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.
Up until this age of your life, you have been dreaming constantly of carrying a baby, bringing it to this world, and starting your family. I don’t blame you, it probably is every woman’s dream or goal. But my darling you are about to experience the hardest, darkest, and loneliest phase of your life.
I see you sitting on that couch next to mom, with dad and your brother and sister in the room. Dad is now talking about God’s plan for each and every one of us and how sometimes things happen that we cannot understand, but must have faith that it is what’s best for us. And now he is explaining to you what the doctors found out during your ovarian cyst surgery.
I can see how much you are hurting right now; I know the pain you are feeling seeing your dream shatter in front of your eyes. That look in your eyes of fear and depression is familiar. I wish I could hug you and tell you everything is going to be okay, but I also know you are sick of hearing this from everyone around you already. You are wondering and asking yourself why me? What’s wrong with me? Out of everyone who hates children and doesn’t plan on having them, why pick someone who dreams of it? Is this really the works of God? What is the Wisdom behind this? At this point, I know you already started pushing everyone away and lost all your hope and faith.
I’m writing you this letter because there are things that you need to know. I’m sure you’re not going to like this one bit because it is easier to play the role of a victim, sit back and blame God, faith, and the world for your problem, but be strong and go through it all because you need it – this is how you will grow and eventually realize that who you will be in 10, 20, 30 years… is greatly shaped by this one rare condition.
Stop hiding your pain
Putting on a brave face, acting all tough and strong, and moving on with life so quickly and easily; Just don’t. Well, at some point you will, but now is not the time. Allow yourself to grieve, don’thold any emotions in. That emotional rollercoaster will screw you over if you keep holding it in. I know you’ve always believed in ‘ignoring it till it fades away’. To tell you a little secret, I sometimes still think like that, but not with this. YOU ARE NOT ALONE! While you may think people won’t understand, you would be surprised by how many will stand by your side, starting with your family, as believe me when I tell you this, it’s always better than how we imagine it will be. If you still feel like no one gets you, get on that damn computer and search for MRKH, something I know you always ignored to do because you just wanted to forget about it. You are part of a community; there are many women out there who are just like you and who can guide you. Drag mom into this community with you because I am sure she needs to understand as well.
Hater will hate, focus on the positive
You will reach a point where people around you find out about your case, some of them before you even do. You will hear some comments being thrown here and there, such as “how lucky would a girl be that cannot get pregnant, she can have all the unprotected sex she wants”. This will make your blood boil even though you still don’t know they are talking about you.
In university, you will also face a lot of bullshit from guys, sometimes even girls. How did they find out? Who told everyone? All the guys that are coming up to you “offering” you to take you to bed. Fuck them (no pun intended). You will refuse, they will talk and lie, you will get hurt. Most of that is your fault. I know it’s difficult to hear but it really is. You could’ve stopped this if you only had the courage to speak up, to seek professional help & guidance. Instead, you kept your head down, hearing all those lies and rumors about you and crying in your room all day and night. I know it’s tough but you are way tougher than that. So screw what others say, push yourself to be bolder, and stop victimizing yourself. Confidence is the most important thing you will have.
Infertility is not a taboo
You are being way too hard on yourself. You shouldn’t keep quiet and feel ashamed because society doesn’t speak up about this. Infertility is not a taboo. YOU ARE NOT A TABOO. We grew up in a world that teaches us that each woman’s goal in life it to eventually be a mother, and if you couldn’t then what is the use of you? Well that’s some load of bullshit. Speak up, teach them the many ways you can make a difference in this world. Normalize it for yourself and others who, like you, are hiding because of shame. Search for doctors who specialize in infertility and try to have a talk with them that can go public, go talk to newspapers. Yes you will feel like they are using you because of your rare case and story, but believe me it is worth it because people will finally get to know. People will understand and girls like you will reach out to you for guidance and help. You can help create this world especially here in the region where infertility and an incomplete reproductive system is not to be ashamed of.
Suicide is the coward’s way out and YOU are STRONG
You’re hurt – I know. But that will not solve anything. Again, stop victimizing yourself and stop being so selfish. The people around you care about you, they love you. What did they ever do to deserve this trauma? Let go of your emotions, open up to your family, and just cry with them. I know these are dark days but believe me when I say there are brighter days ahead. Your journey is just beginning and it is an amazing one. You will learn to love yourself, you will learn that MRKH made you who you are, with all its downs there are way more ups. You just got to allow yourself to experience it fully, to embrace it, and accept all its challenges. That’s how you will grow stronger.
