What I Would Tell My 31 Year Old Self (MRKH Edition)

Sheree Murray

Dear Sheree

I am here to tell you not to worry, but to also not keep your feelings hidden. You always knew something wasn’t right and now right before a busy yachting season you’ve been told you have MRKH.

What the hell even is that right?

I get you never wanted children, but you hate to be told you cannot do things right?

You’ll be angry for a while and will take it out on the people that are closest to you. It’s ok I promise this feeling will pass. You’re going to push it all into the back of your mind for quite some time, but hey, we all deal with things differently. There’s no manual for this.

But you are so bold and brave, and I promise you when you finally start sharing your story with the world, so many amazing connections will come from this, and you’ll no longer feel so alone in this part of your journey.

You are going to connect with so many incredible women in the same position as you. 1 in 5000 might not be so common, but you will realize how common and small the world is once you open up.

There are some beautiful connections and friendships out there waiting for you.

You will become more open, vulnerable and authentic than you ever thought was possible as you have always kept your feelings so hidden. You are growing into such an incredible woman and a force to be reckoned with.

You will find love and peace with all this. You will create stronger friendship than you ever thought possible. You will even create your own businesses that allow you to retire from full time Cheffing. That idea of being a business woman is no longer a pipe dream.

It might not seem it now, with the haze of everything that’s running through your mind after just being diagnosed.

But your future is oh so bright. You are so loved by many and inspiring others daily by sharing your truth.

I promise that all the fears you have now will slowly disappear. Just remember to breathe, take time for yourself and to let others in. It’s all going to be more than ok x

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What I Would Tell My 17 Year Old Self (MRKH Edition)

Mindi Cartwright

Hello my fellow MRKH peeps. My name is Mindi Cartwright, I go by Oreo or Oreoprincess. I’m 25 years old now. I’ve been through a lot already and I’m here for “What would I tell my 17 year old self?” Hmm.. that’s a very difficult question. Not because I can’t think of anything, but because there is so many things I would tell myself. It’s that age where you’ve seen to have gone through a lot and (well for me) was depressed and confused. That age was about the time I was told I had MRKH. I was shocked and felt confused. I felt I wasn’t a woman, that I wouldn’t be able to be in a relationship if I couldn’t provide sex. I was confused as to what I was getting surgery for (Hysterectomy). I’ve argued with other women that I didn’t have to carry my own child to be a woman. Being told I wasn’t woman enough has been very hard on me, as it would on any woman. I was told I wasn’t woman enough by women and men. Life was tough filled with doubts and a consistency of people telling me I wasn’t enough. “I can’t be with you because I think I’ll cheat on you”, “You can’t carry a child? Than you’re not a woman”, blah blah blah….

So after all that being said here is what I would say to my 17 year old self.

1: You are more than enough. You were born for a reason, don’t let anyone tell you otherwise. You don’t have to provide intercourse to keep a man. Love is more than about lust. Don’t let those boys force you to change or perform other favors to win their love. If they really loved you you wouldn’t have to do anything you don’t want to do. Your love is enough. Ok, Enough said with that. 

2: Accept that you’re a weirdo! Truth is we’re all weirdos in our own way.

3: You don’t need anyone’s approval. Neither do you need someone to be with you. Be happy with being alone. Learn to accept who you are and be content with being your own company. Just because you are alone doesn’t mean you should feel lonely. Once you accept this good people will come along. Also, don’t search for love. Let love find you! I promise once you start loving yourself and your surroundings it will all fall in place.

Now young Mindi, know that everything happens for a reason. Let the universe guide you, don’t even stress the path you’ll take! Know you’re in good hands and what’s gonna happen is gonna happen even if you stress about it. Stressing will only make you go through it twice. Somethings you stress about most likely won’t be a big deal or even happen. Embrace life and who you are. Enjoy every second and always stop to smell the roses. Be kind even when someone isn’t so kind. You have no idea what others are going through. But more importantly, be kind to your self. You’re beautiful, kind and a weirdo! That’s beauty! Be you with out needing approval, enjoy yourself. Stay being young and free for the rest of your life. You’ll do great things. You’re going to be successful and I love you.

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What I Would Tell My 17 Year Old Self (MRKH Edition)

Nicole Barriault

Dear Nicole,

I am writing to you from the future. I know how ridiculous you think that sounds, but please hear me out. I actually know much more about you than you realize. This year you are turning 17. You’re almost an adult. I know how much you desire to finally be just that, a real adult, even though you have had to act like one for years now. However, this year your life is going to change completely. In a few short months you are going to believe that you just had your first period. You are going to be so very excited, but then you are going to go to the Gynecologist for the first time and find out how wrong you were.

