Dear My Sister,



​It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes…….


MRKH is a path full of surprises!

My Dad bought me a vibrator! Yep, that’s right, my very own vibrator!

So at 16, thinking I had received my first period (which totally turns out it wasn’t -just a result of a heavy night on the booze.. ooops), my mum took me to the doctors to find out what was actually going on!

After continuous visits, blood tests, ultra sounds (let me tell you- the internal one was not very pleasant), the inconclusive results and ‘intimate experiences’ confirmed that I was off to Melbourne. After what seemed like ‘never ending tests’ was the final ultrasound (where I actually pissed on the bed I was lying on, because I’ve never need to pee so bad ever in my life whilst being poked with a big metal thing).

Then I heard the life changing words that broke my heart and tore my life into a million pieces. The specialist said “you have no uterus, which means you won’t be able to have children.” 

“Wait, what, hold on a sec”.

Well, it turned out that wasn’t the exact truth and although I don’t have a uterus, I still have two fully functioning ovaries. This was followed up with an amazing specialist appointment with the amazing Dr. Sonia Grover, who was able to elaborate on the details, demonstrating my amazing strength as a sixteen year old who had no idea what was going on.  

“Wow, I might not ever have a baby, WTF!”.

The doctor went on to confirm a number of further medical concerns, which were luckily not to severe- just mild scoliosis in my lower spine (if you can call that not severe?). Now let me tell you- this is still a lot to try and absorb in one day. Fortunately, my lovely doctor was brave enough to breach the topic, “are you already sexually active?”

I replied, “Ummm yep, guilty....”.

So turns out this was a positive outcome, after having the speech about dilation and surgery. The advice offered was “as it seems that you are already sexually active and it doesn’t seem to be causing an issues, why not get a vibrator to help with building your vagina, you may as well keep having fun?”.

A small win perhaps? However, I was still underage so that’s what resulted in a very awkward ‘family adventure’. A little while after this epic burden, we were off to Shepparton for a shopping day as little retail therapy is always good! So whilst I was under strict instructions to remain in the car, off went mum and dad into this creepy looking sex shop. My only input into what they were to buy for me was- I wanted a purple one! So as I waited patiently in the car, I peered out the back window to see my dad gripping so tightly onto a brown paper bag and mum, pacing anxiously along behind him.  The proceeded to jump back in the car with hardly a word spoken - both bright red and mum with a slight grin upon her face.

I didn’t even get to see the ‘product’ until we got home, but it was definitely purple!

So, I am forever sorry daddy that this was the way you had to find out your innocent daughter wasn’t a virgin! And from the stories I’ve heard, using a vibrator was way better than dilatory therapy.

So this is the path I was given. The biggest underlying question, who will ever love me if I can’t give them a family? Yes - men can be seen as complete pricks. My boyfriend at the time of diagnosis told me it was my own fault because I started drinking too young! Of course my hurting allowed this thought to run through my head. This all lead towards my downward spiral consisting of underage drinking, promiscuity and soon after, recreational drug use – all my self-prescribed escapism tactics. But back to reality - not all men are actually pricks. I had a few nice ones along the way, who were more than accepting of my circumstances, in which I very openly discussed in the first months of our relationship.  So, as scary as it is to tell someone, the lesson learnt in my journey is- don’t be afraid to be honest. If they are not accepting of who you are and everything that comes along in your bubble, then they don’t deserve you. Go find someone who does. In all seriousness, having  a family isn’t always going to be the first and only thing on a guy’s mind- most men will be alot more accepting than you think.

Not only was finding out one of the hardest things I’ve ever encountered in my life to date, but it has also set me on a path that has made me stronger, allowing me to share my special and awkward moments along the way. Plus, I have also had the opportunity to meet some very special women who I now consider friends for life. Having MRKH has not defined my life- yep sure it has lead to me making some ‘not-so-smart’ choices in life but at the time, that’s what I needed to do. Knowing that I had friends and family always there to care and support, meant that I had the space to actually make mistakes along the way. Having MRKH isn’t easy but hey, how boring would life be if it wasn’t. Life should be filled with up’s, down’s and epic challenges- so welcome them. This is your path, so live it.

MRKH is just an obstacle along the way.

And even though I had to encounter the awkward and funny moment of dad buying me my very first vibrator, he certainly didn’t buy my last, Shhhhhhhh!!!!!!

With love your Sister,  


Sarah Holland

Melbourne, 

Aged 27

 

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In thinking on how best to write a letter to myself, ten years in the past, I had to dive deep into my memory and try to recall where I was in my life so many years ago. Several things came to mind, over time, as I reflected back on that part of my life. The one thing that stood out over everything, however, was my desire to feel beautiful. To feel beautiful, wanted, and loved.  Not atypical things for a teenage girl to feel, but perhaps I felt those things stronger than most.  And so, my letter:


Dear past Kristen,


It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may
find some comfort that you are not alone. Here goes…….


I can see you, in the morning getting ready for school. I am watching you analyze everything from your hair to your body, and cringing at the image that reflects back at you. I can remember those days, at 16… staring at the mirror and thinking; “if only my hair were less frizzy…” “if only I was thinner…” “if only my teeth were perfect...” “if only I had those things, then I could feel beautiful.”


