The Missing Vagina Monologue PDF Print E-mail

Enjoy our special bonus segment, The Missing Vagina Monologue,  as it takes you through the psycho-social aspects of diagnosis and treatment for vaginal agenesis; and the questions raised by bodies that don't conform.   

by Esther Morris Leidolf

Recorded at BevCam, Beverly, MA, on March 15, 2008

Comments (147)
  • yren  - discharge
    the doctor said that i have no uterus and vagina. but how come that there is a whitish and sticky fluid comes out in me?
  • Amber  - If you need to talk
    If you have questions feel free to email me. Gerhart_amber@yahoo.com
  • Deedee  - Runs in my family
    Going back 100 years, this condition runs in my family. 50% of the females in my family were born this way. It's shocking to find that it effects others too, out side of my relatives. I've always known about it because 2 of my 3 older sisters have it...now 1 of my 2 daughters. I had them both tested at birth. She and one of my great-nieces had the surgury when my daughter was 6 weeks old to remove their internal non-female parts. I told her about her situation when she was about 6 years old so it would not be a surprise later in life. She is now 11, beautiful, fun, funny, intelligent, and very normal. She jokes that either me or her older sister is gonna have to carry a baby for her. I just say "you better get a good education and job because adoption is not cheap". My point is this...my baby girl is normal and will grow up to be a beautiful woman and eventually a wonderful mother to some deserving deserving child that needs a family to love them. This is not a death sentence. She is special. Just ask my sisters, aunts, or any of their adopted kids or grand kids. Love you as you are and everyone else will too!!!
  • Jaya Ghosh  - Married women with MRKH
    Hi All, I am also suffering from MRKH . and it diagnosed after marriage.
  • cha  - hi
    hi, i'm from the phils as well..i wasn't really told that I have mrkh but i'm pretty sure i have it. when i was 16, my mom and I went to OB-Gyn because I was not menstruating, and I had ultrasound and eventually MRI done. They didn't really tell me the official result, and I was quite scared to even ask, and I figured it out eventually thru piecing it together plus internet and books. It was all blurry to me then but I remembered my OB telling me that there are other ways to have sexual activity (which is quite insensitive of her, imagine telling that to a teenager) and she had a patient who eventually got married. It was really devastating for me(even until now) and I remembered after having my MRI, I was really emotional that I cried but my mother hushed me because she doesn't want me to be seen by my dad crying because of this, and after which I tend to keep my emotions at bay. I don't blame my mom though, it's really hard to deal with this kind of problem that is literally life changing, and my mom is not that assertive. Questions of 'why me?' occasionally come up, feelings of jealousy and resentment because of this condition are inevitable, but I just have to deal with it. I never had a boyfriend because I have this thinking of it being pointless because I can't be intimate with him and I can't have children, and I feel that I'll be selfish to involve someone else of my misery of not having my own children and depriving him a chance to have his own kids. I don't want to sound negative though but I'm just being realistic. I had come to terms with this condition however there are moments wherein I just cry and ask God what kind of life He wants me to have, though I still feel blessed because He provided me enough blessings to be thankful for. I'm 27 and I just had my MD license, and though MRKH may deprive me of having my own family, it won't stop me to pursue other dreams.
  • Anonymous  - hello..
    from where r u her in the phils?
  • Don  - Hi.. Can we talk?
    Hi.. I also have this bullshit condition.. Im 17yo when i finally found out why im not mentruating. My OB explained but i resist to listen and accept it. And since then I have this question of "Why me?" Im from Phil.... Im surprise that there are few cases of MRKH in our country...
  • yren  - how to do this right
    its been 5 years now since i was diagnosed having MRKH syndrome. i want to marry and have kids someday and have a happy family but i'm afraid i cannot do that anymore. i had boyfriend before and we had intimate moments together where i told him about my condition. he said he can accept about it but it came to a point that i cannot feel that he cared for me anymore because of my condition so i opted to stop having relationship with him. now i don't know what to do because every time i thought about my condition i feel hopeless and self-pity..
  • Kitty  - Same emotion.
    For almost 8years now since i found out i have this syndrome... I also feel the same way.. Helpless.. Hopeless.. More self pity at times.. Why me? While every other girls can have a happy family. With their own children? And worst, why other gets just wasting this opportunity... Those gilrs having abortion, prostitution? And why people from this syndrome is suffering? Its just TOO UNFAIR right?
  • Kareena  - Where r u from?
    Hi, Where are u from in India? We made an MRKH India group u can join there.
  • Niranjan  - hi
    Hi ... friends I am in chennai
  • Kira
    I'm 18 I found out when I was 13 that I have MRHK believe it or not I just found true name of it here, I was always too scared to look it up. I feel like this bothers me everyday or everytime I get emotionally attached to a guy this gets in the way, and it beats me up everyday.
  • Anonymous
    i know the feeling, I'm 25 and still feels the same way
  • Lily
    How do women with vaginal agenesis pee if they have no vagina ?! I'm very confused someone please answer , I am very curios. Not trying to make fun of this syndrome or defect.
  • Anonymous
    Women pee through their urethra, it's another opening aside from vagina. Vagina is where the menstrual blood flows and where sexual activity happens. That's what MRKH patients are lacking. try to google lily
  • priscilla marcum  - I just found out that i have MRKH
    I just recently found out about 5 months ago that I have this syndrome. I always knew that something was wrong when I never had my period like my other friends. But I just kept pushing it to the side until I got in a serious relationship knowing he wants kids someday yrs from now I knew I now had to find out what was going on before I went further with this relationship. I am 20 yrs old and I my doctor said I was born with no uterus, cervix, fallopian tubes, and no vagina. I was shocked when I heard no vagina I didn't understand because I sadly lost my virginity unwillingly when I was 15. But I was after that sexually active and my doctor said that I can climax still normally cuz that is just my hormones/caught up in the moment. But it always hurt n I never understood why so I was confused where my bf was putting it during sex. the doc said its just tissue and the procedure he wants to do is putting a ball spring inside of me n keeping me 7-10 days n it opens more n more each day to create an opening (substitute vagina) as he said. but what scares me is he said its only been done in Europe so he has to get it approved first. But I don't have to have it he said since I have figured a way to be sexually active if I am happy with how things are then its up to me. But it does hurt me a lot sometimes & my bf says it hurts him too so I want to do it because its not fair to him to hurt too, I want him happy because he is still choosing to be with me knowing we cannot have our own child. Also, has anyone with this been able to have overies & eggs to have a serogate mom? please email me anyone and help me know what to do. my yahoo is priscillamarcum@yahoo.com or add me on facebook at https://www.facebook.com/lilangel.lovesu Thank you for taking the time to read this! (:
  • sona
    Dear poonam Hello, I am 41 years old and am suffering from MRKH. Please feel free to contact me.my email id is ursona04@yahoo.com. I am based at Nashik....
