Recently publishing my memoir, More Reason to Know Him, was a book I was working on for quite some time, years! Being published and on Amazon recently, I suddenly had an anxiety attack! I woke up the day after it was published and realized my story was out there in public. Right on the back of the book, I told the world I didn’t have a uterus! Oh my, what did I do? However, I prayed and asked God to help me through my anxiety. He did. I realized it was for Him that I had written the book. Without God, I wouldn’t have made it through the many sorrowful years of living with MRKH. I had other good reasons to write it; also, we’ll get into that shortly.
My story begins with my diagnosis pre-computer age in the year 1970. After my diagnosis, there was nowhere to find any further information about MRKH. My diagnosis put me in a most isolated position with no computers, no Google, and no cell phones. I didn’t think I’d ever meet another person in the world that had MRKH. I didn’t share my news with even my closest girlfriend. It was rare and personal. My family swept it under the rug, never to talk about it again.
My MRKH was my very own secret. Having questions, concerns, and extreme grief for the family and children I’d never have, made my heart break and made me feel broken. At the time, I was in college and engaged to be married. My diagnosis became the reason my engagement ended. Then came the thought, who would want to marry me? My life that day changed forever!
It was 42 years before computers were available and in homes. I was 61 years old. For the first time in my life, I was able to find out more about MRKH. Up until this point, I never had met another person with MRKH. Every doctor I ever had did notknow what MRKH was. The feelings of isolation added to anxiety and depression. The sense of “not belonging” washorrible. Not sharing my MRKH and keeping my secret didn’t help. I also realized because of my shy way; my family couldn’t talk with me. I take responsibility for no one ever speaking with me about it. I was not approachable.
Yet, my story is one of “hope” despite the reality, praise God! In 1975, I married a man that had been married before and had two children, Lori and Kim. The girls were 7 and 8 years old when I met them. I became their stepmom. We did not have the girls full-time. I love them as though they are my biological children. God blessed me with them. Yet, I still searched for my identity through work. In the book, you’ll see that there are stories within the stories. Each level points to how God provided for me blessings during my life. Writing the book helped me see His Fatherly love at various stages of my life.
In 2003, while searching for my identity, I was searching for someone or something to fill a hole in my heart. It could only be filled with Jesus. Once I received Him into my heart at the age of 52, I immediately knew my identity. I was a child of the King of kings and Lord of lords. My life changed forever, literally. I belonged to the family of God. Receiving Jesus into my life, I knew I’d spend eternity in heaven with Him when I left this world. For that, I am forever grateful. Jesus died on a wooden cross; he was crucified, died, and was buried. Three days later, he rose from the grave. He is a living Savior. He died in our place and paid for the sins of the world. All who believe in Himand receive Him into their hearts have eternal life. My hindsight perspective became one of “awe” as I wrote my story. Able to see God’s hand in my life was amazing! He loved me even before I received His son Jesus.
In 2016 I attended my first MRKH meet up in Philadelphia. It was so special! Meeting other women that had MRKH, made me feel whole again. I wasn’t alone. Yet I was 61 years old, these MRKH sisters were quite young. It was fine, a beautiful experience. To get connected meant the world to me. I finally met doctors who knew about MRKH. The group we have and belong to is unlike any other group of people. Connection with each other whether that is via the internet, zoom, FB or whatever platform, there is a special bond we all share with our sisters all over the world! I am forever grateful for our sisterhood and feel blessed that we have each other.
As I continued to write, it felt as though I was slowly releasing years of grief that had been stuffed way down into my toes. Also, I began sharing my story on a speaking platform in my church and other meetings for a group called CR, Celebrate Recovery. Speaking about my story, blogging about it in a public format, and writing my memoir, I had lots of time for reflective perspective. In November 2019, I had the privilege to speak atthe Global MRKH Conference in Australia. It was an honor and a very humbling experience. The conference was terrific, and I met many wonderful MRKH Warrior sisters. We are a courageous group, I will say! Each of us have similar stories, yet very different experiences. It is so good to share with each other.
In my memoir, More Reason to Know Him, I share the incredible blessings of having MRKH. I’d refer to my life today as authentic, resilient, and recovering. It has been a long journey, but I wouldn’t trade it for anything. I love my MRKH sisters around the globe! MRKH touched my life in a way nothing else could. Today I can say I am most grateful as it made and shaped my life in a very unique way nothing else could have.
