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

Charlie Bishop

Dear Little Charlie

Ok.

Right now things are scary.  It all seems a little surreal. Everything that you thought was possible in the future suddenly is thrown into doubt.  You don’t know what to do with yourself or how you should feel.  Just know that this is totally natural.  

You are now thinking about what this means and you aren’t really ready for it.   There is so much going on and so many questions you have and it all seems too much.  It is hard to believe you are only 17.  This feels like something an adult has to deal with.  You just thought you were a late bloomer and that it would just happen later.  

It is ok that they didn’t.

I know it feels embarrassing speaking to your friends about it or trying to be part of conversations on periods and not really knowing what to say. You will grow to learn that it is not just those with MRKH that don’t have periods and whilst people you tell may latch onto the fact you don’t have periods as a huge positive it doesn’t take away from what you have lost. Although it is ok to be happy not to have periods too.

You have lost something you hoped to have and you need to let yourself grieve that. Maybe it sounds silly but trust me don’t just bury those feelings away. You are allowed to cry.

There comes a point in your twenties when you realise things aren’t quite right but you don’t know how to deal with it and you bury it.  There are times you have been scared to talk about it or admit you need help. 

Don’t be scared.  Don’t hide it and absolutely don’t be ashamed to ask for help.  

I know you get there in the end but don’t forget when you get there you need to be open, the only way you can get help is to be open about how you are feeling and let them help you find ways to move towards acceptance. Recognizing your own mental health is not something to embarrassed by.  Be strong and know that the important thing is doing something that is helping you. Who cares what anyone else thinks?

Always look for love. Love in your friendships, love in yourrelationships and love for and from your family. You have a habit to wear your heart on your sleeve and get hurt easily. Don’t flit. Take your time and make sure you are making a right choice for you. Don’t feel bullied into a decision, any decision. Also remember to communicate and share your feelings, you are all too good and hiding them, and that isn’t helpful to any relationship.

You will find support almost accidentally in not too long from now but know there are so many more people out there andyou will find them.  There are support groups out there too.  As soon as you meet just one other person you will instantly know you are not alone.  

The future is scary but the more you worry about that the less you live in the now, the life you are in right now. Baby steps little Charlie. Take your time. Life is not the race you think it is, you can always be the tortoise.

But know…and I mean really listen here…your future is so bright. You have so much to look forward to regardless. Carrying your own child doesn’t define you as a woman or mean you won’t ever be happy. You can still have children. Don’t think you can’t.

Ok its not going to be the way you planned and if you choose not to then this is ok too.  Yes it’s annoying when people constantly ask when you will have children and it’s not right.  Believe me I am trying to change that along with so many others going through the same and indeed other situations that make carrying a child difficult or impossible. 

It will feel weird but it will become natural to say words like vagina, dilators, sex in public company when they always felt a bit weird and almost ‘dirty’ to say. Honestly there is so much out there that you won’t believe, you are just going to have to see it for yourself and know that your voice, however loud, has a place.

My last advice to you is. Live. Love. Dream.  Cry when you need to and don’t hide it.  There will still be good and bad days even though, and hard to believe right now, you get to a really good place with how you feel about MRKH.  This is totally fine and natural.  You are only human after all.  

Just know that dreams can come true even if those dreams get a little misshapen and topsy turvy along the way, they are just growing with you.

All my love 

Big Charlie xx

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

Lindsey McFarland

Sweet sweet girl, as if being 15 wasn’t hard enough, your whole world is about to be turned upside down. The second you walk into the hospital, you’re going to thrown into the middle of an emotional hurricane, but the important thing to know is that it doesn’t drown you.

Sure, you may struggle to keep your head above water as you tread through anger, confusion, and despair, but it will make you so much stronger. You will question so many things about yourself and you will struggle to come to terms with how your beautiful (yes, beautiful) body was created. Just because you were born different, doesn’t make you less than. This difference will make you take a good look inside yourself to find out exactly who you were meant to be.