From ten years in the future I can tell you that your hair is going to lose that unruly frizz that haunted your teenage years.  You will struggle with your desire to be thin, and take drastic steps to try and achieve it. But one day, you will let it go and learn to love your body shape as it is.  You will lose the braces and retainers you have been wearing since you were a child, and your smile will soon be bright and contagious. 

But there is something much bigger than hair and teeth that is about to change
what you think is beautiful.


For so long, to you beauty meant conforming to the outer appearance of those
women you saw on television and in magazines. You’ll long for their long thin legs, perfect eye make-up, and flawless skin. But soon their outer appearance will mean nothing to you. Beauty will begin to take a different shape in your mind. Rather than pining after their physical attributes, instead you will pine after what all of them take for granted; the very thing that makes them female. While most teenage girls will feel a pang of jealousy at a girl’s incredible new outfit, you will feel it when you catch a glimpse of a tampon in her purse. And when your friends casually discuss their future dream of husbands and children, your heart will fill with despair. Listening to girls discuss their sexual experiences, you’ll be left wondering if you will ever have that typical human experience.
Yes, your idea of beauty is about to shift.


You will look at all the girls around you and think of their beauty not in how
they look, but in how they are all gloriously normal. A normal female experience will translate directly back as beauty in your mind. And a normal female experience is something you will never have. I can see you again, standing in front of the mirror.  You are no longer looking at your hair, but deeper inside yourself.  I can see in your eyes, that in the instant you received your MRKH diagnosis you feel that beauty is something you will never obtain. 

That you are unfit and unworthy of love. 

That while you may look pretty on the outside, inside you are wretched and broken.  

I wish I was there with you now, to hold your hand, and tell you that
everything you are thinking of beauty and femininity is a lie.
You will run.
You will hide.
You will do your best to conceal the negative emotions that run through your

head, and how it makes you view yourself in a negative light.
You will attempt to find ways to forget.
You will become destructive, angry, and lost.
And after all that, you will rise up.

You will spread your wings and fly.


From the ashes of the angry fire that burned inside you will arise a strong,independent woman.  A woman who has learned to see beauty not in appearance, but in heart.  The jealousy that once clouded your vision will be replaced with an attitude of pure acceptance.  That feeling of unworthiness will be replaced by a feeling of self-love.  And yes, you will feel beautiful.


The sad little girl that once hid everything that made her unique will one day
shout it out for the world to hear. Your future will hold very little shame, resentment, or anger. The very things that cloud your mind now. Your future is bright, and continuing to get brighter. You will even learn to cherish these dark days and dark emotions you’re
beginning to experience, because without them you wouldn’t feel so passionate
about helping others, and compassionate to their plight. Know this: the one thing that you couldn’t speak of without tearing up will be the very thing that you stand confidently in front of hundreds of people and claim.


For now, know that you have always been beautiful.  Nothing that has happened or will happen will diminish the beauty of your most important possession: your soul.


...... With Love,


​Your sister, Kristen

United States 

​​




​​​​​





​Dear My Sister,

​It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes…….

Not everyone with MRKH is affected in exactly the same way.  I am now 46 years old and until June of 2014, I did not know I was 1  in 5000, I thought I was THE only one. 


I will start from the beginning. As a child, when I was about seven, I had to have a physical exam. One of the results of the lab work, showed too much protein in my urine, which is a sign of kidney failure. I was admitted into the hospital for further testing. I remember one test, even for a seven year old was very embarrassing, they catheterized me and 
filled my bladder with saline solution. The doctor told me to let him know when my bladder felt full, then he told me to hold it as long as I could (I think they must have been getting their equipment ready). Then he said “okay”, and at that point I remember trying to get up to go to the bathroom. 
Immediately, I heard “NO, we want you to lay there and pee, so we can see what you are kidneys are doing”.

 

I remember peeing everywhere. I could hear it hitting the floor onto a  bedpan they had under the table. I also remember getting pee on my night gown and as a consequence, I had to collect urine every year for them to test it. I always did and still do have too much protein in my urine and my keratin clearance is not the best. My nephrologists says I have stage 2/3 kidney disease.That is all they found when I was 7, kidney problems. It was when I was thirteen or fourteen, I started having stomach aches along with a low grade fever. During the school year when I was not feeling well, the nurse would take my temperature, if it was at all above 99 she would call my mom (it was usually higher than 99 but lower than 101). When mom would come pick me up because of my ‘kidney thing’, she would

take me to the doctor, who often replied, “I can’t find anything wrong with this
child.” I think my mom and dad thought I was trying to get out of something at school, or on the farm. This went on until I was fifteen or so.


I twisted my knee and the doctor thought I had torn the cartilage, so I had outpatient surgery. After the surgery, the anaesthesiologist told my mom to keep an eye on me for the next twenty-four to forty-eight hours. I think it was three or four days later I had one of my stomach aches (by this time, they were getting worse, I would be doubled over in bed for about two days), so my mom wrote it on the calendar and called the doctor the next day. 

 

I am not sure why no one noticed the short time between visits before, but by my next stomach ache; mom looked back at the calendar. My next physical was just a couple of weeks away so mom waited until then to question the doctor. She told him I had not yet started my period, and that she had started around the age thirteen and wondered if that could have anything to do with my stomach aches. The doctor said “well, let’s wait until she is 16 to do a pelvic exam”, (it was only a couple of months or so before my sixteenth birthday). So, next came the pelvic exam by my family doctor. I will never forget that day.