MRKH gave me the opportunity to live a life filled with trauma and trials from yesterday to today, a life of triumph and transformation. I’ve learned and continue to learn my own truth with passion, persistence, and purpose. To bring advocacy and awareness about MRKH is a joy. No longer hiding, I’m sharing MRKH so that the world and doctors especially will know how women with MRKH feel.
Taking a stand and sharing my story for His glory gives me a chance to brag about God as well!
Eggs, les oeufs, los huevos, le uova, Kananmuna, Eire, jajka. On September 25, 2014, I had a Bilateral Salpingo-Oophorectomy & Hysterectomy. My functional ovaries and non-functional, severely underdeveloped uterus that defined so much of my #MRKH life, abruptly exited my body through a 3” (7 cm) incision just above my public hair. My #LynchSyndrome diagnosis and Stage 3B colon cancer created an urgency to remove these organs, which carried a high risk of future cancer.
I turned 47 three days before I discovered my tumor and 5 weeks before my surgery. I decided years before to remain Childfree. I loved my life. I poured everything into my career, earning a PhD in Genetics and researching the earliest stages of mammalian development. Blastocysts are still some of my favorite images.
In 2012, I co-founded the Beautiful You MRKH Foundation with Christina Ruth & discovered a new passion — improving the health of people with MRKH.
I embraced this new role and defined myself through MRKH Advocacy, filling a deep hole created by this diagnosis many years ago. I owned my MRKH!
POOF! On Sept 25th, 31 years of being that person with the weird uterus suddenly vanished. I could check a box they said hysterectomy. I could check a box that countless others had done before me. I was no longer 1 in 5000. I was Childfree Amy with a hysterectomy.
I mourned that non-functional, weird, annoying MRKH uterus. I grieved for the aged eggs that were discarded with my ovaries. Even though I was happily Childfree, I mourned the finality. Biological children were no longer an option. That choice was gone.
As I reflect on Childless Week, I restate that I LOVE my Childfree life. I have zero regrets about not raising children and yet I accept that it’s complicated, as roads less traveled typically are. What I appreciate about the life I chose is that I get to live by my own rules. That freedom fills me with joy every single day. I sincerely wish that each of us feels that joy, the joy of living your life by your own rules, whatever they may be.
Dating can be complicated but dating with MRKH can make it even more complex.
From a young age, society tells us that as women, our purpose is to get married and have children.
So knowing from 17 years old that my journey to have children would be complex made dating scary. It was even scarier when I discovered I couldn’t have sex (this was before I even knew I had MRKH).
I didn’t know what was going on with my body so dating at this time was dangerous for my mental health.
At 17, before my diagnosis, I was in a very unhealthy relationship, on both sides. He knew I couldn’t have sex and said he was fine with this. But I then discovered he had cheated on me with a woman who had a child.. so this was a double whammy. I was hurt so I responded by cheating on him; hence the very unhealthiness of the relationship. When I broke off the relationship, he told me that no one would ever love me due to my condition. This whole experience reassured my belief that I was unlovable and no one would ever want to be with me due to MRKH.
I have had many other unkind things said to me by sexual partners over the years of dating. Those things made me feel unlovable so I chose to search for love in the wrong ways. I would drink and have “one night stands”; they would leave me and again I felt alone and unlovable. The wounds kept getting deeper.
I tried to tell myself that the mean things said to me about my body, vagina, and condition were untrue but deep deep down I wasn’t convinced and honestly, even after years of healing I am sometimes still not convinced.
At times, when things had the potential to go well, I would sabotage the relationship. I would hurt them before they could hurt me. I built a wall.
Now, I have found a partner that loves me for me. He has worked hard to tear down my wall that I built so high and so strong. He chips away at it daily and I know some days are still hard for him. He has shown me unwavering love and proven to me to that I am enough, that I am loveable, and that my condition does not define me. I am so much more than MRKH.
Having a loving partner has helped me heal but I have had to work hard to heal myself, for me. To be a good partner, we need to heal ourselves and love ourselves first. We should not depend on others to heal us, that is not their job or responsibility.
So to anyone struggling to feel lovable, worthy of love, or enough, please know that you are lovable, you are worthy of so much love, you are enough and you are so much more than MRKH. You do not need to settle for less than the love you deserve. You deserve to be happy and to feel loved. You are strong as hell so be confident and be proud of everything you have overcome. And if you need, lean into our amazing MRKH community; so many of these ladies have helped me in more ways than they will ever know! 💕
After 10 years of hesitation, ponderation, and contemplation, finally I made up my mind to come up with my truth which I had been hiding throughout my life i.e. the uniqueness with which I have sent to this world. A ‘rare but not so rare’ medical condition that I have been suffering with – MRKH syndrome. Yes, I am an MRKH warrior and India’s first MRKH advocate.