That first exam is going to be a complete nightmare. I am so sorry for than pain and fear that you are going to endure. The doctor is going to tell you after her exam that she believes your hymen is very thick and there might be blood that is unable to exit your body so she will ask you to come in the next day for an ultrasound. After the ultrasound the doctor will call you into her office and solemnly explain to you that you have no uterus. She will say that she believes you have a disorder called MRKH Syndrome and will give you the name of a specialist to start visits with. You are going to have to undergo an abundance of tests and have so many appointments with countless doctors and nurses, but your diagnosis will be confirmed as MRKH.

At first this diagnosis doesn’t seem like too much of a big deal. You are already in a relationship so you do not have to worry about finding a boyfriend who will understand. You will be devastated that you can no longer carry your own child, but over time you actually decide that you do not want children. As time goes on life is going to become tumultuous. You break things off with your boyfriend (which needed to happen by the way), and you start to live your life. Unfortunately your mental health is not in the greatest spot. You are having trouble at home with your dad, and you are still yearning to connect with your mom. You have a hole inside of you and you just want someone to care about you; someone to fill that void. Sadly, that leads you down a very dark and scary path. You begin to abuse your prescription anxiety medication and party almost every night. Not only do you want to fill that gaping void, but you want to forget. You want to feel nothing at all. Become numb.

You feel like less than a woman. You cannot carry your own children, but you also keep failing when it comes to dilation, so there’s no hope at a normal sex life. You don’t want to let anyone too close, because then you need to open yourself up to rejection or worse, abandonment. So you keep trying to numb yourself, until it almost becomes too late. You take too many pills one night; don’t worry it wasn’t enough to overdose, but you came extremely close. Your dad is your wake up call. The sound of anguish in his voice as he checks on you breaks your heart and you realize that you don’t want to leave this world and you want to fight.

This is all a lot to take in, I understand, but I want you to know I am here for you, and you do have a ton of people who love you. All of the things that I have just written about are terrifying, I get it, but every situation helps to mold you into who you become. Now you are 27 years old. You grow into a strong, independent, compassionate woman. You learn that your body is yours and you should love every inch of it despite the flaws. You realize that the void you had for years can only be filled by the love you have for yourself. You have a procedure at 25 that is going to change your life. You will have to work a lot harder than most girls who have it, but you will finally be able to have that normal sex life you always wanted. You become accepting of your MRKH diagnosis and decide to help other woman. You want to educate people about it, and share your story. You actually start writing a book about your life that will also talk a lot about MRKH and how it has affected you. I know how crazy you are going to think that sounds, since you despise English class and writing, but it’s true. You become a fur momma to 3 beautiful fur babies. You fall head over heels for an amazing man, who is sometimes so much like your dad it freaks you out. Together you two buy a beautiful home. Your life flourishes into more than you could imagine for yourself.

Just remember to believe in yourself, love yourself, and trust yourself. Life gets hard, but it definitely gets better. I am proof.

Love always,  

Your future self

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Quick Hello and Friendly Reminders from BYMRKH Co-founder, Christina Ruth Martin

Hi Everyone 😊

I hope everyone is hanging in there, staying well and sane through these uncertain times. I recently had two experiences that I want to share with all of you.

I’ve had some strange medical things going on since mid-June that have taken me to many doctor appointments, a visit to the ER, specialist appointments and a CT scan. The issue originally started in my pelvic area and then grew into my abdomen. If you are like me, you will do just about anything not to go to the doctor about an issue around the pelvic area. I want to stress that I am totally fine! But this experience reminded me of two important things that I want to share with you, my fellow Warriors.

1) Check in with yourself – And check in often.

Driving alone to my CT scan I began to feel nauseous and nervous. It took me back to when I was 17. Lying in a confined machine to get an MRI to locate my absent uterus and clues as to why my menstruation had not started. I knew something was off, but we did not have the diagnosis at that point. I just laid there cold and alone. Between the loud sounds of the machine, the MRI tech would stop and talk to me through the intercom system to make sure I was okay. After checking in, she would then go back to starting the machine and let it go for a few more minutes before checking in again. The process went on and on. At one point after she checked in on me, she must have forgot she was on speaker as she loudly exclaimed, “ I can’t find it” over the intercom. I was in the MRI longer than expected and hearing her say that she unable to locate my uterus was unsettling. A few weeks later I would be diagnosed with MRKH. I will forever remember that MRI appointment and those four words I was not supposed to hear.