 

I got undressed and put on the dreaded gown, then doctor and nurse came in, they let my mom stay. The doctor asked the nurse for forceps, and then I remember he asked for the small forceps, and then I heard him say “hell, get me a Q-tip.” Then he jumped up off the stool and left the room, as if his shoes were on fire.


Mom and I looked at each other but, before we could say anything he came back in as quickly as he had left carrying a large medical book. He opened the book and showed my mom something and said it was an imperforate hymen and that it would be a simple 'X marks the spot' but that he wanted to put me in the hospital to do the surgery so he could ‘put me out’, so I would not be so embarrassed.


I remember it was a Saturday in April; I was supposed to be going on a hiking trip with my Girl Scout troop that weekend and was very disappointed that I did not get to go. The surgery was supposed to be a fifteen minute surgery, which turned into two hours. Mom said that no one came out to tell her anything and that she was getting very worried. 

 

From what I understand, after the doctor indicated where “X marks the spot” , there was no opening behind it, therefore, he called a gynaecologist in I heard “off the lake”, his holiday spot. So the GYN came in and between both doctors, decided I had  adhesions in my vagina, so they went cutting up through what they thought were the adhesions. I stayed in the hospital for a couple of days and they sent me home with some burn cream they wanted me to put in what they thought was my vagina to keep it from growing back together. They
told my mom to take me to a female oncologist about six hours away; he was closest one to where we were and also while I was there, would see my kidney specialist.


We went to Little Rock and met with Dr. Barclay who informed us that he did not think that I had had a vagina, and that my uterus was partially formed. Dr Barclay explained that I had been having my periods and the blood which was travelling up my fallopian tubes was now sitting in my stomach cavity until my body could reabsorb it, which explains all those years of agony and stomach pains.

 

We scheduled surgery for about a month out, because I wanted to go to Girl Scout camp for the summer and I think I remember Dr Barclay saying something about how own vacation.

After camp I had my partially formed uterus taken out. I was still 16 and it was kind of 
embarrassing. I remember coming into the Hospital and going to my room, which I shared with an older woman. As I walked in, she asked what was wrong with me; that I looked perfectly healthy. My mom went on to explain to her that I would not be so chipper the next morning as I was having my (partially formed) uterus taken out and why I had been admitted in the first place. I was in the hospital about a week, I think. 
I also saw Dr. Hughes whilst in Little rock, he was a kidney specialist. I remember he said I had one kidney which was the size of a baby’s kidney and had some scar tissue, but it still functioned, just leaked

protein.


When I went back for a check-up about six weeks later, we discussed the operation to have my vagina fixed. I thought I was a freak of nature, that I was the only one in the world that had this condition, and I wanted to "be fixed” as soon as possible. 

 

The doctor explained to my mom he wanted to wait until I was old enough and responsible enough (about 21) because it takes a lot of work and discipline to keep up with the after surgery routine. I went back to school afraid someone might find out that I was different, in my mind ‘a freak’. I felt very alone, and that not even my mom could understand how I felt… I would never have children. I had the vaginal reconstruction surgery when I was about 21.

 

They took a piece of skin off the back of my right leg, put it around a form, placed it in the opening that was made and sewed everything together, and I mean everything. I had a tube coming out of my skin just above the pelvic bone for my catheter, I am guessing so I would not get urine on the open wounds and cause infection. 

 

After the surgery, the doctor gave me an egg shaped form with a small straw like opening on one end and just a small hole on the other. I was to coat the form with a cream he gave me and push it up into the newly formed vagina and leave  it there only taking it out long enough to wash and rinse it then recoat it with the cream, once in the morning and once at night… every day for about 6 months. Then I went back to see the doctor and he gave me a very hard plastic dildo type form that I was to coat with cream push and hold in my
vagina for I believe it was 15 minutes every morning and night for another 6 months. The doctor mentioned once that he saw a few girls a year with this ‘defect’.


After surgery, I went on with my life thinking that I was almost the only one that had this problem, there was no one to talk to, and not really a diagnosis. Then June of 2014 I switched doctors again, and this doctor was very different. I had a medical history appointment, all he wanted to do during that first appointment was find out about my medical history… and boy did he ever… he wanted to see me back in 3 months, so when I came back for my next visit he asked if anyone had ever mentioned Mayer-Rokitansky-Küster-Hauser…to which I replied, “Uh, no, why?”. He said, “I believe that is what you have consistent with the female abnormalities that you present with. This is something I briefly studied in medical school. After your first visit, I went and researched it. I believe

you have MRKH”.

 

Wow.

 

Why hadn’t anyone ever told me ‘it’ had a name? I asked a few questions after which, he went onto to say there are a number of support groups online and there are other women who have MRKH, that you can chat with… my little pea brain was going 100 miles an hour…. I’m not alone? I am not a freak? Others like me? I am thankful for my new doctor as knowing is half the battle. There was such a weight lifted off my shoulders that I had been carrying alone and now I have others to help me shoulder that weight…. I only wish it hadn’t taken 30 years to find out there were others… I am so glad for the girls/women of today that have these resources to help them cope…if I had known, if there had been support groups or if someone had even suggested to my mom that I might need counselling, I would have probably been more self-confident, I might have not had such a low self esteem… 

but none of that matters now, the past cannot be changed.

