A Story of an Afghan Girl with MRKH Syndrome

Frishta

My name is Frishta. I am 26years old and I live in Afghanistan. At birth, the doctors told my mother that your daughter was malnourished. However, I grew up and survived. When I was 19 years old, I was still not menstruating. My older sister took me to the doctor after the doctor’s ultrasound examination. I said I probably do not have a uterus or it may be too small. I was in my first year of law school at the time. When the doctor told me about this, I was very upset and knew I could not become a mother and have a child in the future. But because the cost of MRI examinations in Afghanistan was very high, my sister refused to do my examinations. At that time, I did not pay much attention to this issue and it did not matter much to me because I was mostly busy with my university courses at that time. I turned 26 and took university courses I finished and was able to work for two years, I decided to look for a partner for myself, but one thing bothered me from the inside, it was the same lack of menstruation from the time I reached puberty until now, I decided again I went to see a gynecologist. After the ultrasound examination, he told me that I did not have a uterus or that it was probably too small. I was shocked, my blood pressure was very low, my head was dizzy, but the doctor told me regardless of my mental state: you can not become a mother in the future and have a child, and the possibility that your vagina may be closed, you can not even marry and have sex with someone I was very upset and sad. I was very disappointed with my life.

Finally, I decided to go to the hospital with more facilities. But the doctor told me that you are a girl who has never been married and you are a virgin. That you are a single girl, we do not have the right to examine your vagina because I have never been married and I have not had sex with a man and I still do not know what my vagina is like and how long it is. I have to tell you that in Afghanistan, before marriage, a girl must be a virgin, that is, she must have a hymen, if she does not, in Afghan customs, this means that she is a mischievous and prostitute girl and had an illicit relationship with a person before marriage. Doctors in Afghanistan do not know about mrkh syndrome. They wrote to me in the mri examination sheet that I do not have a uterus, but I myself did a lot of research on the absence of menstruation and lack of uterus on the Internet and I knew I had mrkh syndrome because doctors in Afghanistan is not familiar with the name of this syndrome and they do not have information, I now live in a vacuum I can not I’m not able to have sex with anyone. This bothers me a lot and there are no facilities for vaginal surgery in Afghanistan. I am very depressed and worried about my future. I do not know this for me It has grown like a secret and it bothers me that I live in a traditional and religious society with strict customs and traditions against women .

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MRKH Day Recap

Jane Berkeley

We’d like to thank everyone who participated in the 10thAnnual MRKH Day on 5/21, organized by the University of Michigan Ann Arbor and the Beautiful Your MRKH Foundation team. It was wonderful to see both new and familiar faces after a 2-year hold due to COVID. The MRKH weekend kicked off Friday afternoon with an informal pizza party at a local park. The annual MRKH Day conference that took place Saturday was open to those with MRKH of all ages, as well as parents and significant others. The conference began with a presentation and Q and A with MRKH specialist Dr. Elisabeth Quint, followed by breakout sessions the rest of the morning and early afternoon. The weekend ended with another informal gathering Saturday afternoon, providing more time to just hang out and connect with one another.

We already can’t wait for next year’s conference, and hope you can make it! It is so valuable to meet face to face with others who have MRKH, connect over our shared experiences, as well as appreciate the different ways MRKH has impacted our lives.

We also highly encourage everyone to join the new regional MRKH groups! Did you know we are making it easier to connect with others in your area?

Please reach out to your local BYMRKH Ambassador by clicking one of the links below. You’ll be prompted to answer some questions to join your regional private group.

West coast region: https://www.facebook.com/groups/440380339726662/?ref=share

Midwest region: https://www.facebook.com/groups/274006861510019/?ref=share

East Coast: https://www.facebook.com/groups/954512148764710/?ref=share

Southwest: https://www.facebook.com/groups/1280952215725041/?ref=share

Southern: https://m.facebook.com/groups/976933856556764/?ref=share

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The Power of Words

Heather Klemanski

“Nobody here needs to be fixed.” Those words were spoken by Dr. Steve Hickman when I attended a mindful self-compassion retreat. They were a balm to my soul. I grasped onto those words that day and never let them go. I allowed them to open the doorway to a whole new world I hadn’t experienced before. A world where love and kindness towards myself are natural and feel right. A world where other people have an inner mean girl/critic too. A world where I’m not alone in my suffering.