Fast forward to 2020. I was getting a CT scan this time and not an MRI, but the feeling was the same. I could not get that memory out of my head as my body rolled into the CT scan. It was almost like I was dealing with my diagnosis all over again and it shook me.

This appointment provided me with an important reminder, that we all need to check in with ourselves. No matter where you are on your MRKH journey or how steady you may feel. MRKH can rattle you when you least expect it. So be kind to yourself. Remember how magnificent and special you truly are. And don’t forget all of the battles you have won since then.

So please. Check in with yourself. And check in often.

2) Be your biggest advocate. No one will advocate for you like you will.

When I checked in at the front desk for my CT scan, the women looked at my orders from the doctor and said, “that’s not right.” She then explained to me that the doctor must have wrote the orders wrong and called my doctor’s office to get permission to change it. My physician who sent in those orders is knowledgeable of my MRKH. She sent the requests in a specific way for a reason. I was confident what the doctor sent in was correct. The front desk attendant explained she received permission from the nurse’s aide to change it. I said nicely but firmly, “the nurse’s aide isn’t familiar with what has been going on for months and doesn’t have knowledge of my condition. I would feel more comfortable if you spoke directly to my doctor.” While I believe the front desk attendant was doing what she believed was right – I know my condition and the complexities that come with it. There is a reason the doctor sent the direct orders that she did. I was told I can speak to the imaging aide about it and I was shooed off. While I was waiting I texted my brilliant business partner, trusted confidant and dearest friend, Amy. She was up to date as to what was going on and why I was getting a scan. She said to fight the new order or I would have to come back and get the scan done again. Her response confirmed my initial feeling. I knew I was going to have to advocate for myself and explain that the original orders sent from my physician were correct. I had a friendly debate with the radiologist. I was not backing down. After explaining my concerns, she gave in and did the original imaging that was requested from my doctor.

I felt victorious! It was a small win, but still a win. It’s an important reminder that no one will advocate for yourself like you will. You know your body and the uniqueness of your body better than most people. You need to be your biggest advocate in life and for your health. Don’t be afraid to speak up and advocate for yourself when something doesn’t seem right! Your future self will thank you for it.

I truly hope all of you are happy and well! Sending you virtual hugs from Maryland. May you continue to stay sane, find joy in the small wins, check in with yourself as often as you check in on others and always advocate for yourself. You deserve it (and so much more). 💛

XO

Christina

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What I Would Tell My 17 Year Old Self (MRKH Edition)

Janay Cook

Dear Janay,

You awaken from a dream and jolt to the bathroom to check your panties. You can’t shake this feeling that something is wrong with your body, but at 14 years old, how do you communicate that? 

Fast forward. Three years later you’re 17, graduating high school in six months and wondering if you will ever get pregnant. You have no idea that the next 53 days will be filled with probing doctor visits, five vaginal exams, and a diagnosis that changes the trajectory of your life forever.

You don’t have many friends yet, but within the next decade God sends you earth angels who unknowingly help guide you to your happiness and healing. Some leave your life for good, but MANY stay for a lifetime. JANAY!!!! You even go on a bomb ass girls’ trip to New Orleans that sets the tone for who you’re becoming, plus you gain a group of girlfriends for life. You do a lot of twerking and drinking. By this time, you’re grown and completely CONFIDENT. Just know I was cheering you on in spirit, sis! (Raises champagne glass.) We’ll get to that in a second…

While the dream you had at 14 about not being able to conceive comes true, you never lose your innocence and your zest for life. Throughout your twenties, men take advantage of that, but you know what? You grow stronger, wiser, and your booty gets fatter. See how God works?? 

Over the years, you discover your love for Frida Khalo, Amy Winehouse, butter pecan ice cream, and that life is so much more than birthing babies.

And then comes college. You become best friends with depression. You blame yourself for not being able to make your parents, grandparents and your husband, a father. You haven’t come to fully accept your condition, and you spend every second wondering what you did to deserve MRKH. You question God. You question yourself. You hate God. You drink yourself to sleep. You get sexually assaulted. YOU. BECOME. ANGRY.

But thankfully, there are moments that soften you. Like meeting the nerdy transfer student with the deep chocolate skin and shy spirit. Ironically, Brittany becomes your best friend and two years later she convinces you to release that victim mentality. That was such a beautiful moment ❤

By 27, you surrender to the journey. You kick your raggedy ex to the curb (you know the one I’m talking about) and for the first time, you CELEBRATE having MRKH. Crazy, right!?? You throw yourself the flyest MRKH dinner party. Brittany drives four hours from Georgia and your mom takes off work to support you. You buy balloons and a sexy, sparkly dress from this cheap boutique at the mall, but you WEAR the hell outta that thang! That night, you finally break down and explain your experiences to Brittany. She cries with you and vows to never leave your side. This is the moment your friendship evolves from college associates to best friends. She encourages you to continue accepting your condition and to stop running from yourself, and you do.