Due to social stigma, I had the clear instruction from my family and doctors not to talk about my condition to anyone. As, I am a person with expressions, and I am open about talking or discussing anything, it was very suffocating for me to hide the things from friends and relatives. But, on the other side, I wanted to reach in that mental state, where I don’t be impacted with any kind of reactions from society – be it positive, negative or utter silence.
Finally, I reached that state where I really don’t care what others think about me. I am an introvert person who has spent her almost entire life with the family members. I always have limited friends and I am an isolated person by nature. So, literally others’ opinions were not going to impact me as I have a least interaction with people in my current scenario/atmosphere. Also, I have reached the state where I have not much hope left for my future and I have nothingmuch to lose from here. Now, I want to spend rest of my life for my purpose, for my MRKH sisters. I want to give a meaning to my life.
Now, when I have opened up and revealed about my medical condition to the world, I have made a peace with myself. Now, there is no spinning thoughts, no storm in my mind and no more tangled thoughts.
Here, I would like to share my experience after the revelation which I recently made. I want to talk about the responses I received and how I felt.
I wrote the post (of revealing my medical condition) on Sunday and published it on Facebook on Sunday night without thinking anything about people’s reactions. That very day, I found Christina and Amy by my side. I was feeling so strong and determined which I can’t describe in words.
Just after publishing my post on Facebook, I started getting responses (private messages, comments) in Facebook, WhatsApp and messenger.
I had usual plan of working from home from Monday like any Monday. But, unexpectedly, I received positive responses, heartfelt and warm messages. By reading those messages, my heart was melting, I had tears in my mind, and I was so overwhelmed. I had tears rolling down my cheeks now and then. I wasn’t able to control my emotions. I took a day off because I knew I wouldn’t able to focus on my work.
I am thankful and want to express my gratitude from the bottom of my heart to my school friends, college friends and ex-colleagues, ex-boss who sent me heartfelt and encouraging messages. All of your responses gave me a strong positive feeling and a courage to stand on my own belief/my choice and gave me a confidence to move ahead holding my head high. To my pleasure, as few offered their help to fulfilling my goal. I just felt that humanity still exists.
I would like to thank my MRKH friends and sisters. Indian sisters of course gave me a silent support as they are protecting their privacy that I highly respect. And, a special mention to Christina who wrote such a beautiful post for me. I always feel that I am lucky to have such a great-hearted person as my friend and mentor who is truly a friend and loves me selflessly. And, she is and will always be closest to my heart. Amy, a true fighter and an inspiration to me, gave me proper guidance and support when I needed the most.
While talking about my MRKH sister, how can I forget Ayesha, who is such a sweet-heart and a very sweet person and with whom I always enjoy talking, sent me a lovely message and stood by me. Hasna who always kept me in her thoughts, provided me an immense support, confidence what I needed the most at the crucial moment.
Thankfully, I did not get any negative and hurtful response. But there was utter silence among the co-workers, neighborhood, and relatives except one or two co-workers who sent me private messages. Whatever may be their reactions, I couldn’t take this in a positive way. I felt like now, I don’t exist for them or I never existed for them.
Having said that, I didn’t keep any negative thought in my mind, because my heart was already felt with happiness and thankfulness that I received from my well-wishers, my true friends and I really felt that I have kind, empathetic and big-hearted people around me. What if they are far from my place, now I have a special place in my heart for them.
On Wednesday we wore orange to celebrate National Infertility Awareness Week and to bring awareness to 1 in 8 couples who struggle with infertility. In addition to wearing orange, I asked the community what is something you wish others knew about infertility. Below are some of your responses.
Thank you for everyone who participated. This was so much FUN!
🧡 Our Faces, our bodies, our emotions our baby’s memorial behind me….This is the reality of infertility.
🧡 We are not invisible.
🧡 INFERTILITY is an emotional rollarcoaster and you only grow through it when you go through it.
🧡 Just worked out… might not be able to hold a baby but my body does a whole freaking lot!
🧡 Don’t be afraid to stand for something, being “different” is not a shame.
🧡 We might laugh and smile but behind that is more tears.
🧡 With a baby or without, you are valuable, you are whole and you matter!
🧡 Anyone can be affected by infertility.
🧡 Infertility is a very personal thing and no one is obligated to tell you what it looks like for them.
🧡 Even if you don’t want to compromise to be a mother in your desired way, this won’t make you incomplete. You have many roles to play in your life. And your desired roles that you play in your life, make your identity complete!