You will make so many mistakes, and yes kiss too many frogs, but please please remember how worthy you are to be loved by others, but more importantly to love yourself. It may take you awhile to truly accept that, but keep that reminder there in your heart.

And beautiful girl, when the times are hard and you want to scream and cry, do it. But at the end, remember….you are a WARRIOR!

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

Erinn Webb, MA, RDT

I am a trauma therapist and I have MRKH. I am aware that Ihave many privileges, which have allowed me to be safe enough to express my sexuality and get access to the support I needed, such as being able to afford therapy. In your story that might not be true. I know there are folks for whom naming that they have MRKH is a risk. Today I am addressing my younger self.

Dear little Erinn,

I know you’ve been very confused about sex and how to navigate it without a vaginal canal. Being 18 was hard. I’m glad that you were with someone who was loving to help you through it when you found out. I also know it hurt when he later told you about someone else he started dating, and what their sex life was like.

You’re in one of the most hormonal stages of your life. I get it. Trying to focus on homework isn’t easy when you have sex on your brain. But masturbating is the best way to figure out what you like and want, and there’s nothing bad about it. Also, those sex toys you’ve got in your drawer – get better ones that make more sense. – Latex? No thank you. – Silicone? Yes.

First let me redefine sex for you. You’re already starting to realize that sex is not a single action. Penis. Vagina. Please. Though this is what the collective has decided is “it” I assure you it is not. Don’t be fooled by pop-culture or your peers. They wouldn’t be asking you if you were a virgin if they knew what I know.

Orgasms. Sensations. Pleasure. And wow, your clitoris. The fact that this has been neglected in standard conversation about female sexuality is mind-boggling. Don’t even get me started on the way male-bodied hetero-normative people have been telling the story for too long. You don’t owe anyone anything. Believe me when I say, there are lots of ways for penis people to enjoy sex that don’t require that hallway to be open.

Sexuality is about desire, and desire can be fluid, just like gender can be fluid, in other words your feeling about it can change. Surprise! Finding yourself in the word queer is arevelation. Let’s talk about anal sex, and how getting over your hang-up about hygiene will give you permission to have some outrageously satisfying experiences. You have so much fun, you decide you don’t even need a vagina. The icing on the cake is that one day you do make one, while having a good time, rather than as something you felt you had to do. It turns out that having a consistent partner to play with does wonders.

But this letter is not just about the good times. There will be times you put yourself out there, and get some painfully memorable responses. Sometimes you will put yourself in risky situations, just to soothe your loneliness and cut through that feeling of floating. Like times you have sex with people whose names you won’t remember. You will corner yourself intofinding words to describe your body, and the differently bodied experience you are having. You will fumble sometimes.

You’ll wish you had been safer, and used protection, and been clearer about your boundaries. But I’m pretty sure consent is confusing for everyone. It is based on an agreement you make with yourself – and when you don’t know who you are, or what you want, – and are disconnected from how you feel, it is hard to see the line. You’re not the only one whose job it is to see it. 

I want you to know some of these encounters are not just about sex, but about being seen when you are feeling invisible. I know you feel like no one sees you sometimes, and nobody else can understand.

Dear Erinn, you deserve to be loved. And to be here. And to enjoy your life. I hope those are things you never forget. There’s so much more. Love, your grown-up self.

Click below to watch the video that was Screened at the Global Goes Digital MRKH Event on June 20th, 2020.

https://drive.google.com/file/d/1XoEc885EBvsXRwgXdeUQu_TK90f1PQRk/view?usp=drive_we

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

Elyce Frydman

Dearest teen Elyce,

It seems odd to write to my younger self but who else can advise you about life better then me. At sixteen years old this thing happened and you felt like your world crumbled. You got this diagnosis called MRKH and so many thoughts ran through your head. You sat in disbelief in the doctors office and then sat many a nights crying by yourself when no one else was looking. You were full of fear…anger…sadness… loneliness…. Your whole being was engulfed in despair and you closed yourself off to so much of your world and built up this huge wall to try to protect yourself. If I could talk to that girl… talk to you…I would tell you so many things that would leave you feeling hope, peace, love, joy happiness and pride of what you truly are and what the world really had to offer you.