 

I don’t want anyone else to go through the same thing I went through. I want all 
girls and women that have MRKH to know they are not alone and that there are 
many of us and we know what they are going through. If all they need is someone 
to talk to that will understand, like really understand.


...... With Love,


Your Sister

Anonymous









​Dear My Sister,

​It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes……..

I am a 43 year old Melbourne woman and like most of us, I was born with MRKH; diagnosed
at 17 when my period didn't come. My diagnosis however did not have a name back
then, labelled “an unusual case”, “never seen before” said my gynaecologist. As a teenage girl that translated immediately into 'freak'. From the very beginning I withdrew into myself and fought every suggestion that I was different. My mum was forbidden to talk about it out loud and I lived in fear of people finding out about me. My father had died of cancer about 6 months before so it was easy for my mum to accept and feed my denial because the grief of the loss of him was enough in itself. The immediate response from the medical experts that poked and prodded me, was to 'fix' my vagina because it was critical that I be able to at least have a normal sex life.


Becoming sexually intrigued commenced slightly earlier before finding out about ‘my problem’,and what I now know is, that this was a trigger for a lifetime of thinking that I was not normal and sex with me would be unsatisfying. This became my focus and not being able to have children faded into oblivion. It didn't help that this was also the focus for the experts around me. No one talked to me about not being able to have children; it was all about ‘the sex’.


What followed was 'ground breaking surgery' by a medical facility fascinated by my case. I was only the third person to have this new procedure. However, no-one thought that we three young women might actually benefit from meeting one and other. By chance, I only found out that there were two other women during a consultation by the surgeon and my mother in an attempt to convince me that having my case written in a medical journal was “very important” and “okay” because my name would not be revealed. I was mortified; keeping my secret took all my energy and now they wanted to talk about me in a magazine. That decision was not legally mine and my lack of ability to talk about what was happening meant that I was not able to voice my deep objections.

My fears of being found out were constant and all consuming. I went to every effort to look like the 'easy' girl amongst my peers. I would pick up guys in bars and then have to fight off their sexual advances just to keep up the guise that I was having great sex. I was caught in a vicious cycle of wanting to appear sexually active in order to actually keep the guys I was genuinely interested in around, thinking they would run a mile if they knew I was different. I
became a perfectionist in every other aspect of my life, keeping the external things in control, a high achiever and the appearance of a strong, capable and independent woman, again to affirm that there was nothing wrong with me. A love for alcohol developed as it kept me buoyant and happy and became my true friend, completely dulling my dark thoughts.


When I was twenty I did attract a man I was genuinely interested in and things developed quickly on the emotional front, which allowed for the physical side to go at just the right pace. I would like to say that after twenty years of marriage to him my story ends happily at that point, but it doesn't. 


At 43 years of age I still carry the same demons that fed me from the beginning. I continue to carry in me the thinking that I am a freak and not normal. I have spent a lifetime of hiding my secret with the fear that people around me would judge and pity me. I continue to appear to be a strong, capable and an independent woman; still reliant on alcohol to free me from the deeper feelings I carry. I have never had honest and open conversations about having MRKH to those closest to me, instead I remain completely alone in my struggle. The condition had always internally defined me and who I am.


Last year, however, I finally took the steps to try and resolve this inner hatred. This is why I can write this letter today. Through the support of a psychologist I have now begun to voice my thoughts out loud. It has been a hard and arduous journey. I have tested little snippets of information to close family and friends and have finally shared my entire story with my husband. I am trying to learn to receive comfort and sympathy as tools of support and have
been actively trying to seek this for the first time in my life. But it is hard to turn a lifetime of wanting no empathy, because it reaffirms the notion that there is something wrong with me, to a means of healing the hatred of myself. I continue to struggle with this. I don't know how to allow others to feel sorry for me without it reinforcing my feelings of being different. Similarly, I don't know how to retrain my inner voice to soothe and comfort me without this adding to the emphasis that there is something wrong with me. It seems the very things I need most to heal are the same things that keep me from healing. 


As I do slowly move forward, however, I now know that the real key to learning how to
nurture and love myself comes from other women with MRKH. Reading about their stories and connecting with them in real life has been a turning point in the mending of my damaged self. When I see other women with MRKH and talk with them, I don't see 'freak', I don't see 'different'. Instead, I see ‘normal’ women carrying large hurts and I want to care, console and comfort them. If I can naturally do this for others, then surely I can learn to do this for me.


If I could give young women newly diagnosed with MRKH, one big piece of advice I would say seek support; make contact with other women, talk to trusted friends and family and don't leave it too long or the healing will be harder. Be aware of negative ‘self-talk’ and always, always remember - it is not your fault, you are not different, you are not a 'freak' and you need to love yourself from the inside out.


​........With Love,

Your sister, Jodie


​Melbourne,43








​Dear My Sister,

It has taken me a while to get here, but I am now ready to share with you what has
been my story. I hope your journey is not too painful, but with my words you may
find some comfort. Here goes……..


Wow, where to start. I could probably write about ten pages on my journey, so i think i should limit myself mainly to the attitude i adopted to cope with life's challenges with MRKH.


