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.
Iâve 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 â 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, â I canât find itâ 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 donât 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, âthatâs not right.â She then explained to me that the doctor must have wrote the orders wrong and called my doctorâs 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 nurseâs aide to change it. I said nicely but firmly, âthe nurseâs aide isnât familiar with what has been going on for months and doesnât have knowledge of my condition. I would feel more comfortable if you spoke directly to my doctor.â 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. Itâs 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. Donât be afraid to speak up and advocate for yourself when something doesnât 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). đ
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 girlsâ 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 â¤
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. đ
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.
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 didnât 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 itâs a normal school day; with everything just as it normally is but you wonât 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 canât 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. Thereâs 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 donât need to be fixed in any way! You will realize your expectations from dilation were too high. Dilation canât 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, Itâs 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 sisterâs children, your friendâs 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 donât 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 childrenâs 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 canât 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 donât pressure yourself to dilate, it can be done at anytime you want or you donât 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 thereâs 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 doesnât 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! Youâve got this girl!
Iâm writing to you, a 17-year-old, about a year after your MRKH diagnosis. Iâm 18 now and, looking back over the year just passed and what youâve been through, Iâm 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 wonât feel like your own, and you will feel trapped in your own skin. MRKH has taken away a lot from your life, itâs important to allow yourself time to grieve.
You wonât formally get this explained to you for a while but MRKH means you donât have a womb, a cervix, or a part of your vagina, there isnât much point getting overly biological, because itâs not your way of thinking. But you do need to know both and understand that you are 100% a woman. Donât let MRKH or ignorant people tell you otherwise, because they will try to, you mustnât believe them. And no matter how much mum tries to blame herself, and she will, keep reassuring her that it isnât her fault. Iâm hoping that the genetic testing Iâve 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 canât take this away from them. But also, going back to a hospital that holds some traumatic memories is hard for me. Iâm learning as much as I can with the help of a lovely geneticist who Iâve 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. Itâs a big burden for anyone to carry.
Youâve been through hell and back already. The embarrassment of phoning the doctors and telling them youâve never had a period at 17 years old, whilst stood in an empty English classroom, with a staff member youâve 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 cameâŚ
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 âwhatever this is, we will fight it together; I promise.â She told me to put a brave face on, and that when I came back in afterwards, sheâd 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. Youâll lose friends who think the burden of MRKH is too heavy for them to carry. Youâll feel abandoned, isolated, guilty, and almost every negative emotion possible, but it wonât last forever. Youâll soon learn who is here for the long haul and who isnât.Take Emma for example, she still hasnât 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 wonât go anywhere, and thatâs a promise. Iâve lost count now of the amount of people now who have said to me âYouâre so lucky to have Emma, Vicsâ or âEveryone needs an Emmaâ or âIâm so jealous Vics! I want an Emma!â, she really is the best friend anyone could ever ask for. And I promise you she wonât 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 itâs 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, sheâs 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, youâve got them for keeps!
Team Vics is one of the best things thatâs developed over the period since diagnosis. It was Emmaâs idea. Itâs your team of women who have and do look after you through the bad times, but theyâre also there through the good times too. Itâs important to learn that the people who canât cope with you at your worst donât deserve you at your best. Weâve got a team mascot on the way, and we use #teamvics when showing our solidarity. You can tell whoâs a part, or who should be a part, by the way you feel around them. Anyone whoâs made you feel loved, cared for, and worth something despite what youâve been through or what youâve put them through is a part of your team. If youâve tried to push them away and theyâre still right by your side, if theyâve been on the phone with you at 2am when youâre being sick from a panic attack and are still here then theyâre here for the long haul. Weâve 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 donât look at you or treat you any differently for having MRKH. I think itâs so important that people still see you and treat you as Vics. Not as the girl with MRKH who canât look after herself. Some wonât 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.
Youâll also find comfort in swimming more than you can ever imagine. Itâs a great place to let out your anger and frustration on the world. Itâs 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! Itâs like a safe place. The coaches can all tell when youâre not acting or behaving like yourself, so will adjust their lessons accordingly. Sometimes spending the whole lesson chatting or venting is whatâs needed. Or maybe a full and intense workout, in and out of the water is whatâs 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, youâll miss them more than you think.
Youâll make so many new friends within the MRKH community. Like a second family and theyâll give you the sense of belonging youâve 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 arenât 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 donât and wonât 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.
Youâve also got some amazing English teachers in your corner, who wonât leave your side. Theyâve got every angle covered, from making sure youâve 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 everythingâs okay. They donât have to, but they do. Iâve left school now, not far off moving away to University to start an English degree, and theyâre still here. Theyâre my ray of sunshine on the cloudiest of days. Even now theyâre 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 arenât 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 youâll learn what to do during those and youâll 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, sheâs given me nothing but her time, patience, and care. I owe the fact that Iâm 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 donât 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 donât need to hide anything from her. The last time I saw her was way back in March (itâs now August) when she held me in her arms and said âyou know where I am if you need me, Iâll always be here for youâ and she still is. Iâm very lucky to have her in my corner. Youâll find so much happiness just from reading too. Curling up with a book and escaping the world, having that moment of peace from reality, itâs 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 donât think that now you would believe the life Iâm living right now! Iâm preparing to move away and start a degree in English. Iâm one of the youngest advocates for MRKH out there, even taking part in research studies and advocacy projects! Iâm 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 wonât be judged for who you are, the strong people from your âold lifeâ 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.
