:

    its lovely i have also diagnosed with it at 19 and know am 20 but there is no exposure about mrkh in kenya, still living in denial sue from kenya.

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