🧡 Everyone’s experience is different.
🧡 Take your friends lead on how they want to discuss their experience. Acknowledge and validate how they’re feeling and let them know you love and support them unconditionally.
🧡 I’m reminded that no matter my circumstances, I live in a country where there are few consequences to being a woman without children. My wish is that every single person going through these very personal realities will have the support they need, will feel loved and will be able to make their own choices. No
🧡 YOU ARE NOT ALONE.
🧡 Infertility is not a taboo subject.
🧡 Please remember to be kind as so many people are fighting a battle you know nothing about. Many people are fighting in silence and it’s none of your damn business if someone plans to have children or not.
🧡 I wish more people knew how common infertility actually is. 1 in 6 Canadian couples and 1 in 8 couples in the USA are affected by infertility.
🧡 I know you’re scared, but you can handle this because you’re a warrior, beautiful and brave.
🧡 You are not alone. We are not alone.
🧡 Infertility may not affect you personally, but infertility affects 1 in 8 couples. This is someone you know. Be kind. Infertility is a very difficult road to navigate.
🧡 I’m a black woman. I’m a poet. I’m an advocate. I’m 1 in 5,000. I’m 1 in 8.
🧡 Please be thoughtful in your choice of words when you are talking to a friend who is struggling with infertility. You never know what someone may be going through.
Conversations around infertility are hard. It’s very difficult to know exactly what to say to a person who is grieving. We tend to present solutions instead of simply saying, “I’m here for you.” As important as it is for us to give ourselves grace, it’s important that we give our friends and family grace as well. I know it comes from a good place but telling me that adoption and surrogacy exist does not help.
Adoption and surrogacy aren’t a quick fix solution for infertility. It doesn’t solve it. There are still moments of anger because I am unable to do something that was supposed to come naturally. There is this feeling as if you’ve failed your family or a future patterner. There is this feeling that your body failed you.
Adoption and surrogacy aren’t a solution to my grief. Everytime I see a pregnant woman I want to run away and hide. I am envious and in awe of how beautiful they are. I feel this emptiness because love was supposed to grow here, joy was supposed to grow here.
Infertility took away my choice, only leaving me with adoption and surrogacy as options. I know there are other options out there but it seems very overwhelming. MRKH is a journey and we are called warriors for a reason. I know that I’m strong but sometimes I just need someone to hug me and remind me that I’m worthy.
So family and friends, next time approach them with love. Hug them for as long as they need. Let them know that their feelings are valid and that they are not alone. Tell them how beautiful and worthy they are. Even if they don’t believe it in that moment. They don’t need you to understand, they just need you to listen.
As I sat down to start my letter to my 20 year old, freshly diagnosed self, I couldn’t help but get lost thinking about the day my life changed. Before I get to my letter, I want to take you with me on a journey back to that day in April, 2010, when I was diagnosed with MRKH.
I barely remember the car ride to the gynecologist’s office. For the life of me, I can’t remember if my Mom and I spoke one word in the 20 minutes between our house and the doctor’s office. I’m sure we made an attempt at small talk to lighten the mood. Our silver Hyundai pulled into the nearly empty parking lot. I let my Mom get out of the car first and heard her door shut. I took a quick moment to myself before getting out of the car. I remember walking bravely behind my Mom into the doctor’s office. I was breathing shallowly, from my chest, unable to get a full breath, no matter how hard I tried.
Amazingly, I managed to put one foot in front of the other. Walking up that ramp was like walking through quicksand. We were greeted by the gynecologist at the reception door. She gently directed my Mom into her office, and me into the examination room. There were a million thoughts racing through my mind, but the chaos of spinning thoughts mutated into white noise. Between MRIs, ultrasounds, and other specialist appointments, I’d seen four doctors in six weeks. One memory stuck at the forefront of my mind as I undressed and lay on the examination table. “It’s so strange. I can’t seem to find a uterus anywhere. I’ve never seen anything like this before.” Those were the last words the ultrasound specialist spoke a week prior. “…Can’t find a uterus anywhere. Never seen anything like this.” I received no explanation, just a referral to be there, on another examination table. The gynecologist gently knocked on the door, and asked if she could come in. I swallowed the lump of fear in my throat and gently choked out, “Yes,” knowing that within minutes there should be some sort of clarity around the bomb the ultrasound specialist dropped into my life.
She asked me to put my feet up into the stirrups, and I suddenly felt the cold stale air on my naked skin. Using a clinical, cold utensil, she prodded, invasively, where a vagina should have been. Feeling the horrible pressure, I remember trying to focus on the stucco ceiling and the flickering fluorescent lights, but I couldn’t focus on anything except the feeling. I knew in my gut something was not right.