  • Puneet Kaur  - vaginal agenesis
    I am 22. I too have been suffering from this problem. i came to know about it when i was 16. uterus is absent. vagina is shallow. doctor told me to have surgery to deepen the vagina. she told me to have surgery 6-7 months before marriage ( or sexual intercourse). actually i am highly scarred of operations and surgeries. i wanted to know whether it is painful? isnt there any other remedy? i want to marry one day. bt when i think about surgery i feel not to marry. i wanted to have a baby. bt i know one day i will adopt a baby. so this thing do not bother me ryt now. the thing which bothers me is whether i ll get a partner. and the other thing is OPERATION!
  • sona  - Hello
    Dear puneet, Hello, I am 41 years old and am suffering from MRKH.You can do dilation there wud be no need of an operation please meet a good doctor. Please feel free to contact me.my email id is ursona04@yahoo.com
  • yamini chopra  - yamini chopra
    Hi!!! Its yamini chopra n m 18 now n last year i discovered that I have no uterus in my body and i have healthy eggs too but the problem is of having small vaginal opening . recently my boyfriend and i went emotionally for sex!!! Everything was alright , even i could get wet but when he tried to insert it , it was so damn painful and he can't put it inside!!!!!! Plz help me out that i must go for any enlargement surgery or is der any other alternative!!!!
  • Dana  - MRKH syndrome
    Hello. My name is Dana. I'm 28 years old and I also found out at 17 years of age that 'something' was wrong with me. I went through many of procedures and tests yet all of the doctors were stumped. It was a very hard time for me at that point in life. I didn't understand what was going on or why they were doing so many tests on me. They were nice enough to reassure me that I was 100% female after they did the DNA test. Ha! Wow. That's all that went through my mind. It was sort of devastating to hear those words being I had no clue what was going on to begin with, with my body. I was 24 before I had gone back to the doctors on my own once I had insurance to chase the answers to all of my questions. I was referred by my local family doctor to an out patient clinic based from the University of Chicago. I walked in determined to figure out why I wasn't like every other female that I knew and walked out with my answers. I brought with me all of my medical files from when I was 17 and all of my test results. The doctor pretty much took one look at my files and told me the bad news. It broke my heart. I have always been the maternal type and to find out that I will never be able to bare a child devastated me. I haven't been back to a doctor since... Yet every single day I do struggle with the situation. I still have so many questions though and would greatly appreciate if anybody out there with this same syndrome could give me some advice. I'm curious as to.... CAN A FEMALES BODY DEVELOPE OVER TIME??
  • rachel  - let me know
    is that possible having small breasts with MRKH syndrome ??
  • Lisa  - MRKH and breast size
    Development (or lack there of) of the mullerian duct has nothing to do with breast development. The systems responsible for each are seperate and the development of one occurs invitro while the development of the other occurs during puberty.
  • rachel
    is that possible having small breasts with MRKH ??
  • rachel  - wanna know
    is that possible having small breasts with MRKH ?? plz let me know
  • suzy q  - MRKHS
    I to was born w/o a uterus and a vagina/cervic.i found out at 16 yrs old I was devistated, I had reconstructive surgery when I was 18 on my vagina to make it longer by useing skin graft from my butt I felt so alone and scared and sad I had to watch my sisters have babys but when I was 32 I was determined I wanted to be a mom so I adopted a baby girl on my own from india she is now grown and just grauated from college and I believe I was born this way because god knew I was special and I would be able to love any baby as my sisters told me they would never be able to do what I did but it was the best thing I ever did and made a difference to a little girl I love so much. I have had a good sex life I had to use ky alot as when i grew older things got drier When I was 47 I went through the change and had bad hot flashes. but now am 56 and I can say dont give up you can have a good life only you have the power to change your life to make it better and thats what I did ask me any questions I will be happy to EMAIL YOU
  • Kutty
    yes, please email me. oink_26@yahoo.com, (I intentionally make fun of my account as a disguised, not all of my friends and relatives know about my condition) i need someone from this group to talked to.. I have so many questions to ask, or any clarification and suggestion. i know only from this group can answer and understand me... I badly needed your word and will be very much thankful if you lend me some time.. Your surgery, how long does it take? Is it that necessary to be a normal? well, i consider myself as not. Im not. Too bad. But its how i feel... Thanks alot! god bless us.
  • sharon
    I can not belive that I am not the only one in the world like this. it felt like it I am crying my eyes out right know. I to was born w/o uterus and a vagina/cervic and found out at 15 years old. I was devisted. I had reconstructive surgery when I was 22 years old on my vagina to make it longer by useing skin graft from my butt. it took me all time to find someone like me. I am 49 years old.
  • Reny Panicker  - Ren P
    I also have MRKHS syndrome and sometimes feel why God chose me for this, because i love children and i feel something missing in me when i see my fellow people getting married and bearing children. But don't you think that there should be a partner in life in your old age. What if ur daughter gets married and then again u'll be alone. Please advice me whether I should enroll myself in shaadi.com and reveal my health status as i want a partner who can stand by me with my drawbacks. Reply soon.
  • jayanna  - do what makes you happy
    All of us here with MRKH we meant for more than procreation- and there are men out there to love us for that- I advocate to do whatever is necessary to make you feel sincerely good about yourself.... There are also men in this world that feel they are not meant for it either- be honest with yourself and those whom want to genuinely love you!:) hope this helps
  • Shaji Thomas
    yes.. you can and you should..i've seen your shaadhi profile and expressed my interest on you..pls contact me: shajitp71@gmail.com God bless Shaji Thomas
  • jayshree  - same problem facing
    I m facing same problem. i am 29 years. i too was feeling along.married to a guy he is such a great man knowingly every thing he accepted me. but we cannot enjoy our sex life.bcos i have closed vaginal opening.my younger sister got married and she has a baby.i 2 want to become a mother and a normal house wife.i know you will surely suggest me the right bcos you to felt the same pain.
  • anonymous
    HI Jayshree.. by your name it appears to be an Indian... great that U r married ... To which part of India U belong to ? There r doctors in India who can help U ..
  • Nick  - My gf has same syndrome
    Hi Jayshree, My name is nick. My gf has same syndrome and when she told me abt this I was really shocked. After reading through this blog, I understand how tough it was for her all through her life. We decided to get married after she goes though her neo vaginal surgery. I was very optimistic that it would all go through fine. Her surgery was done but had some complication and vagina could not be dilated and closed ultimately. More then anyone in this world she is devastated. I want to marry her but I fear would I be able to continue being her husband all through our life. I know I love her but what would happen when it will be tough for me. I was always looking for a couple like you to guide me. Can you or your husband please help me with this. How or what should I do to make sure I never ever get this feeling of leaving her at any point in my life. You can please explain in detail if not here to my mail I'd nik30m@yahoo.com Warm regards, Nick.