For a large part of my life, I felt as though I was alone on an island. I felt nobody understood me or what I was going through. I felt nobody would or could love me. I felt brokenand as though I needed to be fixed. Yet, everything I tried didn’t “fix” me. “If only I could fix this” was my favorite saying. Inside of me was a place that felt empty and broken.

That place?   It was shame.   A deep and abiding shame stemmed from my diagnosis of MRKH.   I was diagnosed at the age of 16.   That’s when I found out I was “different”  To me, different meant that I wasn’t a real woman because I couldn’t have children, and my body had unique challenges.   I couldn’t see a path forward from the life I always envisioned for myself – which was marriage and babies.  I questioned my own womanhood because I thought that it defined me.  So, my life became very dark, cold, lonely, and shame-filled.

Bullying impacted and deepened the shame  

Annnd to add to it? I also experienced bullying after my diagnosis when I was in high school. I told a close friend what I was going through and she told other people. I was so embarrassed. One day, my friend, her boyfriend and his friend called my house and left a horrible mean message on my answering machine, making fun of me. They called me such mean names that I was so embarrassed, that I couldn’t even tell anyone, including my parents. I just erased the message and prayed nobody else heard it. It only deepened my loneliness and sense of shame around my body. It endorsed this shame-filled spiral and grief that I entered into. It was an endorsement in my mind that said nobody will love me and nobody will understand me….EVER! I operated in that space for many years, living in fear.

Self-Compassion made a difference..

Self-compassion opened my world to a new way of thinking and being. It helped me to understand the painful shame that I was experiencing. It allowed me to sit with it and offer myself kindness, instead of beating myself up. I learned that I beat myself up every time I called myself “different’ or thought nobody would understand me or love me because I felt as though I wasn’t good enough. All because of my MRKH diagnosis. I was terrified to let anyone know the real me.

Learning to speak to myself with kindness..

After learning self-compassion, when I thought or felt I wasn’t good enough, I started reaching for those words of nobody here needs to be fixed.   Talking to myself with loving words of kindness, offering myself love and acceptance on a deep healing level through the practices and exercises of mindful self-compassion helped tremendously.

 My life and the trajectory of my life changed as I embraced self-compassion. It is so meaningful to me that I decided during that retreat to teach mindful self-compassion.   At the retreat, a new friend casually said “we should teach self-compassion” and it sparked life within me.  I never thought it was something I could do.  In fact, I thought “who me?”   I didn’t believe in myself, but someone else did.   But, I was so intrigued and passionate about the thought of helping others that I went to the info session and learned the requirements to become a teacher.  Then, I went home and continued practicing self-compassion.  I slowly applied myself to meeting the teaching requirements.   It took a few years as I transitioned from the corporate world as a project manager and giving myself encouragement and changing my self-talk.  Now, I’m so proud of myself for setting a goal and achieving the dream of teaching something that helped me change my life.   I help other women like me because I know that when you really sink into the different ways to use mindful self-compassion and the other tools that I teach, it can be life-changing.  I’m no longer in the corporate world today, as I am living my new passion by helping other women stop feeling choiceless and voiceless by empowering themselves to overcome fear.

What is self-compassion?

So, maybe you’re thinking..that sounds great, Heather..for you. I get it…I’m not going to sugarcoat it. It took a lot for me to get to a place of acceptance and understanding of myself and this diagnosis and to let go of shame. In fact, I went to an MRKH conference years ago, before I found self-compassion and I was appalled at how open the women were at sharing their stories MRKH…I even refused to take a picture with them because my shame was so deep. So yes, there’s a small part of me surprised I’m sitting here writing this post. I’m doing exactly what those amazing and powerful women did years ago. Sharing my story. I see how sharing your story is brave and beautiful. There is nothing to feel shame about. Why? Because nobody here needs to be fixed.

Sharing Self-Compassion

And, I really want to tell you about self-compassion.   Maybe you’re wondering…what EXACTLY is self-compassion?

My favorite way to explain it is like this…imagine you’re sitting with your bestie and she’s telling you how she’s having a hard time.  Maybe, she tells you that she really messed up at work.  What would you do?  You’d reassure her and fill her with loveright?   You’d tell her how it was a mistake and that everything is going to be okay and that you’re here for her.  Now, imagine that it was you.  You made the mistake and you’re talking to yourself.   Is your inner mean girl suddenly showing up?  Is she giving you the business about how stupid you are and how she can’t believe you did that?  Yep!  Been there, my friend.   So, it all comes down to learning to treat yourself the same way you would someone you love.  It’s offering yourself the same kindness you will to them.  

