“I have to pee.”
Not the most lady-like thing to say, I know. I was drowsy from anesthesia, and pumped full of liquids. Better for me to speak up then wet the operating table.
“We’ll put you back under and I’ll insert another catheter.” My nurse says, looking into my eyes. Her eyes are full of sadness. I sense she longs to tell me something, something I think I already know. Before I can say anything I’m knocked out.
When I was 16 I saw the Vagina Monologues. I’ll admit, I wanted to vomit. They were too intense, too detailed and about a topic I did not connect with. By 16 I feel that most women have made contact with their vaginas in one way or another. But not me, never a need. No tampons. No guys. Nothing.
Once the nausea subsided, I did feel a slight tingle of empowerment. Maybe it was time I made contact or at least took a look.
I got out a mirror. Awkwardly sat and decided it was time to spread. It didn’t look so pretty. Maybe poking at it would be a better route to go. Fingers lingered but didn’t seem to go anywhere. I might have missed something. Trying to recall the diagram that came with my sister’s box of tampons I ran my fingers up and down one more time. There’s supposed to be hole where something is suppose to go in, right? I panic a bit. Where is it?! I have a mini freak out and immediately want to jump up, run up the stairs and yell to my mom, “I can’t find my vagina!!”
I decide that’s a bad plan. I don’t want to be the one that goes to the doctor to find their vagina and have the doctors laugh at me because I’m the girl that couldn’t find her freaking vagina! I’ll just study the diagrams some more. They’re like a map, right? I just need to follow the directions. I probably turned left when I should have gone right.
By the time I’m 18 I ask my mom if I should go to the doctor, because unlike all my friends, I still hadn’t gotten my period. She told me not to worry and that when I was born the doctors said that I would likely “develop” that later in life anyway.
I must be the tightest woman on the face of the planet! It makes sense I reassured myself. I mean, I’ve never had my period, so nothing has ever even had the chance to stretch out my vagina. Yeah, that’s it!
For years I try to come up with an explanation for why I don’t get my period. I felt like I was 13 again, literally reading, “Are you there God, It’s me Margaret,” wanting to be like other girls, like my peers.
However during this last summer those thoughts kept creeping back… I mean unless my vagina was really off that diagram things just did not add up!
When I see the look in that nurses eye I wanted to cry. I felt as if she wanted to tell me, “Sweetie, did you know you don’t have a vagina?”
Two and half months later I finally took myself to the doctor.
“You have Mayer-Rokitansky-Kuster-Hauser syndrome. You have no vagina. There are three surgical procedures used to create one…(looooong explanation, “EW! Gross!”) but I recommend dilation and creating one yourself by stretching your vaginal tissue back.”
She pulls out a box and instantly turns into Vanna White as she shows me the dilators-long, hard plastic rods, all getting larger in diameter…she shows me 1, 2, 3 and the 4. I blush, giggle and begin snorting with laughter, unable to control myself. She slides #4 back into its box. “I’ll hold on to it until you’re ready.”
At least she had a sympathetic look and tears in her eyes when she uttered, “it’s not fair but I believe that somewhere out there, there is an unborn child that is yours.”
She offers to get out the mirror, to show me what I have. I said no. I wasn’t ready. I can’t help but be ashamed at times. Ashamed to look into that mirror. I looked once. I saw nothing. I did nothing. I was scared. Scared of being laughed at? Scared of the truth?
She brings out the mirror anyway. Surprises me. I looked, but I wasn’t ready to reflect.
She reviews the ultra sound with me and informs me that an MRI would be useful, that way we can tell exactly what I have and where everything is. “I know the ultra sound only showed one ovary, but I believe you have two.”
“Yes. I could do a rectal exam and we could find out now.”
“But the MRI would tell us too, right?”
“Yeah…that’s great you have that skill, but I’ll wait till the MRI. Thanks.”
It’s been a year now since I’ve found out about this whole MRKH business. Who can say at 26, “last year I didn’t have a vagina?”
Oh, that’s right. I can.
You’d think after a year, after successfully having sex, if that’s something you can even actually measure, with two different people I’d be sitting pretty with my brand-new, freshly made, hand-crafted vagina.
But it’s awkward still. It is awkward having her watch me push the dilator inside of myself, seeing how far it will go into my newly created “playful pouch.” It’s even awkward to think that this can actually be created, and to think, wait…the first person to ever technically finger me was a woman!
As I left my last appointment with her I sighed. I should have felt happy. She said I’ve made good progress. I’m at 7cm and most vaginas are 8-12cm in length. She said my vaginal entrance looked normal, that, and I quote, “You can trust me; I’m a gynecologist.” Instead I started to cry. Hot tears rolled down my cheeks. I wiped them away. It was just another reminder of my defects. I felt lonely. Alone.
United States, 27
I was 16 years old when my mother took me to a doctor for the first time because I never got my period. I went through blood tests, ultra sound and my first pelvic exam. I was mortified and concerned about the whole process, and didn't know how much my life was going to be affected by four little letters - MRHK. I think I only heard snips of the conversation while my mom talked to the doctor. No uterus... No Fallopian tubes... Dimple... Can't carry my own children. I was in a state of shock! I was handed a dilator and a gentle smile and that was it. I didn't talk on the way home and I retreated into my room. I felt like a freak! And so alone! I couldn't deal with the dilator and learned to lie real well to my peers when they talked about their periods or sex. I avoided getting close to guys and when they got to close I would figuratively run. I tried for the most part to ignore my disorder and just go on living my life.
Years later in my 20's I began to remember childhood sexual abuse that I had experienced and my whole world went into turmoil again. I turned to alcohol to numb my pain. (I was never an alcoholic but I sure started to party and drink!)
A few years later I succumbed to my pain and went and talked with a counselor and finally began to deal with everything. Then one day to make a long story short an opportunity came and I packed up my stuff and moved to California. I think I felt that I could just start over.
I also realized around this time that my sexual interest didn't lie with men. Sometimes I wondered if it was because of MRKH and then I figured out it was just who I was. I met a wonderful woman who I trusted and told my story to. She was kind and we built a relationship together. We both wanted to have children and we came to the conclusion for us the best option was foster-adoption.
Well to make a long story short we are now a family of four with the additions of our daughter and few years later our son. I have still had my up and down days with MRKH and felt extremely alone with my pain. However, one day, I recently found this amazing Facebook site full of supportive and amazing woman like myself that I could finally talk openly with and finally I have begun to dilate!
Where to begin my story… I think I was 13 at the time, my stomach was in pain and I asked to go see the nurse. After sitting there for a while, the nurse came in and asked usual questions. What's wrong, where does it hurt? I told her, my stomach and pointed to the location below my belly button on the left side. The nurse smile and simply told me, that means you're going to get your period soon. Five years pass and nothing happened. Now I am 18 and there was no period. I approached my mom one night and asked her. "Mom, I am 18 now, when do you think my period will come?" my mother said "soon honey," with a worried face.
After months of waiting, we finally set an appointment with a male gynecologist. My mom was with me and he asked me to sit on the exam bed with my legs open. I was so uncomfortable. Then with this device, he began his exams. He said "that’s strange, there’s a wall." After a few more times of uncomfortable poking he was finished. He turn to my mother and said he wasn't sure what this syndrome is called. He knows that there are women out there like me but he doesn't know what it is. He continued telling my mom that I will not be able to have a child and one day when I decide to get married, I should go get surgery to have that wall removed in order for me to have sex. My mom looked at me to see how I felt. I was in complete shock and wasn't sure of what to feel.
I continue living my left normally. To me, not having a period is normal.
Three years later I met a doctor friend who introduced me to a specialist. He did an exam and diagnosed me with MRKH.
From then on I started my research of women just like me. I met a very special friend. She became like a sister. We met up and talked on the phone when we need each other. She has recently had a surrogate mother and had a boy.
As for myself, after a few failed relationships, I finally found a man that except me for ME. He accepted that I am not able to have his kids. We just got married on July 20, 2012 with my MRKH sister as my bridesmaid. Strangely, I am happy. There are some days I get sad and wonder how my children will be like. But I learn to accept that this is who I am and I am normal.
United States, 25
It is time. My name is Mary and I was born without a womb. Since I was eleven, for over 18 years, I have lived in shame, hiding beneath this terrible dark secret.
I was always a quiet, shy child. Scared of confrontation. Afraid of my own shadow. My best talent was running away from things that scared me, hiding in tiny dark corners. I can't remember ever believing that I was normal; I think I always knew there was something wrong with my body even before I entered puberty and my body stubbornly remained rather flat chested and petite. When I was eleven I felt a sharp pain down below and I found a tiny spot of blood in my knickers, for the first and only time. I thought that was it, that my body was becoming a woman's. How wrong I was.
I always knew how the body worked, about periods, sex and where babies came from. When I was a child my Mother had a book that taught us everything we needed to know: The Facts of Life pop-up book no less, complete with pop-up wombs and penises! From this book I knew what my body parts 'should' look like and knew how my body 'should' work. I grew up around babies and pregnant women, believing that one day I too would be pregnant and have lots of babies. I was the second child of five. My Mother taught Ante-Natal classed so evenings in our house during my entire childhood were spent full of heavily pregnant women learning to breathe. These women would come over weeks later and show off their tiny little babies and we would hold them. All this exposure to pregnancy and babies lead my sister to want to be a doctor, and me to want to be a Mother.