The next two years are magical. In 2017, you share your story publicly for the first time in Chicago at a conference dedicated to women’s reproductive research. For the first time you meet Amy and Christina from Beautiful You. **wipes away tears** Ya’ll have been Facebook friends for over the past seven years. Meeting them in person is overwhelmingly emotional, but it feels like meeting long-lost sisters. Your speech captivates the audience and you hear is a sea of “ummms” after every sentence. Toward the end, this sense of peace overwhelms you, letting you know that you’ve finally “accepted it.”

The following year, you start the world’s first MRKH group for black women, “Sistahs Surviving Infertility – MRKH Awareness.” Who would’ve thought that you would conquer all of THIS? You become the Jennifer Lewis of the MRKH community. LOL. Your BOLD, fiery, confident personality shines through and pulls the best out of people, and you leave every conversation with a new friend. You have this special skill of making people feel comfortable. You eventually develop this ability to make people laugh and moments later make them cry and most importantly THINK. Don’t ever think it goes unnoticed.

Now. New Orleans. Girllllll, you cut up! LOL. But on a saved, sanctified note, you connect with five beautiful black women who make you feel seen. The entire trip peels back layers of yourself that you didn’t know were hidden. Your new friends are intrigued and inspired with how much you love and admire your body. It’s another part of your journey that reminds you have of how far you’ve come.

By the age of 30, you’re still single, and that’s okay because you’re finally happy. You’re not an auntie or a mother yet, but you’re a plant mom to nine babies and you enjoy every moment of it. Not to mention, you are just months away from starting your loc journey and from quitting your job to further your dreams of helping others struggling with MRKH and infertility. 🙂

Janay… honestly, you’re THA SHIT girl and I like having you around! You are proof that strong women aren’t born, but are created by the storms they survive, and you’ve survived PLENTY. Despite everything you’ve been through, you’ve remained sweet as Mississippi tea, yet tough as concrete. I’m relieved that I didn’t bruise you too bad.

Remember this Nay: your story is yours to tell, and don’t EVER feel obligated to confess more than you’re comfortable sharing. Your transparency is one of your greatest gifts, so cherish that. Janay, the way you love is so perfect. Protect that part of you. Not everyone is equipped to love you back. With that being said, be careful who you open the door of your soul to. 

Janay, you have the sweetest soul that I have ever met, and I’m so proud of you! Trust me when I say, I’ve NEVER doubted you for one second that you wouldn’t emerge stronger and more beautiful than ever. My only advice is to continue believing in yourself. Your heart and love for people will take you far. In the meantime, give yourself permission to just be.

You’ve spent years blending in with white walls, but now you paint beautiful brush strokes in every space you enter. Remember, everything isn’t perfect, but it’s still beautiful. Don’t ever scale back from being YOU. One day you will thank yourself for not giving up.

Janay, I love you beyond the cosmos!

Sincerely,

Your future 30-year-old self 😊

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What I Would Tell My 17 Year Old Self (MRKH Edition)

Aysha Khawaja

Dear younger self,

I know right now you feel like a whole new different person but one day you are going to use this difference, to make a big positive difference in the world by turning to MRKH advocacy. Initially, you will feel like an outcast and so different to all your female class mates, but later you will realize how MRKH can be a blessing in disguise!

At 15 you got given a new companion called MRKH, but remember this is not a new companion and you have always had this companion from birth. The reason you didn’t know about this companion of yours is because it was playing hide and seek with you and it was in a very good hiding space! The day after your diagnoses will feel like it’s a normal school day; with everything just as it normally is but you won’t feel the same anymore. Within a span of twenty four hours, you will feel like a different person. It will be as if overnight an invisible barrier had sprung up that separated you from the other girls in your class, a barrier that you can’t break down how much ever you try. The barrier was none other than MRKH that sets you apart from the other girls and makes you feel different from them.

I want you to know you are beautiful and perfect, just the way you are. There’s no normal, we are all different in different ways and that is what makes us all unique, beautiful individuals. Lacking female organs and not having periods, does not make you any less of a women! One day you will realize that, even though now you feel so incomplete, different and broken into tiny pieces, as a woman without periods. You will feel you need to be fixed by dilation to create a vagina. However, please remember Allah (God) has made all unique but perfectly and beautifully. You don’t need to be fixed in any way! You will realize your expectations from dilation were too high. Dilation can’t make you feel complete as women that can only come from within yourself.