I am 46 years old and like many others was diagnosed at age 17. I had the usual experience of using dialators which only worked to a certain point, and then at age 22 had surgery where a skin graft was  taken from my leg to create the rest of my vagina. I was born with no uterus at all just tissue floating around that was the start of fallopian tubes that never formed. I have 2 functioning ovaries but one is in a bit of a weird place.


If I had to tell my teenage self what to expect it would be to go with the flow and not think that you are less of a woman than anyone else, and that you don't need to prove that to anyone especially yourself. MRKH affected the decisions I made throughout my life but in the most part they were of a positive nature. 


I married a man who already had two children and thoroughly enjoyed being a stepmother. I had a few foster children over the years. I had a two year old foster daughter who i cared for for two years, and even though it was heartbreaking when she went back to her parents I still view the experience as the most important thing I've ever done in my life. She came to me as a neglected child and left as a confident 4 yr old well ahead of her peers. I am grateful to MRKH for that as I know none of those choices would have happened if I wasn't proactively seeking out what wasn't going to come to me naturally.


My advice to young people newly diagnosed is to never allow yourself to be a victim of it just find other ways of getting what you want. There are children everywhere that you can help and become an inspiration to, why is being a mother the be all and end all to everything, that's society telling you that. I am a primary school teacher and even though i have no biological children I am around children everyday. I have adult stepchildren and foster children who are just as important to me as biological children. 


I know people that are living their life in misery because they are unable to get pregnant. I believe you can only fight for that for so long before you need to think maybe the universe has a different plan for me. Maybe I can experience what I need a different way. 


The most difficult part of it all for me was at 17 being ready to have relationships and knowing that i was different than everyone else. At the start of every relationship I was freaked out about having sex the first time and whether I needed to explain anything or not, but the truth of it is that I had good sexual relationships even before and after my operation. 


I was married for sixteen years and we separated four years ago. As soon as we separated I went into panic mode and all those fears about sex came back like I was 17 again as I knew I would be back out there with new people feeling like i was different than everyone else. That's what I would say about the realities and truths of the situation is that you may think that you have it all worked out but then sometimes a spanner gets thrown in the works. My reaction was to just go out there and  get over it thinking that I wasn't allowing myself to be a victim of it. I spent a year sleeping with a lot of people partly because i was very hurt over my marriage breakup and partly proving that I wasn't a victim of my condition. I don't regret it because it got me through it, but in reality i was doing the opposite i was making myself a victim of it.                 
The reality of it is that you carry it with you throughout your life and sometimes it influences you in a positive way and other times in a negative way. For me I make the most of what I have and look on the positive side of it all. I've never had to have periods, never had to bother with birth control, and I knew straight away the score. I didn't spend years thinking I would have a baby and then find out I couldn't. There are thousands of genetic conditions that are far worse than what I was handed out. I believe that everything happens for a reason and i'm very happy with how my life has gone so far. 


I have only just found this website. I have never met anyone with MRKH so I hope to one day. In the meantime it's great to read about other people's experiences.


... With Love, 


Your Sister,      
The  Crazy Gemini    

Aged 36, Sydney 

                







​Dear My Sister,


​It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes…….


Talking about your self is never easy, however writing it is a little easier .

I have a little crazy story about my journey finding out I am a special person with MRKH. Back in Ireland at the age of 16 I was told after some investigation that I would never be able to have a baby myself I think I secretly already knew considering I hadn't started my period. All the girls in the class spoke about them and me pretending I felt and went through the same as all of them as time went by I that horrible feeling until that day in the hospital where I had an camera inserted through my belly button, later on in the evening when I had come round they told me I was born without a WOMB they never mentioned MRKH and pretty much left me on my merry way.

A number of years later I mean (fifteen years) and in a different and more support environment, after a number of failed several relationships, I stepped up and said to myself for me to ever lead a normal life-I need to do this for me! That's when after a few different meetings, I was referred to Rebecca Deans who told me about MRKH and it was how she explained it that made me feel 'weirdly excited'. Yes my heart sank, but It was the knowing I was not the only one and then she sent me on to the beautiful and wonderful Jennifer Morrissey who honestly for me, being away from home on the other side of the world, was my rock. Why you may ask? Well, I guess for fifteen years I had been running away from dealing with this and then when I did decide to deal with it, she not only made me feel relaxed, but she also talked everything through. Jennifer knew that my mother didn't know anything that I was going through and after a few meetings and chatting she had made me feel comfortable to tell my own mother (I hadn't told my own mother, as I guess the easiest think for me was to run).

I sometimes think us beautiful ladies with MRKH are kinda in advance. We have known that we couldn't carry our own child - yes,and its not necessarily how most of us would have planned our life but life would be pretty boring if we were all the same. I admit, I do find it hard at times and everyone will have their own little things that set them off but everyday is an exciting new step for a few different reasons. I am now learning to accept myself, and even though we haven't met yet and I hope we will some day, I have gained a lot of sisters through MRKH.

MRKH has been a learning curve for me, never run away from something look it right in the face and deal with it. There maybe some lumps and bumps along the way but that's where the support comes in FAMILY ... I should have asked my mother for help but from now on I know she is my 'Guardian Angel'- although she may not always be able to relate, she loves and cares for me and will support me no matter what and finally that MRKH can sometimes help you get that last cookie in the cookie jar just to make you feel special!!

