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!
First off, your hair looks great today! Look at you go! Alright, let’s sit down. You’ve been through some shit, and I want to have a very real conversation as someone who has been there, literally.
The diagnosis you got before you hit your teenage years – the one where you likely blacked out mentally because it was too much to take in, to understand, to process – willlead you on an adventure. Granted, you never signed up for it, and you are still wildly unprepared, but it will be full of self-discovery, growth, courage, connectivity, and eventually acceptance. This diagnosis will impact you beyond the physical – it will challenge you mentally, emotionally, relationally, spiritually, and it will even rattle your self-worth if you let it. I know it already has. It will force you to grow quickly, stretch yourself, and find your strength. It will also connect you with women across the globe, and make you a more caring, open, and understanding person. It will challenge you. It will change you. It will force you into all emotions (sometimes unpredictably), and it will push you to find the good in tough situations. It’s quite the journey, and I know it’s off to a really crappy start. Like, you lost your car keys, forgot your wallet at home, your phone just died, you’re all alone, you have no idea where you are… and look at that, it just started storming, kind of start.
Let’s dive into the storm you’re currently standing in – The information you know right now about your condition is incomplete at best, and at worst – wrong, poorly communicated, and full of projections about how a doctor thinks you should alter your body and live your life. You were told that major reproductive organs never developed. Missing. There would be several steps ‘needed’ to ‘fix’ this to make you a ‘real female’, and it would take years. You went through genetic testing to confirm your sex, which made you question your identity. You were never told a name of the condition or that there are other people whoalso have it. The details you did hear were maybe even more damaging – which included a list of intensive medical procedures that seemed to rival medieval torture techniques and the instructions that “once you find a husband,” you both would sit down with the doctor to figure out how to ‘fix your body’ together. You were eleven. You leave doctor’s appointments feeling shattered, likedecisions about your body are not wholly yours to make, that this body is not yours, and that the option to live a ‘normal female life’ is not in the realm of possibility. So what did we do? We buried it. Deep. Then we built steelbeam reinforced walls around it so it would never come out. You’re a problem solver. Cool, we took care of it… right? Not so fast, dear seventeen-year-old me.
We need to talk about the narrative about needing to ‘fix’ aspects of your body. This was not new to you when you got this diagnosis. Throughout the years, several medical specialists have told you they need to ‘fix’ this, and ‘fix’ that about your body to make it ‘normal’. This turned into the belief that your body needed to be fixed because your body was ‘broken’. If your body was broken, then you were broken. Reject this. Scream this: I AM NOT BROKEN.
Pick up your bible. Oh, can’t find it because you haven’tcleaned your room? I got you. Psalm 139:13-14 “For You formed my inward parts; You created me in my mother’s body. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works.” Now read it again. Now really read it. Imagine God telling you this about your condition specifically, because He is. You were fearfully and wonderfully made.
You are not ‘less of a female’ because of your anatomy. Others are not ‘more of a female’ because of theirs. Society has so many expectations about how the female body ‘should function’ and how it ‘should look’. Dismiss these narratives and the social stigmas that go along with them. There is immense freedom waiting for you when you come out of being buried by shame. Embrace your differences, share them with others, help foster education, connectivity, and understanding. We need more of this in the world.
Also, please note my excessive use of quotation marks – these are the narratives you will challenge but first, you need to reject them. They are mental trash living rent-free in your brain and they do not benefit you at all. Clean them out. God made you this way for a purpose and it’s going to be used to serve His glory. It’ll be a journey to figure out how to do that and a wild adventure along the way. You’llexperience highs and unfortunately, pretty low lows with this. Lean into your faith, you’re going to need Him and He will be your rock.
The way you were diagnosed, the information provided, and the approach medical experts took with you at such a young age will take many years to heal from. I want to help you out. The more you talk about the condition, reject the narratives told to you, advocate for yourself among medical professionals, and look for alternative options (doing nothing is also an option), the sooner the skies begin to clear and the sun comes out a bit. Find a different medical team ASAP. Seek information elsewhere. Make sure the medical decisions you make are solely for you. Care for yourself beyond just the physical aspects. I’ll save you a few years – the condition is called Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) and you are not alone. Actually, 1 in 5,000 women globally also has this syndrome. That’s a lot of women. Look up the community online, its members are incredible and absolutely inspiring. Welcome, they’ll be thrilled to have you.
Those walls you built – while it may feel like they protect you, they also shut everything out and leave you numb. I know you feel alone and think nobody else in the world has this condition. There is a fabulous community out there waiting for you with open arms. Instead of having walls up all the time, start building bridges to others. Open up to people you trust, they will be a huge support system for you and will help you immensely through different stages of life. The more you speak about it, the deeper your connection with others will become and the more accepting you will be of yourself with this syndrome.
This will not go away by pretending it doesn’t exist. Against your belief, this diagnosis will also not get worse if you talk about it. It’s also not your identity. Talk about it and open up to others when you feel comfortable. Approach it from a position of strength, of overcoming obstacles, and let your path to self-advocacy shine. The women who courageously shared their story before you will be the reason you find a community. Eventually, you will have the courage to share your story with them and you’ll be met with a powerful ‘me too’ response. Never underestimate the power of a ‘me too’. With the vulnerability, openness, and advocacy of the MRKH community, you will find the path that is right for you.