When I saw that spot I thought that was it, that I was a woman, and early too! My mum showed me where she kept the towels and that night I slept in my first sanitary towel. The next day nothing else happened. Nor the day after that. Nor the month after that. My mum asked me about it and I told her it had never happened again. We put it down to a one off, but assumed that it was a sign that my body was gearing up for my periods to start soon. To this day I have no idea what that 'spotting' was.
I entered adolescence and I was aware of my burgeoning sexuality as well as the fact that some of my friends were beginning to 'start'. I begun to suspect something wasn't right and so I began to explore my body, down there. When I was about 13 I used a hand mirror to look below and straight away I knew that it didn't look like what I'd seen in that book. I hid the mirror and tried to forget. I was ashamed. I felt guilty for looking, as a Catholic surely bodily exploration like that was completely wrong?! I was ashamed that I'd looked and ashamed because I knew, I just knew, that my period was not going to turn up on it's own. From what I had seen down there I thought that I was somehow blocked up, that one day they might be able to 'open me up' and make me normal. Watching a TV hospital drama that had an episode featuring a girl with an imperforate hymen only reinforced my hope that this was what was wrong with me.
When we were 14 my best friend told me that she had started her period. Immediately I said that I had too, coincidentally 'just a few weeks before'. It is this lie which clarified for me that deep down I always knew it was never coming. Had I thought my period would be showing up sooner or later why bother lying at only 14?
By the time I was 16 I was actively avoiding the period questions. If my mother asked me about it I would blush, whisper "no" and run away before she could suggest anything such as a Doctor's appointment. By that point I was dating my first proper boyfriend and I would wear a towel every now and then to keep up the presence of being a 'normal' girl, pretending I had a period and thus I was a 'no-go' zone. I didn't want him to ask me questions too.
When I was 18 my mother finally cornered me and asked me again whether I had started my period yet. I was so ashamed I immediately fainted. The next day she finally got me to concede that I should see a Doctor.
When the day of my Consultant appointment arrived I was so nervous I couldn't eat. Weeks earlier I had had an abdominal ultrasound and, though I couldn't see anything on the screen, the technicians faces had said it all. She said "Well there's your right ovary, there's your left ovary...." and then she stopped, that was all she said. I stupidly had gone alone. A Doctor came in and looked long and hard. But they never said anything to me. All this had confirmed in my head that I was not 'quite right' inside. As I waited to see the Consultant with my mother in the waiting room I was pretty sure that I had a blocked hymen and a misshapen or small womb.
The physical exams were uncomfortable, humiliating exams that no woman so young should have to go through. Mr Smith checked my breast development which he deemed normal, before moving onto the internal exam. There was a female medical student in with us. It was all over in a matter of seconds. He prodded me but didn't really say anything. It really hurt and felt like I was being stabbed with a rounded, blunt instrument. I knew then that that part of my body was also wrong. He checked my behind too which was even more humiliating than the first exam. And then it was over. He told me to get dressed and he would see me next door where my mother was waiting.
I still remember what I was wearing that awful day: grey jean trousers and a blue woollen jumper that was about to become soaked through with my tears. I was shaking as I dressed. Even though Mr Smith had been courteous, and as gentle as he was able to be, I felt physically violated and sick. I sat down and he started to speak. I struggle now to remember the words, what he said and when he said them, because in those few minutes my entire world fell apart. All that I wanted, all that my future promised, all that I thought my body was, all that I knew was taken away from me in that instant.
I actually felt my heart break.
I felt all the blood leave my head and an all too familiar dizziness came over me. But I didn't faint. Not this time. This time my head, and heart, had to finally hear those words. It was time to know the truth. No more hiding, no more running. "You will never be able to carry a baby." His words resounding in my head, round and round.
His words continued to come. He asked my mother to leave the room and then talked for what seemed like hours about dilation, about 'stretching' me, even though I had a little depth already due to the 'work' I had already put in with my boyfriend. He told me that technically I was classed as 'sexually dysfunctional' but that if I put enough effort into my dilation I could still have a perfectly 'functional' sex life in the future. All these words about a sex life and a 'functional vagina' went over my head; that was the Doctor's focus, making my body 'functional'. But functional to me was pointless if that 'function' would never be able to lead me to my ultimate goal of having a child. That was all I could focus on: I had no womb. I would never, ever be able to feel normal again.
I left the room and joined my Mum in the corridor. Then I felt as though I was going to faint. My Mum said I was a sickly green as I staggered out. A Nurse saw me, I must have looked as devastated as I felt, and she took us into the Nurse's staff room where I broke down completely. I have no idea how long we sat there, both crying until my clothes were soaked through.
I felt as though someone had stolen my womb from me along with my future, the entire life, that I wanted so badly. For 18 years I just believed that my body was a 'late bloomer', I was after all very skinny and flat chested. Yes my womb may not have actually been there my whole life but it felt like it was, I believed it was. I might as well have woken up in a hospital bed and been told they had removed all my reproductive organs after an accident.
Before that day, just like everyone else in the world, I had no idea that being born without a uterus and with only a partially formed vagina was even possible. Thoughts started to form in my head that day that I was a freak, a mutant, a hideous accident of nature. I wrote endlessly in my diary and called myself a "monster, mutated, half a woman". Much later I learned that around 1 in 5000 girls are born with MRKH but that first Doctor told me it was 1 in a million. I didn't want to be one in a million. Until very recently, whether I was 1 in 5000 or 1 in a million it didn't matter, I felt so alone, so isolated and rejected. On the outside of all normality.
I still struggle with feelings of inadequacy, feelings of not being a 'real woman'. Since my diagnosis I have never made a new close female friend. The few girl friends I do have I knew before and were there for me when I was diagnosed; I have never explained it fully to them but I also have never had to deal with tampon requests or questions on contraception as they know the basics: I can't have babies. On the whole I struggle in relationships with women as deep down I feel they, as much as they try, can never truly know me or understand me. For years after my diagnosis I pushed it deep inside of me, repressed my grief and never talked to anyone. I believe that had I tried to talk back then, had I not repressed my grief, the feelings that my babies had died and that I had suffered such a loss, that I would be stronger than I am today. I still struggle with who and what I am but I try to take each day at a time. I am trying, finally, to really tell my friends about MRKH, to be more open to try and finally feel like I am not living under a cloud of shame.
I want to help other girls, I want to be that someone who they can talk to when they are feeling that immediate grief and shame, to be a friend to those who need it most. I am still rebuilding my own heart and self esteem and I know how impossible it can be. Almost eleven years have passed since my diagnosis. In that time I have been through many a dark day including a cheating husband and a horrible divorce but MRKH is still the hardest thing for me to live with.
Now I am re-married to an absolute hero of a man who listens to me and comforts me as everyone around me has baby after baby. He loves me for exactly who and what I am. We are at the very beginning of a journey, hopefully, to a baby through gestational surrogacy and I recently was thrilled to learn that I ovulate just as any 'normal' girl! He is my strength and my comfort. Unlike me he does't look at me and see MRKH, he sees me and everything that I am.
I cannot say that I am 'over' MRKH or that I have even really accepted it yet but I know that I would not be the person I am, or have the wonderful husband that I do without MRKH. I have a depth of compassion and understanding for others who live on the outside of normality, and I will never take my husband, or any child I may have or adopt, for granted. Finally I have hope, that my husband and I will live a deeply fulfilled and wonderful life together, either with or without children, that one day I will learn to accept my body, and that one day too I might help in any small way even just one girl born with MRKH .
United Kingdom, 29
Hi. I am Purbi from India. I am 29 years old. I am a woman with MRKH Syndrome. I am here to share my story, my experiences with all of you.
I was born in 1983 in a small city of North India. When I was 12 years old, one of my schoolmates got her periods. That day she was crying but next day she was looking very happy. From that day, I had been waiting for my period. As days passed, I never got my period. When I became 16, my elder sisters asked my mom to take me to the doctor as they were worried about me. Then my mom took me to a gynecologist. She gave me some medicines to have for 10 days hoping to begin my period. But after 10 days nothing happened. Then she again took me to the doctor. This time she asked for an ultra sound. I had my ultra sound and my mom showed the report to doctor. That very evening, all my family members were sitting at one place and I found their mood very different. Then my father told me that I had an ectopic kidney. I got little worried then they told me not to worry as it wouldn't affect my health at all. Except this they did not tell me anything. Deep within the corner of my mind, I felt something was wrong. On the other hand, I had been waiting for my period. I wanted to discuss with my family but hesitant to do that. At the age of 19, when my period didn't happen, I got anxious and I started asking my mom to take me to the doctor. My mom kept ignoring that. I felt very bad that nobody cared for me. One day when I shouted at my mom that she didn't care for me, then my sister shouted back to me and told that I wouldn't have any period as I don’t have a uterus. At the moment my heart tore to pieces and I started crying like hell. My mother consoled me. But I got to know that it was difficult to live a normal life, difficult to get married and the most importantly the baby for which I have dreamed about since childhood was no more possible. But still there was something that I did not know…
From that very day, the thought of absent uterus, absent period and unable to have baby started revolving in my mind. I felt like a different person and didn't know who I was as I wasn't given any name for this disorder. I had never heard of the same case. I have never been able to get rid of these feelings. I kept myself aloof from the boys. I avoided having boy friend as it was expected that he would never like to marry me after knowing about me. I got myself indulged into studies. But gradually all these things started breaking me inside and I was unaware that I was going into depression. At the age of 22, I started having body pain especially lower back. I couldn't concentrate on my studies but somehow I managed to get admission in MBA in Bangalore, South India far from my native place. I moved to Bangalore and the real struggles began from there. Far from my family, I found myself very alone. I found it very difficult to hide my absent period with hostel mates. I preferred staying in single occupancy. But I had to compromise on having social life. Some people considered me arrogant, some felt I was like granny, etc., consequently people started ignoring me.