Everyone is different and everyone will have a different area of MRKH that they will feel more affected by, that why its important as SISTERS that we stick together and support and help each other.

Love, hugs and Support...

Your Sister

Amy

Ireland, aged 31









​Dear My Sister,

​It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes……..

I am a 43 year old Melbourne woman and like most of us, I was born with MRKH; diagnosed
at 17 when my period didn't come. My diagnosis however did not have a name back
then, labelled “an unusual case”, “never seen before” said my gynaecologist. As a teenage girl that translated immediately into 'freak'. From the very beginning I withdrew into myself and fought every suggestion that I was different. My mum was forbidden to talk about it out loud and I lived in fear of people finding out about me. My father had died of cancer about 6 months before so it was easy for my mum to accept and feed my denial because the grief of the loss of him was enough in itself. The immediate response from the medical experts that poked and prodded me, was to 'fix' my vagina because it was critical that I be able to at least have a normal sex life.


Becoming sexually intrigued commenced slightly earlier before finding out about ‘my problem’,and what I now know is, that this was a trigger for a lifetime of thinking that I was not normal and sex with me would be unsatisfying. This became my focus and not being able to have children faded into oblivion. It didn't help that this was also the focus for the experts around me. No one talked to me about not being able to have children; it was all about ‘the sex’.


What followed was 'ground breaking surgery' by a medical facility fascinated by my case. I was only the third person to have this new procedure. However, no-one thought that we three young women might actually benefit from meeting one and other. By chance, I only found out that there were two other women during a consultation by the surgeon and my mother in an attempt to convince me that having my case written in a medical journal was “very important” and “okay” because my name would not be revealed. I was mortified; keeping my secret took all my energy and now they wanted to talk about me in a magazine. That decision was not legally mine and my lack of ability to talk about what was happening meant that I was not able to voice my deep objections.

My fears of being found out were constant and all consuming. I went to every effort to look like the 'easy' girl amongst my peers. I would pick up guys in bars and then have to fight off their sexual advances just to keep up the guise that I was having great sex. I was caught in a vicious cycle of wanting to appear sexually active in order to actually keep the guys I was genuinely interested in around, thinking they would run a mile if they knew I was different. I
became a perfectionist in every other aspect of my life, keeping the external things in control, a high achiever and the appearance of a strong, capable and independent woman, again to affirm that there was nothing wrong with me. A love for alcohol developed as it kept me buoyant and happy and became my true friend, completely dulling my dark thoughts.


When I was twenty I did attract a man I was genuinely interested in and things developed quickly on the emotional front, which allowed for the physical side to go at just the right pace. I would like to say that after twenty years of marriage to him my story ends happily at that point, but it doesn't. 


At 43 years of age I still carry the same demons that fed me from the beginning. I continue to carry in me the thinking that I am a freak and not normal. I have spent a lifetime of hiding my secret with the fear that people around me would judge and pity me. I continue to appear to be a strong, capable and an independent woman; still reliant on alcohol to free me from the deeper feelings I carry. I have never had honest and open conversations about having MRKH to those closest to me, instead I remain completely alone in my struggle. The condition had always internally defined me and who I am.


Last year, however, I finally took the steps to try and resolve this inner hatred. This is why I can write this letter today. Through the support of a psychologist I have now begun to voice my thoughts out loud. It has been a hard and arduous journey. I have tested little snippets of information to close family and friends and have finally shared my entire story with my husband. I am trying to learn to receive comfort and sympathy as tools of support and have
been actively trying to seek this for the first time in my life. But it is hard to turn a lifetime of wanting no empathy, because it reaffirms the notion that there is something wrong with me, to a means of healing the hatred of myself. I continue to struggle with this. I don't know how to allow others to feel sorry for me without it reinforcing my feelings of being different. Similarly, I don't know how to retrain my inner voice to soothe and comfort me without this adding to the emphasis that there is something wrong with me. It seems the very things I need most to heal are the same things that keep me from healing. 


As I do slowly move forward, however, I now know that the real key to learning how to
nurture and love myself comes from other women with MRKH. Reading about their stories and connecting with them in real life has been a turning point in the mending of my damaged self. When I see other women with MRKH and talk with them, I don't see 'freak', I don't see 'different'. Instead, I see ‘normal’ women carrying large hurts and I want to care, console and comfort them. If I can naturally do this for others, then surely I can learn to do this for me.


If I could give young women newly diagnosed with MRKH, one big piece of advice I would say seek support; make contact with other women, talk to trusted friends and family and don't leave it too long or the healing will be harder. Be aware of negative ‘self-talk’ and always, always remember - it is not your fault, you are not different, you are not a 'freak' and you need to love yourself from the inside out.


​........With Love,

Your sister, Jodie


​Melbourne,43








​Dear My Sister,

It has taken me a while to get here, but I am now ready to share with you what has
been my story. I hope your journey is not too painful, but with my words you may
find some comfort. Here goes……..


 I struggled a long time all alone with a condition that had no name and that no one else I knew ever had. It took me from age 17 to age 61 to find out the name of that condition. MRKH. Having a name helped.