Hi itâs 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 canât 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.
Iâm going to briefly talk to you about whatâs going to happen to you in about a years time. You are going to walk into a consultantâs 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. Youâre currently going through one of the toughest year yet. Weâre in lockdown and we canât 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.
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 doesnât mean itâs 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. Itâs 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 itâs through that, that they will find they arenât 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. Itâs not going to be easy but itâs 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 âFor 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 Godâs grace I shall achieve itâ.
Hello Let me introduce myself…. Iâm 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!!!! â¤ď¸đĽ°â¤ď¸
Always be kind to yourself, take time out for self care, be with and do what makes you feel happy loved and valued.
Donât 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 wonât last forever, and when you get through the other side you will be stronger than u ever imagined!!! đĽ°â¤ď¸đĽ°
Self help strategies Iâve learnt have been a very powerful tool for me and these have included a playlist of my favourite up lifting songs…….. â This is me â, â My fight songâ , and â Warrior â 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!! â¤ď¸đĽ°â¤ď¸
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! đĽ°â¤ď¸đĽ°
When the initial shock has sank in…… you will find therapy very rewarding! Trust me!
At first you wonât 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!!!! â¤ď¸đĽ°â¤ď¸
Life will be tough, I wonât 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 donât 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!!!! â¤ď¸đĽ°â¤ď¸
Life will get bumpy at times, but where there are dark times .. there are moments where life will just take your breath away!!! â¤ď¸đĽ°â¤ď¸
You will finally meet and find a safe place where you are not alone and find a community of a fabulous sisterhood! â¤ď¸đĽ°â¤ď¸ some of them will be your closest dearest friends and whom you have a long life friendship with! â¤ď¸đĽ°â¤ď¸
One last thing before I go…….. You are 1 in 5,000 and you will learn that â He who laughs lasts, laughs loudest!!!â
You will take a roller coaster of a journey!….. but itâs worth it!!!!!
You will realise one day in the future…… that being a MRKH Warrior is the person Iâd rather be!
Iâm 1 in 5,000 and proud!!!! God bless!! â¤ď¸đĽ°â¤ď¸
God bless
(Can you guess where I am? You will love this Experience!……. Iâll say no more! â¤ď¸đĽ°â¤ď¸)
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 donât 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 arenât 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 didnât.
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 donât have periods and whilst people you tell may latch onto the fact you donât have periods as a huge positive it doesnât 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 donât just bury those feelings away. You are allowed to cry.
There comes a point in your twenties when you realise things arenât quite right but you donât 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.
Donât be scared. Donât hide it and absolutely donât be ashamed to ask for help.
I know you get there in the end but donât 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. Donât flit. Take your time and make sure you are making a right choice for you. Donât 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 isnât 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 knowâŚand I mean really listen hereâŚyour future is so bright. You have so much to look forward to regardless. Carrying your own child doesnât define you as a woman or mean you wonât ever be happy. You can still have children. Donât think you canât.
Ok its not going to be the way you planned and if you choose not to then this is ok too. Yes itâs annoying when people constantly ask when you will have children and itâs 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 âdirtyâ to say. Honestly there is so much out there that you wonât 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 donât 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.
Sweet sweet girl, as if being 15 wasnât hard enough, your whole world is about to be turned upside down. The second you walk into the hospital, youâre going to thrown into the middle of an emotional hurricane, but the important thing to know is that it doesnât 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, doesnât 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!
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 youâve been very confused about sex and how to navigate it without a vaginal canal. Being 18 was hard. Iâm 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.
Youâre in one of the most hormonal stages of your life. I get it. Trying to focus on homework isnât easy when you have sex on your brain. But masturbating is the best way to figure out what you like and want, and thereâs nothing bad about it. Also, those sex toys youâve got in your drawer – get better ones that make more sense. â Latex? No thank you. â Silicone? Yes.
First let me redefine sex for you. Youâre already starting to realize that sex is not a single action. Penis. Vagina. Please. Though this is what the collective has decided is âitâ I assure you it is not. Donât be fooled by pop-culture or your peers. They wouldnât 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. Donât even get me started on the way male-bodied hetero-normative people have been telling the story for too long. You donât owe anyone anything. Believe me when I say, there are lots of ways for penis people to enjoy sex that donât 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. Letâs 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 donât 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 wonât remember. You will corner yourself intofinding words to describe your body, and the differently bodied experience you are having. You will fumble sometimes.
Youâll wish you had been safer, and used protection, and been clearer about your boundaries. But Iâm pretty sure consent is confusing for everyone. It is based on an agreement you make with yourself – and when you donât know who you are, or what you want, – and are disconnected from how you feel, it is hard to see the line. Youâre 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. Thereâs 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.
The Empowerment of the Silent Sisterhood 