Please do not hold your emotions in and allow yourself to feel them, It’s ok not to be ok and allow yourself to feel grief, sadness and to seek professional help if you need. It can be really beneficial and make a world of difference, to your emotional well being. Do also remember it is ok not to always like MRKH and be ok with it! I know right now you have gone super quiet and you just want to disappear or for people not to notice you, but soon you will find your voice again! You will be able to speak up and find your confidence, especially during the world pandemic you will really flourish and bloom and even present webinars for children on a large scale!

Do reach out and connect with others like yourself, as it will make the world of difference to you and to the other MRKH sisters too. Actually, you will find building MRKH friendships and having social gathering with your special sisterhood, to be the best form of therapy you could ever get! You are going to gain so much courage and strength and even turn to MRKH advocacy and gain friendship globally, from something which once crushed your world and turned it upside down and made you go on an emotional rollercoaster ride. Right now, it feels like you are riding more on the rollercoaster loops, going around and round with no going forward, but soon you be riding more on the highs than being stuck in the loop!

You will find love and you can still be a mum, if that is that you want to do! There are so many children out there who need a loving home and you have so much love to give to children. Becoming an aunt to your sister’s children, your friend’s children and your neighbourhood children will help you fill some void of not becoming a mother yourself. You will even be called mum by your nephews and niece! You will even have a nephew who resembles you! I want you to know that you can lead a very happy and successful life with or without children of your own and you don’t need a man or child to complete your life.

You will find your true deeper purpose in life as an educator, teacher and prison play worker. You will make a difference to so many more children’s live in such a beautiful positive way, that you would never have imagined. You will host webinars for children on a massive sale and touch the lives of many children this way.

It will make your faith in Allah (God) stronger and your beautiful faith will give you the strength to carry on, when you feel like you can’t anymore. It is true like the ayah in the Quran says: after hardship is ease and Allah (God) does not lay a burden greater than one can bear. It is true that MRKH will make you the strongest lady ever. You will even use that strength to work on a very unique diy project of creating your own vagina and then turn to helping your special sisterhood navigate through this difficult life journey too. Do remember you have to keep dilating or have intercourse; to keep it up and it will not remain open, just on its own. Please don’t pressure yourself to dilate, it can be done at anytime you want or you don’t even have to do it and know that some choose not to dilate and dilate naturally, through intercourse. It takes a lot of mental, physical strength, patience and determination, to be successful at dilating

You will start an amazing legacy and inspire the Boston annual support group! You will also start support groups to help Arab and Asian sisters and be an amazing connecter and connect so many MRKH sisters to one another, on a global level! You will even develop sisterhood and friendship on a global level and become so close that you even exchange cards and parcels to each other!

I want you to remember there’s a light at the end of the tunnel and you will see the light one day! Actually you will be that light to shine the path, for many of your fellow MRKH sisters.

I can be changed by what happens to me, but I refuse to be reduced by it (May Angelou). You certainly will not let MRKH reduce you! Do always cling on to hope! Hope can stand for:

Hang

On

Pain

Ends

Well the pain doesn’t end completely, but it will be much lesser in the future and you will learn to navigate and drive this life journey of yours much more smoothly!

Stay strong, stay smiling! Sending you lots of love, prayers and hugs! You’ve got this girl!

Aysha

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What I Would Tell My 17 Year Old Self (MRKH Edition)

Vics

Dear Vics,

I’m writing to you, a 17-year-old, about a year after your MRKH diagnosis. I’m 18 now and, looking back over the year just passed and what you’ve been through, I’m here to tell you that there is light at the end of the tunnel.

I think you led a pretty standard life up until sixth form started to be honest. Standard ambitions to get a degree, a PGCE, get a teaching job, married and have children. But 2019 brought a lot of problems that stood in the way of those goals. MRKH is just one of them and it felt like your whole world had fallen apart. Your body won’t feel like your own, and you will feel trapped in your own skin. MRKH has taken away a lot from your life, it’s important to allow yourself time to grieve.