I couldn't believe that just a name helped, but it did. And then I found a group! And talking to others who understood helped. And then I met a few sisters for a weekend and my life changed forever!!! I was not alone. I was not different anymore! We knew and hugged immediately. I will never forget that weekend. The laughter, the tears, the moments of knowing exactly what someone else was thinking, and the moments of knowing someone else knew exactly what you were feeling! With every opportunity to connect in person, I wish you all the same.


There is nothing quite like a MRKH sister. They don't cut you down, they don't whisper behind your back. They are there for you always. Make many sisters. They will always be there for you.



....With Love,

Your Sister Kay

Wisconsin, USA

Aged 68

sisters for love mrkh foundation







Dear My Sister ...


​It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes…….

What a difference a year makes! 

Its now officially 1 year since my "official" diagnosis. From the initial fear and embarrassment has come greater acceptance of myself and I feel like I am moving forward. I still find it difficult telling people and I'm not quite ready to shout it out to the world but i feel i have come a long way.  I have made some amazing connections with other women with mrkh and this has helped me the most. To know that I am not alone and to be accepted flaws and all has been the best part of my "journey".  

At 17 I was misdiagnosed. Its only as I near my forties that I have found out the name of my true condition. In one way I was saved from the angst in teenage hood, but in another the silence and misinformation was deafening. I always knew i couldn't have periods or children, naturally. I avoided these topics and shied away from relationships for fear of being different. My silence was my protection.  My diagnosis was my first real step to freedom from secrecy. 

I can't really put into words the relief  I have felt since my diagnosis. Meeting other women who each have there own stories has been amazing. I never realised how much I buried deep out of fear of rejection. Sharing stories, counselling and telling my close family and friends has been a new experience that i initially dreaded but find easier as time goes on.  I still struggle from time to time but can honestly say I have never felt more free to be who I am. 

This last year has helped me to realise I am different and that is ok. Instead of being scared I didn't fit societies expectations, I now feel more confident to be me. So, my advice for you is...

Don't be scared. 
Share and connect with others with MRKH.
Give yourself a break.
Live life boldly.
Be brave. 
Laugh love and smile whenever you can.

Your sister. xo
Tess, Melbourne



​​




Dear My Sister,

It has taken me a while to get here, but I am now ready to share with you what has
been my story. I hope your journey is not too painful, but with my words you may
find some comfort. Here goes……..


It's strange having that feeling you know something is wrong. Through doctors, more doctors and hospitals, finally a camera was put in my belly button & lower belly- as a result it was true, there was something wrong.

"You are not able to bear a child". "You will never have a period".

Being told at 16 is confusing. I don't want a child now, I'm too young. But being told you can't have something makes you want it more. It was like a whirlwind after that. I feel like my life completely changed. Growing up feeling like an alien or abnormal cause I was diagnosed with MRKH.

My poor mother told me the bad news as she wanted to rather than the doctors. I blamed her for years. She was the easiest to blame but I was so hurt. It's no ones fault but I couldn't understand how or why. I am a firm believer that everything happens for a reason but what reason to be diagnosed with this condition, this sadness?

Time is a great healer. You look back and those years look like a blur even though you remember every last detail. I put off going back to the hospital for years, never dilated as I couldn't deal with it. Time passed & I took the step of returning to my gynaecologist who in shock realised I was sexually active & didn't need any further work/ dilation. She encouraged me to look online about MRKH and share my story.

Fortunately after joining groups online & researching it more, I found out I'm not alone. It was so relieving. There is even ladies in Ireland with MRKH. It is so comforting to know that they understand, support and guide you as best they can. You are not alone, you are not an alien, you are amazing to be dealing with such a condition.

As I mentioned earlier, I believe everything happens for a reason and I always knew I would find my reason for having MRKH. I am currently engaged to a wonderful man who has two kids of his own. I believe fate brought us together and even though it's still early stages whether we go ahead and start the process if we want a child of our own, who knows. But I believe it has made me stronger as a person and helped me along my journey with MRKH.


.....With love,


Your Sister Katie, 

Ireland

Aged 24 




​​​​





​Dear My Sister,

​It has taken me a while to get here, but I am now ready to share with you some of what has been my story. I hope your journey is not too painful, but with my words you may find some comfort that you are not alone. Here goes…….


If I could share with you what I've learned my dear sister, I would like to take that opportunity right now. I'm imagining I am talking to my seventeen year old self. I'm now thirty nine years old. Oh darling, the places you will go, the things you will experience, don't fret, life does improve!
 
When I was seventeen, I knew I was different. But I didn't know how different. I just knew it was a bit strange to not have my period yet. I did visit the doctor at the Family Planning Centre. She tried to encourage me to seek further assistance, but I refused. At twenty years of age, I saw this doctor again, and she successfully got me to see a specialist. Oh god. The horror of that experience, I was not expecting to feel so alone. I didn't realise I should bring a support person. That would have helped. I was examined. Then I was put through a MRI exam, two ultrasounds, and I even asked the doctor if I was a boy. He was so kind and reassured me I wasn't, but to put my mind at ease, he ordered a chromosome test to prove it to me. I then had to have a laparoscopy. Then I had to wait for my results. In the mean time I partied it up (as usual!) and celebrated my twenty first birthday with lots of fun and enthusiasm! 
 
