My Truth

Posted on September 30, 2013 by beautifulyoumrkh

Unbeknownst to you (the reader), this is probably my sixth attempt at writing blog number four. I only have one very valid reason, and ten rinky-dink excuses, as to why I continue to delete paragraphs daily and make cups of coffee (that I don’t even want) in a bid to avoid writing and essentially remain in denial of what I am facing. (I am actually going to make a coffee now, but that’s only because I intend on sitting here and be nakedly honest with myself and not flounce around the ‘must write blog today’ task which has appeared on the last sixty days’ worth of to-do’s).

My journey commenced, through writing, some six months ago. For those who have read my story, you will know that when I refer to my challenges, I flip back in time to when I was a young gal on the brink of a very big and messy road ahead. Usually (and I use this word loosely), life does find its way back to some sense of tailored normality. I’ve previously mentioned the awkward conversations and the stares amidst confessionals but, for me, MRKH went back in its box. The fact that I reflect with so much humility and humour is a testament of my acceptance, or so I thought. How cocky I have possibly become. I have spent so much time looking back, not only have I walked bang into life’s door, I have stubbed and broken my big toe in doing so. I wouldn’t say I am old; granted, I am too old to join the Olympics or study ballet at a professional level, I am too old to stay in bed for days and wonder how electricity in the house just appears and, I am way too old to stay out until 3AM and not expect to feel it the next day. Thankfully, I am too old for boob-tubes, seesaws (so I was told) and hand-outs from dad (which I promise to pay back at Christmas), but there is still a massive part of my mentality that believes I am still twenty-one.

I have time to toy with careers, and homes, and be non-committal to marriage and mortgages. I can travel the world and bask in yoga and the exploration of my spiritual self with no fear of debt or over-draft. I am actually very grateful. My excitement comes from Christmas and cuddles with my parents and what fad or freedom I can schedule six months from now. Then one morning, eight weeks ago, life happened.

My world and perceptions were shortly to change and be shaken up like a fizzy can of soda. More worryingly, so did my anxiety and fears. I was faced with a phone call which took me on a twenty-eight hour journey across the world to be by my mum’s hospital bedside, with nothing more than a randomly packed suitcase of neon coloured tights and a handful of woolly jumpers when landing into an unusually hot British summer. As a side note, with gratitude, thank you God for not taking her that day and allowing me to see her courage and willpower to make a full recovery. You didn’t want her, but I do.

It was then; whilst sitting neatly folded up in the throne like chair of the hospital ward, pensive and quiet, I had this wave of fear. No, not fear. Fear is too placid. It was as though MRKH was a bare-knuckled boxer adamant to go the full twelve rounds with me and I just stared, searching for saliva, into nowhere.

Oh. My. God. Who is going to be here for me when my time comes? Who will bring a carefully drafted list of questions for the doctor’s consultation and a clean pair of flannel pajamas? Who will pay my bills when I can’t and who will know my ‘look’ when I’m tired and need quiet? Who will kiss the tip of my nose and provide a comfort that no nurse or friend can? I cannot envisage my children’s heads poking around the curtain, smiling and hopeful. For the first time in nearly a decade, MRKH had found its way back into my world and now I have so little time to choose or change the course of my future, if indeed I know what that future should be. The concept of loneliness and the probability that I will likely experience such loneliness, when at my most vulnerable, is confronting and jammed.

So, this is why I have not been able to write? I by no way negate the role of a husband or partner but I am certain, that because of my anatomical make-up, unless I fill my life with exception and magic, I will have to accept a life without children; a reality and void that is going to be very hard to fill. And boy oh boy, that was very hard to type. Please, please, please don’t think that I am not for one minute happy and thrilled about those who are so blessed to have beautiful children. My best friends are wonderful mothers and it is a joy to see them tinkering through family life. The birthday’s, Band-Aids, first steps and snotty noses are sweet and delicate. My niece and nephews, perfect. Equally, my freedom has become one of my most prized routines, with holidays in heavenly locations and evening meals edging on disgraceful, unhealthy and simple. My continued journey and practice of yoga is enlightening, purposeful and bliss. But what if all of this is not enough? I’m sure I would have pretty babies, although I probably shouldn’t be so shallow as to say it (but I do have nice eyes) and I also know that I have an abundance of love which frankly, not even ten puppies could use up.

MRKH is not me, not in the least. But this realization is as frightening as the day I was diagnosed; I still harbour the same instincts and expectations as any other woman. I often wonder, is it because I drop a teaspoon so easily; is this nature’s way of telling me to avoid handling humans? I am serious, I don’t know why that person is able to and I am not. They say you grieve for the family you can never have, perhaps I need to plan for the one that I know is possible? Do I even want a family?

Perhaps I am just one of those people who tap into anxiety and fear more easily than others.

But, with a sneaky suspicion and a glint in my eye, I feel this life is going to be okay!

-Ally

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I’ve Just Been Diagnosed with MRKH…Now What?