  • roshni  - Vaginal Agenesis
    Hi, I am pretty sure that i have a well formed uterus as I have undergone several ultrasonographies on various occassions thanx to various physical issues and my uterus has appeared to be alrt each time. I also have regular periods. Menstruation had not begun late but I do not have a vagina/cervic. i am not sure what I should do. Do I need to undergo a surgery? I am 25 and have a very loving boyfriend. is it possible to have sexual intercourses with him? Is the surgery affordable?
  • Kutty  - hi.... i also have this devastating condition
    Hi everyone! I was diagnosed with this MRKH when i was 18. That time im in my college, and my mother is dying.. So i didnt pay attention on my self. But rather with my family and with my mother who is undergoing hemo-dialysis. (She passed away 2009, same year i was diagnosed) Im now 23 y/o. Almost 5years ago. Actually, im trying to move away with my situation. Until i had a boyfriend recently. I feel so alone and pathetic. I came to the point that i ask and blame God for giving me this situation. So devastating. The first time i heard about my condition, i can't react. Im stunned.. The doctor gave me so many advise but i cant understand.. I feel like i want to scream, and get angry.. i dont know what to say and how to react, then suddenly tears come out from my eyes. My Aunt hug me as if i have only few months to live.. I isolated myself, i had low self esteem.... Years back. Now, 2012. i had boyfriend. and i told him about my condition... At first, he's stunned. Shocked. Then i explained to him everything about my condition.. And Im so glad he still love and accept me. We actually crying at that moment.. Knowing that we're planning to have a family someday. Guys, at this point. I dont pay attention to undergo MRI or examination other than ultrasound. But im planning to. I always have a backache. I also diagnosed with Mild Hearing Loss. Im scared of all this things happening to me. Im from the Philippines and we dont have those high technology for this kind of condition particularly MRKH. As far as i known, very rare in my country have this kind of condition. Please feel free to comment an suggest if any.. Many thanks to all of you guys. You uplift my spirit.
  • jean
    I was diagnosed when i was 18.I'm also from the Philippines. I'm now 26 and married. I'm sexually active and aroused, but unfortunately my husband is not satisfied with me. I wasn't able to consummate our marriage. I have bought dilator set at vaginismus.com and use it two times a day for about 20 minutes. And I can almost insert the number 3 dilator.
  • Kutty
    hi.. may i ask if you had surgery for some reconstruction of your vagina??? hmmm.... as you mentioned your sexually active and aroused. a big help for me if you give some impt info. Thanks a lot!
  • Anonymous
    I haven't try any surgery. I can send you article about MRKH, maybe you can relate. I feel the same way too as you are. But don't lose hope, have faith. God has a better plan for us. Just pray always.
  • Puneet Kaur
    i am also sexually active and get aroused sometimes. but i dont want to have the recontruction surgery. surgery thing is so scarry. :(
  • charity casey  - hi
    im new here from belton tx,and i have mrkh
  • jayanna  - you are from belton?!?!?!?!?!
    I too am from Belton and have been diagnosed with this condition! I would love to get in touch with you! I find this very odd!!!!!1
  • Betty Lou  - I'M FROM BELTON TOO!! THREE!!!
    Who woulda thunkit, a bunch of us Southern Belles dealing with this!!! Ladies I luv ya and I feel ya, I feel soo much better I'm not alone.. I just looked at the moon we're all sleeping under it. All us special ladies.
  • jayanna killingsworth  - thrice times you say
    Well hello Betty Lou! You are definitely not alone! We really need to all get together- I have reached back out to Charity after seeing your post- so much has been happening in this last year since the both of us connected on here. I do hope you respond back this post or you can find me on facebook- type in my full name, cant miss me, I am the one and only. I saw that amazing moon :) Take care darlin'
  • Laura Ann  - My MRKH story and complications
    Hi my name is Laura I am 29 years old, and like many girls with MRKH I went to the Obgyn at the age of 17 to figure out why I had not started my period yet...I too was left on the table with my legs in the stirrups while the doctor left the room to look up my condition. I was in the custody of my older sister at the time, and when the doctor returned he told us that I had Mulerian Agenesis and that I would never have children or a period. I had NO reaction I don't even remember how I felt about it at that moment. I do remember my sister bawling hysterically and hugging me as if I had just been told I had 6 months to live. I had to follow up with another doctor who was a specialist and I had several tests run on me and was poked and prodded as most of us have been. It was discovered that I had one ovary, no uterus, no fallopian tubes, and one kidney that was atrophic. Since then, I have discovered the severity of my hearing loss and have also discovered a small SMALL hole in my heart which is said to occur in 30% of mrkh cases. The hole or murmur will more than likely never cause me any problems. I have also been diagnosed with SEVERE arthiritis that is theorized to be linked to my condition as well. This is the worst part of it for me. My knees hurt so bad ALL the time, as well as every single joint in my body. An MRI uncovered large cysts in each knee, and a large cyst in my left shoulder. I have no health insurance, so I just suffer all the time in pain with no way to see a doctor for help. The times I have gone to the E.R. out of sheer desperation because of the pain, i was treated like someone who was seeking narcotic drugs to get a buzz, because it was unbelievable that someone my age could have pain like this. Is there anyone else out there with this condition who is suffering with this horrible joint pain? Also when I was 18 just a year after my diagnosis, I was brutally raped by a group of young men who then accused me of being a transvestite (sp?) and beat me severely in their rage at the thought that they may have been raping a man. I also have Post Traumatic Stress disorder because of the incident. I take mild axiety medication for the ptsd, I don't recommend taking it on a regular basis as it can be habit forming. I only take it when I have nightmares or If I need to leave my house. Now, to the posotive note: I have an AMAZING husband who I married last December, I chose not to have surgery but I used the dialtors and it worked GREAT. Not to be vulgar, but my husband has a slighty larger that average penis size, and he is able to be satisfied JUST FINE during intercourse. I only share this to give hope to those who may fear that they will never have a normal sex life. As a matter of fact, the dialator exercises were so effective that he did not even know that I was different until I pointed it out. As for children, I go back and forth on that subject, I get very sad sometimes when I look at my husband and think he will never be at my bedside holding my hand as I deliver our child, I feel guilty that I will never provide him with a child that is genetically his. We will NEVER be able to say: "Look the baby has your eyes, my hands, your nose, etc." He will never rub my pregnant belly and I will never feel our baby kick. But, I believe that God has a reason and plan for all of us. I grew up in and out of fostor homes, I never knew why God allowed me to have such a bad childhood and then to have this condition on top of it. But, now it ALL fits together! He allowed me to go through what I did as a child to instill a sense of compassion and understanding for those children out there who