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

Rachel

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.

With so much love,  

Thirty-Year Old Rachel

P.s. You still have great hair.

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

Grecia Lopez

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.

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

Sabine Boghos

Me, Myself, and MRKH

Dear younger me,

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.

Stay strong, warrior.

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

Nikol Dekazou

Dear Younger Self,

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.”

All my love,

You (at nearly 30)

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Broken to Blessed

Julie Coveney

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

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

Kristen O’Brien

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.

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The Call Was Worth It

Carrie Cameron Martin

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!!

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TO DISCLOSE OR NOT TO DISCLOSE

By Sheree Murray

I didn’t even realise it was such a big topic Though to be fair I had always places MRKH in the back of my mind. Pushed it so far back even that sometimes I would totally forget that it even existed, and that I had it. But I couldn’t escape from reality right?

As I got older, the conversations around having children became more prominent. I’d never wanted children so I always quickly replied with “Oh I don’t want them and can’t have them anyway’ before redirecting the conversation to someone else as quickly as possible.

Then there were the times when people would ask me if I could lend them a tampon,I managed to dodge that awkward “I don’t actually get my period convo” like a pro. I would just casually say “oh sorry I’ve run out” I learnt from a young age that was the easiest reply as when I said “I don’t get my period” I was faced with a questioning lok. I just couldn’t deal with having that conversation. So what changed to make me disclose MRKH?
I was tired of dodging the conversation around children and periods. I felt finally ready to share my truth.

So I started being more open and talking about it with my inner circle of friends. It felt so good to finally not hide it. This was about 7 years in the making. Then one day at this cafe here in Palma I disclosed to a new friend, she’s one of the only people that had actually heard of MRKH. I was so excited!

Apparently an incredible woman had just disclosed on Instagram. Holy heck there’s other women out there like me? Of course I knew there was, I just had never been presented the opportunity to connect with another MRKH sister. I found her on insta and reached out, it’s insane how immediately I no longer felt alone in this part of my journey. I also started joining support groups and connecting with other incredible women on insta. I never had any idea that anything like this existed for us incredible women.

Because of her one post my world changed overnight, I felt empowered by our incredible community of warriors and so welcomed. Most of all I no longer felt alone. Holy heck if one post could do that for me, I just knew I had to pay it forward.

If by me disclosing MRKH could help even just one woman like it did me then heck I was all in.
Though of course I was nervous and anxious, I wrote and re-wrote that post for about 3 weeks. Then I knew it was time, I basically posted it on insta then walked away. Not many if any knew that this was a part of me and now I had announced it to the world. I kept reminding myself that if this could help 1 other woman like it had me, then it was more than worth those moments of fear and anxiety that I was having at the time of posting. The messages I received were incredible. Full of love and so uplifting.

I knew I had done the right thing for me. I totally understand that this is 100% a personal decision and don’t get me wrong there are some days when I wanted to take that post down, but to be fully standing in and owning my truth feels incredible. I want to be a stand for all us incredible women owning how great we truly are. I want to be able to speak for those that yet can’t. But either way wether we want to disclose to our friends, the world or keep it to ourselves. Its all perfect and our choice.

Thats why I decided to disclose MRKH and why I will continue to share my story.

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What I Would Tell My 25 Year Old Self (MRKH Edition)

Stacey Brown

Dear Stacey,

Hey girl, it’s a year later and you’re 26. I know you wish you had more time. 17 is such a different age from 25. You feel as if you’re old enough and mature enough to handle anything that comes your way. I know you weren’t ready to be diagnosed with MRKH. Everything was happening so fast it went from an ultrasound, to an MRI, to an official diagnosis. I know you wanted the world to stop but everything around you kept going.

You were in grad school and you didn’t have the time to deal with it. You didn’t allow yourself the time to deal with it. You kept hiding from your feelings, until you were forced to confront them. Now it feels like you’re playing catch up. You wonder whether if you had found out at 17 maybe you would have more time. More time to process and accept. More time to consider surgery. It would have been surgery number three instead of surgery number six. I want you to know there will never be a perfect time.