After what felt like an hour, the doctor nodded her head silently, gently placed her cold latex covered hands on my shins, and said, “Thank you. You can get dressed and meet your Mom and I in my office.” She left the room. I sat up slowly, peeled the crinkly examination paper from my body, and stepped onto the ice cold tile floor. I pulled my jeans back on and attempted to tame my mind. It felt like I was thinking about nothing and everything at the same time. Once again, the chaos transformed into white noise. I took a deep breath and attempted to ground myself. I rolled my shoulders back, bravely against the fear, knowing that on the other side of that door, whether I was ready or not, was an answer.
I left the examination room and stepped into the office. I sat apprehensively in the aqua coloured chair beside my Mom. The doctor took a deep breath. What on earth could the doctor need to be preparing herself to deliver? It must be heavy.
It was raining that day. I was closer to the window than my Mom, sitting to her left. I remember looking at the raindrops hitting the panes of glass. I remember they were the only thing keeping me slightly tethered to reality. Part of me was trying to dissociate, float up and out of the office, and escape. The rest of me was fully focused on my Mom. Smiling gently, I tried to silently reassure her that everything would be okay, while simultaneously trying to run out of my body.
The doctor folded her hands and leaned in. “Kylie, you have Mayer–Rokitansky–Küster–Hauser Syndrome, also known as MRKH.” She paused. It didn’t even sound like English.
“MRKH affects 1 in 5000 women. The syndrome is a disorder that occurs in females and mainly affects the reproductive system. This condition causes the vagina and uterus to be underdeveloped or absent, although external genitalia are normal. Affected women usually do not have menstrual periods due to the absent uterus.”
With the raindrops on the window to my left, attempting to keep my eyes on the doctor in front of me, and my internal world feeling hyper aware of my Mom to my right, I couldn’t focus.
“Kylie, this means you will never have a period, carry your own children, or give birth.” Wait, what?
I felt the earth stop turning. A hard, jarring stop. The room went silent and still. No one spoke or breathed. Both parties waited for the other to make the next move.
I’m an empath. I have a sixth sense about other people’s emotions. I could feel the inside of my Mother’s chest cave around her heart as these words left the doctor’s lips. I looked at her and I felt her mirroring me. She attempted to put on her brave face to let me know it would be okay. At the same time, she was trying not to crumble under the weight of this diagnosis.
Looking back, it would have been okay to break. It would have been okay to let the armour crumble around our hearts. It would have been okay to cry, to feel, to let it sink in.
She hurt for me and for the opportunity that was taken away in that moment. I hurt for her and for what she had taken away. Nothing in life is ever guaranteed, but there are choices you expect to make for yourself, like pregnancy and birth.
Those choices were ripped from me in that moment, like a limb from my body. When had anyone ever heard about being born without a uterus or a vagina where a vagina should be? The doctor went on to say, “You have a dimple opening of about 2-3 cm where your vagina is. Through surgery or dilation therapy, you will form a regular length vagina and be able to have vaginal intercourse.” That was it. It was too much. I wasn’t listening anymore. I was trying to wrap my head around this life stopping news.
I was concerned about my Mom, and the fact that I walked into the office as one person and would walk out as different one. The diagnosis and the missing parts of myself suddenly transformed into an emptiness I didn’t know I had been living with. I was suddenly so aware of the emptiness. I was born with it and there was no known cause. News like that changes you.
If I could travel back in time to that day, knowing what I know now, I would take my Mom’s hand in my own, and say, “It will be okay. It will be hard, and I know it feels impossible and heart breaking, but it will be okay.”
And that was the moment of my MRKH diagnosis on a rainy day in Oakville. The girl sitting in the aqua coloured chair, trying to be brave, is the version of myself this letter is for. Here is my letter to my 20 year old self:
Dear Brave, Fragile, Beautiful Kylie,
Be gentle with yourself. This is not something you will be able to wrap your head around. This isn’t something that can be easily healed, tied up in a pretty little bow, or brushed under the rug. This is big, ugly, weird, isolating, heart-breaking, soul-crushing, scary, heavy, intimate, and vulnerable. You have a long journey forward to lighter days. You have always, and will always, be a fighter. So, while this feels impossible, know that you will fight against it, fight with it, and ultimately, you will fight through it. One day you will wear your scars as badges, speak openly without fear, and take pride in every moment you thought would break you. Those are the moments that build you up and make you the warrior you are.