Am I enough?
Now I say this out of love, but I will slap the shit out of you if you ever think like that again. You’re going to meet many people. Some will run away the moment they hear about this, but others will stand by you and support you. Someday you will meet someone that will be in absolute awe about you and you will hear him say “I don’t get how you say you are incomplete. You are as complete and perfect as it gets”. And you know what, that’s absolutely true, you are enough, you are complete, you are perfectly flawed just like everyone else, what you have and who you are is greatly shaped by what you experienced and you sure as hell will be proud of who you will be in the future. You will learn a lot of valuable lessons about compassion, love, humility, and kindness, and it will shape you to be an amazing lady. Be kind to yourself, love yourself, and let yourself find love.
The only way out is through
There are no shortcuts, the only way to get out of this phase is to go through it. There will be a lot of times where you will feel uncomfortable, but it is when you are out of your comfort zone where you really grow and become confident. Afraid of telling your partner about your case? Tell him on the spot. Afraid of opening up to your friends? Do it and see who sticks by your side. Afraid of taking that extra step to learn more about your case? Open that laptop and just research. I know you don’t want to hear this but it’s the truth. If you only take the easy road your life will be disappointing, but if you take the more difficult road throughout your journey, you will build strength, resilience, and skills that will allow you to end up at a stage in your life where you can achieve what you want. You need to make a choice now; do you want to be comfortable or do you want to have the life you want?
One for all, and all for one
This may seem hard and useless to think about when you can’teven help yourself. It all starts in that split second where you decide to not give a crap about what people will say, let go of your fears and just let everyone see who you really are – with all your flaws. Light up that bomb babe, give them a bang they will never forget. That’s when you will finally be at peace with yourself, and you will be able to think of others who are experiencing the same. Follow groups, search for people who are desperately searching for someone to understand them. Stand by them, give them advice, and allow yourself to break down from time to time with them. Let me tell you something you will be excited about: one day you are going to search for your name and you’re going to find newspapers all over the world talking about you! You will also be receiving random messages on Facebook and Instagram after you decide to be strong and brave enough to talk to your local newspaper about your case. This is when the worst part of your journey will be over, and it will be something you look back to and thank God for it.
Forward 11 years later, you will find yourself writing this same exact letter. Your journey is not over yet, in fact, it is far from over. Our MRKH journey will still be a rollercoaster but at least it will be a ride that we will enjoy and can’t wait to experience.
You are uniquely beautiful exactly as you are right now, this moment.
MRKH is molding you into a kinder, more empathetic human being. Practice gratitude, but also self-compassion. MRKH is tough. It’s important to recognize the hardship while still recognizing MRKH does not define you. MRKH is more like a life companion constantly challenging you to become stronger. It’s pretty cool, actually. You just have to choose to see it that way.
A warning. Be aware of how much marijuana you are smoking and why. Does smoking so much serve you? Or are you just running from tantalizing emotions? Endometriosis is painful. I know the smoking helps, but is that really the only reason why you are smoking? Acknowledge and confront what you are feeling. Even though it’s going to be emotionally painful, don’t stay lost in a stoner’s wonderland. Visit sometimes. You’ll enjoy it more that way.
This is where you need to stay strong.
About sex. You had hoped to have tried it by now. But let me propose a question: does not the concept of virginity exist simply to marginalize and define a woman’s worthiness within mar- riage and society? Think about it! The idea that sex is defined as penis in the vagina is outdated. Virginity does not matter, but your sexual wellness does. As does your sexual self respect.
I can assure you the ability to access sexual pleasure is not defined by a lack of or a creation of a vaginal canal. You have all the pleasure parts you need! Vulva, clitoris, labia, mons pubis, and even the skin all over your body. Did you know 90% of sexual experience is brain chemistry dancing with the sensations in the skin itself? And your clitoris has 8,000 nerve endings. Yes, eight thousand. You’ve got all the feels, don’t worry!
Something to remember. Your sexuality will and can evolve when you feel ready. Don’t hold back. Don’t be afraid when you are kissing someone that they might realize your vagina is shal- low. There are so many other pleasurable things you can do with a partner. Be open and commu- nicate so you can feel comfortable and free during intimate moments. Explore oral sex and touching. Explore your body. Explore it just as you were before diagnosis.
You are you, darling. It took me a long time to understand this, but desirability has nothing to do with the shape or depth of a vulva or vagina. Seriously. Nothing.