True Empowerment…

Now, I really want to tell you all about the amazing studies showing the benefits of mindful self-compassion.  But, I’m a shoot it to you straight kind of girl.  So, here’s where I’m going to lay out the real truth of why self-compassion is my thing.  

You know that feeling when something isn’t going the way you want it to?  And you’re disappointed, and you’re all up in your feelings about it?  Self-Compassion is like this warm soothing blanket of comfort that comes along right when you need it and says – hey..it’s okay.  I’m here for you.  It’s the gentleness that’s been missing and the best part is that you don’t have to look anywhere but to yourself for it.  It’s empowering.  How incredible is that?  To learn this skill that allows you to empower yourself AND be kind to yourself at the same time?   I will take it any day of the week.  And I hope you will too.

Self-Compassion Practice

Before I go, I want to share with you one practice of self-compassion that you can take with you and practice anytime.   It’s called supportive touch.   It’s works because the body responds to the warmth of physical touch!

When you’re having a difficult time,  see if you can pause.  Try taking a deep breath and slowly releasing it.  Place a hand on your heart..notice how it feels..feel into the connection of your hand on your heart.  What do you notice? Does it feel warm and soothing?   This is a way to offer yourself the kindness and care that you may be craving.   If you find that you’re not connecting with a hand to your heart, that’s okay, that’s perfectly normal.  You can try some other locations, such as placing a hand on your cheek, cradling your face from palm to cheek, placing a hand on your heart and one on your belly, hugging yourself by wrapping your arms around yourself, holding your hands or placing a hand on your leg or stroking it.

Any of these offer physical comfort and support when you’re having a difficult time.  It is a way to reassure yourself in kindness.  It may take time to get used to doing so and so I suggest giving it a try for at least a week and seeing what it’s like.  One of my favorite ways to offer myself comfort is to place a hand on my heart and offer a few kind words to myself while doing so.   I find it makes all the difference.

My wish for you is may you be kind to yourself.

About Heather:

Heather Klemanski runs holistic and spiritual meditations and retreats to connect with love, overcome fear and empower your intuition so that nothing holds you back.  She is a compassionate meditation instructor with training in mindful self-compassion,mindfulness, laughter yoga, group motion, and retreat facilitation. Dedicated to inspiring others to wellness and connecting to their inner wisdom, she is an expert in relationship-building, balancing objectives, and enhancing well-being. 

“It is only through my own pain and learning to listen to my intuition, meeting myself with self-compassion and mindfulness that drives me to reach out to help women like me. I love working with women to liberate suffering from fear and the “inner mean girl” – Heather

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Registration for the Parents ONLY MRKH Meeting

Christina Martin

The Beautiful You MRKH Foundation is thrilled to share that registration is OPEN for the FIRST ever MRKH meeting curated by parents for parents. 🤗🙌🏼

We LOVE the parents of MRKHers and understand how vital your role is in your child’s MRKH journey. We have been wanting to do a meeting JUST FOR YOU! We also want to send a big THANK YOU to all of the amazing people that have worked hard to make this meeting happen. We are so grateful for our amazing community and the parents that play such a special role in it.💛

About the meeting ⬇️

This virtual meeting covers medical aspects of MRKH, tips and tools for mental health, gender identity/sexuality, and perspectives from a Dad of a MRKHer. You don’t want to miss this!

*Who can attend: Parent(s)/ guardian who has a child with MRKH
*When: Saturday, June 18, 2022 from 1:00-300 ETD
*Where: Zoom

Attendance for the meeting is free. However, being a non-profit that relies on donations to survive, we always greatly appreciate donations. 🙂

Have a question? Please email mailto:lindsaymichelle79@hotmail.com

Registration closes on June 15, 2022.

Click on the link below to register.

Register here

We hope you will join us!

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#WearOrange Infertility Advocacy for National Infertility Awareness Week

Christina Martin

On Wednesday, April 27, 2022 we wore orange to celebrate National Infertility Awareness Week and to bring awareness to 1 in 8 couples who struggle with infertility. In addition to wearing orange, the community shared what we wish others knew about infertility or why they wore orange. Below are some of your responses.

Thank you to all of the MRKHers and MRKHer supporters who participated on this fun day of advocacy!