In 2008, I got my first job, which was related to research which required a lot of mental work. With all the physical and mental pain, somehow I managed to work that I am doing even now. But I am not able to give my best and the worst thing is that I cannot share my feelings or my pain to anyone.
From the doctor to my family members, everybody asked me to keep it as secret. In Indian society, it is very difficult to survive with MRKH because people won’t respect you anymore, they will devalue you, will make fun of you. Most importantly, nobody will deserve me to be someone’s wife, someone’s daughter in law… I have lived all these experiences from my best friends with whom I shared my problem with. Some of them think that I don’t have any right to marry and others think that I could marry only a widower with a child. So to save myself from all of this humiliation, I decided not to share it with anybody. But silence and keeping things inside kills you by degrees. And I was going through the same.
And the time came when I couldn't ignore and I couldn't save myself from getting depressed, aloof and feeling useless. All my friends and relatives started getting married and gradually they expanded their families. I use to feel like crying whenever I hear their news of having children or whenever I see snaps of their happy family and sweet, cute children on Facebook. It’s not that I feel jealous of them or I am not happy for them. It’s just that I feel myself very inferior, unlucky whose life is so incomplete. And then I thought and complained to God.. .WHY ME???? Whenever I was alone at home I used to close the door, switched on TV to the maximum volume (so that nobody could hear me) and used to cry and shout to the fullest energy until I got exhausted. I was getting into more and more depression, hopelessness, misery, sadness…..
But one good thing was waiting on my way…
In June 2011, one fine day, my sister sent me some links to read. The link was about MRKH. I opened the link and began reading. My eyes became larger, tears rolled out and I was very shocked. On the other hand, I was so happy as I got to know the name of my syndrome “ MRKH”. The whole day I searched more reading material related to MRKH. During research, I came across a Facebook group called “MRKH support and awareness s” which is a supportive community for females with MRKH. I joined this group and you can’t imagine how I felt. I was feeling just blessed to see a place where I could speak about myself, where I could share my feelings, where I could cry, where I could laugh, where I could do everything what I felt like. I got a platform where I met other women like me who went through the same, who was feeling the same as I feel. And top of it, they were willing to listen to me, they could understand my feelings. They could console me, they could make me happy. I made some friends from that group. Some are from US, UK and India. Among them, I found my best friend Christina who is very close to my heart and a special person in my life. With whom I shared everything and whom I found beside me always. I would like to thank God that He has given me such a precious gift in the form of “Christina”.
In the same time, I came to know that I had been ignorant about one more aspect of my condition since years – i.e. I could have a shallow vagina. I asked my mom whether doctor told about this. Then my mom replied that doctor asked for a surgery 6 months before I get married. I wanted to know the details but she told me that nothing was communicated to her more than this. To my surprise, neither my parents bothered to know the details nor the doctor bothered to explain it. As people in India, feel very hesitant to talk about this. At that time I felt my parents to be a little bit casual and careless for me. It’s been more than 25 years and they didn't bother to tell me about this or consult to doctor for any possible treatment.
Then I found myself all alone in my journey and I started searching on internet to know about the treatment. Based on the information obtained through the Facebook MRKH group and some other source, I found two options - surgical procedure and dilation. I found surgery to more complicated, risky and painful. Hence, I chose to dilate.
But what should I do next? A big question mark was in front of me. To whom should I approach? I have never heard of dilator in India. I was clueless.
I decided to consult the doctor/Physician whom I known for a long time in Bangalore. I told him everything about my condition. He said he would get back to me. After some days, he referred me to a gynecologist. I went to her and told her about me. I was lucky enough that she knew about MRKH. She told me that I could start with dilators. But she told me about the biggest problem that dilators are not available in India, as nobody is aware of dilators not even doctors. Dildo can be bought which is somewhat similar to dilators but the possession and sale of dildos is illegal in Indian jurisdictions. Patients have to take the option of surgery because this is the only option kept in front of them by doctors. It is very unfortunate and disgusting that neither of the doctors, government and any organization is making effort in this direction. I mailed some of the Indian pharmacy manufacturing companies requesting dilators but no response at all. They didn't even come with any sort of reply like they don’t manufacture or any possibility of manufacturing those dilators.
Fortunately in my case, my doctor has a set of dilators, which she brought from US when she was there. She circulates these among her patients. She rented me those dilators for 6 months. I got worried what will happen after 6 months. A female from the United States helped me by sending dilators from the U.S. to my doctor in India. These dilators are mine and I can keep them forever, free of cost. For this, I will be obliged to my friend in the US for my whole life.
Right now I’m dilating. But I cannot do it regularly because of my busy schedule. But I’m happy that I am reaching my destination gradually but steadily.
Right now I am still single and an independent woman. . Even though my society doesn't know about my MRKH condition, I feel very alone, inferior, insecure and rejected. Here people don’t value or respect a single/unmarried woman. I know after some years if I will still be unmarried, people will start seeing me with a question mark, they will start questioning me why I’m not getting married, why I’m not in any relationship. I get scared of when I think of such situations. I really don’t know what my future will bring for me…
I can only pray to God that He would send someone into my life who would understand my problem, who would love me immensely and who would accept me as I am. I know it is not that very easy. In the midst of my fear, uncertainties and insecurity, I have decided to adopt a child whether I get married or not. I will pour out all my love to my baby. And I know one smile of my baby will bring thousands of smiles on my face…
-Purbi, India, 29
My biggest struggle through the years has been learning how to accept the fact that I have a congenital defect called MRKH. I found out I had MRKH at 16, almost 17, and was devastated, because I learned at that young age that my uterus did not develop properly and that my vagina only partly developed. This diagnosis was heartbreaking, as it meant that I would not be able to carry a child. I had major surgery (McIndoe) that required a skin graft within a month of my diagnosis to create what is called a neovagina, and according to some people, I was now fixed. Think about this—I was diagnosed, had surgery and ‘was fixed’ in one month at 17 years old!
After a few months I was very capable of having sex. However, I was not prepared for living my life with MRKH. I was not prepared for the loneliness and isolation that often accompanies MRKH. I was not prepared to handle normal everyday questions, such as, "Do you have a tampon?" "Oh, God, I have my period again!" I did not make many deep friendships with other women; most of my best friends are men, because it was so much easier to be with them. I didn't have to explain, and I could just be me.
During college, I struggled with defining myself. Was I a woman? Was I intersex? Was I straight? Was I a lesbian? Did my sexuality depend on my condition? After soul searching, I know that I am a woman; I have two X chromosomes and I feel like a woman. I also realized that sexuality could be fluid, and could be somewhere on a spectrum.
During grad school, I watched friends get married and have babies. Part of me was happy for them when they became pregnant; but another part of me was in serious pain for me, for my loss, for my lack of ability to become pregnant. I went to a counselor, who gave me the permission to treat MRKH as a death, to grieve for my unborn babies. I had many dreams during the next ten years that I was pregnant and forgot to feed my baby, that I had an ectopic pregnancy, that I held my baby in my arms. I forced myself to stay asleep when these dreams came, because they were my only chance to love my babies, my chance to be just like any other woman.
After I got married, I was surprised at how nosy strangers are. "When are you two going to have babies.... I'm sure it won't be long now... How many kids do you have..." These questions continued, and with each one, I would feel just a little bit smaller. Then, I figured out how to stop them. When someone would ask, I would look them in the eye and state firmly, "It's complicated." It empowered me, and I didn't even care that I had made the other person uncomfortable, because they had just met me, and yet were asking extremely personal questions.
In 2009, I attended an Art Therapy Workshop for Women with MRKH. It changed my life. For the first time as an adult, I met someone else with MRKH. I didn't have to pretend; I didn't have to worry that someone would say something unintentionally that would hurt me or that I would do something to make someone else uncomfortable. It was the single best thing I have ever done for myself.
About 2 years ago, I officially "came out" with MRKH to my medical colleagues. I traveled to Ann Arbor and met with a group of clinicians, some of whom were personal friends of mine. I was completely honest with them about my experiences. It was liberating. I felt free.
Since then, I have attended and organized 4 retreats for women with MRKH, co-administered a support group on Facebook, and I have started talking publicly about MRKH. I also co-founded the Beautiful You MRKH Foundation. I have met amazing women (virtually and in person) from around the world. My life is so much bigger than it was 2 years ago, and I am amazed at how much deep fulfillment comes from opening myself up and letting people in. I am unstoppable, and I know I have more amazing days to come.
I can truthfully say that I have been able to see the positive side of having MRKH for the past 10 years or so. I am a MUCH nicer person than I would have otherwise been. I have a deep empathy for and appreciation of people who live outside of the norms of society. It is so freeing to not have to live in that role; I have the complete freedom to just be me. I could have adopted or used IVF and gestational surrogacy, but these options never seemed right for me. Now I know that this is because I am supposed to help others who are struggling with MRKH. I am supposed to help my grad students finish their degrees, and I have the luxury of doing this on my time, as my responsibilities are few. There are days when I struggle, days when I feel the pain of MRKH, but I know the pain will pass, and I know I will be OK.