Confidence in yourself is what makes you attractive!
There’s no reason to hinder growing up, or growing sexually, because of MRKH. You simply need to modify your journey and question the perceptions and definitions of sex existing in this world. And, of course, you simply have to communicate with your partners: what you like, which parts of your vulva are most sensitive, and what you are and are not comfortable doing (and ask what they like too!).
MRKH is going to throw many obstacles into your life. It’s hard. But do not forget MRKH is also a gift. Being born the way you were provides the opportunity for you to learn yourself deeply, and at a faster rate than you would have otherwise. You are whole and complete inside of yourself.
I’ll tell you the secret: accept yourself exactly the way you are. Right now. This moment. You do not need to be ‘fixed’, for life’s path alters for all who walk along the trails of existence.
P.S. All in all, you’re alright! Remember what Jeffery Lewis says in his folk punk, “It’s the one’s who have cracked who let the light shine through.”
I come from a large family of eight, including my parents. With so many people, it was easy to feel alone and lost in the shuffle, with six kids. I also felt different. It wouldn’t be until years later that I’d find out I was born differently than most women.
As a little girl, I’d play outside by myself, making believe I was taking my babies for a walk in my mom’s baby carriage. I often imagined the day I’d be a mom, and this made me happy.
In 1969 I graduated high school and went on to college. At the end of my first year, I got engaged. Since my fiancé and I had three more years of school, our engagement would be long-term. During our courtship, we talked about having a family someday.
At 19 years old, I still didn’t have my period. Mom and I believed I was a late bloomer, however; it was time to get checked out. There were other signs of my body maturing, but no menstrual cycle. After seeing my family doctor, he referred me to a gynecological specialist in Philadelphia
Thankfully, Mom came with me to the appointment. We were hoping to find out when I’d start my period. After the doctor examined me, his diagnosis changed my life forever. His devastating diagnosis was called MRKH. That day, I found out I’d never be able to birth my own children. As soon as the doctor said this, my heart broke and my dreams of motherhood shattered.
Psychologically, the news was impossible to wrap my young mind around. My reaction was denial. I wondered, “Why am I here on earth?” I asked God, “Why did you make me a woman that could not have children?” It didn’t make sense. Wondering how I’d go on in life, I sobbed sorrowful tears. My body was different. It couldn’t be cured. The way my family and I handled my MRKH news was by never speaking about it, again. We swept it under the rug, as though it never existed.
When I shared the news about my MRKH with my fiancé, he was not happy. Sadly, we broke up. When we broke up, the thought occurred to me, who would want to marry me if I couldn’t have children? Now, not only would I not have the lovable babies I dreamt about as a little girl, maybe there wouldn’t even be a husband in my future. This was additional grief for me to bear.
At that time, I wondered if I would ever meet another person with MRKH. It is rare: 1 in 5,000 women are born without a uterus. With my unique body, I was different than most girls. The other issue was, I had zillions of questions and no answers. In 1970, there were no computers or cell phones.They didn’t exist, until 42 years later. It wasn’t possible to go home and google, what is MRKH? I felt isolated from the rest of the world with a rare condition. To make matters worse, doctors I went to throughout my life never heard of MRKH. My zillions of questions remained unanswered. With no professional counseling, my MRKH caused depression and anxiety.
Mostly, I kept my MRKH a secret. Pretending to be like other girls, I lived an inauthentic life. Imprisoned behind my mask of normalcy for 42 years, wasn’t easy.
Gripped with grief, I turned to the ONE who knew the anguish of my soul, God. He was always part of my life. He understood my sorrow and lament. Knowing God made me, and He doesn’t make mistakes, I believed God had a plan for my life, I just didn’t know it yet. This very thought kept me hopeful.
After college, I was hired as a third-grade teacher. When school started, I’d have an entire classroom of third-grade students. Even though I couldn’t have children of my own, it was exciting to anticipate my classroom filled with children. Wow, God was working behind the scenes!
Before I started teaching, I worked as a waitress to earn money to get a place to live with a roommate. My friend Barbara was also looking. We ended up renting an apartment in Ocean City, NJ. Barb and I had a lot in common. We both waitressed in the summer and taught in the fall.
Shortly after moving in together, Barbara introduced me to her boyfriend’s roommate, Terry. Ted and Terry also worked summer jobs together. She kept telling me how nice it would be for roommates to date roommates. She was right.
