The ‘Markings’ of a Good Life

My land legs are a bit wobbly as of late- and when I say land, I mean life and when I say wobbly, I mean vulnerable. I am essentially feeling vulnerable in life. When you have committed to exploring one’s self, you tend to uncover more than you bargained for but the commitment is involuntary and there is no going back. The journey to self-love is similar to soft-sand running – the views can be beautiful and you know that you are toning the jiggly bits but it can be an exhausting process- muscles ache, skin hardens and it’s nothing like the movies portray.

MRKH, a condition which has been explained to me as a ‘genetic pot hole in the road’ has been a mammoth and gruelling process of self-acceptance since being diagnosed in my late teens. Being told at such a vulnerable and innocent age that you were born without the certain ‘parts’, that instinctively and innately define us as a ‘complete’ woman, was nothing short of harrowing. Though this no longer burdens me, it’s the scars that do.

No-one ever really stares as such or asks the uncomfortable questions. It could be in my head? Though, for something which is apparently quite ‘common’ in a teenager’s life, I haven’t seen anyone with scars of self-harming. Friends say, ‘could be anything- you could of fallen into something’ – yes, a razor blade lovely ones! However dark humour aside, I do see their kindness and I love them even more for wrapping me up in this beautiful and unconditional way but frankly, I am really upset that I chose to brand myself in this way. The process of self-acceptance has rattled me in a way that I simply did not anticipate.

So, where to from here? I tackle this in the only ways I know how- I up my yoga practice, I swim alone and be okay with that, I wear shorter sleeves on purpose and try to say thank you at compliments rather than ‘hump’ in the opposite direction. When I go on a date, I try to have twinkly eyes as opposed to internally rehearsing scripts of apology when my past is uncovered – do I say I had a difficult teenage life? Do I say how I’ve come through the other side? Do I not say anything and wait for the question to be asked? Maybe the question need not be asked?

Only recently, I was walking to meet one particular boy for a Sunday afternoon of ocean frolicking and summer silliness. But as I approached the beach, I so very nearly turned back. Why? Because there was a chance we may go for a swim. A swim! I would have to deliver my script, unclothe my past, absorb the stares and risk a potential opportunity for love.

When did my fears become so profound that I would deny myself such precious moments where the ocean and summer were to be deliberately avoided? This is when I chose to change my script.

Self-harm is not attention seeking or abnormal (as one date uttered under his breath at the end of a meal). It is not a weakness or a reason to be ashamed. My shame is stale and expired. For me during that sad time, I was finding an expression when I didn’t have the tools to do so in any other way.

My expression was fear and a simple sadness at ‘not feeling good enough’. I did this practice alone; quietly. I didn’t understand it. I just know that when I do peer down at the scars that will never go, I have an opportunity to embrace and love all that I am. And all that I will become.

As for self-love- It’s a daily mantra and opportunity to be kind to me. I will no longer apologise or fear moments in my life for I am here, sitting in a precious coffee shop surrounded by laughter, sticky-treats and books. Last night I called my parents and today I will head back onto the yoga mat with my mermaids and special one’s.

As for falling in love – never has there been such a perfect moment for my own little love affair.


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Kristen X2 Shares Their First Experience Attending a BYMRKH Meeting in Seattle!

Kristen X2 - 1  Kristen X 2 - 2

Hi my name is Kristen. I’m 33 years old and at 16 I was “undiagnosed” with MRKH because they didn’t have the information on it that they do today. I was told I was one in a million, and I suffered alone.

A year and a half ago I decided to try and research it again, then I found Beautiful You MRKH Foundation and was able to diagnose myself. For the first time in 16 years I knew there was someone else in the world like me. After a few months some of the women in the Facebook group had a meet up thanks to Kristen Peterson and the Beautiful You MRKH Foundation. It was a wonderful experience. Then Beautiful You MRKH Foundation had a conference in Seattle. I was so excited to be able to go, I had wanted to go to the conference on the east coast but was unable to make it work.