just want someone to love them. If you want a child there is a child out there for YOU! And I believe you were destined to be their Mommy before they were ever even born! It is just growing in someone else's body. The adoption story that we will have someday is WAY cooler than the average birthing story! We will appreciate that moment when we hold our child in our arms SO much more because of the HELL we went through to get to that moment.And I may choose not to have a child at all, maybe I'll just live for me (and that isn't selfish) when you have a child, if you are going to be a good parent, you have to give up your life for that child, your life is not yours entirely anymore. Maybe my husband and I will travel the world and see all there is to see and just enjoy each other. Or maybe we'll have a house FULL of children who would have otherwise been lost in this world, whatever happens, I know I'll be OK and I am BEAUTIFUL and unique and we are SO STRONG! ALL of us with this condition will gain unique strength and sense of self that we otherwise may not have had. I am glad I am ME! And I'm Glad you are YOU! because there is a REASON. We don;t have this condition for nothing, we can learn about ourselves from it, and learn about others, and gain a sense of compassion for people that runs DEEPER than the average person. And that my friends, is BEAUTY. Be proud of who you are! And reach out a hand to those who are still trying to figure out just who they are, help the lost find themselves through the confusion of this disease. Again if anyone has any joint pain caused from this condition please share with me, and if anyone ever needs someone to talk to I am SO happy to oblige! God Bless you all. - Laura contact:lauractl10@yahoo.com
  • Sarah  - i got told i had MRKH
    im a 18 year old girl. Since i turned 15 iv been past from pillar to post with doctors. They told me i had polycystic overies (which explained missing periods). They left it at that for 3 years and gave me metphormin and the pill to treat it. i had soo many scans in that process they realised i only had one kidney. After treating me for 3 years they decided to investigate more and sent me for a MRI scan, i never got any results from this scan but one day a surgen phoned me and asked me if i could make it in for a operation on wed 16th of november, i put college on hold (i was studying childcare) and i went in for my operation. i was over the moon thinking that i was going to get my problem sorted and ill be able to start a family with my fiance. When i was on the way to thearter the surgen said to me " you know what your having done don't you?" i replied "yes, im going to get fixed so i can have a baby", his faced devestated he told me my operation was only to confirm i had no uterus and only 2/3 of a vagina. In that one minuet all my dreams crashed right infront of me and there was nothing i could do about it. my fiance was waiting at the end off the corridor and i had to tell him right before i was going into surgery my heart broke completely. When i come out of surgery i was a total mess, all of my family was phoning me telling me to be strong ill get through it with all of their help. When i got better i tryed going back to college but it was killing me learning about the development of a womens body and the way they carry their children, i couldnt take it anymore so i left. i started seeing a counceller but honestley my family and my fiance are the ones who are helping me through this. Iv only just found out the name of what iv got MRKH, its better having a name to what i have but for me it doesnt make it any easier. This year was ment to be our year, im getting married in june and then we was going to try for a baby, we had names and everything but now its just a waiting game seeing if i can do IVF and seeing if i can find a surrogate mother. Im devestated after this but i just keep telling myself theres worse things in life that can happen. If theres any young girls with MRKH who would like to talk email me at sarahlouisewatts@hotmail.co.uk Thank you.
  • Curious  - mrkh
    I was told 11 years ago that I had no uterus or cervix and would never have children. At the time they called it congenital lack of a uterus. Nobody around me dr's, family, friends knew what it was, why i ended up this way. After a while i learned to just deal with the fact that i am the way i am. The older i get the harder it seems to get to deal with the fact that i will never have children. i decided today to search about this syndrome and found out the correct term was MRKH. It was so great to finally be able to put a name to it, and after further reading they say you can still have biological children through surrogate. I am just curious is there anyone out there that has MRKH and was able to successfully have a baby through surrogacy?
  • Poonam  - All u girls and womens can contact me on
    hey friends you all can contact me on poonamgaud26@gmail.com. feel free to talk on our problem.love you all.
  • Mother who loves her mrkh girl  - From a Mom who loves and accepts her re"mrkh"abl
    Hello lovely, beautiful daughters of the world who just happen to be born with MRKH. My daughter was diagnosed with MRKH this year. I had a feeling something was not quite typical and did some research after she was not getting her period at the age of 15. Her pediatrician ordered an ultrasound. When the ultrasound showed that she had a tiny uterine fragment (the size of a fingernail) I began to search the internet for information. I read the stories of women of various ages who have been diagnosed all over the world with MRKH. I'm so happy I did this. Hearing all of the testimonials and watching "The Missing Vagina Monologue" (available on YouTube.com) made me keenly aware that one of the most traumatizing parts of MRKH is the way that these beautiful young girls are told about the diagnosis. Doctors are only human and can be poorly trained on how to relay information in a sensitive, dignified way. Our pediatrician recommended we go see my own OB/Gyn to be seen immediately for an internal exam. Our pediatrician also gave me the name of Dr Gilliam, a pediatric OB/Gyn at University of Chicago, in case it did turn out to be something complicated. Before my own OB/Gyn examined my daughter, I was determined to get my facts straight, talk to a therapist and ensure I would deliver whatever my daughter's diagnosis was in a calm,sensitive and educated way. I contacted my ob/gyn and told him in advance NOT to inform my daughter verbally of anything he finds while we are in his office. (My daughter and I both had to sign legal consent forms before I could even tell the doctor this over the phone due to privacy laws!) I wanted to lead with the positive. But in order to do this I needed to know all the facts and talk about my feelings with a counselor first. I knew I would have to fully understand all of this for myself before I could explain it very well to my daughter. I am so glad I did this. After my male ob/gyn examined my daughter he seemed to have a panic attack, went blank faced, got up and made a quick getaway. The next day he called me on my cell and didn't even ask me if I had time to talk. He just blurted out his diagnosis which he read as if he printed it out on a cue card. (I'm grateful I wasn't in the car or for that matter, at the grocery store!) He blurted out that my daughter had vaginal agenesis and that she was born without a complete vagina, most of her uterus and yet still has her ovaries. (She does). He said, "I was worried she had testicular feminization and so am glad to find out she does not." He said that line twice! It enraged me. I thought, "If my daughter had feminine testicularization I would adore her and still think she is every bit as perfect as I feel she is right now!" Anyway, he INSTANTLY went off on a rant that "thank goodness we live in a major metropolitan area and I would recommend a plastic surgeon." If this doctor would have said all of this to my beautiful, fresh faced, innocent 15-year-old daughter I may have pummeled him right there in his office. (Mother lionness instinct!) The nerve of him to instantly assume that I or my daughter would want to 'create' a vagina right now! The secret to life is not to ensure we look like everyone else! A 15-year-old girl who spends all her time laughing, studying, playing sports, shopping at the mall and watching Spongebob does not need to fit in a trip to the plastic surgeon to surgically create a gap to accommodate a penis! The nerve of that doctor! Anyway, I was stunned when the doctor first told me that afternoon over the phone. Although I was suspicious of her diagnosis, the truth was finally clear. I began sweating. I had a rapid heart beat, my ears were ringing and my chest was so tight. All the while he was blathering on about how grateful he was that this was not 'feminine testicularization'! Great!!! RA RA RA! (read sarcastic tone please.) I finally said, "I have read about this diagnosis called MRKH." (At that time I didn't know as much as I do today about MRKH.) "Oh yes, that is what she has. In my 18 years of practice I have never seen a case." I was so angry and stunned by his poor delivery! Truth be told, I felt like choking him. (I forgive him now and actually pity him that he made such a fear based delivery.) I knew I had better give myself some time to figure all of this out before talking to my daughter about it. Kids read our reactions to know how to react to something. I just had this feeling that everything would be okay as long as I got my bearings first with my husband and we advocated for our daughter. Talking to a therapist beforehand helped me become aware of some of the feelings I was having. I felt grief that we couldn't share what other mother/daughters share physically. I felt guilty that I had done something wrong while she was growing inside me. (Illogical, but it was what I felt!) I felt so sad that she was going to be sad. I felt angry that I couldn't protect her from pain. I talked to a therapist over the phone (included in our health plan) who was so helpful. She said I was going through a grieving process much like that of a loved one dying. I privately mourned all of this while my beautiful daughter was at school, running cross country, laughing with her friends and doing her 4-5 hours of homework a night. I didn't want her to see I was suffering because that's the last burden she needed to carry. My husband and I grieved for our baby privately. I knew I did not want her to read that I was afraid. I needed some time to get used to all of the information. It took me several days and I did have some help along the way. I talked to another mother who I found on the AIS/DSD.org website. Her daughters both have a different genetic, sexual disorder(unlike MRKH which is not). But nonetheless she was so incredibly helpful because some of the biological characteristics of our daughters overlapped (no uterus, no vagina) and certainly many of the emotional effects were similar as mothers. I will never forget how helpful this mother was to me. She called me and talked at great length about how she felt and it comforted me so much. I asked her when I should tell my daughter about this and she said, "how about right now? It's nothing to be ashamed of." I also found a very special pediatric gynecologist named Dr Melissa Gilliam at The University of Chicago Hospital and she turned out to be a real angel. Although I did wait a few more days to gather all of my information from doctors and psychotherapists I knew I was ready to tell our daughter. My husband and I actually role played and hashed out how I would tell her. Dr Gilliam suggested I tell my daughter alone. She said, "Imagine how you would feel if the CEO and CFO of your company walked into your office and shut the door. You'd think you were being fired!" I felt she was right. My pediatric OB/GYN suggested I may be putting too much pressure on myself to get the verbal delivery right. She ensured me of a few things that made me feel so much better. 1-My daughter didn't just "get" MRKH, she was born with it and has had it her whole life with no problems. She is the same lovely person she has always been! 2-There is really no need to do anything physically right now (at the age of 15). Nothing really needs changing. (Except getting used to the diagnosis!) 3-There is no need for surgery, ever. When she is ready to be sexually active she can learn to dilate and can have a perfectly normal sex life. 4-She has a clitoris and can achieve orgasm just like anyone else. 5-She has ovaries and therefore produces hormones normally and has all the physical characteristics (breasts, pubic hair, hips, acne) as any other woman. 6-She has a healthy sex drive since her ovaries are healthy and producing normal hormone levels. 7-She can still have biological children in the future if she wishes to use a surrogate mother. Since she has two ovaries, she is producing eggs each month just like any other woman. Once I understood that my daughter would be able to enjoy a loving, intimate relationship and be able to have children however she wishes (if she does indeed wish to!) I felt so much better. I knew she would have obstacles because she was born with this unique biology. But I also knew that this obstacle was not life threatening, was not going to get worse and was not going to prevent her from actively pursuing anything she wanted to do. I'm so grateful that God gave me this loving, beautiful, smart, fun, inspirational daughter. What if, instead of having an incomplete reproductive system, her entire body had been incomplete? What if I never had a chance to raise my perfect, gorgeous girl? When I told my daughter, I started with sweaty palms and a deep breath. I told her the facts. The tests showed that she has normally functioning ovaries,but an incomplete reproductive system. She produces eggs so she can have a biological child, but she wouldn't be able to carry a baby inside her body. I told her she also does not have a fully developed vagina but doctors have figured out lots of ways to help and we will figure this out in time. She cried at first and said, "You mean I'm not getting my period? What? Mom, no!" My heart broke. I held her and told her, "I know, it stinks. I'm so sorry. It's so hard but I am so grateful that there is nothing life threatening wrong." And that is the truth. Life since that day has not been easy. Our family has been through a lot. Life won't be easy in the future but whose life is? I'm just so grateful for the chance to raise my unique,gorgeous girl. Hug,loves and peace to all the girls and their mamas out there. And if you are a MRKH girl out there who doesn't have a mama but need one to talk to about this, I am here for you too. :))MerkyMom
  • Laura Ann  - AMAZING MOM!
    Your daughter is so lucky to have you! I was alone in my journey for the most part when i was diagnosed. The most helpful thing my sisters did for me, is reminded me that while having a baby is a BEAUTIFUL,WONDERFUL thing, it is not the most important thing a woman is to do. I see all the time girls that can't concieve over-glorifying motherhood. They forget the mundane part: Diapers, screaming, and not a second to yourself at times. Maybe this is just my way of coping with the heart-ache. I'm sorry if thats rude for me to try to minimize motherhood. On the other hand, If you are religious a scripture that always gave me comfort was "rejoice O' barren woman! for you children are many!" Anyway, I was really just wanting to comment to commend YOUR mothering skills and remind you how precious you are to your daughter...Oh what I would do to have had a supportive mother like you!