You won’t formally get this explained to you for a while but MRKH means you don’t have a womb, a cervix, or a part of your vagina, there isn’t much point getting overly biological, because it’s not your way of thinking. But you do need to know both and understand that you are 100% a woman. Don’t let MRKH or ignorant people tell you otherwise, because they will try to, you mustn’t believe them. And no matter how much mum tries to blame herself, and she will, keep reassuring her that it isn’t her fault. I’m hoping that the genetic testing I’ve just been referred for can provide peace of mind for her. I want to do them because mum and dad have been waiting for 18 years for me to get a referral to a geneticist. I can’t take this away from them. But also, going back to a hospital that holds some traumatic memories is hard for me. I’m learning as much as I can with the help of a lovely geneticist who I’ve met through MRKH before I decide. You need to remember that this is so hard for mum too, and for all the people who care about you. It’s a big burden for anyone to carry.

You’ve been through hell and back already. The embarrassment of phoning the doctors and telling them you’ve never had a period at 17 years old, whilst stood in an empty English classroom, with a staff member you’ve grown to love and value stood outside the room, waiting to hear what they had to say. The appointment itself with the GP came around quickly. You took your best friend Emma with you, and the diagnosis journey began. The blood tests, the ultrasound, consultations, more blood tests, an MRI, and then diagnosis day came…

I remember that day so clearly. School gave you the day off, but you went in anyway, just to have a moment to get out of your head. We were all obviously a bit tense. I remember walking up to the English department, the one place I felt truly safe, feeling like I had the weight of the world on my shoulders. Becky was there, as she always was back then. She had a class of kids, but clocked me, smiled at me, and came to be with me. She had a hold of my hand, looked me in the eye and said “whatever this is, we will fight it together; I promise.” She told me to put a brave face on, and that when I came back in afterwards, she’d be right there waiting, and she was.

Things are different now. Your life will do a full spin. The people who you trusted the most will change. You’ll lose friends who think the burden of MRKH is too heavy for them to carry. You’ll feel abandoned, isolated, guilty, and almost every negative emotion possible, but it won’t last forever. You’ll soon learn who is here for the long haul and who isn’t.Take Emma for example, she still hasn’t gone anywhere! You will test her and push her away, drag her to London and back more than once, keep her up until ridiculous hours when you need a friend, but she won’t go anywhere, and that’s a promise. I’ve lost count now of the amount of people now who have said to me “You’re so lucky to have Emma, Vics” or “Everyone needs an Emma” or “I’m so jealous Vics! I want an Emma!”, she really is the best friend anyone could ever ask for. And I promise you she won’t leave your side. Your best friend of 13 years, your rock and confidant, President of Team Vics (which is what we call my support team) we got so lucky to get her. It must have been and still probably is, really hard for her too. I never stopped and thought about how this could all be affecting her as well as me. We are so close it’s like we are going through each step together. She has such a lot of pressure on her to support me, but she manages brilliantly. Treasure her for as long as you can, hold onto her, she’s pretty amazing! Emma and her family love you to pieces. 16 years after becoming tied to their family through pre-school, they are still supporting you, you’ve got them for keeps!

Team Vics is one of the best things that’s developed over the period since diagnosis. It was Emma’s idea. It’s your team of women who have and do look after you through the bad times, but they’re also there through the good times too. It’s important to learn that the people who can’t cope with you at your worst don’t deserve you at your best. We’ve got a team mascot on the way, and we use #teamvics when showing our solidarity. You can tell who’s a part, or who should be a part, by the way you feel around them. Anyone who’s made you feel loved, cared for, and worth something despite what you’ve been through or what you’ve put them through is a part of your team. If you’ve tried to push them away and they’re still right by your side, if they’ve been on the phone with you at 2am when you’re being sick from a panic attack and are still here then they’re here for the long haul. We’ve got Emma and her family, some school friends, a few teachers, some MRKH sisters, and some of the mums from dance all playing big roles, as well as your swimming teacher Danielle. Team Vics consists of people who don’t look at you or treat you any differently for having MRKH. I think it’s so important that people still see you and treat you as Vics. Not as the girl with MRKH who can’t look after herself. Some won’t be able to see you in the same way because of MRKH, so the rare finds who still love you for you feel even more valuable.

You’ll also find comfort in swimming more than you can ever imagine. It’s a great place to let out your anger and frustration on the world. It’s so much healthier than lashing out at the people who love and care for you the most and pushing them away, which you and I need to learn to stop doing! It’s like a safe place. The coaches can all tell when you’re not acting or behaving like yourself, so will adjust their lessons accordingly. Sometimes spending the whole lesson chatting or venting is what’s needed. Or maybe a full and intense workout, in and out of the water is what’s right, or quietly swimming up and down with music on, not talking to anyone. Either way, Danielle can see what you need. Make the most of it before moving away, you’ll miss them more than you think.