You’ve spent many years putting on a brave face, keeping things to yourself so as to avoid feeling like a burden. You are not a burden. You have never been a burden.
Sometimes the most powerful move you can make is being honest when you feel broken, don’t know where to turn, and ask for help. You need to lean on the people around you, especially your Mom. She just wants to support you, love you, and hold you. She is scared too. Neither of you have a roadmap for this journey, and it is okay to let your walls down and talk to her. Let her in.
It takes serious courage to open yourself up, take the armour off and say, “I’m not okay.” By doing that, it will not only bring you closer to your Mom, but towards yourself and self-acceptance on this journey. I promise you, you’ll slowly feel the weight lift from yourshoulders. You both will. Remember, you are experiencing this together, but separately. Find togetherness in this experience of tackling the unknown, and know the other is there for support. There is no roadmap or right next move for this. Being vulnerable and sharing feels like cracking yourself open, but I promise, every time you do it, you will build up your strength and your resilience. You can do it. But remember, be gentle with yourself, because it will take time.
As a life-long people pleaser, you need to know that you can’t keep the peace around you by suppressing your own emotions, experiences, or feelings. It doesn’t disappear just because you don’t talk about it. It gets internalized and it feeds on itself in ways that poison your insides. You are not protecting your Mom by not talking to her, attempting to keep the peace. You are building your walls higher. All you both need right now, is for you to open up, bring those walls down, and talk to your Mom. She is in your corner. You are not a burden. You are worthy. You can heal. You will heal.
Take a deep breath, this is a lot. You’re doing great. You have so much light inside you. Lean into that light.
I also want you to ask for a therapist. By letting those walls down, a lot is going to pour out, and that is okay. Sometimes you have to take something apart before you can put it back together. I, we, like to carry our own weight of the world alone, but this one is bigger than us. It is bigger than us, so we need to get in front of it before it gets in front of us in a crazy way. There is no weakness or admission of defeat in asking for help. Remind yourself of this everyday. It’s tough to break life-long patterns, but you’ve got it in you. You are a match for your mountains.
Just like leaning on your Mom, you need to lean on your people. As I mentioned before, suppressing or not sharing isn’t going to make something go away. It sure isn’t going to make it any easier when you suddenly want to talk about it. You’ve got to start small. Share small details with people you can trust. Practice sharing with people who feel safe.
Just like everything else in life, you’ve got to practice. Flex those muscles and get stronger. Try journaling about MRKH. Get used to having conversations about it with yourself. Sit with it and just feel feelings as they come. You can do it. You’re you. I know it’s not always comfortable to share, or sit in silence with your thoughts, but the more you do it, the easier it will get. You’ve got to get used to being uncomfortable. And try not to anticipate how people will judge you, or make up your own stories about what they will think when you do open up. It’s not helpful or fair to you.
Repeat after me. I am not weird. I am not broken. I am worthy. I am beautiful. I am strong.
On the topic of getting used to being uncomfortable, do your dilating. The time is going to pass either way, so while this physical therapy brings up all of the feelings of shame and unworthiness, this is part of your healing journey. Not all of it is pretty, but it will get you through this dark tunnel, to the other side. Remind yourself again. I am worthy. I am not broken. I am not a freak. This does not make me less of a woman. I will get through this. Journal about your feelings, say these affirmations, lean on your people, and talk to your therapist. You will start to see how these acts will come together and serve as tools you can access when you face hard moments. Hold these tools close because they will carry you forward. You already have everything you need inside yourself. You just have to believe.
And please, try not to put too much pressure on yourself. In time, you will get there. By the nature of this diagnosis and it’s subject matter, it isn’t easy to talk about. Talking about the fact that you were born without a vagina, therefore can’t have “normal” sex while being a 20 year old in college?! Having people potentially find out that you haven’t really had “normal” sex yet? I know that feels like the worst thing that could ever happen to you right now. Also, please know, the whole idea that vaginal intercourse is the only or main way to have sex, lose your virginity, or be intimate with someone is a societal construct. I know, that still doesn’t help you at this moment, but it’s an important reminder when thinking about what intimacy really means.
The weight of this isn’t easy. It’s crippling. Living with constant fear and shame that people will figure it out makes life feel like you’re always on the run, never truly showing your whole beautiful self. There will be countless times in your life when women around you bring up tampons, periods, cramps or their cycle. You will smile and nod, play along, and tell a little white lie about when your period comes, but every time a little piece of you crumbles inside. Remind yourself in those moments, “I am a woman and I am worthy of feeling powerful and beautiful in this incredible body I was given, just as it is.” We live in an empowering world where we are redefining what it means to be a woman. Not all women bleed, have children, or have vaginas. MRKH does not define you.