Posted on September 23, 2013 by beautifulyoumrkh

So you have just been diagnosed with some unique medical condition that you have never even heard of before. Even worse, it has to do with your female reproductive functions. Whether it is MRKH, infertility, or endometriosis; you don’t know whether or not you’re healthy enough to bear children or even have sexual intercourse in the future. Yes, these issues can be incredibly scary at first. Trust me I’ve been there…several times. You may be asking yourself what’s next. Before you panic or stress, there are several things you should know.

1) There is ALWAYS a solution to your predicament. You must know there are thousands of doctors who have gone to school for many years to educate themselves on your specific anomaly. Even if you don’t know of any physician yet, be proactive, do the research yourself! One of the most vital things you can do is to educate yourself because ignorance results in nothing but fear and panic.

2) There are hundreds and hundreds of girls going through the exact same thing you are. You’d be amazed at how many online forums and chat rooms you can find that focus specifically on giving you hope and strength.

3) Don’t ever think negatively about yourself. Everyone has some sort of obstacle they are facing whether it is relative to their health or something going on in their family. You are beautiful no matter what anyone says to you. One thing you must never do is compare yourself with models you see in magazines or on your television because truth is, sweetheart, THEY ARE NOT REAL. They have all had some part of their body altered in some way. Even if there is some girl in your grade everyone thinks is gorgeous. Chances are she is going through something scary as well.

4) The final, most important thing you can do is to constantly think positive. I am telling you now optimism can get you through absolutely anything. Be thankful that your situation isn’t as bad as it could be. Don’t let your health rule your life. For over a year I allowed that to happen and because of that I missed out on some of the best experiences I could have had.

So, continue living your life just like you have been because, believe me, it only gets better from here.

-Carly

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The Strength Within Me

Posted on September 16, 2013 by beautifulyoumrkh

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If it was not for that devastating moment when the doctor looked into my eyes and said, “We cannot find a uterus” I may not have been able to discover the true strength within myself.  At the time, my dreams were shattered.  I felt as if my whole life had permanently crushed to the ground instantly.  Countless nights were spent crying into my family, boyfriend, and friend’s arms; not only did they see the pain I was going through, but felt it as well.  My family was willing to give me my space to cope and my boyfriend and friends would reassure me that they would always be there for me to provide whatever help I needed.  Yet, even with so much support surrounding me, I still felt weak and alone.

I relied on the Lord to pull me through the feelings of pain and isolation.  Soon after my diagnoses, I wrote in a journal, “I truly believe that everything happens for a reason, and even though I haven’t figured out my reason yet, I am trusting the Lord that He will take care of me and make sure everything turns out exactly like it is suppose to.”  Rather than hoping for a miracle that everything would go back to normal, I would pray every night to have the strength to understand and cope with MRKH.  I just needed some sort of sign telling me that I am strong enough to move on with my life and stay positive, but I just wasn’t finding it.

Even though I continued to cry myself to sleep while praying, I soon started to catch on to the statements people were making and began piecing it all together.  Just a few months after my diagnoses my boyfriend texted me and said “You are going through something that not a lot of girls have gone through…I look up to you because even though you are a small girl, you have the biggest heart and the strength to pull through, which just blows me away.  I only wish I could be as strong as you.”  When discussing MRKH with my friends, I started to notice they would also say things like, “It takes a very strong woman to be able to go through the struggles you are facing, while continuing to strive through every day activities with a smile.”  One night while discussing various difficulties I’ve faced, my brother told me “the best learning points in life come when you have to struggle.”  Take this as an opportunity to learn about yourself and figure out how this can make you into a stronger and better person.”  After hearing all these statements, I started to realize everyone kept talking about me having such “strength.”  I personally was still unable to see the strength I had that everyone was talking about, but understood that this was exactly the sign I was looking for from the Lord.  Maybe everyone was right; maybe I already had this strength the whole time and just never realized it?

It wasn’t until the night about a year after my diagnosis that I finally came to understand what everyone was talking about and that the way I go about handling situations affects everyone else in my life. That night, I was texting my brother about MRKH while he was away at college, and he said, “I am just so proud of you to handle everything the way you have, it takes a special person to do what you have done.  You have no clue how much of a role model you are for me.  I know the older brother should be the one to set the example, but I cannot explain to you how much this has pushed me to give it my best in everything I do and not get down when the little things in life bother me.  You are like that ray of light that reminds me that my pain is not even 10000th of a time the pain you felt when you found out.”  All my life, I’ve looked up to my brother, wanting to be as good as him at everything.  After reading that message, I broke down and finally realized that I needed to come to terms with MRKH, not only for myself but also for those important in my life.

Once I recognized that the people I have always considered to be my role model, actually seen me in the same way, I decided that I was no longer going to let MRKH define who I was as a individual, but simply embrace my uniqueness.  This was my life, my body, and my family.  I needed to make sure I used the strength within me to have a positive attitude and prove to others that even when you may think you have hit rock bottom, you have the capability to get back up on their feet.  Life is about learning how to adjust to change. Every struggle someone conquers throughout their life is just another step toward finding and embracing the strength within themselves.