Terry and I dated that whole summer. He was okay with me having MRKH. The following summer we got married, August of 1975. Amazingly, Terry had two daughters, Lori seven-years-old and Kim six-years-old. I instantly became a stepmom, when we got married. In 1970, the year of my diagnosis, I wasn’t sure anyone would want to marry me with MRKH. Now, five years later, I was married with two stepdaughters. God is good, from my broken dreams of not being able to have a family, He blessed me with a husband and two beautiful daughters.
What I didn’t realize until after our wedding was that the girls would not come to live with us. They would stay living with Terry’s parents, where they lived since they were infants. Regardless of the situation, I was grateful that we had the girls on the weekends, holidays and summers. When our daughters were older, and about to enter high school, they did come to live with us.
Frustrated, in between when we got married to their coming to live with us much later, I wondered why I had children, but didn’t have children. My motherly instincts yearned to be able to share my life and love with our girls every day. These were my child-bearing years, I also wanted to adopt a child, but Terry wasn’t ready. His first child died in infancy, and he wasn’t emotionally prepared to have another baby. I understood.
Not having the girls on a daily basis, and having taught school for 8 years, I thought about a career change. I thought, Maybe God wants me to be a businesswoman. I set out on a new career. In actuality, I was searching for my identity.
In 1980, five years after getting married, I became a Realtor. I sold real estate in Princeton, New Jersey for ten years. Later, Terry and I moved to Florida and I worked another ten years in real estate. My career was quite successful, but I realized that what the world called “success”, was not my experience. I still had the empty void in my heart, my identity was still unknown.
Thankfully, on May 23, 2003,I found what my heart was longing for. One Sunday, while visiting my sister’s church, I heard the Good News about God’s one and only Son, Jesus Christ. That day I invited Jesus Christ into my heart and received Him as my Savior. I became a Christian, and the void in my heart was filled. I now knew whoI wasand whose I was. My identity now was as a child of the King of kings and Lord of lords. At 52 years old, when I was adopted into God’s family: I was chosen, loved, forgiven, and predestined for eternal life in heaven with God.
Filled with overflowing joy of the Lord, I was inspired to write poems that came to me during this special season of life. Little did I know, years later I’d give birth to my very first book, The King’s Poems: From God’s Heart to Yours. And in 2019 a second edition was published titled, The King’s Poems: A Book of Faith, Hope & Love.
In 2014, I attended my first MRKH meet-up in Philadelphia, the exact city I received my MRKH diagnosis 44 years prior. At 65 years old, I had the privilege to meet MRKH warrior sisters, Amy Lossie, Meredith Brooks, and other MRKH sisters in attendance. What joy it was for me to meet, face-to-face, other women who had MRKH. Meeting my sisters, and doctors that were at the meet-up that were well informed about MRKH, was an enormous encouragement to me. This was a blessing to have the opportunity to heal from my broken condition that I kept hidden for many years. With the internet and learning of meet-ups I was no longer alone. I had sisters all across the globe, just like me. What a gift!
My healing continued as I attended Celebrate Recovery meetings at church. Each time I attended and shared my story, my mask was being peeled away and I was facing life more authentically.
In 2019, I was invited to speak at the Global MRKH Day in Melbourne, Australia. I was thankful and humbled by Amy’s invitation to participate in this international conference. This amazing experience was beyond any words I could ever express. Meeting more sisters, I knew and saw the courage of my MRKH sisters from across the globe who know and understand the heartaches, challenges, and the triumphs of our unique position in life. Sharing our stories and support is truly a blessing!
Today, I continue to ask God to give me opportunities to share my testimony and gratitude for the totally new perspective He has given me about my MRKH. He took my broken 19-year-old life with years of sorrow and blessed me with becoming a wife, a mother, a grandmother, an aunt, a great aunt, a sponsored mom to two children in Africa, a mom to a young woman (who has never met her own biological parents), and a mom to a four-legged fur baby named Teddy Bear.
My memoir, More Reason to Know Him: A Journey from Darkness to Light, will be completed soon. It’s my story, for His Glory. Praise God!
“And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.” Romans 8:28 NIV
To my younger self, on the day you were diagnosed with MRKH:
If I could sit with you now, and hold your hand, and offer words of sage advice, I probably would not make it through without crying.
I’m closing my eyes now and imagining what it would look like to sit next to you now, as you’ve just received a painful and life altering diagnosis. For some reason I picture us in a park, green and lush with plant life. But we are on a hard metal bench, surrounded in a cloud that feels heavy and dark.