While we’re on the topic of periods, sex, and intimacy, I know the idea of being intimate with anyone is suffocating. You’re constantly horrified that they will touch you and find out that you’re different and figure out your dark secret. It’s okay to feel this way, but don’t beat yourself up about it. Just know, as I mentioned before, that cutting yourself off from connection in this way feels like protecting yourself, but it only builds higher walls. Baby girl, let people in! One day you will truly believe that your different has been your beautiful and your magic all along.
I’m excited to let you know that when you do finally feel confident enough to open up to a partner about it, their response is going to light you up. You’re going to tell someone who ends up being very special to you, while sitting at a two top table at Amsterdam Brewery on a hot summer night by the lake. They ask you what one of your tattoos mean. You go on to tell them about the tattoo and about MRKH. Sharing feels like stepping naked out of your armour for the first time, but you still open up. That takes so much courage. Your words land on the table in front of you and you look up and catch their eye. The way they look at you, feels like they are seeing inside your soul, who you are, for one of the first times anyone has. They tell you that this makes you even more beautiful and special. In their eyes, you see them seeing your strength, beauty, power and light. Let that wash over you. Years later, they will bring this nightup again and speak so highly of your ability to be vulnerable and confident enough in your own skin to share about MRKH. How awesome is that? That is you they are talking about.
And you know what? You are going to get through your dilating and your physical therapy, and you’ll have sex using the vagina you made. And it will be awesome. Come on, let’s smile about it! How many people out there get to say, “I built my own vagina. It was designed and created by yours truly.” Not many! In fact, it’s about 1 in 5000. MRKH is going to change the trajectory of your life, but always remember that it does not define you. As much as you want MRKH to disappear or change, or sometimes you want to disappear or change, it isn’t going anywhere. And that is okay, because the human you are, and who you will become, is absolutely magical. The resilience, grit, strength, perseverance, grace, and light that you have within yourself will carry you through every battle, low moment, and every dark night. Even if you walk away from those battles tired, worn, bleeding and broken, you still walk away winning because you fought and ultimately survived. You should be so proud of you. Find pride in your story and do your best to find moments of joy and hope through the darkness of your journey.
There’s one last thing I want you to know before I sign off on this letter. The person writing this letter to you, the incredible human that you become, is confident, strong, powerful, and full of light. She is more and more present everyday, embracing her story as her own and using it to fuel her fire in this world. She does talk to her Mom, lean on her people, talk to a therapist, embrace being uncomfortable, and fall in love with life. She is constantly learning and growing. While it still hurts some days, she never lets go of hope and knows there is always a light at the end of the tunnel, even if she can’t see it in the moment. She doesn’t give up just because it’s hard. She falls and she gets back up. Every. Single. Time. She discovers the strength in vulnerability and the bravery it takes to fight forward when you feel you can’t go on. Her journey of reclaiming her worth, feminine energy, confidence and story is empowering, raw, and inspiring.
You were made for this story. It is part of you. It is yours.
You will conquer anything and everything you ever put your mind to.
Self care is an extremely important quality to have. Without it we would find it hard to cope with certain situations, such as relationships, our work, and even home life.
For me it’s vital that I practice self care regularly. It’s not just taking care of basic needs like making sure you get enough quality sleep every night, eating healthily and getting plenty of exercise. Its just as important to be * KIND * to yourself also. Taking time out for *YOU! * to do what makes you happy, and content. Making sure you have that quality down time so you feel recharged to tackle the next task or situation.
For me, I make sure meditation is a part of my daily routine, as well as using it as a necessity for supporting me in my sleep routine too. If I’m able to get quality sleep, I can focus and take on the new day!
As we all know sleep deprivation is a major factor and can and will effect our well being, as well as physical health! I’ve sadly been a victim to this and for a short period of my life, my health, and well being have proven to have suffered greatly. When having to struggle emotionally and physically….. I survived!!! I learned to be more aware of the signs, know when to slow down and recharge.
Being kinder to myself hasn’t always been easy. I’m very much a person who thinks of others first, likes to please people, and hates to say “ No.” It has taken me a long time to recognise that the only person who is in charge of my well being, is * ME.* This means being kinder to myself and making it a priority for my own well being’s sake!!