I live in Argentina, north of my country in a town called Salta, I have 38 years and I have MRKH.
I was 17 and expecting my period… but didn’t get it. Both of my parents are absent in my life, so I went to the gynecologist alone. I thought I was just getting my period late, but to my surprise, I was wrong. I first saw a doctor, who then called another colleague, who needed additional help who got another colleague. This was already an uncomfortable situation and multiple doctors only added to it. It was then I knew something was wrong.
I had an ultrasound. After the ultrasound I was called and told I had a genetic malformation with no vagina and uterus. Hearing this news made me fall apart. I was told I should travel to another hospital to have a laparoscopic exam and that I could not ever have biological children. It was tough, I didn’t know what to think or how to handle the emotions I was feeling. I was just a scared and a lonely teenager facing this difficult diagnosis; that wasn’t even given the name of the condition that I suffered from.
With no support from my parents, I couldn’t afford any treatment and the emotions I was feeling I had to deal with by myself
I learned to hide what was happening to me, I wouldn’t tell anyone about it, not even my friends. I was afraid of rejection and I started to feel uncomfortable with my female friends. I began isolating myself and not wanting to have female friends. I only spent time with a couple of my male friends, who knew nothing of my situation.
Every so often I went to a doctor to give me another option other than surgery; but every doctor I saw knew nothing about my condition. I, the patient, had to explain to the doctor, what my condition was. I only knew it was a genetic malformation, and having to explain it to a professional seemed unfair and even offensive to me. It was so offensive that I didn’t want to see a doctor even when it wasn’t related to MRKH. I once I broke a toe; and I was filled with fear by just merely going to a hospital.
In my country the doctors are fighting for better pay, and care little about the welfare of a patient, they lack ethics, and the health system can be cruel. I’m not trying to generalize, but this is my experience with medicine and medical world in my country.
Years passed and I saw that it affected me not only physically, but also a socio-cultural level. Argentina is a society where the priority is having a large family. Families here typically have four to five children and the woman’s primary role is being a mother and housewife. I felt I did not fit in in my country and now I am faced almost daily with the uncomfortable question of others asking me if and when I will have children. It is uncommon to see a woman my age without children and the majority of people are surprised and wouldn’t understand why I don’t have children. I decided not to adopt and accept that I would never be a mother. The inability to have a child does not hurt as much as the knowledge that I could not choose whether I wanted to be a mother or not. I have no choice but to hurt inside.
But what affected me most over the years was not knowing exactly what was wrong internally and not knowing what the condition was called, and how to treat it. My fear of doctors prohibited me from going to the hospital. When I was almost 30 years old, I began doing researching on the internet.
I began to internalize everything I read about my condition. I learned that I have MRKH syndrome, which stands for; Mayer Rokitanski, Kuster, Hauser syndrome. I found out about dilatation; an option for those who do not want surgery. I began to understand why my knees and back hurt over the years, and the pain that came from my ovaries that apparently were ovulating normally. I was thankful to find out I was a complete woman with XX chromosomes and not a freak as I had felt for a long time. I did have a tomography that I proved that I did not have a uterus.
I did dilation for a while and found it be effective; it helped me have a more normal life.
MRKH is very complex not only physically but also in the psychologically. I use art as therapy, and that helped me to express myself and get out of isolation, to be a creative woman, to feel beautiful and not dwell in depression of not being able to be a mother. I know now, that a woman is a strong individual who is beautiful inside and out and isn’t any less of a woman if she can’t have children or her own.
When I was 33, I had to overcome MRKH again; my beautiful beloved niece was diagnosed with MRKH. This was a blow to me and really touched my heart deeply. I’ve always been close with my niece and I’ve had a very special relationship with her since she was born. When my sister died, it felt like my niece was my own daughter.
Luckily I was already informed of MRKH when my niece found out. I say fortunately because it you were told the same thing to me, I had to have surgery and travel to Buenos Aires.
We talked about her options and decided on dilatation, (which even the doctors do not know it exists) and it’s being an effective treatment for her too. My niece and I apart from the union we had, we have formed a new one, the bond being MRKH. Despite having 18 years of difference we can talk about everything.
Now I know that it is important to know oneself, and accept yourself how you are and try not to isolate yourself. This condition does not make you less than anyone. I hope my story can help future generations and provide evidence to doctors that MRKH is a genetic based syndrome and can be hereditary.
I remember when I was a little girl I used to wish that I would never get my period, strange thing for a girl of 10 to wish but I was very shy and thought periods were scary! I remember reading in a magazine once about a girl with something called MRKH (( only remembered the first two letters because it reminded me of Mary-Kate Olsen strange I know) but I remember wishing i had that because the girl didn't get her period, i didn't know then that my wish came true. My name is Annon and I was born with MRKH!
"Sweetie wake up, Mum's here" is what I heard when I awoke in recovery after an operation to cure my 'thickening of the hymen' "Do you feel okay?" she said "yes" I replied "is it all done now am I fixed Mum?" "Darling the doctor told me that what you have isn't what they originally thought and they can't fix what you have in Rockhampton so they are writing up forms now to send you to Brisbane in a couple of weeks where the specialist Gynecologist can help you" By this point I was curious as to what I had, but no one told me. From there I was sent off home to await my letter that would take me to a more suitable hospital eight hours away from my hometown. I was 12 years old and it was summer of 2003. I was due to start my first year of high school in a few weeks and I was scared to death. My first pelvic examination had occurred a few weeks earlier; what a horrible Christmas break I remember thinking!
Week two into my high school year and I was taken out for my 'holiday' that’s what I told everyone I was doing; but really I’d be getting an operation and tests. The hospital had arranged for my Mum and me to take the ten hour train ride to Brisbane. I can tell you ten hours on a train with nothing but a few magazines to read will probably send the sanest of people crazy; I swear my Mum and I ate every cookie they had for sale in the dining cart! So we got to Brisbane and went straight to the Mater Woman’s and Children’s Hospital where I met a kind older doctor, who was a lovely man that I felt I could trust. The next day I went in for my 'operation' I wasn't told what they were doing and I had no name for what I had! I just did what I was told in the most polite manner like my Mother taught me. I awoke in recovery about an hour after being put under with horrible pains in my anus and vagina, I also had a pad the size of a surfboard between my legs something I would get familiar with in the next three years! The nurses were all wonderful and eased my pain as much as they could. When I got to the ward, the doctor came to my room where my mother and I were waiting. He explained that they had placed a balloon catheter in my vagina to keep my vagina open. If all goes well, my body would do the right thing and keep it open after the balloon catheter came out so I could live a normal life. The balloon was inside me and hanging down from my vagina opening, was a tube about 15 centimeters long and at the end of the tube were two tubes about 2 cm each with holes in the bottom. My doctor explained that these were draining the blood out of my tummy that couldn't get out because I was “special.” He also told me that the catheter would stay in for the next six weeks until my next visit. He also explained that they had done some keyhole surgery to scrape the cysts off my ovaries which I wasn't too worried about. I was more worried about the disgusting tube hanging from me. It was horrible to hide in my underwear and uncomfortable; I’d have to wear pads every day for the next six weeks.
Six weeks later another two weeks off from school, they took the catheter out. My doctor said to me, "If it’s worked then this will be it and you can live life like a 'normal' young lady" he then concluded, "Come back in six weeks for a checkup" I was free of that gross thing finally. I can enjoy school and not feel like everyone can see my 'bits'. To be honest, it made me feel like I had a penis and everyone knew! It was shameful and gave me great anxiety. Also, I still didn't have a name for what was wrong with me.
Six weeks later my vagina had closed up. In goes another catheter for another TEN weeks! This time my balloon was filled with water and I had no idea why but I just accepted my fate by that point. No longer was my body my own, it was doctors, nurses and surgeons.
Five weeks later, I was enduring horrible pain in my vagina area and something just didn't feel right with this new 'friend' of mine. One day I stayed home from school because of the pain and I was lying on the couch watching TV with my little brother when I felt a huge burst inside of me! I turned to my brother (who was only 11) and said "Trissy I need you to call mum at work okay, because you know my special balloon inside my tummy? I think it just popped!" I tried to be as calm as I could and dragged myself to the shower. In the shower, I remember looking down at the tube and it was still hanging there, so I thought it might be okay… but then the whole thing dropped from me! I wasn't shocked or scared; I was relieved that the pain had stopped. Mum got home in a hurry and we took my 'friend' and I to the local hospital. I sat there thinking of something else as my mother explained my condition to the doctor who had to get out a book and search online to find out what the hell was wrong with me. They called the nurses at the Mater in Brisbane and my main nurse explained to them to just come to my next visit in five weeks.
Five weeks later more school missed and off to surgery I went again. This time they had cut my vagina opening to make it longer and inserted a dilator. It was explained to me that I must use these little glass tubes to dilate my vagina for an hour every morning and an hour every night. I was taught how to do it properly by the nurse and then was sent on my way. I was told to come back in six months.