I wouldn’t tell you what lies ahead for you. But in my mind I see myself gently touch your shoulder and say “allow space for this pain.”
That is what I would like to encourage you to consider as you move through the next years. To just… allow space. Allow space for joy and let the light of it flow into your laughter and relationships. Allow space for pain and let the tears and anger rush out when they need to. Allow these things and everything in between without judgement (if you can). It’s not so easy in a society that holds perfection on a pedestal. It’s not easy in a society where the answer to “how are you?” is always “good!” You aren’t always going to feel good. Because you are a human and not a robot. It hurts me to know how hard you will try to be all things to and for all people and ignore all you hold in your heart. Hold space for all these things you feel. Hold space for the jealousy that comes up again and again. Hold space for the hollowness you will feel time and again. Hold space for the grief, the sadness, the crushing weight that, at times, feels suffocating. And hold space for others. Hold space for love, connection, and healing. Joyful memories and unforgettable experiences lie ahead of you too. All these things are yours. Just take a moment, take a breath, and hold space for it all.
Many years from now someone will say to you “We are human beings, not human doings.” Be with yourself, notice how you feel and where you feel it, and know that there is so much good in store for you. Dreams will shift, time will allow healing, and you will learn to hold space for all things. Even this.
My story isn’t one of miraculous healing or a life transformed right before your eyes. It is a story of survival and a fight back from the depth of unimaginable grief. It is full of purpose, hope and a redemptive plan.
The Author wrote loss into my life long before I held my son as he went into the arms of Jesus. Loss began the day I heard the words of my doctor through the telephone line, “you will never be able to carry your own children.” As a woman who had dreamt for years of her own family, those were the last words I wanted written in this chapter of life.
The Author’s plan was written long before I was formed by Him. One of the most important lines written in my life was of the day I was adopted into my Author’s family. Little did I know at that time, a different adoption would be the means in which my family would come to be.
The pages continued through desperate prayers on my knees with many tears begging God to become a mom. Year after year it would go unanswered as I watchedothers welcome adoptees into their families. Now that I look back at the lines being written, I see God’s purpose behind the wait.
The day our prayer was answered as we watched as our son enter this world, was the best line written in my book of life. Twenty-eight days later I watched as the Author of my story wrapped my son into His arms and took him home.
The day I buried my son I had two options; I would hold onto what little ink was left and let the Author continue to write my story or let it dry up and drown in my grief. My only hope was to hold tightly to the Author and let Him continue to write my story. That is what I did.
I would like to tell you my healing came quick and without much work on my part, but that is not how it goes. If God is going to use this pain for His glory, I would have to walk through the fire for the ashes to do their work. I was burnt and exhausted, but I was determined to let God do His work. I was desperate to see His redemptive power, for Him to show up with love, grace, and most of all purpose.
I dove deep into the pages of His word for months, clinging to Jesus. I read the Word and let the Holy Spirit guide me page after page as I wrote of my grief, anger, and questions. I screamed, I cried out, and I asked why. I kept coming back again and again to God until the healing started.
I don’t believe time is the answer to healing. I believe the heart needs to go to its’ Creator for healing. Time does not know the heart and what it needs to put the pieces back together, that is the Author of life’s job.
It wasn’t easy but as the pages turned my story began to sing, the sun was rising, and Jesus kept showing up. He showed up in ways only He could, through family, friends, and strangers. God was in the midst of my life and at times I felt as if I could reach out and touch Him. I had never felt closer to Him than in those times.
God called my husband and I to be parents to a very special child. I now believe our story to become parents took so long because there was a certain little boy God needed us to love for a short time on earth, but always in our hearts. If the pen had a chance to rewrite it, I would not erase the pages.
Cameron is where my new chapter in life began, where I can see the words clearer than ever before. I now know without a doubt Jesus is my all and all and the pen writing my story is meaningless without the Author to control it.
Not everyone will have a miraculous story or a life changing experience, but I do promise you this: if you hold on to the Author and finisher of your faith you will have extraordinary chapters. Had the phone not rang over 20 years ago and the doctor had not spoken those words, Cameron wouldn’t have been mine and that is the part of my story I would never change.
P.S. Joy comes in the morning and six months after Cameron was welcomed into his Heavenly home we welcomed our second son T. He certainly has been a light in our darkness and joy in our suffering! T is a very active 3 year old who certainly keeps us young. I can’t imagine life without this big browned eyed little boy. I can’t say the our adoption journey was easy, but worth it, absolutely!!