Positive/ uplifting quotes have always and will always be very important to me. I was recently asked “ what would happen if you didn’t have your quotes to reflect on and read?” I replied “ I would feel muddled inside my head. I would feel no hope, no faith, no belief. They are like a comfort blanket, my lifeline! My quotes help me to keep “my well being” and “self care” topped up!! I even have a little book of my favourite quotes that I can refer to in my times of need.
My two favourite quotes are :- 1: “ Believe, things happen for a reason, just believe” 2: “ He who laughs last, laughs loudest” ( one my Mum taught me shortly after my MRKH diagnosis)
My passion is for everyone to learn the importance of self care and how the quality of a strong connection and good practice will enhance your well being!! Get that right, your world is your oyster…… and your life can reach new, exciting, possibilities!!!
I am a MRKH Warrior! 💛
I am 1 in 5,000. I am unique.
Look after * You * and you can conquer the world!!!!
So MRKH is a lifelong diagnosis, which comes with an assortment of challenges. I feel these challenges are increased further, by coming from an Asian Muslim background.
Firstly, you really face identity crises. You’re always taught from an Islamic perspective you are ‘complete’ as a women and accountable for your actions, once your periods begin.
So this left me feeling, am I complete as a woman?Where do I fit in?
I later explored the identity topic, in a MRKH group therapy session with the psychologist and a few MRKH sisters. I then realized I hold many identities and not having periods or lacking female reproductive organs, does not make me any less of a women. Allah even mentions in the Quran he makes barren, who he wills (Surah Ash-Shura: Ayyah 50). So to me this verse in the Quran highlights I’m beautiful, complete and perfect as a woman, just the way Allah has created me.
Initially, I felt MRKH formed my identity massively but now I realise this is not the case and MRKH is just a part of me. Not only am I a women with MRKH but I’m a daughter, sister, aunty, teacher, niece and a lot more. I have many lovely roles, which form my identity.
Another obstacle I face is when it comes to finding a partner to marry.
Having your own biological children is a massive deal in the Asian Muslim community and having MRKH can make me feel like my value is less because of not being able to have the ability to carry my own child.
Parents have introduced me to infertile or divorced men with children, from their first marriage. At times I’ve felt frustrated by this and think to myself, is this my only option. Why should this be my only option?
Thirdly, IVF surrogacy is not permitted Islamically and this is tough. People often tell me, ‘oh you can adopt’ and yes I’d love to adopt. I have a lot of love to give and I’d love to give a child a loving home. However, I’d also love to have a biological child and often wonder what a mini me would look like!
Fourthly, the biggest issue we Muslim Asian women face is the stigma, shame and taboo around topics regarding sexuality. This is not a topic commonly discussed so openly. Initially, even my own mother told me not to tell anyone. This made me feel like MRKH is something to be embarrassed and ashamed about. Even my Indian GP DR advised to my mum don’t tell anyone and just get her married! However, now I realise Allah has created us all beautifully and perfectly, Alhumdulilah! There’s no normal and we are all different in different ways and that’s what makes us unique beautiful individuals.
I went to a small girls only Islamic school and it was so obvious and noticeable that I had not got my period, especially because when your on your period you don’t pray the congregational prayers. This made me feel so out of place, weird and incomplete. I felt I was really missing out on what should have been my given right as a women. We really need to add MRKH and variations of sexual development, in the GCSE Biology curriculum, so no one with MRKH feels alienated, weird and incomplete because we are not! I actually had to self educate myself about the reproductive system and periods. My school and family felt so shy about the topic and therefore only gave me limited and incomplete information. I taught myself about periods and the reproductive system. By searching online since my school had actually stapled the reproductive system textbook pages together, since they contained naked bodies. So you can imagine how I felt about the reproductive topic anyways and then to be diagnosed with MRKH, really was a shock to the system! The diagnoses really forced a 14 year old to grow up a lot quicker than I should have and that was super tough!
Now, I am really overjoyed to see there’s a few amazing Muslim advocates who are speaking up about sexuality and the female reproductive system, on various social media platforms. It’s also my passion to get rid of shame and stigma, so hence why I took the step to go public about MRKH in September 2020. I even did an Instagram live about MRKH for herstory.inspires. It was a big step for me, especially coming from a Muslim Asian background but I’m glad I did it! Many sisters, especially Muslim sisters have been reaching out to me. I’m so happy to know I’m making a difference to my special MRKH sisters.
Remember obstacles can stand for:
I hope you enjoyed reading my insights on what it’s like to have MRKH as a Muslim Asian women.
I’d just like to end by saying thank you very much for taking time out, to read this.
Lots of love and virtual hugs to my worldwide sisterhood!