1) “I’m grateful to be apart of a community that has poured into me. I am grateful for those that remind I am beautiful. I am grateful for those who remind me that I am strong. I am grateful for those who remind me that I am a woman.”

2) “Today I wear orange because having a family is not easy for everyone; 1 in 8 struggle with some form of infertility making their journey to parenthood both a physical and mental battle. There are various causes of infertility affecting both women and men.

Today I wear orange because I have infertility. I was born with MRKH which includes the absence of a uterus. While this is a struggle, I was at least aware from a very young age that I would have infertility. Many who suffer from infertility don’t know that they have it until they are trying to have kids. Either way it is hard to understand unless you have personally dealt with it.

Today I wear orange because it is likely there are people in your life that are dealing with infertility that have not shared about it. Remember to not take for granted the ability to have a kid… and please stop asking those without kids when they are going to start having them.”

3) “I’ve got my orange T-shirt, my MRKH forearm tattoo and my fur baby – all of the things that remind me there are many ways to achieve the future I want and many options out there to do so. Some may be more difficult than others, but difficult things are what teach us to be strong and resilient, which is what #MRKH has done for me.”

4) 𝐖𝐡𝐲 𝐈 𝐖𝐞𝐚𝐫 𝐎𝐫𝐚𝐧𝐠𝐞: 𝐀 𝐏𝐨𝐞𝐦

𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to help build a community.

𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to bring warmth and love into being.

𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to show my compassion.

𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to promote infertility awareness.

𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to be the best advocate I can be.

𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to help with recovery.

𝐈 𝐰𝐞𝐚𝐫 𝐨𝐫𝐚𝐧𝐠𝐞 to show my support for those in need.”

5) “Today I wear orange as an MRKH advocate. Here in India, people aware of infertility but don’t know or don’t want to know about mrkh syndrome.

I wear orange to advocate for my Indian MRKH sisters – the 1 in 5000 born with Mayer-Rokitansky-Küster-Hauser-Syndrome.“

6) “Today I am proud to be part of the 1 in 5,000 women who have had to gear up and conquer the ultimately beautiful, empowering mental and physical defeat of my MRKH diagnosis. I am who I am because of ME.”

7) “Today I wear orange to show the world that infertility is common.

I wear orange to advocate for people born differently, and especially the 1 in 5000 born with Mayer-Rokitansky-Küster-Hauser-Syndrome.

I wear orange to stand out and be bold.

I wear orange to speak for those whose circumstances don’t allow them to speak.

I wear orange for those who are just being diagnosed with infertility and need a safe space.

Today, I wear orange for me.”

8) “1 in 8 couples who struggle with infertility are overjoyed for our friends and their growing families! We absolutely want to celebrate big life moments with our loved ones and their children. But there are times when we need to step away at a baby shower or even decline a celebration to protect ourself. Please understand that someone with infertility deciding not to attend an event has nothing to do with you, but everything to do with protecting themselves and their mental and emotional health. Being triggered with infertility can come out of nowhere and when we least expect it. We ask that our friends and family be patient with us and try and understand if we need a few moments to ourselves.”

9) “Whether you struggle public or privately, have been struggling for a short period or for years- you are seen, your feelings are valid, and you are a warrior”

10) “Infertility is not your fault, it’s not a bad word, it’s ok to talk about. And it’s not something that defines you.”

11) “Today I wear orange to honor my sisters with MRKH syndrome and all that we’ve lost and overome.”

12) “Be kind, you never know what someone ese is going through.”

13) “I wear orange to show infertility is common.”

14) “I wear orange for those afraid to talk because like me at one time was afraid of what others would think.

“The road to parent hood was long and hard and not the road I had planned. The truth is looking back I wouldn’t trade my road for two reasons. It game me my two greatest loves. It gave me a group of incredible woman (MRKH sisters) who have more resilience, grit and determination than anyone I know. They are changing the way we look at infertility, adoption, surrogacy and IVF. The are the blessings in disguise.”

15) “Fact: Teens can be diagnosed with infertility, too.”

16) “I wish people know that infertility is very hard for people in every which way possible. They should be considerate when playing pranks about pregnancy because it’s not funny.”

17) “Please allow yourself to feel the sadness, grief, emptiness, or whatever your feeling. Initially, I was told don’t tell anyone about MRKH and even my doctor said don’t tell anyone and just get her married off! This made me feel like MRKH is a secret and something to be ashamed and embarrassed about. However it’s not and now I actually felt empowered by MRKH.”