I am so thankful that they made it to my side of the states because this experience was one of the best experiences of my life. To be in a room full of women who know exactly what you’re going through and what you’ve been through is indescribable. To be able to hear from a doctor who actually knows what they’re talking about and can give you information you never had is amazing. But my favorite part by far is the bonds you make with fellow warriors and you have an instant bond with someone you’ve never met before. You aren’t uncomfortable, or worried about trying to explain “what’s wrong with you”, you don’t get the look of sorrow or pity or confusion. You just have a sister.

This was a beautiful day for me and I’m so thankful I was able to go. I would encourage all other MRKH warriors to go to a conference if they can, it is a day that will change your life in such amazingly wonderful ways. I can’t wait until the next conference.

-Kristen Gilliam proud MRKH Warrior
Keep calm and warrior on!


I had the pleasure of attending the Beautiful You MRKH conference in Seattle, Washington this past weekend. It is not the first MRKH conference I have ever been to, however it is the first MRKH conference I’ve been to with my mother and that BYMRKH hosted. Her and I were chatting afterwards about the experience, and she commented at how amazed she was by all the love she saw between the women there.

It got me thinking about what an incredible thing the MRKH sisterhood is.
Who else can comprehend what we go through, but someone who has gone through the same things themselves? There is emotional healing in something as simple as a hug shared between MRKH sisters. There is healing in sitting in a circle with a group of women who all walked into the room as strangers but make an instant connection… an instant friendship… solely on the experiences they share.

Whenever I walk into a conference, I never feel as if I am walking into a place filled with people I don’t know. I walk in knowing I am entering a place full of people who know me, in ways that other people can’t. They may not know the details of my life… where I work, who my friends are, my love of Netflix… but they do know the struggles I have faced and am facing, the trials I have had to overcome and may need to overcome in the future. They know my tears, because they have shared them. They know my pain, because they have felt it too.

They understand the parts of me that I may not even fully understand for myself yet.

I can’t say enough how incredible of an experience it is to meet other MRKH women. It is something I never realized I really needed until it happened for the first time. And a conference is such an added benefit, because it is a place and time where everyone meets with the same purpose: to find support, to gain knowledge, and to be in a place where they are truly understood.

I am thankful for the BYMRKH conference this weekend. Every hug shared, tear shared, and laugh shared is a special memory that has brought a smile to my face in the days after. It is a place of healing, and the peace that comes over me during a conference stays with me in the days after, as I am again reminded that wherever I am, I am never alone, and never far from the sisters I hold so near to my heart.

-Kristen Peterson

Posted in acceptance, hope, infertility, MRKH, MRKH sisterhood, MRKH Warrior, Seattle, sisterhood | Tagged , , , , , , , , , | Leave a comment

Keeping Secrets

Keeping Secrets

I was 16 when I was diagnosed with MRKH, already struggling to dig out my niche in the world. The doctor explained to me I was born without a uterus and vagina, would require either dilation or reconstructive surgery to create a vagina, and would never have children the “normal” way. I remember crying in the car on the way home. I was stunned and scared. Then I was filled with anger, resentment towards God. For a long time I felt I was being punished. Then came the shame. I wore it like an invisible cloak on my shoulders. I can tell people I’m unable to have kids, but the words, “I was born without a vagina,” will not pass my lips. I went to a Beautiful You MRKH Foundation conference this past April in Michigan. For the first time in my life I met other women diagnosed with MRKH. I sat and listened to their stories, shared tears and laughs with them. These were my sisters, fellow women struggling with the same emotions I had. I still couldn’t tell my own story.