The next six months were a roller coaster for me. I missed a lot of school and became behind in all of my classes and had fallen into the wrong crowd. I was severely depressed and I turned to smoking, doing drugs and skipping classes pretty quickly. The people I sat with were starting to turn on me as I was different to them; I was the girl who was quiet and wrote poetry. They were the rebels that everyone thought were cool, but they still allowed me to sit with them; even if they wrote horrible things about me on the bathroom walls and on the tables where we sat. I ignored it as much as I could, dealing with my health problems and having no true friends took its toll on me and I started cutting my wrists and legs. I became very dark in those six months.
Back to Brisbane I go with dilators in my suitcase. I wasn't getting an operation this time, just a simple pelvic exam which I wasn't thrilled about! I'd rather be asleep when they did things to me, i was only 14 by this point and I was very shy about my body still. My doctor did my check up and said everything was going well and to keen doing my "Thai Chi" that’s what my family used to call dilatation as the word was (and still is) very intimidating to me! Even now when someone says Thai chi, I almost die of embarrassment. I was instructed to come back in 3 months.
School had gotten worse by this point and my depression was worse than ever. My Mother and Father separated, I was alone and depressed and felt very suicidal. The people I sat with had stolen my journal with all my poetry in it and my personal thoughts including things about my MRKH and were spreading rumors about me. So I changed schools to a different town.
When I went back to Brisbane we had been told that my doctor was now practicing at a new hospital The Royal Woman’s and Children’s Hospital so off we headed to a new world. He now had an associate doctor working with him, of whom I didn't like. I began to see the associate doctor more and my regular MRKH doctor less. I had grown attached to my MRKH doctor over the past year and felt uncomfortable with the new associate doctor. It was a normal checkup, consisting of: bloods, urine, ultrasounds and pelvic exam. I had been experiencing excruciating pain in my lower abdomen and back (like period pain) since I started dilatation, so Mum wanted to get that rectified. It had been over a year since everything first started and I still didn't have a name for my disorder! I was told that yes I would have children, that I had two ovaries, two Fallopian tubes and a uterus! I was told I just didn't have a vaginal opening and that was an “easy fix.” But this trip to Brisbane was going to open my eyes. We went to the practice to get my test results, and the associate doctor came into the room and sat down. I wondered why my dear MRKH doctor wasn't there but I didn't ask questions. About five minutes into explaining my test results, I was told that I had a very large ovary (about the size of a tennis ball) on my left side that was filled with cysts and that my left fallopian tube was the size of a fat sausage and that’s what was causing this horrible pain (for people who don't know an ovary is supposed to be about the size of an olive and a fallopian tube like spaghetti pasta). They also explained that because I still had a uterus; I was still menstruating, therefore I had a sever buildup of blood inside of me! My MRKH doctor walked in and didn't say a word to my Mum or me. He just came into the room, got papers and left. I was mad! The associate doctor then told us, I was to get a partial hysterectomy to ease my pain and to keep dilating until I found a nice boy to settle down with and have a 'normal' sex life with. My Mother was in pieces and I just starred at the wall. I remember being so angry at my MRKH doctor and actually hated both of those doctors because they had treated me like an experiment and made me promises that are now broken. I left the room feeling nothing but hatred. I had just lost my fight.
Five months later and a month before my 15th birthday, I had my hysterectomy that would ensure I would never bare my own children. It was the most traumatic time of my short life as a day before my big operation; my friend committed suicide. My world was shattered that week.
I still didn't have a name for my disorder until about two years later when I searched it online and found out about MRKH!
I am now 20 and I still have a mass of health problems including cysts on my ovaries and lesions on my bladder. I'm in pain three weeks out of every month because of it. (Yeah it gives me a week off; how nice! :)) Some people were meant to be sick all the time, and I guess I’m one of them. But I know I could be a lot worse off than I am right now. I am still coming to terms with not being able to have children and I think it will haunt me for the rest of my life, as I’m a very maternal creature. I have a great partner who supports surrogacy and we have a normal sex life. I also have amazing friends and family who support me in my endeavors! I am living proof of an experiment that went wrong and I will never forgive those doctors for all the pain I endured, so they could try to find a 'cure'. I'm all for finding a way for MRKH woman to carry their own children but what I find utterly appalling is that I was the subject and they never explained anything to me! I was the last person to know. Doctors that are dealing with young woman with MRKH need to make information more available, they need to explain things in terms young people will understand, give them flyers, books and websites to search just like this one.
I wish all you young ladies the best. We are all unique ♥
Your MRKH Sister.
Our stories, in our own words
Ever since fifth grade, I knew something was different about me. One day I didn’t go to school because I was sick and that was the day the boys and girls split up and the nurse and teachers talked about puberty and what was going to happen. I didn’t know about this until the next day when I arrived and other students told me what I had missed out on. I simply responded with “okay” but I remember my exact thoughts were: “it doesn’t matter because I’m never going to get my period.”
I’ve always been smaller, both height and weight, and very active in volleyball, basketball, and track so doctors always said, and assumed, my period would come eventually. However, when my senior year of high school rolled around, I still hadn’t started my period. In January of 2011 I went to a gynecologist who made assumptions about what it could be but never what it actually was. On February 17, I went into surgery to see what was wrong and when I came out, I overheard the doctor telling my mom he didn’t know what was wrong with me. On March 4, 2011, my parents met with the gynecologist because he wanted to speak with them in person and tell them what I had. I was in school and couldn’t make it to the meeting so I didn’t find out until later that evening. I was about to hang out with some friends when I remembered about the meeting and asked my mom what she found out. She told me it can wait and to have a good time but I had to know. It was about me and my body, it couldn’t wait for tomorrow. She proceeded to tell me that I have MRKH, I won’t ever have my period, my uterus is deformed, and I will never be able to carry a child.
It felt like I was standing there for an hour, soaking it all in and crying because my life now has forever changed. I never dreamed of being pregnant or necessarily planned on it but I felt almost every girl just assumes they’ll have a child with their husband one day and I assumed the same for me. My mom told me a little more about MRKH because we had both never heard of it, which made me feel even more alone and an outcast to my family and everyone around me. My gynecologist recommended me to a chat on the Center for Young Women’s Health website. Unfortunately I didn’t make it to the monthly chats until half a year later because I was avoiding the truth. I didn’t want to admit to myself that I was so different from everyone else. Finally, about halfway through my first semester of college, I made myself make time for the chat. A little before it started I made sure to tell my friends not to bother me because I had homework but I didn’t want them to know what I was actually doing. That first chat was so amazing; I finally was able to ask the questions I had been dying to know and couldn’t help but cry because I was so happy I wasn’t alone anymore.
After I found out I had MRKH, I faced depression for about a year and a half. So many things in my life were changing. I was diagnosed with MRKH, I moved to a new city and started college without knowing anyone, ended a two year relationship that I thought would last forever, and thinking that I was a freak and alone in this world. After the first chat, I made it to a few more but then I avoided it again. I felt if I wasn’t necessarily reminded of it as much then I could forget about it and it would go away.
Finally, I accepted the fact that I have MRKH and it wasn’t going to change. Throughout this past year of college, I had been thinking about it quite a bit and decided that I’m going to embrace it. I’m no longer ashamed or embarrassed to tell people that I have MRKH because I was born with it, there’s nothing really I can do about it. This past year I have told more people, and more random people that I am not very close to, that I have MRKH. Most of the time people ask a couple of questions but never mention it again, either because of feeling awkward or forgetting. But I’ve decided I don’t want people to forget, I want people to remember MRKH and think “why does she have it?” and “what caused it?” and one day, I hope to know the answer. I’ve decided I want to bring awareness to MRKH and make it so young girls in the future will never feel the same way I did. One day I hope to work with Beautiful You MRKH Foundation and spread awareness so no girl with MRKH will ever feel alone again. United States, 20
I have vivid memories of sitting in the special class in primary school getting our first basic sex education class, I was curious and fascinated with what she was telling us… One day soon I would start to bleed and this would be called a period, from then on the waiting game started. One by one all of my friends started to get their periods until one day going on 15 I realized I was the last one in my class who hadn't started.
It took 5 years before I had answers; doctors ignored me at first just assuming I was a late starter. By 16 the serious tests, scans and examinations started. It was tough trying to fit in with the girls on my college course as they talked of period pains, sexual encounters and pregnancy scares. I stayed quiet, hiding behind my college work and drinking excessively at the weekends. By 17 I had my first serious boyfriend and after months of being frigid I gave in and proceeded to try and be intimate. After experiencing the most humiliating experience of my life, and being called a freak by my boyfriend for my lack of vagina, I swore I’d never do that again and I’d never get close to a guy.
Looking back it would have been so easy for me to get a diagnosis at this point, but I was so ashamed and confused I attended appointment after appointment being poked and prodded. I was a medical mystery and each appointment there would inevitably be a student bought in and tested to see what they think could be wrong with me. After and MRI scan things started to click into place doctors finally decided to try exploratory surgery to find out what was wrong.
Coming round I was groggy and felt ill whilst I was still recovering my consultant came to me and told me he’d need to see me again to give me the results but there was nothing more he could do now! It felt so final and at 19 it scared the hell out of me. I had to wait two weeks until my follow up appointment, I went alone and when the consultant realized I was on my own he insisted a nurse came in with me for the news. I've never been so terrified as when I saw the look the consultant gave me, he proceeded to tell me that I had no uterus but did have my ovaries, he then also told me I had a shortened vagina which would make penetration near on impossible . It was all so much to take in and I sat there frozen until he closed my file. I have never cried so much in my life, and I’d cried a lot of tears up until that point.