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BYMRKH Ambassador Regional Groups

Christina Martin

Hi AMAZING MRKH COMMUNITY!

Now that all regional groups and Ambassadors have been announced, we would like to invite you to join your regional FB group. This is a great way to start connecting and stay up to date with all of the amazing things going on within your area.

Not sure which region you are in? See below.

To join your regional FB group, click on your region below.

South region: https://m.facebook.com/groups/976933856556764/?ref=share

East coast region: https://www.facebook.com/groups/954512148764710/?ref=share

Midwest region: https://www.facebook.com/groups/274006861510019/?ref=share

Southwest region: https://www.facebook.com/groups/1280952215725041/?ref=share

West region: https://www.facebook.com/groups/440380339726662/?ref=share

Click on the link and answer some questions to join your regional private group. Happy connecting!

Posted in acceptance, awareness, grief, healing, hope, infertility, journey, MRKH, MRKH sisterhood, MRKH supporter, MRKH Warrior, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

Elephant In The Room

Joyce, Philippines

I know motherhood is not for me, and I’m already in the process of accepting it. It started when I am no longer distant from tiny creatures called babies. “Baby steps, Joyce (pun intended)”. From that very moment, I felt pure joy when we welcomed my niece and nephew to the world. Other than raising awareness, I am also in the process of looking into other possibilities on how I can help other women with the same condition but with different types through egg donation, if the universe conspires. Throughout my adult years, I was alone looking for opportunities to be medically assisted. I know it’s costly and it will exhaust all our savings and salary. This concern is the elephant in the room between me and my husband. But last week was a surprise. After I bravely discussed the issue with him, he took his phone and searched for clinics, costing, etc. that may give us the information we need. Again, I am fully aware that IVF or any science assisted pregnancy is not an achievable goal for us because we are not financially ready for it, but knowing that I am not alone in this journey anymore, knowing that I can talk about this with him gives me so much joy. I know that from the start of our relationship, I am already accepted but today is different, it’s pure joy.

We all go through different phases, some of us still have high hopes and some are in the path of acceptance and yes, there are still moments of sadness and pain with it. But we all have one in common, we embrace each other despite this condition, because women empower women. I found my joy and I know you will find yours. We deserve love.

Posted in acceptance, awareness, childfree, family planning, grief, healing, hope, infertility, journey, MRKH, MRKH sisterhood, MRKH supporter, MRKH Warrior, self love | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

Like Me

Badia Atcherson

Like Me, have you ever looked around and asked, where are all the women who looks like me? I mean really. Sometimes, I feel like yelling “WHERE ARE ALL the BLACK and BROWN women/people?”

In our MRKH community, there are some powerful people standing up, speaking out on the needs and issues. Indigenous, Black, and Brown MRKHer’s have when receiving poor diagnosis and limited medical care. The differences in the information given have caused some of us to feel unworthy of living the life we dream of because of this diagnosis. For some of us, no one explained that there’s a process to living a healthy MRKH life. In our beautiful colorful MRKH, we need community clinical therapy as well as medical advice to understand the process to dilating properly.

You don’t have to feel alone in your thinking. I most likely have had the same thoughts and concerns for our culture(s) of people. Some of us, like me, are thinking, one day I will speak up for my friends who are unable to speak and share their feelings on the needs in the MRKH community.

During a MRKH conference, I remember feeling withdrawn and uncertain as to where I fit in. I remember thinking, if I see someone who looked like me, I will bombard them with questions about their journey, with doctors, family, and friends. There must be some similarities. I thought, there must be other Black women or people who did not receive information on dilation, on surgery and/or therapy. Also, I thought and wondered is there someone else out there LIKE ME? What if I decide to have children, what information is available? Am I able to bear my own children, and if not, what opportunities are available? Is adoption and/or IVF is available for me?

Woman/people of color face a lot of stigmas. Some we discussin conferences, social media groups, and in person one-on-one conversations with other women of color. What are some ways we can change the narrative? First, we can change the narrative, by allowing more women/people of color the opportunity to share their stories.