Keeping my diagnosis a secret was my own doing. The doctor never said not to tell and I do not remember my mom saying not to as well. But I was scared of people’s reactions. This proved true for me rather quickly. Several months after my diagnosis, I got a call from a boy down the street. He was a year or two younger than me; my brother and I had often played together with him. He said my ex-step-dad had told his dad some things about me. The boy asked if I had a “hole down there.” Luckily I didn’t drop the phone, but I quickly muttered something along the lines of “yeah, I had a hole” and hung up the phone. I then left the house and walked the 5 blocks to my ex-step-dad’s house to confront him, crying the entire way. He admitted to telling just a few people in town about my MRKH. Now, at this time I lived in a small town of about 500 people. Gossip travels fast. I was pretty sure at that point almost everyone in town knew my secret. Even if no one knew, I still felt he betrayed me by telling others about my secret. I told my ex-step-dad he had hurt me and that I would never forgive him. I cut off contact with him.

As stated earlier, the main reason why I don’t tell others the complete truth about my MRKH diagnosis is that I’m scared of people’s reactions. I’m afraid they will look at me with confusion or disgust. Or like the boy many years ago, ask me questions they have no business asking. Or, they will simply leave me. My biological father left my mother while she was pregnant with me. I grew up wondering what it was about me that he couldn’t love. If I told others about my MRKH, I believed it would give them one more reason not to love me.

Not talking about my diagnosis contributed to my depression. I felt broken, alone, abnormal, unworthy. I engaged in self-harming behaviors. At 24 I attempted suicide. I survived. It took me a few more years to realize that in order to love myself, I had to love everything. I’m 36 years old now and I’m still learning to love all of my flaws. I’ve accepted my MRKH but I’ve never fully embraced it. A year ago, I found several MRKH support groups on the web and on Facebook. Reading the stories of other women has given me the courage to speak my own words. This is me finally shedding my cloak of shame. By sharing my story I hope that young women newly diagnosed with MRKH do not have to struggle with the secrecy and shame as I did. We are all beautiful and we are all worthy of love.


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I am Tired of Hiding

While I imagine that most will continue past this post, I hope you’ll stop and read it. It contains brutal honesty and personal info; be prepared for a giant case of TMI. Most guys will probably want to scroll past, unless you’re interested in reading about genetic disorders.

As many of you know I have MRKH, also known as; congenital absence of the uterus and vagina (CAUV), genital renal ear syndrome (GRES), Müllerian agenesis, Müllerian aplasia, Müllerian dysgenesia, or Rokitansky syndrome.

In the simplest terms, MRKH means that something happened between 6 to 18 weeks in gestation that caused my reproduction organs to develop improperly. At this same time hearing, other internal organs and skeletal parts begin to form. For me this means not only did a vaginal canal and uterus not develop as expected, I have joint and spine problems, as well as being completely deaf in my right ear. I also have an enlarged kidney that rests where my uterus should be and I have the bladder of a five year old.

Why am I sharing this with you? I’m sharing this with you because I am 1 in 5,000. I want everyone to understand why Tom and I have passed the four year marriage mark and don’t have any children. I am tired of hiding.

In order for Tom and I to have a fulfilling sex life I have to use silicone dilators to create and maintain a normal vagina. In order for us to have biological children, I will have to under go IVF treatments, except that after egg retrieval and fertilization, another woman will have to carry our embryos.

Why do I share this? Because many US states have laws in place that make it practically impossible for couples like Tom and I to have children. They don’t understand how a female can have working ovaries, but not a functioning uterus.

I share this because I have sisters in the Middle East who can’t get dilators and who are forced to stretch their vaginal area through natural intercourse (very painful FYI.) These same women, if they are able to get dilators do not receive the proper instructions on their use. My sisters don’t even have access to KY Jelly or lidocaine to ease the pain of dilation.

In some places their are probably women who don’t even know they have MRKH and who are being treated horribly by their societies for being “other.”

I share my very personal condition so that you will see and hear about MRKH. So that maybe together we can help my sisters who live in stricter cultures. Maybe through my brutal honesty we can help these women get the supplies and education they need to lead healthier lives. And yes, an enjoyable healthy sex life can lead to overall health.