I was sent to a specialist hospital in London (the only one in the UK) and things were explained in more detail. I decided on starting on the dilators as quick as possible… the quicker I started the quicker I could be fixed and normal! Dilators where awfully uncomfortable, embarrassing and a constant reminder I wasn’t like other girls.
Over time I successfully managed to get the desired effect from the dilators and relationships got easier. I relaxed around men but never forgot I was different, thankfully I have not had a bad reaction to my condition since and this has helped to build my confidence. I’m now in a loving and stable relationship I was honest from day one with him and he accepted and loved me for who I was. For the first time since I was diagnosed I didn’t feel defined by my condition as he looked straight past it. We are now starting our journey to be parents through surrogacy and I couldn’t be happier.
It can be hard living with MRKH, emotionally and physically, but it does get easier with the right support. Doctors can be so cold and clinical and if it wasn’t for the support of my Mum I wouldn’t have accepted it. I now feel comfortable in the knowledge that I am female and have a much better sense of who I am. I’m sure I will face challenges in the future but I feel positive that with such wonderful family and friends around me that nothing can hold me back now.
United Kingdom, 23
I had no idea that there was something ‘wrong’ with me, until the day I sat in that doctors office and was told I had this syndrome with the really long name, which I was sure I would never remember. So I didn't have a uterus. Big deal, I wouldn’t be getting any of those darn periods all my friends complained about! And okay, I wasn’t going to have babies, but come on I was 15 years old, having babies was way out of the picture. The only thing I didn’t get, was why every time I told someone, they would cry to me? With me? For me? I wasn’t really sure…
After my diagnosis, I was lucky enough to have an AMAZING friend of the family who got us hooked up with a WONDERFUL Doctor at a GREAT hospital. (Honestly I cannot use enough positive adjectives to describe that sentence!!) Being that he was a man, at first I was tentative. But he was soft spoken, relaxed, and so kind. He also had a daughter just about my age who he talked about often, which made me feel extremely comfortable with him. We decided on a procedure in which they used my colon to extend my short vaginal canal. It was one month from the day I decided to find out why I wasn’t having periods to the day I was on that surgical table. The choice for me was simple. Although the procedure is one of the most difficult ones, it would give me the most ‘typical’ functioning vagina. Since then, I have had to use a dilator very minimally. The worst part for me was that after a while I started having an issue with excessive mucous in that region. But that was a very simple fix, involving a sodium chloride flush I use in the shower about once a week.Emotionally, the way that I have dealt with having MRKH is by being an open book to anyone who is wanting and interested in listening to me. There are no questions I won’t answer, and no details I’ll leave out. I have been blessed with the most incredible family and friends as a support group for the past 8 years. I could not have asked for a better support system. Being able to openly express myself has made me so comfortable in my skin and allowed me to own who I am and what I will become. It has made me positive that I would one day find a man who could accept me for what I offer (which I have!). It has made me confront the fact that I will never get pregnant, yet also prepare myself for the way that I will become a mother one day. There are 3 factors that I believe whole heartily gave me the ability to have a positive outlook after my diagnosis; Knowledgeable doctors, supportive friends and family, and true acceptance of the facts.
Currently, I am 23 years old. I have boyfriend of 4 years who understands and accepts me having MRKH. I will admit that this time period of my life has been a little more difficult however. I’m sitting back watching friends having babies left and right. It’s hard to see people close to you, spend 9 months doing something you would love to be able to do. But that’s just it; it’s only 9 months!! Being pregnant only lasts so long, but being a mother is a lifelong job. So if I ever do get down (and yeah, there are times when I’ll let myself have a good cry) I just remember that no one is taking motherhood away from me. I simply have to find another way of getting there.
I love everything about my life. All the positives and negatives have come together to make me who I am; a strong, confident, and very determined person. MRKH is a part of me, but it doesn't define me. <3
United States, 23
This is a challenging story to piece together after fourteen years of mostly only ‘thinking’ about it, rather than explaining what ‘happened to me’. Needless to say, life is actually good and I live it with relative normality.
However, like the chicken and the egg story, I wonder if I am the person I am because of MRKH or despite it? I will never know.
Like every teenage girl out there, I would sit and chat with my friends discussing the usual; mainly boys, music, school, and how we were going to get married, have great careers and beautiful children. My dream was to go Hollywood and become a star! Furthermore, I had already decided that I would call my daughter Olivia before I was old enough to know what I know now.
It was around the age of 16, I took my GCSE (high-school) exams and as most MRKH girls can relate to, there is that horrible fear of not knowing when the first period would arrive!? It was for this reason; I spent three weeks wearing a big, ugly, sanitary towel for a long and (now) pointless duration. No period ever arrived.
Okay… so the magazine columns said they could arrive late? What was late? Sixteen years old, sixteen and a half? I was starting to enter into the ‘late-starter’ category but I still wasn’t concerned. At the time, I was dealing with being a teenager which comes with its own dramas; weight, spots, Belinda Carlisle love songs – menstruating was just another element to tick off the list.
Sex. Sorry to all the mother’s out there whose faces look like they have bitten a huge chunk out of a lemon. But yes, your daughters think about sex, a lot. I was seventeen and this, for me, was the common age to think about the S word. Our peers may have already experienced the ‘first time’, others are simply choosing not to, but the majority of us would be on the brink of taking this leap into woman hood. I tried and simply couldn’t... literally. MRKH doesn’t allow us to carry out this simple, natural and physical human right without the help of medical intervention. At this stage, something was very wrong.
So, after weighing everything up, my GP referred me for a laparoscopy. Most MRKH girls can relate to this procedure. And, it was following this procedure my life would change. I remember sitting on the bed, coming round from the anesthetic, joking with my best friend – “now I’m just like you” and in fact, after the doctor surrounded my bed with the curtain, I couldn’t of felt more confused, alone, scared, devastated, angry, lost and alien. The only person I wanted or needed in that hospital ward was my mum. She sat there, equally confused and speechless but the mutual devastation was palpable and I am sure all mother’s will have their own story to tell. It turns out, without her... I simply wouldn’t be the person I am today. Without her in my life, guiding me through every emotion that I could possibly encounter, I would be a very different individual. She is my angel.
My initial reaction was to self-destruct. I would say that my behavior could now be diagnosed as post-traumatic stress but back then... it was to drink too much, to eat too much, to self-harm and I would continue this cycle for a number of years. Needless to say, this behavior was behind closed doors. To my school mates and my family (I think) I was seen as holding it together. I got the lead in the school musical, I remained close to my family and friends however, two months before my final school exams; I dropped out.
My emotions and confusion were bigger than me. I simply couldn't cope. I felt so dazed, I could barely focus on the tip of my nose let alone, map out my education and desired career path. For this reason, I did seek out professional counseling, eventually.
The good news; I made it.
Fourteen years on, I have traveled; I have had boyfriends and break-ups, jobs of responsibility and success and lead, at times, a challenging but rewarding life. MRKH never goes away – there are times my heart sinks. There are moments where you are unprepared to deal with those feelings during a normal day. There could be a storyline on the television about infertility or pregnancy, or receiving the wonderful news that your best friends are about to have their own children and learning to smile with them (and mean it). Some boyfriends listened and some did not. Some just don’t understand and perhaps nor do they want to. But the good ones will stick.
All these challenges and truths can seem unfair and I have often questioned, is this God’s way of placing me on a different path or is MRKH to blame for me never gaining a full and complete education!!? Don’t get me wrong, I’ve been clever enough to use MRKH to my advantage and allowed myself to spend more on luxuries (because I cannot have children), win an argument (because I cannot have children), fail at a task (because I cannot have children). It is all about balance and teaching yourself the skills to cope and maneuver your way around life; ensuring you never compromise or cower away from really making yourself happy. I was once told; MRKH is like a book. With each milestone there is a different chapter and it will present itself in a different way. I have read the first chapter which sets the scene, I have read the second about boys and stuff, blushing for a good five years as I remember, and so on.
I rarely speak about MRKH to people, in fact, I think this is the most I’ve written MRKH in my entire life – but it’s been a good experience putting words to paper and perhaps I do need to speak about something, which in fact, has defined me as a person. Perhaps, I need to read the chapter about Olivia.
I commend the Beautiful You MRKH Foundation for bringing awareness and support to so many women around the world. If I could dedicate this story to anyone, I would dedicate it to my mum and to all those mums who also heard the doctor’s diagnosis that day too and just knew what to say. I would also extend this dedication to all us girls who hear it, live it, and live life as strong and beautiful woman. The word special doesn't even come close.
I am currently 21 years old and live in Michigan. I was 18 years old when I was diagnosed with MRKH. My family doctor and OBGYN had told me for years that I was not having my period, simply because I was a small girl and very active. It wasn’t until a few months after my 18th birthday when I decided to have my first female examination at the OBGYN to figure out why I have not started my period. I could see the confusion on the doctor’s face when she realized she was unable to do the examination on me because of my lack of vagina. They decided to do an ultrasound on me that day and that is where they realized my uterus was missing. The doctor at the time had never seen a patient with this type of abnormality and sent me to a specialist at The University of Michigan Hospital. Throughout time, I had multiple ultrasounds, MRIs and blood tests in order to determine my conditions of MRKH. Luckily, my hormone levels were on track, I have both ovaries and have no skeletal deformities from this syndrome. The tests have shown that I was simply born with a vagina, cervix, and uterus.