You want to rush your healing, but I advise you not to. I know you’re tired of crying about something you can’t control. I know you couldn’t control the way you were born. It will be extremely frustrating, and you will ask God over and over again “why me”. You’re going to be angry with God. I want you know it was okay to be angry with God. You’re going to search for an explanation and never find one. MRKH becomes another insecurity added to the list.

You question if a guy will ever love someone like you, but I want you to take this time to love yourself. You begin to feel like less of a woman. You no longer feel feminine or sexy and you begin to hate your body.

I want you to know you will not be broken by this. You will see the beauty in vulnerability. You will share your story and receive so much love and compassion. You are not alone. You will find support groups. You will realize that there are women who share different versions of the same story. You will find a support group for black women and build a sisterhood with them. 

You will allow people to support you and you will reach out for help when you need it. Your friends and family will show up for you in unimaginable ways. I know it feels like you’re running out of time but take your time. I know you feel pressured to figure out adoption or IVF or surrogacy. Don’t rush it. Cry if you need to and eventually it will get easier. It’s just not easy right now.

Some days will be harder than others. You will learn that in order to figure out what your triggers are you must allow them to trigger. That part will suck. This can include baby showers, Mother’s Day, and pregnancy announcements. Some days you will shatter into a million pieces just for God to put you back together. You were chosen for a purpose. I think you will figure out why once you stop questioning your purpose. Once you stop questioning your existence. Somebody needs your story, somebody needs your voice, somebody needs your poetry.

A year from now you would have grown so much. You redefine what it means to be a woman. You redefine what it means to be worthy. I am beyond proud of you. Always remember to love yourself, celebrate yourself, and grieve with grace.

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

Esther Leidolf

Dear teenage self.

It was around this time of year… Fifty years ago… Your 13-year-old world came screeching to a halt along with your dreams and expectations. Boom. Gone… You had to start over at a time when you were meant to move forward. If you knew then what you know now you wouldn’t have felt so scared or lonely….Those years still feel like a blur; and yet you will come to understand the power that secrets and shame had over you. You will learn that You will control that power! You won’t be so utterly alone, so deeply sad, ashamed and embarrassed. Your journey will leave scars that will never heal but will one day be worn with wisdom and pride.

You may always wonder who you would be if you didn’t have mrkh but that is something you can never know. Even with all the treatment and medical interventions that lie ahead, you will always be someone born with mrkh. So hang in there. It gets better every day. As the anger rages internally with nowhere to direct it- you will understand why mom always said you seemed to be angry at the world. Because you were. You were trying to live in a world that wouldn’t see you. A world that didn’t want you to exist. That anger was, and still is valid. The only difference now is that you know it.

You will one day realize that your condition is no longer “your little problem” as the docs liked to say. You will see that you are not failing to be what a woman is expected to be but that the expectation has failed you. You will learn that the experts lead you down their own path and not yours. This is a lesson you will learn 1000 times over in 100 different ways. You will allow yourself to be a lesbian because, well, you are a lesbian which has nothing to do with the way you were born.

But what you never expected was that the shame and sadness would empower you to move forward. Your older-self thanks you as that transition enabled you to be courageous and build community with others who have mrkh. Nourish your anger with a gentle heart and you will find your voice. People will someday listen to what you have to say.

In some strange way you are very lucky. You learn the difference between being alone and being lonely at a very early age. You learn that you are your best friend and your salvation. Only you know your truth and your “little problem” will not define you as much as you think it does. You learn the difference between knowing your emotions and feeling them.… You learned early on that bad shit happens to good people. You will learn to dance with your angst, and eventually seduce it… You will emerge from being “the only one” into a community of 1: 5000 women with mrkh. You will open yourself to learn from people with similar conditions and no longer fear them. I would be wrong to tell you that the sadness is gone forever. It will creep up when you least expect it and try to take you back to a place you may not want to go. But remember you now have the experience of moving through it and each time you will come out stronger. Remain hopeful in knowing that mrkh has lost its hold over you. It is your power now. One day all the pieces will fit together and you will settle into yourself. Your survival will help others survive. You will use your faith to remember to be true to yourself. No one knows what you need better than you do. No one gets to tell you who you should be, what you want or what is best for you. You will not only survive but you will thrive in a world you never knew existed.

Godspeed dear friend.

Very truly yours, Me

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