You’ll make so many new friends within the MRKH community. Like a second family and they’ll give you the sense of belonging you’ve craved all your life. You are soon going to cross paths with someone pretty special, united by MRKH. She will teach you how to love again, and will be like a second mum to you. Loving you and looking after you when you aren’t strong enough to look after yourself. I know that right now you feel nothing but hatred for the world, especially for yourself for simply being inadequate and for some of your friends for walking away and being useless. But these feelings don’t and won’t last forever, you will learn to love again. She will save you from yourself, from the demons you will face, push you out of your comfort zone. But also to do the necessary things to feel better. Always loving you, holding your hand across the miles through every mental, physical and medical battle that you will face.

You’ve also got some amazing English teachers in your corner, who won’t leave your side. They’ve got every angle covered, from making sure you’ve eaten before an exam to writing you a list of questions to take to hospital appointmentsor a hug and kind words on the bad days. They have, and still do go above and beyond to make sure everything’s okay. They don’t have to, but they do. I’ve left school now, not far off moving away to University to start an English degree, and they’re still here. They’re my ray of sunshine on the cloudiest of days. Even now they’re some of my biggest cheerleaders on my MRKH advocacy journey, reading over posts or blog submissions etc all on top of helping me acaemically. I never dreamed I could get this much comfort and support from my teachers, but I really did. I feel so much safer knowing they aren’t going anywhere even when I move away.

You are going to face some low moments and even some quiteintense panic attacks in the coming year. Some of them will feel almost unbearable, but you’ll learn what to do during those and you’ll come out the other side after each one eventually feeling stronger than ever. Most recently, I reached out to one of my teachers, and over the past 4 months, she’s given me nothing but her time, patience, and care. I owe the fact that I’m still here right now, happy and healthy to her. She spent hours and hours working with me to rekindle my love for English, whilst indirectly also finding my self-worth. I still don’t think she realises it but she genuinely saved my life. She pulled me out of the hole of despair and self-hatred I was stuck in, she encouraged me to let my wall down, brick by brick. You don’t need to hide anything from her. The last time I saw her was way back in March (it’s now August) when she held me in her arms and said “you know where I am if you need me, I’ll always be here for you” and she still is. I’m very lucky to have her in my corner. You’ll find so much happiness just from reading too. Curling up with a book and escaping the world, having that moment of peace from reality, it’s such a relief! Even learning about infertility, MRKH and mental health through literature. Using the subject you love to learn about your life changing diagnosis makes that love for literature even stronger and more special. Sitting here writing this now, I know that English is the right choice.

I don’t think that now you would believe the life I’m living right now! I’m preparing to move away and start a degree in English. I’m one of the youngest advocates for MRKH out there, even taking part in research studies and advocacy projects! I’m a stone throw away from being a qualified nail technician, started my own business doing nails, getting real, psychological and medical help, with the best support circle out there. You will soon learn that the good parts of MRKH. The family, the feeling of belonging, the empowerment of advocacy, the bravery you will develop, the security in a community where you won’t be judged for who you are, the strong people from your ‘old life’ who stick around, is all worth SO much. You will be happy again. One day soon, you will find your purpose, your voice, and the fog will be lifted. Stay strong, and never forget that you are imperfectly perfect just the way you are, and you are not on your own, you are so loved.

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What Would I Tell My 17 Year Old Self (MRKH Edition)

Lauren Hayward

Dear me,

Hi it’s you at 23. Now I must warn you you are going to go through some serious bad times. Two of your grandparents going into hospital, being told you can’t have children naturally and losing a few friends you thought you were going to grow old and grey with. But, you are going to go through some amazing times. Finding a job you absolutely love, being baptisted in front of everyone you love and care about and keeping the real life friends that are there no matter what.

I’m going to briefly talk to you about what’s going to happen to you in about a years time. You are going to walk into a consultant’s office with mum and you are going to be told you have MRKH. A very weird condition and a condition to this day we are still trying to figure out. Your mental health is going to suffer. You’re currently going through one of the toughest year yet. We’re in lockdown and we can’t see those people who understand you, understand your weirdness or who you would normally talk to when your MRKH is putting a giant rain cloud above your head. But it will get better and you will come out the other side.

And lastly just remeber take your time. Take loads of mental photos of the people in your lives and sing and dance like no one is watching/ listening. And be kind to yourself.


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What I Would Tell My 17 Year Old Self (MRKH Edition)

Julian Peter

DEAR JULIAN,

At times life may seem unfair but there is a brighter future ahead. Its ok to feel the way you feel now but giving up is not an option. Yes your well planned future might have turned around but that doesn’t mean it’s over rather a new beginning is here for you, a better future is here for you to look forward to.