The first and most important is that you are not alone. You don’t have to go through the ups and downs of life feeling that no one will understand you. Your family has always and will continue throughout your life to support you and your choices. They will love you no matter what and you don’t have to fear that you will disappoint them because you never could. Their love has always been and will always be unconditional. But it isn’t only their love and support you will feel. You will also have many friends throughout your life that will touch you in some way and you will learn things from each of them. You will find a solid foundation of trustworthy kind people that you will be able to call life long friends. There will be people that you will open up to. Some of them may not have the same experiences as you, they will be there for you during your triumphs and failures….they will be your biggest cheerleaders and the largest shoulders to cry on. And even though you have feared opening up about your MRKH with any of these friends or family right now, there will be a time that you do not shy away or try to avoid women like you. You will embrace them as sisters and cry and laugh and support them in ways you never though was possible. I wish I could tell you to embrace that love at this early age instead of avoiding and fearing it just because you don’t want to recognize that this has happened to you. Just like love and beauty and kindness is part of life, so is pain and fear. Sharing these feelings with trusted friends is so much better then holding all of it in and dealing with it all on your own.

Don’t shy away from the resources presented to you. In fact search them out. Through this search for knowledge, particularly about MRKH you will find this community that you will embrace. You will find sisters, women who support each other and who you will support. You will have women that encourage you and that you too will encourage. With these courageous women you will find your own power. You have it in you. You just need to believe in yourself. Just see what others see in you because you are strong, you are loved and you are beautiful! Forgive yourself and know that you are not perfect but no one is and its ok to make mistakes. You will try things like dilation …. A lot….you will start and stop and start and stop again and you will realize that it isn’t for you. Sometimes you will feel like a failure because of it but you will also understand that all of it is your choice. You have a right to make those choices cause its your body and your mind and your needs and not anyone else’s, and that’s ok. I wish you knew that it was ok to take care of yourself first, emotionally and physically. That is a lesson that you will continually learn and work through throughout your life and that that’s ok too. Don’t hold onto things that you can not control or do anything about. You can’t change that you were born with MRKH but you can learn from it and embrace that yes it is a part of you. But there is also so much more that makes up you. In fact, there are a million things that make you who you are. Know that its ok to love each and every one of those pieces.

Know that you are deserving of love. That MRKH does not define this worthiness. Know that you will succeed at it and fail at it. You will cycle through it again. Even though you may have relationships that come and go, it does not mean that you failed them because of MRKH. Relationships aren’t just encompassed by MRKH but by so many more factors. Don’t let anyone give you the sense that it is the reason for a failed relationship. That person only presents the most obvious reason why you shouldn’t be with them in the first place. The person that loves you, loves everything about you. They accept the person that you are – the good, the bad, the ugly and everything in between. I know you think right now that for someone to love you is an impossibility because you can’t give someone children. That you can’t be that wife or mother in what you deem as society’s idealized family. This isn’t the truth. Families come in many forms and you will build the family that is right for you. You will be a wife and you will be a mother. First to a plethora of animals and then to two beautiful children that you foster adopted. It wont matter to you that they didn’t come from your own womb. You will realize that being a parent isn’t about biology but about what is in your heart and soul. You will love your daughter and son with all that is in you. When they look at you they will not care about blood but will care about your kindness and your love, the values and faith that you teach them and the fact that your love will forever embrace them.

The hardest fight you will have in life will be with yourself…. With your own demons and you must realize you are your own worst enemy. You must fight that little voice that says you are ugly, or not worthy or not enough. Because in reality people don’t see you that way. They see you as courageous and strong, beautiful and kind, intelligent and open hearted. So if they can see you that way. See it in yourself. Life speeds by in a blink of an eye so don’t hold on to self hate. Finally just believe. Believe that the impossible is truly possible because it is!

Love your older and much wiser self!

Hugs, 

Elyce the elder

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