  • adhavan  - thanks merkymom :))
    I am 21,my girl is 18 she just said about her mrkh condition,first i reacted less,I acted like its ok. but I was cryin alnight and after readin this I am so happy and very much relaxed.I ll marry her and I ll treat her like a queen. :))
  • linda a  - mrkh
    When my Daughter was 14 she was diagnosed with mrkh-the whole works-the horseshoe kidney-no vagina-1 ovary-and scolosis. She took it better than I did. A few weeks later she told me she was "gay" which I figured was a cop out but accepted what she was saying. She is now 26 and has a girlfriend. She is stikeling beautiful inside and out. She adores children and works with the handicapped. She had the 10 hour scolosis surgery when she was 9 and has the rods. She never complains OR talks about her condition. Boys are very attracted to her and she considers them friends and doesn't let it go any further. My heart aches for her, but the subject is taboo for "us". I found a DR. here in baton rouge who has done the surgery once and said it was successful...whatever that means...my question is why was this never picked up in all her exams as a child? Surly having only 1 functioning kidney would have showed up as many mri's she has had preceeding her scolosis surgery! I can't help but blame myself in some way...she was a triplet and I lost the other two early the pregnancy. She lives in Tx and at the time it was almost impossible to find any info on this topic! I'm just venting...girls don't give up! I know that is easy for me to say...someday this will not be so Taboo...and more can be done to help these special girls...as to the guys who leave their girlfriends I say SHAME on you! start thinking with your heart for a change and not always your DICK!...MOM
  • Jayanna Killingsworth  - Does your daughter still live in Texas?
    I grew up in Texas and I too was diagnosed as a teen, not to the severity of your daughter though. My mother had the same guilt reaction as you- I had a dream when I was 12 about it. However from years of having this I have found it almost impossible to come across a physician that actually knows what it is and does not dismiss my claims and concerns. Before I moved from Texas I found a specialist in Houston that was fantastic. Creighton L. Edwards, M.D Baylor College of Medicine Texas Medical Center 6550 Fannin Houston, TX 77030 713-798-750 I am honestly thinking of moving back to Texas just for him! I love to hear other women who have embraced themselves for exactly who they/WE are!!!!! I truly believe that we were her for more than procreation! All the best to you both Jayanna
  • Rhonda Evans  - I have MRKH and am in Houston too
    Does Dr. Edwards still practice at Baylor College of Medicine? I'm looking for a phyisician that is familiar with MRKH. When I call an OBGYN's office they don't know what I am talking about when I say MRKH.
  • Jayanna
    Yes Rhonda I do believe that he is still practicing. here is the link to the resource page I found him in. I hope this helps.... http://www.mrkh.org/Resources.html
  • RO  - LOSS OF HEARING???
    IT IS MENTIONED IN THE VIDEO. DOES ANY ONE KNOW ANY MORE ABOUT THIS?????
  • Thomas Lundmark  - Eva Braun
    It might interest you to know that Eva Braun also suffered from MRKH syndrome, as I am sure a lot of other prominent women did and do. More on Eva Braun can be found in my new, authoritative biography "The Untold Story of Eva Braun." Keep up the good work Thomas Lundmark
  • jary  - hi there..
    its been a long time since i put a message here..i am now in the philippine police force and i thanked God that i entered this service without having a problem concerning my condition..we can still have a n ormal life despite our situation..so girls out there who have a condition like me..dont lose hope..God is with us all the way..
  • adekmanja  - MRKH
    some advise to all the girls/women who have MRKH. having MRKH is not the end of the world. You still can have friends, enjoy your daily life you can travel the world. compare to blind ,deaf or disable person. So enjoy your life as much as I do. Nobody is perfect! Do not feel down just because you cant have husband, period or children. Life must go on either you are perfect not. May god bless all of you.
  • Khary Mateo  - i need HELP
    I'm Khary,31 y/o from the Philippines. I thank the Lord that I was able to find out this site where I would be able to share my experiences as an MRKH patient and hoping that you could extend financial assistance in my case at present. I am currently confined in the hospital and still raising funds for me to be discharged. I recently had my 2nd operation couple of days ago after the 1st operation I had last Nov2010. That was the 1st time I had known that I have MRKH. However,mine has a different presentation than most of you,guys. I have type II MRKH Syndrome. I do have a blind vagina,meaning upon internal examination,admits 1 finger with ease,length is 4cm with no identifiable cervix. Also, i was diagnosed to have heart abnormality; which is enlargement of the heart,horseshoe kidney, intestinal abnormality-outpouching of the small intestine and skeletal abnormalities.I was admitted in the hospital last november where my gynecologist diagnosed me to have MRKH which at first I came to seek medical attention for which I thought of just a simple UTI because I have painful urination and Im having high fever then. Upon series of tests,there they came up with the diagnosis which when I found out a rare condition and 1st in the Philippines or Asia. Worst is that I recently got married then at August of that year before my hospitalization. Lucky that I have an understanding husband who accepts my condition.I went thru an exploratory laparotomy, cystoscopy,vaginoscopy,myomectomy and attempted cervicoplasty. However,the cervicoplasty failed.Here in the Philippines, reconstructive surgery isn't quite possible due to facilities and expertise of doctors as well. Myoma were removed and my gyne decided to retain the uterus and ovaries for possible invitro fertilization because Im still young and many complications would happen if I'd go hysterectomy.I had to undergo monthly of GNRH therapy. Unfortunately,6mos after,here I am having been operated for the 2nd time because my uterus was enlarged; my diagnosis was acute and chronic endometritis and myometritis,adenomyosis,proliferative endometrium, acute and chronic cervicitis with squamous metaplasia,cystic follicles, acute and chronic salphingitis,periappendicitis . I was diagnosed to have hematometra and hematocolpos. Meaning the uterus fills with (menstrual) blood. This was because of the congenital stenosis or absence of the cervix. That's why I had an emergency operation,early morning of Wednesday where physically I almost didn't make it. I had been blood transfused of almost 10 units.Operations performed were exploratory laparotomy,drainage of hematometra,subtotal abdominal hysterectomy with bilateral salphingooophorectomy,ureteroneocystostomy with intra-operative J stent insertion left with Jackson-pratt drain insertion,extensive adhesiolysis and repair of ileal tear...I'm appealing to you for financial assistance because now we don't have any means to raise funds for me to be discharged. I came from a very simple and poor family here in the Philippines. I am the bread winner of the family. My Dad died when I was 15. My Mom used to be a overseas contract worker,now she's old and sickly and is leaving with me. My husband doesn't have a high paying job. I afforded to be hospitalized because of my health insurance at work which now didn't cover my hospitalization because of its limitation on congenital abnormalities or pre-existing condition. I lend money to most of my family and friends. Now,many of them couldn't extend their financial support anymore because of financial constraints as well. My running hospital bill now is $8,000. I couldn't be discharged now from the hospital since we have to pay this amount. I'm asking and knocking on your good heart to help me at this very difficult time of my life. Your assistance of any amount could help a lot to my well-being.You could check me out at facebook kharypt23@yahoo.com or email me at mariecormateo@yahoo.com. I'm begging for your help my dear sisters with MRKH Syndrome worldwide. God bless us all and hope to hear from you soonest.