-Brittany A. Boone

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MRKH Supporter Runs Half Marathon to Raise Money and Awareness for the MRKH Community

cory run 2001  cory fun

cory and brandon color run cory - color run green

Long time MRKH Supporter, Cory Bettis is using her first half-marathon to raise money and awareness for the MRKH community by donating all of the funds she raises to the Beautiful You MRKH Foundation! This amazing and selfless woman is using this awesome opportunity to bring awareness to a condition that few have heard about. Cory will be running in the New River Half Marathon in Todd, NC on May 2, 2015. The location of the run is really special because it’s in the same county where the Beautiful You MRKH Foundation was co-founded in 2011. The Beautiful You MRKH Foundation will always have special ties to the High Country in North Carolina and it’s very meaningful to have our second fundraising run there in the mountains. Please read the interview below to learn more about Cory and her mission to help women with MRKH through her first half marathon. MRKH sisters from around the world will be with you in spirit and cheering you on for your big race on this Saturday! Go Cory!

BYMRKH:  What inspired you to run your first half marathon?

CB: I just turned 26 this year and I have never really set any big goals. After a dear friend shared about the race in Todd, NC, I felt a huge pull to sign up. With not much knowledge gained yet, I committed to the biggest goal I have ever made!

BYMRKH: How did you prepare for your first big run?

CB: In order to prepare for this race, I have been following a running schedule since January 2015. My race is May 2, 2015, so I had a little over 3 months to work my way up to running long miles. Each week I would increase how much I would run by a mile and also make sure to have a couple days to rest. I do wish I could say that I was eating healthier too, but that is another goal I will have to set in the future ;)

BYMRKH: Why are you using this opportunity to raise money and awareness for the Beautiful You MRKH Foundation and help women in the MRKH community?

CB: After signing up for the half marathon, I realized that I could use this goal of mine as a platform to raise money and awareness for the Beautiful You MRKH Foundation. I have seen it done before and I got really excited about being able to help in a way that I would not have been able to do all by myself. I also thought it would help keep me motivated on the days I am having a hard time.

I chose to raise money for Beautiful You MRKH, because I have watched this foundation touch so many women. It is a non-profit that my friend, Christina Ruth, co-founded and I cannot help but feel connected. Although I do not have MRKH, I am a huge supporter and have learned a lot over the years. It would be a wonderful way to educate people here in the High Country (NC) and in my local community about what MRKH is.

BYMRKH: What is your fundraising goal?

CB: I hope to raise $2,000.00.

BYMRKH: Will you be thinking about anything in particular as you run your first half-marathon? Do you have anything to motivate you or inspire you to keep running when you start to feel exhausted.

CB: I will spend more time thinking about this question as the day gets closer, but as a whole, I am running for the women with MRKH. I will keep in mind my friends with MRKH first, but then run with the women in mind that I read about on the Facebook support webpage. I read stories about diagnosis’s, the struggle with infertility, the lack information told to them, the difficulty finding good doctors, the isolation that is sometimes felt, etc. There is a lot unfolded when you are told you have MRKH. I want to run with these women in mind and raise money to help. I also would like to run for all the many blessings gained in just the past few years! What a gift it is to have a non-profit like BYMRKH to bring support to girls and to bring the out of isolation. I think about all the publicity Jaclyn has brought to MRKH through being Miss Michigan and through Survivor. I think about the women who are growing stronger after fighting probably the most difficult thing in their life! There have been many successes and I will be praying as I run that many more successes will be won.

BYMRKH: You have been a HUGE supporter of BYMRKH and the MRKH community. Besides being my dear friend and learning about MRKH initially through me, do you feel that you relate to women with MRKH? If so, please explain.

 CB: To be honest, I do not feel that I cannot relate whole-heartedly. I have never faced a diagnosis such as MRKH. Instead, I feel sympathy in that I feel like I have a good understanding of the emotional hardship women with MRKH face. I personally do not have MRKH and my first instinctual answer to this question is no. However, the more I think about this, I also believe that we all have different battles to face as we grow and mature. In that sense, yes, I do feel like I can relate. We all at times need to lean on someone to help us through those difficult times and that we all grow stronger through them. Is yes and no a bad answer for this question? Ha, I really do feel on certain levels I can and cannot fully relate.