My journey with MRKH has helped develop me into a better person.  Personally, I would say that MRKH is one of my best qualities because of what it has taught me about life in general.  It has shown me that it is important to make sure the little things in life are not taken for granted because they can be taken from you in an instant.  I have also learned to stop myself from making quick judgments on others, because even if they don’t show it on the outside, they may be struggling with similar life dilemmas.  No two people are the same, and nobody is “normal,” so there is no reason to look down on others because of their unique qualities.  The most important thing MRKH has taught me is that by being true to yourself and trusting those closest to you for support, almost anything is possible to get through.

MRKH has simply become a way of life for me.  My “Strength” tattoo on my stomach is a constant reminder that I have found the strength within myself to tackle life’s curveballs with a positive attitude. I want to be able to share that same outlook with other women struggling through the same obstacles that I’ve had to overcome.  I chose my hip/stomach area as a symbol of where I would hold a baby if I had a womb. Since I will never be able to carry my own child, the tattoo is a reminder that I was given the strength to move on and find love with a child someday, even if I can’t carry the child inside me.

My friends and family continue to express how proud they are for how strong I have been through this experience thus far.  I’ve explained to them that everyone has strength within themselves to overcome any hurdles set before them.  Realizing that strength is there and learning how to embrace it is the most difficult part for people.  Opening up to others was the best decision I made.  Without the people that were willing to be there for me during my coping process with MRKH, I would have never been able to find and embrace my true inner strength.

 

XOXO

– Amanda

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Diary of Diagnosis Day

Posted on June 28, 2013 by beautifulyoumrkh

6:00am. I am thirsty and tired. I am nil by mouth as required for this afternoon’s standard procedure, a laparoscopy at the Royal Berkshire Hospital, UK. Although, I am not quite sure what all this fuss is about. My GP some weeks ago uttered, “Alison, no need for concern or alarm.” So, based on the doctor’s advice, I have decided to not give today a second thought and enjoy this rare day off from studying for my A-Levels exams. However, I only have three months remaining before my final exams and I am not quite sure how I am going to pass them, let alone become an aspiring thespian, which has always been my dream. Why do I feel like such an outsider at the moment, in a place I have been every day for the last six years? I am physically there; sitting amongst my friends but it all sounds a bit muffled and foreign. Granted, I have not been kind to myself over the recent months. My regimented intake of only one hundred and forty calories a day, compared to yesterday’s disgusting act of gluttony isn’t doing my self-esteem much good. This is driving me to despair. Who is this Ally that is making my life so difficult all the time? I know harming myself is only going to give me a moment’s bliss, followed by the stomach churning fear of how I am going to explain this cut and that mark and what happens if they make me change in drama class again and someone sees it. What is so wrong with me that I encourage such anger, self-hatred and obsessive control?

8:00am. I am perched on this really hard starchy bed and my mum is being gentle and attentive and funny as usual, when the nurse informs me I am scheduled for surgery just after lunch (what lunch?!). Gosh, I am thirsty and bored. The walls are so white and devoid of care, which seems strange for a place built to do exactly that. But still, how lucky am I to get a day off school.  My best friend said she will come and visit me later today after the operation, as she works in another part of the hospital and I am tickled pink that in a matter of hours, I am going to be just like her. We have been friends for twelve years now and I don’t think there is a topic we have not dissected or giggled about? Inseparable, infallible and soul shares to the most intimate degree.

1:00pm. It’s my turn, finally! Wheeling me down a bleak, concrete corridor seems so morbid and cold, yet I still cannot fathom why I am not experiencing any bouts of nerves or fear. I have been consulted about the laparoscopy procedure which seems all very straight forward. A small camera inserts into my belly button under general anaesthetic and hopefully, I will wake up and head back home in time for tea. The nurses are smiling at me now. I am reassured and comforted as the anaesthetist softly asks me to count to twenty.  One, two, three…sleep.

2:00pm.”You have the prettiest eyes”, I slur. “Thank you” said the nurse adjusting my oxygen mask. Why on earth are my shoulders so sore? Was there a careless porter using my shoulders to open the swing doors or did someone accidently roll me off the operating table during my procedure? As I am overwhelmed with pain and disorientation, I feel my mums hand wrap around mine, and finally, finally I think, I AM NORMAL. I wake up to find my friend sitting on the bottom of the bed. “How are you feeling Ally?” still slurring, “give me a couple of hours and I will be up and about in no time, I am just like you now love.” I actually realize, I won’t be going anywhere for a few days as I sense a group of ‘strangers’ have just prodded me down there for a good hour. However, I have this feeling that life is going to get much better and I can focus on the things that matter, like boys and drama classes. And I suspect, learning how to address periods and things.