Then came the day of the appointment to get results from the specialist about my laparoscopy. I had to wait in a crowded waiting room in the public hospital with a gazillion other women and their screaming children. For HOURS. Then I saw the specialist. For less than ten minutes. He drew a diagram to explain my insides. Or lack thereof. One of my kidney is skewiff. One ovary is kind of not there. Uterine agenesis. No womb??? I was in shock. He said he'd write to the doctor who referred me to him. 
 
All that information didn't sink in...I made my way to the hospital public telephones. (Sister, this was pre mobile phones, 1996!). I phoned my dear best friend. I was crying, she said come over straight away, she said she would pay for the cab fare. I got to her place. We chatted in her bedroom. She said, "Can you get a womb transplant?" I said, "No, I don't think so". Little did we know that this procedure is being trialled overseas as I write this.
 
I wasn't referred to counselling. I believe this should have occurred. Thank goodness for my dear best friend. Otherwise I would have completely lost myself. I put my issue on the back burner for a few years. Then I eventually dealt with it. Sort of. Now, I've embraced it. But you see, dilation was not ever a requirement for me, because I was able to be intimate with a partner from the age of sixteen before I realised there was ever an issue. 
 
Yes, I've embraced it. I only found out six years ago that the term MRKH Syndrome exists...and then my world opened up. I searched the term on Facebook and thank god some brave sisters put it out there. Then I connected with my sisters across the globe. Social media is AWESOME. 
 
YES, the places you will go Bianca, the places you have been. You spent many months on and off since you were fifteen in hospitals for the other health condition you have had to deal with. Unrelated. But by far, dealing with MRKH has been the most rewarding, the people you get to meet, both via Facebook and in person. You even got to experience marriage, even though you got divorced (and you didn't divorce because of MRKH).

Life is pretty rich now, even if you are single. WOW! Life has improved. You no longer use the term "Freak" in your head. You don't bully yourself. You embrace yourself and your sisterhood. You are kinder to yourself. Supporting your self esteem is so important. And guess what, seventeen year old Bianca, at 39 you have been to Sydney twice for a support meeting for MRKH Syndrome. Organised by an extraordinary person, your fellow sister, Ally. And Jaqui now runs the meetings with Ally. And you have just booked flights to the third meeting. And you can't wait to see everyone! 
 
I don't want to overlook how difficult it has all been, yes, there are still some terribly sad days. But the good DEFINITELY outweigh the bad days. At 39 your contemporaries are having children, and some are up to their second lot of children. Pregnancies are hard to be around sometimes. But then when you hear a tantrum in a shopping centre by a toddler, you are reminded that you really are not that maternal after all!
 
Remember, if there's some final things I can leave you with, you are not a freak. You will hopefully embrace having a sisterhood that is across the globe and please, please remember, if you cannot open up to family or get the support you were wanting or expected from family, search for support from your 'bestie', or open up to a fellow Sister on Facebook. That's how I met Ally, we connected through Facebook, and I've met her in person. 
 
Finally,as our U.S. MRKH sisters would say, you are a "Warrior"!!
 
...... With Love,
 
Bianca Alexander
Your MRKH Sister
Aged 39 Years
Embrace








Dear My Sister,​​


It has taken me a while to get here, but I am now ready to share with you what has
been my story. I hope your journey is not too painful, but with my words you may
find some comfort. Here goes……..


To my 17 year old self. My wish for you would be to allow you even just a mere glance at the future, and an understanding that you will be okay. And the confidence to believe that I am right.

“You don’t need your own kids, you can always adopt!”, “You are so lucky you never get your period”, “Just think of all that money you’ll save not having children”, “Don’t worry, sex is overrated anyway!”... Those are just a handful of comments that I give you permission to screw up and backhand into the trash. Don’t take what people say to heart, for you cannot even begin to compare your journey with theirs. You are worlds apart, and that is okay.


“I myself am made entirely of flaws, stitched together with good intentions”


Instead, focus on the things that you want to achieve. Never settle. If you have a dream, go for it, because you are the only person that is in your way. Allow yourself bad days. They truly make you appreciate the good. And while you’re busy doing that, learn to love cliché phrases because the quotes on your Pinterest wall will comfort you more than you know. Talk to your friends, listen to your music and if you manage to muster up the energy that you desperately feel you lack, then go outside. Take a walk, you know I’m right. Don’t shut yourself away. As good as it feels to let it all out in the comfort of your own room, (which, by the way, dad is still angry you painted red...It does not come off easily!) you are only pushing people further and further away. Don’t worry about being a burden; people love you and want to help you.


“Because those who mind don’t matter, and those who matter don’t mind”


Told you, didn’t I. Appreciate the little things people do for you, and never forget any of them. Granted, you did pretty well at that. But don’t go over and above for everyone, it will only wear you down. You are important, and taking care of yourself is crucial. Start accepting MRKH as soon as you can. The friends you will make through having this condition are some of the best you will ever have. And, to deny yourself those extra few years of connection because you are still angry at the world, is a huge kick in the teeth. Take that leap of faith, google MRKH, tell someone about it, talk about it and start believing it doesn’t define you.


Hindsight is a wonderful thing, but so is life. And that, is inevitable. Don’t regret any of your decisions or choices, because guess what…YOU made it. And you are happy.


Oh, and go buy some champagne, you’re gonna need it.

 

.... With Love,


Your Sister, Kelly 


United Kingdom

Aged 22