You got this. You always have. You’re a badass. I’m pleased to tell you that it does get easier eventually. The sooner you start acknowledging it, allowing yourself to feel emotions, and begin to heal, the sooner good parts of the journey can begin. This diagnosis and syndrome – MRKH – doesn’t need to be your biggest secret, it’s part of you and will send you on a unique journey of a lifetime. Buckle up for the ride, but let others come along on this adventure with you. This road wasn’t made to be traveled alone.
It’s been more than a decade since you were diagnosed with MRKH and you have been living a fruitful life.
Up until you were diagnosed, you knew something different internally.
How? You just knew. You felt it.
When you were in your high school health class and the teacher was lecturing on the female reproductive system, it triggered you that you weren’t the same. You weren’t getting your period.
One thing is for sure, MRKH has made you super empathetic and you wear your heart on your sleeve.
You are very in-tune with your emotions when it comes to expressing how you feel about anything! The confusing part is, when it comes to talking about MRKH, you feel numb — but everything else in your life — you feel it 100x harder.
For the next few years you will have visited doctor after doctor after doctor, until you finally get the answers you have been searching for. It wasn’t the best news, but it wasn’t the worst news either.
What mattered was that you were okay and you would continue to be okay. Your mom was more affected by the news more than you were at the time. Perhaps it was her motherly instinct. It’s still a topic you two never talk about.
It’s like you’ve learned to ignore it and not speak about it, though you think about it every day.
You will watch your two younger sisters become adults and their reproductive systems are normal. You think, “Why am I the only one who was born without a uterus?”
It will kill you inside, but you don’t show it.
At the time of your diagnosis, you didn’t really care because having kids was nowhere near your immediate plans. You knew it was something you had absolutely no control over, so you dove into the one thing you did have control over, your future. Your desire to succeed professionally.
I wish I could go back and let myself feel the emotions of learning that you, as a woman, will not be able to have kids. However, a decade later and you still feel the same about it — numb.
You have been numb about the diagnosis and will continue to be numb. That is — until you meet someone that changes your perspective on having kids. Bittersweet to tell you that you had a special person in your life that understood your syndrome, but the relationship fell apart. You are healing.
For the next eight years, you have taken that sadness of knowing you can’t conceive and apply those emotions into your professional career. You have landed media internship after internship. Growing as a professional journalist and news producer. Your dream of moving to Miami, FL will come true and you will be self-fulfilled to the rim.
A constant thought you’ll have is, “Well I can’t get pregnant. I can’t have a family, so I will devote my time and energy into building my professional legacy.”
However, as the years have gone by, your priorities have shifted. The career and lifestyle you once longed for, is no more. Are you still working in the media? Yep. Are you happy? Yep. Do you want kids? Ehh. It’s complicated.
Now, at 26, and after being in a relationship for seven years and thinking you were so sure marriage would come, you never second guessed yourself with your partner. But, now that you’re in the dating world, you quickly realize the question of “how many kids do you want” is asked right away when getting to know someone new. So what do you do? You back off. You don’t want to share that side of yourself with just anyone, so you keep quiet.
For a decade, you have ignored the questions of “How many kids do you want?” or “When do you plan on having kids?”.
To be honest, being diagnosed with MRKH has played a huge part in your sex life. For as long as you can remember, you don’t really view sex the same way some peers around you do. You haven’t longed for it as a person with a normal sex-drive has. You’ll have weird days where you think you are broken because your sex-drive is low. As a woman, with attractive features, you don’t feel attractive because you yourself, don’t long for sex. The truth is — intercourse is very painful for you but you begin to be patient with yourself and you slowly but surely start to enjoy it. You research and speak to other women with MRKH and you are happy to know you are not the only one that feels that way.
Let’s clear up one thing though, just because you don’t enjoy traditional sex, doesn’t mean you don’t enjoy pleasure in other ways. You enjoy exploring what your partner is into and you long for someone who is patient and wants to understand how your body works.
One thing I wish I knew was that I wasn’t going to start enjoying sex until my mid-twenties. Your sexuality evolves as you grow.
In college, you decide to take an “Anthropology of Sex” course to learn more about the human sexuality. Actually – one of the lessons that your professor shares is the “Androgen Insensitivity Syndrome” or for short AIS. You are STUNNED to find out that there are courses taught about a similar syndrome like MRKH. You felt happy. You actually cried in the middle of the class and you shared with your professor that you, yourself are dealing with something similar. You received weird stares from your peers around you and your professor thanked you for being brave enough to share your story.
As the years go on, you’ll hear ignorant comments from friends such as, “You’re lucky you can’t get pregnant”, but in reality, they are the lucky ones who WILL get pregnant.
Another ignorant comment is, “You’re so lucky you don’t get a period.”
You’ll learn to ignore and live on.
It’s been more than a decade and you’ve been strong about the topic, opening up about not being able to conceive.
Your superpower has been your vulnerability and I applaud you for being so vulnerable with everyone you meet. Let’s talk about that for a second, you’ve only had one serious relationship where he understood your diagnosis and said he didn’t care and when the time comes, we’ll “figure it out”. The relationship has ended and it was a painful split. The most painful part of it was him saying, “I started to think about how you couldn’t give me children.” and that — is what broke you. What amazes me is that after the painful heartache, you continue to be the nice, smart, kind, resilient young lady.
You’ve been opening up your heart to other people that are crossing your path whom you’d never thought you’d be interested in. You’re afraid of how they’ll react to you not being able to conceive, but it’s something they won’t know until you feel it might be a long term relationship. For now, you are focused on yourself, your career, and your family.
Your MRKH journey is forever, it will end the day you take your last breath.
Continue to live your life with kindness, can’t wait to see what you accomplish in the next decade.