  • Dan  - a comment
    This video mentions that boys get Viagra and girls get the knife. Which ignores that(in the US) boys get the knife too in order to "conform" them to "culturally approved" condition. As one who was treated that way, let me say that I too felt used by the system in a way that I have never agreed with. As a 3 year old, I learned what had been done to me. I never felt the same about myself after that. I wanted to be a REAL boy, but now knowing that a part of me was missing, that would never be the case. To those who have their bodies altered by doctors without their own direct consent, the de-humanizing effect lingers for a lifetime.
  • Nancy Nangeroni  - You're right
    Dan, you're right that men, too, get cut. I too grew up as male and deeply resented the circumcision that was performed on me (despite my transgender nature). But men are not generally cut as severely nor with the impact of what is routinely done to some women, which is the disparity being referenced in the video. It's unfortunate that our language doesn't better facilitate the recognizing of disparity while still fully respecting the experience of others.
  • Nickkaya  - You are not alone
    Hi girls I have it too. I was diagnosed when i was 15 and I felt like I was not a woman because all my friends had their period. Then I got a boyfriend and I use to trick him by saying oh my period is here and it was not there. Then I told him the truth at first he was upset and I could not blame him for being upset. Then he started crying saying that he will always love me and be here for me. We tried to have sex once and it hurt like crazy. Am now twenty
  • jary  - hi nickkaya
    im so happy for you.
  • jary  - i have no uterus
    hi i was diagnosed with no uterus when i was 18(now im 21)i dont know what to say. my relatives knew about my situation and seems they are insulting me because they are joking about my situation. i have a boyfiend right now and he doesnt know out it. please help me.
  • susan rudnick  - would like to help
    Hi Jary, Your relatives are insensitive and ignorant. I too felt I had a secret, when I was diagnosed, but I have learned that I am just as much a woman as anyone else, and you too can learn to be proud of who you are. Whether or not you can physically bear a child or not is totally irrelevant to who you are. Of course it could be a disappointment to you, that is natural, but that's all it is. And there are so many people with MRKH that are doing things like surrogacy. If you have a loving boyfriend, I hope you find the courage to tell him. And if he is not able to accept you, then he is not the right one for you. Also I recommend the yahoo group mrkh-grrls. There are so man ywonderful people who post. Good luck to you, Susan
  • jary  - thanks susan. now i know im not alone
    i only told him via cellphone that i cannot bear a child. he said he still loves me no matter what. but i want to tell him the real truth personally. he's on training this time and they are not allowed to go out. im from the philippines.
  • susan rudnick
    Hello, I am 65, and it wasn't till I was 61 that a doctor told me that the anomaly I have has a name. I couldn't believe that nobody had ever told me. It still seems so cruel. It is so wonderful to hear you reading, and to know that I am part of a whole tribe of us! I was lucky enough not to need surgery, and just used the dilators. I very much did want to be like other girls, and was eager to use them. But I really appreciate the feelings you express about having to be acted upon to make you something you didn't even know you wanted. I was able to adopt a daughter, which has been such a healing in my life. Thank you for serving us all.
  • kelly  - i dont know
    hi im 14 turning 15 this year, i ahvent got my period yet and iv recently just learned about mrkh is it possible i have it? and is it possible you can have sex without having the operation what sighns will you get before you know you have this? please help
  • Heather  - Re: I don't know
    Kelly, My cousin is 15 and was just diagnosed. She had been having sex with her boyfriend and had some discomfort but nothing major. When she went to the doctor, he told her she had a rare variation of MRKH. She was doing a lot of damagae to her insides by having sex even though she techncally still could. He reccommended the surgery in order for her to be able to safely have sex. Definitely go to the doctor first and make sure you find out exactly what it is that is causing your delayed period. It could ve a lot of things besides MRKH and you should find out.
  • Lauren  - helpful information
    Hey there, My name is Lauren, I am a 22 year old living in New York City, and I was diagnosed with MKRH when I was 18. I just read many of the posts on here, and first of all I want to say that you are (we are) all brave and strong women. I would like to share some information for anyone seeking surgical options. When I began researching MRKH four years ago, the sparse information regarding surgery that would make sexual intercourse possible was extremely frightening to me. Then I found 2 doctors in Atlanta, Georgia, and today, I don't know what I would have done without them. I had surgery right before my 20th birthday, at The Center for Women's Care and Reproductive Surgery (http://www.thomasllyons.com/). From the moment I called for information, I felt that confused feeling of being alone lift as I finally spoke with a compassionate, intelligent woman who knew all about my condition- Dr. Stephanian. She and Dr. Thomas Lyons make an expert team, and I found it quite helpful to have both a male and a female doctor working with me. The surgery was a laparoscopic, minimally invasive procedure than did not require a hospital stay, and the doctors were indispensable with helping me with the dilation process afterwards. I highly recommend going to their website to get information and advice from a highly advanced medical team: http://www.thomasllyons.com/vagina_absence.htm I currently have a wonderfully active sexual life, and I couldn't be more grateful. And that isn't to say that sex is everything. Afterall, what makes a woman a woman is NOT her vagina.
  • Jessica  - :)
    This is the first time I've heard of the "Missing Vagina Monologue" and it's beautiful. I have MRKH, diagnosed at 16 and am now 30. My doctor never gave me a name for what I had, it was until a couple of years ago that I stumbled across an article about MRKH and finally didn't feel alone in this special body of mine. I have not always viewed my body as special and still have moments when I wonder "what if", but given the life I have, I am positive that I have something special. I am married to my high school sweetheart who I met just a year after my diagnosis. I told him a month into our relationship all about me and after and initial shock, he decided that it didn't matter. We were married in 2000 and adopted our little boy in 2007. I feel God gave me this body to make me a strong, compassionate and understanding person. It has led me to my wonderful husband, my angel of a son and guided me to become a nurse so that I can help others. This monologue really hit home with me in the sense that women with this condition tend to be strong in spite of what we have been given. My favorite part is the part that says we were all just little girls before our MRKH discovery. I instantly cried because that is a thought I have had all throughout my life. I was just a girl until that day I was examined by my gynecologist. After that, I really didn't know who or what I was. Thankfully, I have grown to know that I am a girl born with a fabulously unique body.