BYMRKH: What is your favorite thing about BYMRKH?

CB: I think Beautiful You MRKH is incredibly important to the emotional well being of those within the MRKH community. It provides a gathering place of support, which I believe is priceless, as well as a wealth of information. I love the connections made through this non-profit and watching my friends gain strength through the friendships made.

BYMRKH: MRKH is a life long journey with highs and lows. Since the day I’ve shared my condition with you, you’ve been one of the most supportive, understanding and caring people in my life and I cannot thank you enough for your endless support. If you could share advice to other people who want to provide a support system for others with MRKH, what would it be?

CB: Hmm, I think my advice would be two simple things. Become knowledgeable on what MRKH is and lend a listening ear. I really feel that there are times that we truly cannot step into another’s shoe, but learning as much as we can and also just being there as a friend is huge. Being there to celebrate the milestones achieved and or being there to hold a hand during the hard times, just being available is valuable.

BYMRKH: Are there any misconceptions that you feel the general public has about MRKH after hearing it for the first time?

CB: Oh, yes. I believe so. I think that with the lack of information provided, a lot of people may quickly draw misconceptions on what MRKH is. There more we can educate each other, the better.

Please visit Cory’s fundraising page to learn more about why she is using this special opportunity to raise money and awareness for women with MRKH.

Posted in awareness, friendship, half marathon, infertility, MRKH, MRKH supporter, North Carolina, sisterhood | Tagged , , , , , , , , , , , | Leave a comment

Q & A with Jaclyn and Jon

Jaclyn Schultz isn’t new to the spotlight (nor is Jon) or the interviews the follow. Now she is turning the tables and interviewing her fiancé and longtime MRKH supporter, Jon Misch. Jon will be presenting at MRKH Day on April 11, 2015 and as many of you already feel like you know him from watching him on SURVIVOR, we want to give you the opportunity to get to know him a little better in this Q & A with J & J!

Jaclyn and Jon        Jaclyn and jon 2

How long were we dating before I told you I was diagnosed with MRKH ?

It was about 2 or 3 months before Jaclyn told me about her having MRKH, but I honestly felt like she prepared me a little before she said anything. She would say things like, “what if you’re not able to have kids?” and would ask my thoughts on adoption. I had already thought about what things may be like if for some reason we weren’t able to have a child, so when Jaclyn told me I had no hesitation in telling her that my feelings for her hadn’t changed and that I wanted to stay with her.

Many girls with MRKH struggle with timing when telling their significant other about their diagnosis. “When is the right time?” Do you have any suggestions?

I can’t say that I think there is a “perfect time” to bring it up, but I do think that preparing me for it helped with my feelings on the situation. Instead of having something suddenly told to me that surprised me, I was eased in to the decision. And I also never felt like Jaclyn had actually held anything from me. We hadn’t talked about having kids, and she had never said anything that lead me on, so there was nothing for me to be mad about, only the simple decision to make: was my love for Jaclyn conditional, or non-conditional. If it had been conditional, and I left Jaclyn when she told me about her MRKH, then she would have been better off, not being stuck with someone who places conditions on their relationship. But thankfully, I made the great decision to stay with Jaclyn, and I can’t wait to see what our lives have waiting for us.

What was your initial reaction after she told you? Did you talk to any of your family or friends about it? And how did they react?

I did take time to make sure and think about everything. Although I didn’t doubt the decision I made at any time, I still thought it was important to understand the decision that I had made. I talked to my mom about it, and she was very supportive of the decision I made. She said there are other options out there for having a child, and if I thought this woman was important, that this should be no reason to second guess the relationship

After diagnosis, many girls are told they will go through a grieving period. As the significant other of someone diagnosed with MRKH, did you go through that period as well?