As an 18 year old, all I realized with MRKH was that I would not be able to have sex and could never have my own children. This was a devastating thought for me. My biggest difficulty was trying to understand myself what this all meant. I felt as if one minute I was a normal teenage girl, and just a few moments later I realized my life had made a permanent change. How was I going to tell my family? My friends? My boyfriend? Maybe I could just keep the news to myself and not let anyone know? I am very close to my family, yet talking to them about not being able to provide them with a grandchild/niece/nephew in the future was not what I wanted to do. My mother was a huge help for me through the initial shock and feelings of numbness I experienced. She drove me home from my initial appointment and I asked her to please tell my family by herself because I couldn’t care to see everyone’s reactions. Telling my long term boyfriend was the most difficult for me. He could see the pain I was in and was completely understanding and ready to provide whatever help I needed.
I knew right away that I wanted to do something about enlarging my vagina in order to have sex one day. I was petrified of surgery but knew if it came down to having to have surgery or not, I would do it. During my first visit to the University of Michigan Hospital, my doctor explained the various options to enlarge my vagina. I decided that I would start off trying to use dilators every day to stretch the walls of my vagina, and if there was no success after a few months, then I would start looking into surgeries. I would lie in bed twice a day for 30 minutes at a time dilating. After a few months my dilating every day, I was able to have a normal sex life. I have continued to dilate, but limited myself to about once a week for lack of time. There was no need for me to go through with any surgeries. Even though it was time consuming, dilating ended up being the best option for me.
Throughout my senior year of high school, I had good and bad days. Sometimes my friends would talk about their periods or needing a tampon and I would just act like every other girl and just pretend that I didn’t have a tampon to spare. Toward the end of the year I became more accepting of MRKH. This was not an easy task for me. I spent countless nights crying in my boyfriend’s or mother’s arms, but I finally hit my breaking point when I realized that MRKH did not define who I was as a person, it is just something that makes me unique and I should embrace it. The more often I told people about MRKH, the better I started to feel about myself. I came to realize that this was my life and there was no changing it, so it became my goal to spread the word to others to make them aware that this syndrome exists. Never once did I consider myself to not be a woman. I knew that even though I didn’t have a period and could not have children like the rest of my friends, I was still a strong woman with a lot of support surrounding me.
Now in college, I have noticed the diversity of people throughout campus daily. It helps me realize that everyone is different. It was important for me to realize that even though I was not born with a true vagina or uterus that does not mean I am not equally as beautiful as anyone else in my own special way. I have attended one conference at The University of Michigan Hospital where I was able to meet with a few other girls diagnosed with MRKH and learn their perspectives of the syndrome which also helped me come to accept the fact that I am not alone.
MRKH has simply become a way of life for me. I have been looking into adoption and surrogacy and realizing that even though I may not be able to give birth to my own child, I will still be able to raise and provide my love to a child one day that truly needs it.
Looking back at my experience of learning about having MRKH, I would say that the best decision I made was opening up to others. I wanted people to know that I have a unique syndrome and I do not want them to treat me any differently about it. I want to become an educator about MRKH by helping broaden people’s perspective on life. Every person has their own challenges, even if they are not physically noticeable to the public.
My friends and family continue to tell me how proud they are for how strong I have been through this experience. I explain to them that everyone has strength within them to overcome any hurdles set before them. Realizing that strength is there and learning how to use it is the most difficult part for people. Everyone I have opened up to about having MRKH has all helped me find that strength within myself and I can now embrace it. I mean why not embrace the fast that I will never have to worry about not being able to wear white pants, or not having a tampon on hand, or missing a period like most of my peers. MRKH is part of who I am and I am glad to be “different.” :)
United States, 21
When I was 16 years old, I went to the Dr. for a re-check, from just getting over an ear infection. During my visit, the Dr. asked me how my menstrual cycles were. I replied that I have not gotten it yet! He thought it was odd given my age, so he proceeded to check me out! Upon doing a pap smear and feeling around on my stomach, he tells me that I have no uterus, and that it is called MRKH Syndrome! Lucky for me he knew what it was!!! He then proceeded to inform me that since I admitted to him that I was sexually active already, if I needed, I could use what was called dilator rods! I didn't want my parents to know that I was sexually active so I let that go!!
After I left the doctor’s office, instead of going straight back to school, I went to see my mom at her work, to give her the bad news that I had just received. Tears filled up and she came and gave me a big hug, to let me know that everything would be okay!
After finding out that I have MRKH Syndrome, I went through many of the stages of grief, as if I had lost a loved one! I didn't care about being safe sexually either. Right before I turned 17 I met the man, who I thought was my soul mate; and he had a daughter, which made it even better!! So exactly 1 month after I turned 18 we got married and I became a wife and a mother! My dreams of being a mom came true!!
I was married to my husband for 12 years; then I got a chance to break away. I thought I loved him, we would be together for life, but it was just not meant to be. He and I were not compatible by any means; I was more in love with the fact that I was a mom!! My step-daughter was at the critical age of 12 when I left her dad, and it was the hardest decision I ever had to make in my life, because I had to leave her with him. He and I had discussed and even took some classes to adopt more children, but did not have the opportunity to do so, which I am now thankful for, since we couldn't make our marriage work.
My step-daughter, has had some tough times with many issues in her life since she was a little girl; and Mommy leaving made it harder; she bounced from foster care and treatment places since she was 16 until she 19, and is now almost 22; we have had a great mother-daughter relationship, until recently.
Because of the things I have endured from my ex and step-daughter, for the past 9 years, I have had so many mixed emotions, with having MRKH. At times I am glad I never had my own, at times I want to look into adopting again, at times I am just glad that I have so many pets to fill that void of not having children.
Yet, in the past 9 years, I am ever so thankful, for the man I have in my life now; he knew of my situation before we ever got together, and it never bothered him. He is my best friend as much as he is my lover; he told me in the beginning of our relationship that he never wanted children so it didn’t bother him that I couldn't have any; and yet, he is now willing to adopt too!
I joined Facebook in February of 2011, and a little over a year later found the MRKH Support and Awareness group just earlier this year; I knew there were others out there that were just like me, but now I am getting to know who they are, in some ways, and how they have dealt with having MRKH; it has been so rewarding, refreshing, etc. to be able to talk to others that can relate to how I feel. I have learned that even though we all are the same in having MRKH we all are different in relation to what exactly we are missing and other medical type issues; so it is great having other to confide in and vent to with our indifferences to those who don't know or understand!!
I am 38 years old now, so I have known that I have MRKH Syndrome for 22 years now; I have accepted it, for the most part, but I don't think I will ever really get over the fact that I will never be able to experience the miracle of having another life growing inside me. It is easier to live with as I get older, but I will always feel a void so to speak!!
United States, 38
The process of getting used to MRKH was, and still is, a challenge for me, but I have supportive friends and a supportive family around me. When I was diagnosed with this, I didn’t know what to do, I didn't know if I wanted to cry, scream or become angry as it was dealt with in the wrong manner. As I had not long turned 16 when I was diagnosed, it felt like the end of the world for me, but nothing's worse than not being able to control your emotions as going through the adolescence stages of life.
This past year and 2 months have been a challenge for me as I have gone to see many different gynecologists and psychiatrists, and now I am seeing counselors as well, to help me cope with my own life and to make it seem better. What I have learnt over these past couple of months is that MRKH won’t affect your life forever, and it is not all bad, it will be just how you perceive the condition and how you are able to cope with this will be your choice. There are so many of us out there that you are able to talk to for advice as the majority of us understand MRKH more than others.
At first, I couldn’t cope with the anxiety of dealing with this in the first couple of months, but I found that the more I talked to people about how I felt and the more I researched about this condition, the more I learn how to cope and deal with not being the same as everyone else, though who is the same?
I really hope this story helps.xxxUnited Kingdom, 17
I’m a 34 year old woman living in Norway. I have knowingly lived with MRKH for 18 years now.
When I was around 15 / 16 I still hadn't got my period. As I am little by nature and gained everything slow I did not think too much about it; I also was kind of a tomboy.
At 16 I started to have big pains in my lower stomach. The symptoms were like period pain as my friends described them; just worse… In the beginning the pain lasted a few days, I took some pain killers and lived on. As the weeks and months went by the pain started to come and stay more often. I could only lie in my bed or in a very hot bath and eat a pack of painkillers every day, to try to feel better. At school I spent most of my days in the school nurses office.
At that time I had a boyfriend. I had tried to have sex, as my environment contained a lot of parties and drinking.
I had never managed to have intercourse. I could not get anything in there. I just thought I was tight and I was a virgin, I felt something was wrong, but at the same time I thought it would happen when I got older and my body grew a little more. I tried several times with my boyfriend, but I could not get anything in, and if he managed to push his fingertip inside, it was awfully painful.
I hung around my BF’s house, as I had some problems with my drinking father at home. As I stayed at my BF’s house, the pain became worse than ever before, so his mum drove me to the emergency doctors. There they needed to do abdominal examination before I could get any painkillers or some answers. I refused. I did not want anyone to look down there. I think I knew deep down something was not right down there and I felt very embarrassed.
After sitting there for a few hours crying and complaining I finally agreed to do an abdominal examination. The doctor went down, made a strange noise and asked if I ever had had sex. Today I actually don’t remember what I said, I remember my BF mother being in there with me and that was the last question I wanted to answer. I think I said yes.