It meant the world to me when I saw a face that was like mine. The experiences I heard made my heart leap with happiness and sadness. I was happy to see someone advocating for our culture. I was most happy to see her strength and courage as she spoke her story. Sadness hit me because in our cultures some of us have a tough time disclosing and sharing our journeys. Some of us may never seek therapy or may barely start. I remember thinking, I am going to do that one day. I am going to speak up, share my story. My hope is to heal as I advocate.

(S/N: 😉so far, it’s been good)

So much growth can happen when we step out of our secluded space. When we step out, we can show that there is strength in disclosing. When we can share our stories with another MRKHer, we get a sense of freedom, which allows us to step away from the shame and guilt MRKH can bring.

Since I publicly shared my experience with MRKH, I learned that it is important for me not to fear telling my story. The first thing I learned is that my story is my voice. My journey is my strength. I dictate how I choose to share it. My condition’s diagnosis gives me the opportunity to do something, speak about it. So, I began thinking of ways to connect with my community.

Badia’s Personal Mission: Make a point to get to know ALL people and not just those who look like you. Doing so will open doors to latest information about MRKH from the people who are living it, and sharing their medical care experiences. Although My goal is to bring awareness and to kill the stigmas against my Black and Brown culture. However, initially I want to fill the gap for my friends who are unable to speak their truth because of culture beliefs and differences.

I am going to end this especially important piece with one thought…

Do you know your story is your voice? Your journey is your strength? You get to dictate how, when, and if you choose to share it. However, if you don’t, there are Black, Brown, Indigenous friends gearing up to continue to push our needs forward in our MRKH Community!

Peace,

Badia Karima

Posted in acceptance, awareness, black stories, black voices, diversity, grief, healing, hope, infertility, journey, MRKH, MRKH sisterhood, people of color, representation, self love, sisterhood | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

My MRKH Journey In A Nutshell

Aysha

Building homes, playing shops, outings with cousins and parties with friends, it seemed my life was just typical!

I started puberty at the average age of 10, breast development, hair growth and all! Except there was one question that needed answering! Where was my period? It had done a fantastic job of playing hide and seek with me and it had been hidden away for years!

My mum got concerned but I was as cool as a cucumber! My mum had started her period at 14, so I thought I’d follow in her footsteps and thought I’m just a late bloomer! GP visits, blood tests, ultrasound and a MRI later, the 4 letters MRKH a new companion entered my world.

Aysha celebrating her 18th anniversary from her MRKH diagnosis. Happy 18th MRKHversary!

Making my world just curled! I didn’t know who I was anymore! It was as if over night, I’d transformed into a new young lady, when in reality I was born this way! It was as if over night an invisible barrier sprung up, that seperated me from other ladies in my class. This barrier was none but MRKH. I felt numb, confused, lost and broken into tiny pieces. Islamically your complete as a women when you get periods, so this left me questioning my identity as a women. Where does that leave me? Where do I fit in? Am I a complete women?

I fell into a type of depression. Not your typical type! I’d go out with friends and have plenty of what looked like ‘fun’ but inside my heart was broken into tiny pieces and aching. I’d lock myself in the toilet and cry, several times a day. I didn’t want to disclose how distressed I was to my family.

Slowly but surely I started gluing my heart back together, finding myself again but it did take me 7 years on, to begin the journey of self love, acceptance and healing. To realise with a baby or not, with missing female organs or not I’m perfect, unique, complete and beautiful the way Allah has made me!

Now I’m beginning to realise my purpose is a lot deeper than I first envisoned! It’s to empower other children and women and make a massive difference to many others, Alhumdulilah (All thanks to God/Allah). I do this by working as a special needs teaching assistant and being a MRKH advocate and being the voice for my Muslim MRKH sisters, who tend to be quiet.

Posted in acceptance, awareness, childfree, faith, grief, healing, hope, infertility, journey, MRKH, MRKH sisterhood, MRKH supporter, MRKH Warrior, muslim, self love, sisterhood | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Writing My Recovery

Julie Coveney

Recently publishing my memoir, More Reason to Know Him, was a book I was working on for quite some time, years! Being published and on Amazon recently, I suddenly had an anxiety attack! I woke up the day after it was published and realized my story was out there in public. Right on the back of the book, I told the world I didn’t have a uterus! Oh my, what did I do? However, I prayed and asked God to help me through my anxiety. He did. I realized it was for Him that I had written the book. Without God, I wouldn’t have made it through the many sorrowful years of living with MRKH. I had other good reasons to write it; also, we’ll get into that shortly.