I don’t feel like I had a grieving period. I was confident with my decision, and was sure that things would work out the way they were supposed to.

As the fiancé of someone so public with MRKH, how has it affected your relationship?

I think that most people see our relationship as something special. The general assumption may be that people are going to feel sorry for you, or something like that, but generally I believe that because it is so public, and everyone knows that Jaclyn has MRKH, people admire our relationship for living with the curve ball that’s been presented to us, and finding a way to move on, and not let it hold our lives back at all.

In terms of coping with the condition, how do you think your relationship would have been different if I did not come out with being diagnosed?

Well, if Jaclyn wouldn’t have come out with having MRKH, I don’t think she’d have had such a passion for helping others. Her MRKH reminds her, and others, that everybody has a cross to bare, and for Jaclyn I think that’s inspired her to be more outward, to show girls that they are not defined by their diagnosis. This is one of the things that I found, and still find, fascinating about her, and one of the reason I fell so much for her.

Adoption and surrogacy are options for women with MRKH, do we plan to explore these options?

YES! And we can’t wait. We’re planning on freezing an embryo after our honeymoon this year 

Is having children something that you always wanted?

I’ve always wanted kids. I have 14 nieces and nephews and helped raise many of them.



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Stay Strong, Stay Positive and Stay Kind

Let me tell you about my life. I am one of very few unique women to be born with a rare condition. The clinical term is Mayer-Rokitansky-Küster-Hauser syndrome but since no one can pronounce that, we call it MRKH. To some people there is a stigma surrounding this syndrome. Yes, I said syndrome not disease, not defect, not flaw, not deformity. I wrote this article to help people who are misinformed, and therefore insensitive, could have a little insight.

Back to the syndrome or condition discussion, the reason I point this out is because we are not freaks or mistakes or deformed or flawed. We are unique and yes a little different, but there is nothing wrong with that. To clear up some things, everyone in our close-knit sisterhood obviously deals with the emotional aspects of this differently; so please if you are curious, tread lightly and be compassionate. Some personal things you should know about me are, no I do not hate women that can have kids naturally. Yes sometimes it hurts to see ultrasounds and pregnancy pictures, but I am not going to diminish someone else’s joy. Children are a gift that should be celebrated.

However, what I do not need to hear from you include the following. I understand that these things are not said to be insensitive, but seriously think before you speak;

“You’re so lucky you don’t have a period. Kids are a hassle you should be glad you have alone time. Aren’t you glad you can avoid the pain of childbirth?”

Now to some subjects that absolutely make my head want to explode. There are a certain few people that I have come across that are down right cruel. Some examples of things that make my heart want to stop beating to stop the hurting;

“Do you really think that’s fair to your husband, what if he wants a family? Did your parents just do drugs or something? What’s wrong with you? So you have to adopt? Isn’t that like buying a kid? Surrogacy? That’s so unnatural and wrong. You shouldn’t mess with God like that. Doesn’t that seem like maybe you just weren’t supposed to be a mother? Don’t you worry a man wouldn’t want to be with a barren woman?”

Yes, those are actual things that I have heard. Most of you that are just uneducated are well meaning, but please choose your words carefully. Something that affects so much of someone’s life is a very sensitive subject and some haven’t had as much time as I have to get thick skin. Be kind, we are just women. We are a little different, we have had a few more challenges than some but we are human just like any other person. MRKH hasn’t changed who I am in my heart, but it has altered my perception and strengthened me. The stigma attached to this is unnecessary with all of the tools at everyone’s disposal. We are a sisterhood of women who are strong, resilient and brave; most of all we are fighters. Don’t feel sorry for us; we do not want pity. We never give up and we will never stop fighting our fight!

To all of my sisters and anyone fighting any battle of their own: Stay strong, stay positive and stay kind!!! Thank you for taking time to read my article. Much love to all of mankind.

-Brittany Bennett

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