The doctor looked at me and I could tell he did not have a clue. “You are going to the hospital right now to do some checking” he said. “I can’t even get my fingertip into your vagina he said, you have no entrance. I have never seen this before in my life, he continued.
At least I was now given pain killers. At the hospital I got an ultra sound up my butt. They saw nothing wrong (believe it or not) the pain continued. I went back to hospital. They checked me again, this time going through my belly button with a camera. They again found nothing.
I was in and out of pain for over 2 years. The last year was so painful I was disabled from life really. The final time I was in hospital the pain I had was so unbelievable , it took four nurses to hold me tight to the bed ( and believe me I’m the size of a ten year old) giving me morphine directly into my veins, and the pain did not even go away, I only fell asleep. At that point they still had not found anything wrong (!!??) and told my dad that they believed I was imagining the pain. That was probably something else bothering me mentally. It was after the nurse/morphine event the doctors decided to cut me open for a final look, as I was in deep pain and probably looked like the exorcist to them. I’m glad they did. Finally they found the problem, and lord did I get excuses afterwards from the doctors not believing me. What they found when they opened me was internal bleeding. My uterus, due to MRKH, had never developed properly. Instead of growing together and forming with my vagina, it had grown into balls/ lumps and my vagina canal was never developed. At the time I started my period, the blood had nowhere to go so it just remained inside my uterus balls until they were so full that they burst.
I was then sent to the capitol hospital because no one knew anything about my condition at my local hospital. In the main hospital I met with a doctor, who was retired, and was the only one who had seen this before. At that time I was not given a name for my condition. The doctor recommended that I did not take a vaginal operation, but used dilation instead for a better and longer lasting result. So there I was, all alone at 17, sitting at this stranger doctor’s office choosing which dilator I wanted. I took the smallest one, of course. The instruction was to use it at least 5 days a week at an hour each time minimum.
And so my MRKH journey really started. They removed my uterus, since it was broken anyway and, the pain began to go away and I was left on my own. No counseling or any follow up from the doctors other than taking away the stiches after the uterus operation. My scar is still visible, 18 years later.
The emotional part of MRKH was without a doubt, not even a topic when I was diagnosed. They hardly knew how it physically worked.
The feeling of losing not just one, but two very private and beautiful things in life; a good sex life and having your own babies, was the hardest things I’ve ever went through. I felt very alone and still don’t feel like a complete woman, even though I have kids because I’m a foster mum and the best man in my life.
Being so young and dealing with youth; when you’re so focused on sex, and then have this condition made me have very low self-esteem. I was never able to have intercourse or do anything sexual without it being painful. I started to hate sex. Also the combined stress of telling in a new relationship and figuring out how he will take it, how big is he (yes size matters, the smaller the better) and so on. Also, everything else was functioning normal, so of course I got horny and every time it just ended up being painful and nothing like I imagined, turning sex more and more into something negative. The overwhelming emotions and feelings you get with MRKH and the lack of support is one of the motivations I have for getting the condition known in my country. There is still hardly any information about MRKH in Norway. I was told one in five million have this condition, so for many years I felt very alone (we have 6 millions in my country!) Ten years after, now being 27, I finally got a name for my condition (and finding out one in five thousand had the condition, and that shocked me a little, it meant there were a lot more girls out there probably sharing the same feelings and felt alone. I had a new appointment to check out how MRKH had developed and if operation was something to consider. I was 5 cm deep, so going ten years with only 5 cm was difficult. If I was horny, it would go deeper, so say 7-8 cm. The doctor felt that was good enough to tell me not to get the operation.
It has taken me 15 years to be where I am today. I can enjoy sex and its not painful, its good and I can enjoy it instead of dreading the next time I had to have it again.
My man also is not the biggest so we fit perfectly together, and it’s good every time. This is the first BF I had where it is no pain, and feels like I finally have won over MRKH.
I’ve learned about MRKH, and I continue to learn. It can affect many other things like the heart, ear and kidneys. There are also many variation in MRKH, some have a full vagina and defect uterus, or no vagina but a functional uterus, some have none but we all share the same feelings around it is my belief.
What I have learned in the end is that we are just as much woman as all those without MRKH. We can enjoy sex, and we can have children, we just have to work harder to achieve that. It may seem unfair at times, but as we cannot change what’s there, we have no other choice but to find the best way living with it. Also, help enlighten doctors and the world about it so the next generation of MRKH girls can have a better and more knowledgeable medical staff to support them.
It’s easier as you get older, but it is hard when you are still in your youth and dealing with this. It’s during your youth that you need the best follow up care that doctors can provide.
I had my first clue that something wasn't quite right in the 7th grade, when all of my friends were getting their periods and we were learning about female anatomy in health class. I dutifully followed my health class teacher's instructions and looked at my pubic area in a mirror. Not being an expert, I just figured that everybody looks a little different, so I didn't think too much about the fact that all of my parts didn't exactly match the picture in the book "Our Bodies, Ourselves."
There were a few other clues, mostly involving make-out sessions with some boys that left both of us feeling kind of confused and awkward, but nothing monumental. I continued along through junior high and high school pretty normally.
When I turned 16, and still hadn't gotten my period, my parents and I thought it was time to find out more information, and make sure everything was okay. This was especially urgent, because I was planning to leave for a year to be a foreign exchange student in Europe.
The first doctor who examined me said "Well, she has a vagina, but her hymen is completely intact." I thought this was kind of weird – was there another possibility? Of course I had a vagina!
She then "confirmed" this fact by managing to insert a q-tip into what I now realize was either my urethra or my dimple where my vagina should have been. I'm not sure which, but I do know it was extremely uncomfortable. Luckily, this doctor thought I should see more of a specialist, and recommended me to her college professor.
This doctor, whose name I have forgotten, only had to examine me for about 2 minutes to immediately recognize the problem and diagnose me with MRKH. He sat down with my mom and me, and led off with "In the 3rd month of pregnancy…" (Cue panic on the part of 16-year-old me…I'm PREGNANT?!?!?).
So, in a funny way it was actually kind of a relief when he went on to explain that some of my organs hadn't developed normally, and that I was missing a vagina, and most likely a uterus and one kidney as well. MRIs confirmed this…and then I pretty much got on a plane to Belgium with the instruction to avoid contact sports (only having one kidney makes the risk of injury too great) and ignored the whole thing for a year.
I returned home for my senior year of high school, and scheduled surgery for the summer between high school and college. I don't recall discussing other options with my doctor, so I'm not sure if dilation was an option for me. I had the McIndoe procedure, using a skin graft from my right buttock.
I don't know if this is common or not, but my scar is actually heart-shaped, and I have learned to love it, but at the time it was the most upsetting side effect of the surgery. I actually had a second follow-up surgery to help minimize the scarring, but it didn't really help. Like I said, I've gotten used to it, and it's just part of who I am now. I really hadn't thought about it until I sat down to write this story.
I spent about 3 weeks recovering from surgery, and had sex for the first time 2 or 3 weeks after that. It was my boyfriend's first time, too, so it was just as awkward, fantastic, strange, loving, and uncomfortable as I imagine many young people's first times are.
I broke up with that boyfriend shortly after going away to college – oh! those long-distance relationships! – and went on to have what I think was a pretty normal sex life with my new boyfriend (who ended up being my current husband), but with an added bonus – I couldn't get pregnant.
So, while my friends and sorority sisters suffered through painful periods, horrible mood swings, pregnancy scares and a few had to make the extremely difficult decision to have an abortion, I was pretty much free and easy. My boyfriend and I spent what would have been tampon and condom money on beer and tacos, and life was good.
A brief word about sex: I thoroughly enjoy sex with my husband, but it's not without a few quirks. I have some trouble creating my own natural lubrication, so lube is a must. Luckily, these days, there are lots of brands to choose from! And, I have a tiny spot of scar tissue at the deepest point of my vagina, which I am currently treating with estrogen cream and a dilator. I also don't usually have an orgasm through intercourse only, which is normal for most women, not only MRKH girls. None of these is a big deal to me, but I want to get them out there for others who worry they're not normal if they have to make similar "adjustments."
This feeling (the beer and tacos – not the pain from scar tissue) continued through my twenties – we got married right out of college, and had an amazing time with each other…and then our friends started having babies. Suddenly, everybody was pregnant or trying to get pregnant, and I was on the sidelines.
I have always considered myself blessed for finding out at such a young age that having kids was simply not a possibility, and that I didn't have to suffer through years of fertility treatments or miscarriages, only to find out too late that I couldn't have a baby. (Again – I watched many of my friends go through this as well, and my heart bleeds for them). But, what I told myself intellectually and how I felt when I saw my friends with their babies were miles apart. It was a tiny little bit of utter devastation every time.
Fast-forward again to 3 years ago when my husband and I adopted a newborn boy who we named Robby. He is the most amazing little person I have ever met, and I could go on for pages and pages about cute, smart and sweet he is, and there is no doubt at all that he is completely my child, and that I am 100% his momma.
All in all, my MRKH story has been a happy one. I have an amazingly supportive family, a great sex life (or as good as you can have when you have a preschooler – we really need to put a lock on our bedroom door. I just know he's going to walk in on us one of these days and be traumatized for life, LOL), and a child who I can call my own.
I wish you nothing but the best as you go on your own journey, and hope that my story provides some additional encouragement andreassurance.
© 2012-2013. Beautiful You MRKH Foundation, Inc. All rights reserved.