My story begins with my diagnosis pre-computer age in the year 1970. After my diagnosis, there was nowhere to find any further information about MRKH. My diagnosis put me in a most isolated position with no computers, no Google, and no cell phones. I didn’t think I’d ever meet another person in the world that had MRKH. I didn’t share my news with even my closest girlfriend. It was rare and personal. My family swept it under the rug, never to talk about it again.

My MRKH was my very own secret. Having questions, concerns, and extreme grief for the family and children I’d never have, made my heart break and made me feel broken. At the time, I was in college and engaged to be married. My diagnosis became the reason my engagement ended. Then came the thought, who would want to marry me? My life that day changed forever!

It was 42 years before computers were available and in homes. I was 61 years old. For the first time in my life, I was able to find out more about MRKH. Up until this point, I never had met another person with MRKH. Every doctor I ever had did notknow what MRKH was. The feelings of isolation added to anxiety and depression. The sense of “not belonging” washorrible. Not sharing my MRKH and keeping my secret didn’t help. I also realized because of my shy way; my family couldn’t talk with me. I take responsibility for no one ever speaking with me about it. I was not approachable.

Yet, my story is one of “hope” despite the reality, praise God! In 1975, I married a man that had been married before and had two children, Lori and Kim. The girls were 7 and 8 years old when I met them. I became their stepmom. We did not have the girls full-time. I love them as though they are my biological children. God blessed me with them. Yet, I still searched for my identity through work. In the book, you’ll see that there are stories within the stories. Each level points to how God provided for me blessings during my life. Writing the book helped me see His Fatherly love at various stages of my life.

In 2003, while searching for my identity, I was searching for someone or something to fill a hole in my heart. It could only be filled with Jesus. Once I received Him into my heart at the age of 52, I immediately knew my identity. I was a child of the King of kings and Lord of lords. My life changed forever, literally. I belonged to the family of God. Receiving Jesus into my life, I knew I’d spend eternity in heaven with Him when I left this world. For that, I am forever grateful. Jesus died on a wooden cross; he was crucified, died, and was buried. Three days later, he rose from the grave. He is a living Savior. He died in our place and paid for the sins of the world. All who believe in Himand receive Him into their hearts have eternal life. My hindsight perspective became one of “awe” as I wrote my story. Able to see God’s hand in my life was amazing! He loved me even before I received His son Jesus.

In 2016 I attended my first MRKH meet up in Philadelphia. It was so special! Meeting other women that had MRKH, made me feel whole again. I wasn’t alone. Yet I was 61 years old, these MRKH sisters were quite young. It was fine, a beautiful experience. To get connected meant the world to me. I finally met doctors who knew about MRKH. The group we have and belong to is unlike any other group of people. Connection with each other whether that is via the internet, zoom, FB or whatever platform, there is a special bond we all share with our sisters all over the world! I am forever grateful for our sisterhood and feel blessed that we have each other.

As I continued to write, it felt as though I was slowly releasing years of grief that had been stuffed way down into my toes. Also, I began sharing my story on a speaking platform in my church and other meetings for a group called CR, Celebrate Recovery. Speaking about my story, blogging about it in a public format, and writing my memoir, I had lots of time for reflective perspective. In November 2019, I had the privilege to speak atthe Global MRKH Conference in Australia. It was an honor and a very humbling experience. The conference was terrific, and I met many wonderful MRKH Warrior sisters. We are a courageous group, I will say! Each of us have similar stories, yet very different experiences. It is so good to share with each other.

In my memoir, More Reason to Know Him, I share the incredible blessings of having MRKH. I’d refer to my life today as authentic, resilient, and recovering. It has been a long journey, but I wouldn’t trade it for anything. I love my MRKH sisters around the globe! MRKH touched my life in a way nothing else could. Today I can say I am most grateful as it made and shaped my life in a very unique way nothing else could have.

MRKH gave me the opportunity to live a life filled with trauma and trials from yesterday to today, a life of triumph and transformation. I’ve learned and continue to learn my own truth with passion, persistence, and purpose. To bring advocacy and awareness about MRKH is a joy. No longer hiding, I’m sharing MRKH so that the world and doctors especially will know how women with MRKH feel.

Taking a stand and sharing my story for His glory gives me a chance to brag about God as well!

Posted in acceptance, awareness, faith, healing, hope, infertility, journey, MRKH, MRKH Warrior, religion | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment