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.


Posted in acceptance, infertility, MRKH, MRKH supporter | Tagged , , , , , , | 3 Comments

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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The Power of ‘Coming Out’

My name is Mell, I am an 18 year old living in Australia with MRKH syndrome and this is my MRKH story.

My journey with MRKH syndrome started just over 2 years ago now when I turned 16. I remember when I was 12; my best friend came to me one morning before school terrified telling me she had started her period. At such a young age it was such a daunting thought and so hard to understand why it happened. As I got older more and more of my friends started getting theirs too. I didn’t think anything weird about not having mine until I turned 16 and it still hadn’t started. I was growing impatient of not getting it yet. I know that would sound so weird for most women to hear but it’s true. I just wanted it so I could feel normal and experience what every other ‘normal’ girl my age was experiencing.
I spoke to my mum about it and how I thought it was really weird that every other girl in my class had got it and I hadn’t. I went to my regular GP and she then referred me to a gynaecologist. I went there the next day and after the examination he knew something wasn’t completely right. He then sent me for more testing until I was then referred to a specialist in Brisbane.

The 19th of July 2013, one of the most confusing, heartbreaking and life changing days I have ever experienced. I remember sitting in the doctor’s office with the doctor and mum and her explaining my condition. It all seemed fine to me and I didn’t really piece together what not having a uterus actually meant. It wasn’t until mum asked if I would ever be able to have kids that it really hit me. The doctor replied no and from that point on I just went into a frozen state. I just sat there and smiled with no thoughts in my head. The 4 hour drive home was the longest and most painful 4 hours of my life. I had just been told that I would never be able to naturally conceive children. It was a lot to take in for a 16 year old girl.

The next couple of months after my diagnosis, I didn’t really think too much about it. I pushed it to the back of my mind and just forgot. Then towards the end of 2014 it kept creeping more and more into my mind and I started dwelling on it more. Then towards the end of the year, over Christmas, I went back to my home town to see my family. My brother and I started watching a movie called ‘Lucy’. There was a scene in this movie that has stuck in my head ever since I saw it. A character in the movie, Professor Norman, is running a seminar about his perception on life and the human race. There is one part of his speech that really stuck to me:

‘For primitive beings like us, life seems to have only one single purpose: gaining time. And it is going through time, seems to be also the only real purpose of each of the cell in our bodies. To achieve that end, the mass of the cells that make up earthworms and human beings, has only two solutions. Be immortal, or to reproduce. If its habitat is not sufficiently favourable or nurturing the cell will chose immortality. In other words, self-sufficiency and self-management. On the other hand, if the habitat is favourable they will choose to reproduce. That way, when they die, they hand down essential information and knowledge to the next cell, which hands it down to the next cell and so on. Thus, knowledge and learning are handed down, through time.’

I don’t know if it is just me but for some reason this hit me hard. I even watched it again a few times to really listen and understand what he was saying. I don’t know why but it really made me think of my life and MRKH. I didn’t feel normal, I didn’t feel human. He said that the reasons humans are on earth are to reproduce, something I couldn’t do naturally. Ever since that day for the next few months I had the constant thought of it in the back of my mind.

I then went through a very tough time trying to cope with it. I couldn’t go a day without thinking about it. When I was alone it was all that was on my mind. I was living away from my family too which made it even worse. My mum was the one person I could open up to the most about MRKH and not having her there by my side with these thoughts in my head was so so painful. I would just randomly break down crying from the thought of it. For people without this condition I completely understand how it could seem like a bit of an overreaction, but it is such a real thing for me and any other lady with MRKH.

It wasn’t until mid-January this year that I realised I needed to stop letting the negative thoughts control my life. This is when I discovered the lovely ladies at Beautiful You MRKH foundation. It was so good to be able to meet and talk to other people who were going through the exact same thing as me. It was so inspirational to see how far some of them have come and it gave me a special drive to reach the same level of confidence as they had about MRKH.

I began talking to more and more ladies with MRKH. And the more that I spoke about it and the more women I met going through the same thing as me, the more my confidence grew about the subject, until I finally felt ready to open up about MRKH to all of my friends and family and I took the leap! I saw a post from the Beautiful You MRKH Foundation support forum seeking volunteers to fundraise for them to raise money and awareness for Give RARE Day. Give RARE Day raises money and awareness for non-profit organizations that support rare medical conditions. I posted a status with my story and asking for people to donate to the Beautiful You MRKH Foundation. The support and love that I received from my friends and family was nothing short of amazing. This was such a big achievement for me, opening up and being proud to be a MRKH warrior. And the best thing for me was that I didn’t care about what anyone else thought about it, or if anyone was judging me for it because I knew I had the endless support of my family and friends as well as my amazing MRKH sisters.

After finally ‘coming out’ about my condition I felt like a massive weight had been lifted off of my shoulders. It changed my whole outlook on the situation as well as MRKH. I no longer felt alone and ashamed, instead proud to be part of such an amazing and inspiring group of women. The support and love that is shown by members of foundations such as BYMRKH is truly incredible. Women that have once faced the same problem as me are standing tall and proud of their condition and empowering others to as well. It has inspired me and made me want to help other younger females through the tough times that come with MRKH, to help them see that they are different in such a special way.
I know that my MRKH journey has only just begun, and the start wasn’t all that great and I know that there are going to be plenty more ups and downs, but that life and you need to push through the bad times and let the good times shine. Living with MRKH is not easy, but with the amazing support that comes from the MRKH sisterhood and my amazing family and friends I am no longer scared of MRKH, but have learnt to embrace my differences and be proud of them and I hope my story can help other women see that there is a happy ending to the darkness that comes with diagnosis.

Thank you for reading my story and I hope you will consider supporting me on my first step on ‘coming out’ with MRKH and helping other women with MRKH by clicking on my personal fundraising page and donating to the Beautiful You MRKH Foundation. ‘Coming out’ with having MRKH was a huge life decision, but I couldn’t have done it without the support, encouragement and inspiration of the Beautiful You MRKH Foundation and the sisterhood they provide for women like me around the world. Beautiful You has given me the strength and courage to share this part about myself and to realize that there is no shame in having MRKH and has given me the confidence to know that I am no longer alone on this journey. Please consider donating here:

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Never. Ever. Settle.

“Ally, where have you been?”

This is what I said to myself last night on the bus ride home. As I continued to ‘IPhone swipe’ between my inbox and Facebook every 20-30 seconds on the humid and cramped 381, I felt this huge pang of disconnect with myself. I had this overwhelming sense that I had become someone addicted to the next email or notification, concerned at the mere chance I may ‘miss out’ or seem too ‘delayed’ in my response to an email seeking advice or support.

Aside from passing my driving test (needless to say I haven’t been behind the wheel since I took that test), I have achieved very little that is tangible and real. I am not academic, I am not particularly good at boys or cooking, I can do a down-ward dog but never ask me to run a cross-country! That is until; I created the Sisters for Love MRKH Foundation in Australia. I found my calling and lives are changing. But in this journey, I have forgotten my story. My empathy is real but I have this niggling discomfort that I am becoming an administrator of my own diagnosis as opposed to a living and breathing example of how self-love and self-acceptance can be found.

So, I am choosing to travel back and remember who Ally was before happiness and peace came, if I am to stay close to the exact cause I write about daily.

I was a self-harmer for six years. Now, bit by bit and each day, I attempt to wear shorter and shorter sleeved clothes. At dusk, I even wear sleeveless, exposing the numerous scars! In my beloved yoga studio, it doesn’t even cross my mind, for I am in the place where judgement and imperfections heal. I grit my teeth on busy trains, whilst onlookers whisper “look at her arms!”

My thoughts simply affirm that we all have a past, and my past is documented in a slightly less than conventional way.

I was someone who counted 200 calories daily from the age of fifteen to seventeen years old. At the 200th, I would eat no more. I was hungry and cold most of the time, but this was my interpretation of powerful and accomplished. I then mastered eating 2000 calories a day, an apparent and well-known ‘flip’ reaction after the hunger became laborious and perpetually exhausting.

In turn, my self-loathing during the summer following my MRKH diagnosis left me with little desire to even brush my hair. I pretended to love heavy metal music whilst sporting black lipstick- it looked terrible. I couldn’t even master rebellion well. Some may consider this predictable and teenage behavior but I was looking to destroy my appearance on the outside to mirror that of my inside.

When I was diagnosed with MRKH, there was a lot of white noise. It was like spinning around rapidly, the way children do in circles and then trying to walk in a straight line, but all day, every day. Without compass and navigation, I would just keep looking down. Researchers have likened post-diagnosis to the symptoms and behaviors associated with trauma. I spent a lot of time after treatment, roaming from friendship to friendship, party to pub. I would spend many nights in busy pub toilets crying one minute, to then wiping the mascara off my face to find someone who would make me laugh the next. “Please, anyone talk to me, make me laugh, turn the music up louder, for longer!!”

It was so very erratic and dangerous. I was a broken girl.

When I became a little calmer and older, I did discover my ‘iron’ like work ethic. One thing I did well was work ridiculously and obsessively hard. The more hours I could work, the more powerful I felt. Some weeks, I would graft for ninety hours plus during my years of managing a student bar back home in Reading, UK. The work uniform was perfect for someone who could not relate to any sense of femininity-baggy jeans and t-shirts. My hair was swept back and oily, no make-up, my hands battered and bruised from beer kegs and deep fat fryers- I was in MRKH denial heaven! No-one wanted to know who I was; most were too drunk to care and I could finally immerse myself in blaring music and lock-in’s.

Since then, I have had two ‘proper’ boyfriends. They were quite normal relationships really; TV shows, food, holidays and clothes shopping. One is a best friend and the other is now married with a child who I only wish happiness and success to. But, one of my biggest revelations and ‘ahhh’ moments came during a writing and yoga retreat I attended one year ago.

I discovered that I chose these people as partners, because in essence, they were not looking for a typical ‘woman’. I don’t mean anatomically (I had taken care if that!), but in their expectation of my role as a girlfriend. I was not looking for anyone who challenged what lay beneath. They did not want a wife or ‘want to be mother’ and I didn’t know how to be either of those. Sure, I told them about the diagnosis but with as much meaningless expression and disassociation as possible. I think this was part of the trauma. It was awful.

And I look back feeling quite sorry for that girl who was so, so lost.

I write this blog now as a single woman – I have taken a pledge with a best friend to find one lunch-time per week where we are to buy one, simple ‘girly-gift’ for ourselves. Just for one day, we are to lay down our warrior gauntlets and nurture the repressed femininity and soften into our blonde locks and blue eyes without weakness or question.

My acceptance is precious. My body is precious. I don’t ever want to be that girl again. Acceptance has been defined as to ‘find rest in’ or to acknowledge a process without protest and if I could add, to simply find a way to look at the pain, and to follow up with love and forgiveness for being so hard on ourselves. Pain, then love.

I wish that I could be there for everyone’s diagnosis and steer them away any form of shame or self-hatred. I wish I could correct people’s stares and unwanted silences, however, we are not to judge those silences; people are doing the best they can with this unique information that we are choosing to share with them.

I do feel sad remembering what happened. But I am a girl with MRKH, sorry, a woman. And like I said two years ago, Becoming Ally was the best thing I ever did. And I cannot wait to see where she takes me next.

A word for all those who are sitting with this reality, never, ever settle!


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