3:30pm. The doctor commences his postoperative rounds. I am at the opposite end of the ward and like all the other women, waiting for my debrief, stale ham sandwich, and explanation as to why I still have not received my first period. Shortly, I suspect I will be discharged to make my way home and commence life as a young teenage girl, all intact. Out of sequence, and unlike others, my curtains are drawn. I pause and then look for my mum. She is confused and looks back at me. I am confused and look at him. The nurses seem sad and look at each other and then the doctor just stares back at me, with his sharpened pencil and a photo-clip, “ Alison, you have what is known as MRKH; Mayer-Rokitansky-Küster-Hauser, the four physicians who first who first diagnosed the condition.” What do you mean no womb and no cervix and why are you talking to me about dilation and conventional sex lives versus not. Surrogacy, adoption, routine and open seminars for ‘girls like me’, I really just want to go home now please. “Please mum, I just want to go home!” I feel so sick, but there is no food to be sick with. My eyes flicker from side to side anxiously, and I look over to see my mum whispering into the telephone with her eyes closed, “we need to take her home, I have very bad news.”

4:00pm. My dad is sitting on the bed’s edge, holding my hand in a stoic, comforting and kind way. In the midst of my recent diagnosis, I believe that this is the time to confess “dad, last week I got a tattoo.” Pause. “Well, that is okay Ally; we don’t have to talk about this now.” My relief is comforting but my tears soaking through the fabric of his trousers as I rest my head on his knee, seems painfully real. My parents discuss me in the corridor and what has just occurred over the last eight hours. They look pale. I am not privy to their conversation; I do not need to be, as my grief is now their grief. The doctor politely explains to me that I have not been hit by a swinging door but in fact, my whole body was expanded by pumping excess air into my abdomen, so they could navigate the camera around my internals with a bit more ease. A common side effect just so happens, is extreme pain in the centre of the shoulder blades. Who cares!

Oh God, I am not like my friend, nowhere even close.

5:00pm. I am home. I am so, so tired, I just need to sleep.

————————————-

Present day. That was me sixteen years ago. A week later I went to the Queen Charlotte’s and Chelsea hospital and spoke with a consultant about the next stages of treatment. For the next 12 months, I would go through all sorts of self destruction. In fact, it gave me a license to push the boundaries even further with how much I could possibly hate myself and hate the world. The isolation of such news is beyond harrowing, it is physically gut wrenching stuff. At the time, I was fortunate enough to be in a relationship with someone who was calm and compassionate, non-judgemental and accepting (as I remember it anyway). The first leg of this journey could have been much worse and my opinions of men from the get-go could have been tainted with cynicism and fear. And, although the relationship predictably ended just after diagnosis because I could not cope, I owe special thanks to him out there.

However, my associations with people changed to those who could not identify with my pain or at least be in equal amounts of hurt also, I never sat my A-Level exams, my dad was not okay with the tattoo after all and I wish that I had met someone like me earlier. My friend is still my best friend, though I never made it as an actress and my relationships have been conventional but just as hard as any. My parents have been wonderful, a blessing and a joy and my mum, experiencing guilt as the maker of my demise, seems at peace with MRKH and the demons it brought her along the way. The treatment worked and acceptance came. I always say, that talking about this will not eliminate grief. Grief is guaranteed, however if I can reduce ten years of pain to one for someone else, then I will write for the rest of my life. MRKH sisters don’t need the same DNA to link arms and unite, to love and be loved. That feeling at 5:00pm is the silent sisterhood.

– Ally

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The Big Gulp Moments and Courage

Posted on May 23, 2013 by beautifulyoumrkh

Since my last blog, I had this sugary, fuzzy feeling in my belly for about a week after I saw it posted. I felt so proud of myself and had this immense need to share with anyone who was willing to listen. Though in reality, that would be inappropriate, and have since only shared with one person. The process of sharing my story filled me with a jittery elation and I couldn’t wait to start writing again. I just know that this is my time of acceptance.

Life hasn’t always been like this though. I remember a few years ago, I posted a comment on the MRKH Facebook support page. That day, I must have been feeling vocal and proud and ready to accept this part of my life. I have always felt a bit lonely; an observer of a constantly moving conveyor belt witnessing baby bumps and marriages and wondering if I could ever have ‘that’ life. At that time, by joining this online community of people, surely, I was guaranteed to eliminate these feelings of abnormality and uncertainty. I did post one comment; I couldn’t tell you what it said, but it sounded empowering and liberating. I then chose to delete it two days later in the fear that someone would identify me. In addition to identifying me, would Google MRKH and stumble upon all the encyclopedic details from laparoscopies, to dilation, to chromosomes and all the other uncomfortable facts that comes with an MRKH diagnosis. So, I decided to go back into hiding.

Furthermore (and I am not entirely proud of this fact), I have also been prone to telling some lies around this subject over the years of who I am. And these were not just little white lies, they were great big whoppers. When confronted with certain questions, in what are typical discussions among women, MRKH would creep up out of nowhere.  Suddenly, I felt naked and exposed and then the almighty punch to the stomach, “Do you have a spare tampon?”, to which I replied “sorry, not today”, “What form of pill are you on?”, I said “um, I cannot remember the name of it, begins with a ‘C’?”, “Don’t you just hate period pains?” My only reply to the latter is, “just jump up and down” because as a 12 year old, I was handed a pamphlet at school that suggests you do exactly that. I know no other solution to period pains.

I still fib a little to this day. Not through shame, but sometimes my medical history is simply not necessary and to expose this to the people I am with, namely when making my morning coffee, doesn’t seem quite right. Sadly, this is just my reality; however, I can walk away from these moments of utter social discomfort knowing if I had to, I could say the words MRKH with ease and a certain amount of pride.

Over the recent months, I have seen courage in every form. There is the beautiful Jaclyn Schultz, Miss Michigan 2013, speaking to many media outlets within America on behalf of the BYMRKH Foundation. Her courage to openly speak to thousands of people, educating the masses on what MRKH actually is and disclosing that like me, was born without a womb, leaves absolutely nowhere for her to hide. Jaclyn is truly stunning but more stunning than her outer beauty (and I mean drop-down, jaw hitting the floor, wouldn’t want to see her on a bad day kind of beauty), is her bravery knowing that certain comments will be whispered and eyebrows may be raised and all the while, staying true to the commitment of who she is.

Then there is another kind of courage. A courage which may seem subtle and discreet but requires grit and with the clammy palmed hand, a click of a Facebook page. I see more and more women connecting with one and other online; asking, sharing, applauding, and at times just looking for answers. Searching for empathy, sympathy, relatability and at times, just a virtual shoulder to cry on. It fills me with that warm, fuzzy feeling all over again.

I often read, how can I tell my boyfriend? Will he still want me? There are no straight answers. It’s individual and painful and requires usually a pre-written rehearsal. A big gulp type moment naturally ensues. I have presented this information three ways in the past; a quip, followed by a rambled explanation so they could not actually hear what I was saying, a close confidant, who took it upon herself to do the telling on my behalf (we are no longer in contact), and via a text message. I should reiterate, sending a text message is a very bad idea and under no circumstances, should ever be tried at home!! Though seriously, this is a ‘ripping of a plaster moment (AKA Band-Aid for the US audience) and the wound will heal.

But, all I can say is, the man that takes you by the hand and assures you that the future can be pleasurable and hopeful and beautiful, is as special and as beautiful as the woman’s hand he is holding, MRKH or not.

According to my resources, courage has seventy-two synonyms. But I shall add another, you.

– Ally

 

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First Half Marathon Supporting the Beautiful You MRKH Foundation!!

Posted on April 25, 2013 by beautifulyoumrkh

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I’m so happy to announce that my amazing and supportive sister, Sara Ruth, is running her first half marathon to raise money for the Beautiful You MRKH Foundation!! She has greatly supported me on my MRKH journey since diagnosis and I’m so thankful she is using her first half marathon to help raise money and awareness for BYMRKH!

I am so touched by the support my sister has provided me with over the years and her decision to run for BYMRKH, that I thought it would be great to interview her about what motivated her to run her first half marathon, why she chose to raise funds for BYMRKH and how to support a family member with MRKH.

Here is what she had to say:

BYMRKH: What inspired you to run your first half marathon?

SR: I decided at the end of last year that I wanted to learn to do something new and push myself. I’ve played sports my whole life but have never tried running long distance. It was intimidating at first, but I’ve really grown to love running throughout the last four months. Training for the half marathon has become a stress reliever for me and I hope to continue running.

BYMRKH: How did you prepare for your first big run?

SR: I began by researching various training schedules online and then I chose one that I thought would work best for me. I started running one mile four times a week. I slowly started to increase my distance and was amazed to see how quickly I progressed.

BYMRKH: Why are you using your first half marathon to raise money and awareness for the Beautiful You MRKH Foundation?

SR: I’ve found it difficult to support my sister in her non-profit because we live far away from one another. I thought this would be a great opportunity to spread awareness, raise money, and motivate me to run the half marathon. I was surprised to see that this half marathon wasn’t in support of a non-profit organization, and decided I could use this opportunity to support my sister and the Beautiful You MRKH Foundation.

BYMRKH: Will you be thinking about anything in particular as you run your first race? Do you have anything to motivate you or inspire you to keep running when you start to feel exhausted?

SR: I’ve decided to dedicate each mile to someone or something. My family has been a huge support system for me. They have been on my side since day one and they will definitely be on the mind throughout the whole race. On the thirteenth mile I will be thinking about the Beautiful You MRKH Foundation and all the women and the families affected by MRKH. I will be thinking about my sister in particular who has such a passion for this Foundation. Being the younger sister, I’ve always looked up to her and it’s great to see her hard work starting to pay off. I know that this Foundation will be successful in spreading awareness and providing support to anyone who is diagnosed or affected by MRKH. I hope my big sister who has always looked out for me, will see that I am looking out for her. I dedicate this half marathon to her, for making the bold decision to talk about her journey and be a voice for the voiceless. She has truly been an inspiration and I know Amy, my sister, and the Beautiful You MRKH Foundation will be successful.

BYMRKH: How much money do you hope to raise?

SR: My goal is to raise $1000.00 for BYMRKH. I’m amazed and thankful for the support I’ve received from my co-worker, friends, family and MRKH community. It’s nice to see so many people (many who have never heard of this Foundation or the syndrome) support this Foundation. I’ve received a lot of interest and questions about BYMRKH and in running this race, I hope to not only raise money but awareness to a Foundation that is greatly needed. I feel blessed to be able run in support of my sister, women everywhere with MRKH and the Beautiful You MRKH Foundation. I hope to continue running and possibly raise funds for BYMRK in future races.

BYMRKH: Thank you for always showing support to me with me through the highs and lows of my MRKH journey. If you could give advice to other family members who are supporting someone in their family having MRKH, what would it be?

SR: I think educating yourself about the condition is the first way to start showing and becoming supportive with anyone who has MRKH. It’s impossible to understand what someone is going through when you’re not experiencing it yourself, but grasping the concept of the condition can help provide support. Having this condition might appear intimidating to young women with MRKH and their family members. In our family, we were able to talk somewhat openly about things related to MRKH and I think that not only helped my sister but the family as a whole. My sister found out that she had MRKH when she was a teenager, which is the common age to be diagnosed. Being diagnosed during such a fragile period in your life is really hard. I think receiving support when first being diagnosed is so important and letting the women with MRKH know that she can talk to her family about it (if she wants) can be very beneficial.

BYMRKH: Are there any misconceptions that you feel the general public has about MRKH after hearing it for the first time?

SR: I think in general, people struggle with anything that is different or not well known. This is such a unique condition that affects a lot of women. Spreading awareness is crucial especially within the medical community. I hope that spreading awareness about MRKH will provide strength and comfort to those diagnosed with this condition that greatly need and deserve it.

BYMRKH: There is limited support available not only to women with MRKH, but also to their families and care providers. Looking back at when I was diagnosed (13 years ago) do you think it would have been helpful for there to be more support available to family members and care providers?

SR: I believe the Beautiful You MRKH Foundation is very much needed. BYMRKH has already helped so many women with MRKH and their families by connecting them with other females with MRKH, which helps take away the feeling of isolation and provide a support system of women that understand the obstacles and triumphs that come with having MRKH. I’ve always believed there’s strength in numbers and having the opportunity to connect with other women with MRKH and their families can be powerful and life changing. After receiving a diagnosis like MRKH, anyone would need support and answers as to what their future brings. I know things would have been easier for my sister and our family, if there was a group of people or an organization, like the Beautiful You MRKH Foundation, who not only understood the journey she was about to embark on but could help support her through the process.

~*~*~*~*~*~

I couldn’t be more proud to have my sister be the first person to raise awareness and donations for BYMRKH, by achieving a personal goal of hers while helping the MRKH community! Thank you, Sara, for all of the support, love, and compassion you’ve shown me over the years, regarding MRKH and life in general. I wish you the best of luck on your first half marathon!! You are the perfect example of an MRKH supporter! You are helping us provide a voice for the voiceless! ❤

-CR

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Becoming Ally

Posted on April 10, 2013 by beautifulyoumrkh

My name is Ally. I am no longer ‘anonymous 31, Australia’.

My name is Ally and I was born with, live with and at times, contend with MRKH. Wow. I guess that wasn’t so hard. I have ’outed’ myself beyond my closest friends and relatives and thrown myself head first into a wonderful community of ‘sisters’ just like me. I am inching myself into the unknown; to explore MRKH and the journey it has taken me on. This journey at times has been fairly okay, non-confronting and generally absent from day to day life but there have been moments, where quite frankly, it has been rubbish. I didn’t sign up for this but as there is no ‘return and exchange policy’ on the bodies we have been given, I have done the remarkable thing and well, accepted it.

I should probably add; I am in fact an English girl living in Australia. I was fortunate enough to be diagnosed in the United Kingdom and treated in the Queen Charlotte’s & Chelsea Hospital London; however I have since left the UK and living, a not-so glamorous, but comfortable life in Sydney, Australia.

I was 16 when I was growing impatient that I had not received my first period. That would be such an odd thing for most women to hear. How can you possibly look forward to having a period? I hear they are uncomfortable, painful, unhygienic and even a bit taboo! They create their own category of slang, such as ‘the curse’, ‘the blob’, where girls in circles declare “I’m on”. That is my least favourite by the way. But at the time, I just stood there, waiting and dreading, and waiting and wanting and nope, no period arrived.

Before taking my high school exams, still blissfully unaware and believing I was a ‘late starter’, my mum and I thought it best to prepare for this period. The exam that day I believe was GCSE mathematics (GCSE is the UK’s equivalent to high school exams). Now, I can quite comfortably admit that I hate maths and it didn’t think much more of me but in comparison, multiple equations and algebra was to be the easiest part of this day. There is my seemingly helpful mother, dragging out of this cardboard box at the back of her bedroom cupboard, a padded, thick, slightly sling-like sanitary towel. It was huge. It was ugly and it was huge and I had to wear it. How times have changed (I hope), since 1997. Turns out I failed my maths exam and as we all know, the period never did come.

I don’t recall being frightened or fearful. I don’t even recall thinking I was different. At that age we have two different mindsets, the immediate and the ‘dream like state’ of what life will be like when we are a ‘proper grown-up’. I do however; remember going to my local GP with my mum and having a terrible and grossly invasive prod from the old man doctor who had seen me overcome tonsillitis and ear aches but not this. He immediately looked concerned and referred me to a specialist. And so, that was it. Life was to change forever.

Change is indeed inevitable and usually a healthy part of evolving as a person, but try telling that to a sixteen year old who is already trying to adjust to adult life and all the feelings that come with it. For me, a useful form of guidance, aside from the immensely uncomfortable conversations with my mum on what I can only determine was her stab at the ‘birds and the bees’ talk, were the wonderful and trashy teen magazines on offer. And of course, I was very fond of Judy Blume novels, ‘aka’ the best novels for translating the ‘frequently asked questions’ on being a teenage girl. It goes without saying, my mum is actually my angel and I couldn’t do life without her.

This information was my artillery for dealing with boys, and periods, and the ‘first time’ and all the exciting yet terrifying obstacles of growing up. However, after diagnosis, literally everything I thought I knew (and learnt from the delightful Ms Judy Blume), would become irrelevant, harrowing, and combative. In reflection, I was grief stricken and about to embark on a self-destructive path which I can imagine was awful to witness and I suspect, partly responsible for who I am today.

This may make you giggle. Before I actually got diagnosed, like many teenagers I tampered with the idea of taking ownership of my body and what did I do on a rainy Saturday afternoon with a pocket full of my own wages? That’s correct, I got a tattoo. Soon to be three; not all on the same day but in fairly quick succession which doesn’t make it any better! What was I thinking?! I will save some specific stories for a later blog with regards to my relationship between rebellion and parents, but I do want to mention an amazing irony in the midst of what was a very sad stage in my life. I decided to get a cherub tattoo on my left hip. This cherub is cute and colourful and totally unnecessary. And although I loved it, my mum was mortified. Her words, which ring clear to me to this day were, “what on earth is that going to look like when you get pregnant”. Well, it actually looks pretty good and unscathed mores to the pity. But humour aside, this is just a prime example of the natural dialogue between mother and daughter.

As a nearly 32 year old woman, which has its own woes (some real and some pretty ridiculous), I have found some comfort and acceptance in who and what I am. And in fact, the reactions of those around me when I hesitantly announce “I have something called MRKH”, is met with admiration, compassion and a fair bit of intrigue. However now, after nearly 15 years, I am confident enough to satisfy this intrigue and offer some explanation as to what makes me quite different from the rest. That’s why WORLD, I am breaking my silence. I am ‘coming out’ not to only who reads this, but more importantly, me. I am simply becoming Ally.

– Ally

 

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BYMRKH interviews Jaclyn Schultz and welcomes her to the BYMRKH team!

Posted on March 25, 2013 by beautifulyoumrkh

The Beautiful You MRKH Foundation (BYMRKH) is pleased to announce that Miss Michigan 2013, Jaclyn Schultz, is using her platform to bring awareness to MRKH and has partnered with the Beautiful You MRKH Foundation.Image

Jaclyn is a grad student at Michigan State University, and is working towards her Masters in Advertising. She is also employed full-time at Brogan and Partners; where she is a media buyer. Jaclyn contacted BYMRKH because she wanted to use her year to bring awareness to MRKH and was interested in getting involved with BYMRKH. After several communications between us, we saw that she was enthusiastic about improving the lives for females with MRKH and becoming a positive role model for females of all ages. BYMRKH is excited to be working with Jaclyn and we welcome her to the BYMRKH team!

It has been a pleasure getting to know Jaclyn over the last couple of months. We decided to interview her so that you could get to know her, too.  We asked Jaclyn some questions about herself, about MRKH and how MRKH has affected her life. Here is what she had to say:

BYMRKH: Please explain your experience with having MRKH and how it’s affected you:

JS: I’m sure many women will back me up on this when I say that the teenage years were not the easiest. Being a teenage girl is hard! Your hormones are all over the place, you are developing into a woman, you are worrying about having friends in high school, getting good grades, fitting in, boys sometimes teasing you, etc. etc. One day you are going to school, trying to fit in and the next, you’re sitting in a doctor’s office getting the most earth shattering news, which you don’t really even understand.  That’s how it was for me anyway. I was 15 years old when I was diagnosed with MRKH. I didn’t really understand what it meant at the time, all I knew was that my parents were devastated; I would never have a period (which was kind of cool) and that I wasn’t able to carry my own children (which wasn’t so cool).  I only shared my experience with a few friends during high school because it made me different, and that’s the last thing I wanted at the time. It wasn’t until college that I started to open up about MRKH. I realized that being different was a good thing, and that MRKH is what makes me unique. I got a bit angry, actually. I did not want to hide it anymore, and was mad that I did for so long. For me, making it a secret made it a bigger deal than it actually was. The more I opened up and talked about it, the more at ease I felt with myself. And besides, having kids was many years down the road so I tried not to worry too much about it, and to just live life as it came.  Surrogacy or adoption was still an option and whomever I married would love me enough to be fine with either decision. So, I went on with college, graduated, got a job at an advertising agency, went back to school to get my master’s degree and then randomly decided to enter the Miss Michigan USA pageant and ended up winning.

Through all my accomplishments I never let having MRKH, or any other struggle in my life bring me down, or keep me down. I just get mad at whatever or whoever tries to bring me down and then rise above it, conquer it and then smile and say “eat your heart out” J I think having MRKH help teach me that. It made me realize that things and people will always try and tear you down in life, but you have to dig deep within yourself and rise above it.

BYMRKH: Why are you choosing to bring awareness to MRKH?

JS: It took me a while to come to the decision to use my title to bring awareness to MRKH, simply because I’m putting something very personal out there for the world to know. But I knew I had to try and bring light to it because if I didn’t, I would regret it for the rest of my life. Sometimes the hardest things are the most rewarding, and this certainly has been the most enlightening and humbling experience of my life. When I started reading the girl’s stories on the BYMRKH website I knew I had to make this a priority during my year. I hope that by putting myself out there and showing the girls that I have MRKH that they realize how beautiful they are, that they are special in a good way, and that MRKH should not define or consume your life. I hope it shows girls that despite obstacles in life, you can always overcome and be successful – you are the only one in control of your life, always. 

BYMRKH: Why did you choose to partner with BYMRKH during your year as Miss Michigan?

JS: I chose to partner with BYMRKH during my year as Miss Michigan, and for the rest of my life because they are committed to changing the way being diagnosed with MRKH is handled, and to help girls become aware that they are not alone. From age 15-24 I had never spoken to another person with MRKH, nor did i know they existed, it was very isolating. I hope that by partnering with BYMRKH, together we can eliminate the feeling of isolation to MRKH girls everywhere.

BYMRKH: Any advice you would give a girl who was recently diagnosed with MRKH?

JS: I know it’s hard, but try not to let having MRKH consume and define your life. There are so many wonderful things that this life has to offer. Don’t let negativity consume your mind. Concentrate on school, getting into college and keep thinking positively. You may not understand now, but everything happens for a reason, and things end up working out.

BYMRKH: Have you been surprised by anything you’ve learned, since joining the MRKH Support and Awareness group?

JS: I was surprised by how many MRKH women were living right in my area! Up until 6 months ago, I had never seen, spoken to or been exposed to anyone with MRKH. It was so nice to join the group and see that there are SO many women just like me.

BYMRKH:If you could have one wish for future generations with MRKH, what would it be?

JS: If I could change one thing for future generations with MRKH, it would be for recently diagnosed girls to not feel like they are 1 in 4,500. The feeling of isolation was the hardest part for me when I found out. I would want them to have a support system from day one and be exposed to women who have MRKH and are doing great things with their life so they could see that they will be okay and things will get better. 

BYMRKH: In your spare time, what do you like to do?

JS: I don’t really have spare time right now. I work full-time so that takes up the most of my day, then I have grad school at night or an appearance or event. Weekends are usually for homework or Miss Michigan events. If I’m not doing one of those 3 things then I’m at the gym busting my butt to get ready for Miss USA.  So I guess my spare time is spent at the gym 🙂

BYMRKH: Please tell us something that most people don’t know about you.

JS: Most people probably look at me and think I’ve been doing pageants my entire life. This isn’t true. The Miss Michigan pageant was my first one. When I told my parents I entered, it was so out of left field since I had never shown an interest in pageantry before. I am actually kind of a tom-boy. I played basketball for 7 years, volleyball for 4. I also played softball, track and swimming in school. I am very competitive and love what sports taught me growing up. I have to wear heels on stage, but I would take a pair of Nike running shoes over heels any day 🙂

 

Thank you for a great interview and our first blog post on The Empowerment of the Silent Sisterhood blog. BYMRKH wishes you the best of luck on your journey towards the MISS USA pageant!

Christina

 

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Welcome!

Posted on March 25, 2013 by beautifulyoumrkh

The Beautiful You MRKH Foundation (BYMRKH) wants to welcome you to our blog; The Empowerment of the Silent Sisterhood! This blog will have posts from the BYMRKH team, appointed guest bloggers, and interviews with MRKH sisters from around the world. MRKH sisters everywhere, you are no longer alone, welcome home!

Amy and Christina

http://www.beautifulyoumrkh.org

Organization FB page: https://www.facebook.com/pages/Beautiful-You-MRKH-Foundation/136594583180750

MRKH Support and Awareness: https://www.facebook.com/groups/squirrellhill/

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