Becoming a mom might be dead to you now but with time it shall come to live again, live a day at a time, take your time to understand who you are, what is MRKH and how you can learn to live with it. It’s impossible to understand that you can live with MRKH now but with time you shall heal and live with it in peace.

Its feels so scary to think about the people around you and what they will feel about you and so many unanswered questions right now. A day shall come when all this shall be gone because of a beautiful soul. You shall educate the society about your condition without the fear of what will they say? What will they feel about me? Will they love me? Because advocacy will become part of whom you are and it will not matter what they say, what they feel. The right people shall surely love who you are.

You shall meet great women who will understand you, feel your pain and walk this journey with you and it shall all be worth it. You will make a great leader ambassador of MRKH, you will speak on behalf of many, and you will unite many MRKHERS because it’s through that, that they will find they aren’t alone.

The society might not be a place better for persons with MRKH but you shall make a better place through advocacy because you are stronger than MRKH. It’s not going to be easy but it’s going to be worth it.

  MRKH is not a death sentence rather a stepping stone to higher levels. There is beauty in life choose to live life with a hope for a beautiful morning. Every morning is a new page write your story according to you and not what the society expects. Be happy for you live once there is no repeat of a day lost live a day at a time and enjoy every bit.

To myself “For the love I feel for me I shall fight for a better tomorrow because I deserve it all, I am worth it, I am unique and with a purpose to fulfill in this world. Through God’s grace I shall achieve it”.

Yours Julian

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What I Would Tell My 17 Year Old Self (MRKH Edition)

Lizzie Roberts

Hello Let me introduce myself…. I’m you 27 yrs from now! ……( 44 yrs old ) I know the pain, heartache, and devastation you are going through right now…. your world has totally collapsed!

Please let me help you understand and support you in the journey I have had and how it will help you overcome the challenges and struggles I have had to conquer.

But before I start…… remember that you are always loved, supported, and above else you are BEAUTIFUL!!!! ❤️🥰❤️

Always be kind to yourself, take time out for self care, be with and do what makes you feel happy loved and valued.

Don’t be too hard on yourself, just take one day at a time….. breathe … just take one step at a time, breathe . Allow yourself to grieve, cry, shout, scream, but above all know that the pain and suffering will pass!…… it won’t last forever, and when you get through the other side you will be stronger than u ever imagined!!! 🥰❤️🥰

Self help strategies I’ve learnt have been a very powerful tool for me and these have included a playlist of my favourite up lifting songs…….. “ This is me “, “ My fight song” , and “ Warrior “ to name a few!

You will find Yoga and meditation which have helped with my positive state of mind endlessly will be a blessing for u!! ❤️🥰❤️

You will find having a positive/ gratitude journal very helpful …. My positive journal is full of positive quotes that I can look at and reflect upon…. these have become a big part of my healing process especially! 🥰❤️🥰

When the initial shock has sank in…… you will find therapy very rewarding! Trust me!

At first you won’t want to, but please let me reassure you, it was the best thing I ever did!! You will revisit it a few more times in your adult life, but this is a positive break through! Recognising you need to seek professional guidance is not a weakness but a strength!!!! It will make you turn into the person I am today!!!! ❤️🥰❤️

Life will be tough, I won’t lie….. but with your family by your side and having a few special friends that u will confide in at the beginning is only the beginning of your journey!!

You will always have your determination and persistence to succeed! This my younger self is your strength and your drive in life to move forwards in a positive way!

I don’t want to spoil things too much for your future…… but I will reassure u that you do meet MR RIGHT and he is your soul mate, your Rock, and what keeps you grounded!!!! ❤️🥰❤️

Life will get bumpy at times, but where there are dark times .. there are moments where life will just take your breath away!!! ❤️🥰❤️

You will finally meet and find a safe place where you are not alone and find a community of a fabulous sisterhood! ❤️🥰❤️ some of them will be your closest dearest friends and whom you have a long life friendship with! ❤️🥰❤️

One last thing before I go…….. You are 1 in 5,000 and you will learn that “ He who laughs lasts, laughs loudest!!!”

You will take a roller coaster of a journey!….. but it’s worth it!!!!!

You will realise one day in the future…… that being a MRKH Warrior is the person I’d rather be!

I’m 1 in 5,000 and proud!!!! God bless!! ❤️🥰❤️

God bless

(Can you guess where I am? You will love this Experience!……. I’ll say no more! ❤️🥰❤️)

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