  • Nikkie  - First post.
    hi my name is Nikkie. I'm 20 years old. i found out i had mrkh when i was 14. I read everybodys stories on here. Thank you for them, they help so much. When i found out about mrkh i was told theres only a few people with what i have in the world. But theres so many more people i can relate to. Its nice feel i can connect with all of you instead of nobody. Would anyone be interested in talking? i have not shared my story with another girl like mine. Everyday is a mystery on how your emotions are going to act to mrkh. Good days and bad days. I would realy like to talk with somebody and share stories, expieriences :) i am curently doing dialation. Its alot easier to do it now after a few years of it being to hard to try and do it daily all the emotion, the reminder of mrkh that used to come from it. Its getting easier. Its working to.
  • Rachel  - would like to talk.
    Hey Nikkie, I found out that i had the condition when I was 13 but was never told that it had a name or that other women have it until a few days ago when I started doing some research. I am 20 now and am looking into surgery for this summer. I still am not sure what it entails and am scared about the surgery and am not sure what's going to happen. I am scared to tell anyone because of what they might think, and afraid to get intimate, like many other women here, because what guy wants to be with a girl who can't have sex? I would love to talk to anyone about this and hear more about your experience.
  • Heather  - What is normal . . .
    This is a really great presentation. It's really beautiful. My cousin was just diagnosed with MRKH and she is very nervous because when she went in to get a vaginal exam and have the nurse show her how to use a dilator for the first time, they found that beyond her short vaginal canal, there is a space of nothing. The nurse and doctor were perplexed and she now needs to have a camera inserted through her vaginal canal to see what is "up there" basically. I feel worried for her because she continually says she feels "defective" or "like a robot instead of a girl". I just wish I could get her to understand that MRKH is not the end of womanhood.
  • Bec  - surrogacy
    Hello all Is there anyone on here that has been successful in having a family via surrogacy? I would love to hear from you regarding the process. Becs
  • Jee  - My wife..I miss her
    I married her about three month back and got to know that she is a patient of MRKH. She love me and me too. Our behaviour is not normal with each other. We have a suspect of loosing each other. Before marriage se undergon with surgery and which was not suceessful to have a complete sex and sexual satisfaction. She is not that much physically fit to have the surgery again. What should we do...please guide
  • Jee  - She wished to leave me...
    She is not having trust on me that I'll not leave her and I am not having trust on her that she will live with me. The tension her family had earlier came in my family also. I tried to convince her several times that if we ll live togather apart from our family, we ll be getting a happy life. I have a plan to adopt a child. I dont know what wrong I did with her, only I wanted from her to follow me and to live with me, but she dint trust me. I am deadly dedicated towards her, but I am not able to convince her. In court also I accepted her, as she wanted, buteven she dint agree to live togather.
  • Bec  - MRKH UK
    Hi ladies I was diagnosed with MRKH when i was 16 but i knew there was something wrong before then. I am now 30. I have only just started to research into the condition, i suppose i have tried to block it out of my mind for many years but i am now at a stage of my life where i know i have to deal with my condition. The thing is i was born with an opening to my vagina which made using the dialotrs much easier and the results came quite quickly. Although i do not have a womb, i do have overies. I know that i will never be able to carry a child but surrogcy is always an option. I have a wonderful man in my life who does not know about my condition and i know that i have to be honest with him, especially as he wants a family in the future but i really dont know where to start. We have been together for 2 years and have a lovely home together in the u.k.and i'm so afraid that he will leave me. especially as i knew about my condition before we met, i should have been honest from the start but it's difficult isn't it? At what point do you put your trust in someone and tell them your biggest insecurity. Hi my name's rebecca and i have MRKH, nice to meet you!!??!! I'm not really sure where i'm going with this message, suppose it's ust great to know i'm not alone. I'm not ready for any of the meet up groups but it would be great to chat with others with simular situations to mine. Becx
  • Vince  - A human being
    You may not like getting a reply from a guy. I am here because I had a girlfriend with MRKH. I loved her very much too. I wanted to know more about others with her condition, and their thoughts, so I could understand her and her needs better. That is the honest truth. Speaking about honest truth. May I suggest that you tell the man you are with, "the honest truth." There is no way around it. Not if you want him to continue on loving you. Trust is one of the most important elements in a relationship.Lying or evading is a very good way to destroy that trust. Better to be truthful then live a life of lies. If he truly loves you, he will understand and accept your situation. It might even draw you closer. I know it did for me and the woman I was with. What killed it between me and the woman I knew was not her MRKH, but, other problems she was dealing with. Those were of a psychological nature. We could not find middle ground in which to find a mutually acceptable accord. From the physical aspect, I would have loved her even if she were a quadruple amputee. Love is some crazy kind of business, isn`t it. Do what your heart tells you to do. And, no matter what...accept the results. Living a life of lies is not something you`ll want. As they say, "the truth will set you free." It will too. Vince
  • Vince  - my thoughts
    I agree that trust is a major part in a relationship. without trust it will not last. But I have a fear of falling in love with that guy and telling him, him leaving me. I have had so much heart break already I just dont think I can handle that.I have already lose something so precious to me... the child I could never have... When I get to the dr the 2nd time I was by myself.. I broken down.. If felt like that dr took all my dreams away... it hit me so harder then after bc I am at a point in my life were I am ready to settle down and start a family.. But I did just a few weeks ago tell the guy that I was starting to like, I have known him for 8 years now. Guess what he doesn't talk to me anymore... How can I ask him to be with me? What can I give him? if we wanted to take things to the next level... I cant... not right now anyways... I cant even carry his child... do u know how much that hurts me? I want more then anything to. I don't get to experience the joy of telling my husband we r expecting... the first kick.. the rounded tummy.. the morning sickness... the sleepless nights.. the midnight cravings.. the joy of something growing inside of me... how can I ask him to give all that up? what if I am not good enough... what if he can tell i am different then the other girls... now r u seeing y its so hard to tell him? I want soo much to be loved and cherished... how will it ever happen if i cant overcome a fear that scares me more then anything... but somethings we dont find the right guy and they hurt us even more... then its back to square one and the next time its even harder to tell someone... just maybe if I dont tell him some how sameway mrkh will go away.. but we all know thats not true... I hope you can get something out of it... if u wanna know more email @ misty_boswell@yahoo.com Thanks hoped I helped, Misty
  • Bec  - MRKH
    Hi Vince, thank you for your reply. It's great to get any response from anyone so of course i do not mind you replying to my post. I totally agree with what you are saying and that is that my partner does need to know the truth, i just cant find the courage inside me to do so. BUT i know i need to do so and soon. I guess i should be lucky in a way as i only have a mild case of mrkh. Physically i am ok and i already have a surrogote mother so all i need now i guess is courage!
  • Vince  - Truth
    Finding the courage you will need comes from doing what you know to be right. You have already indicated that you know your "partner" needs to know. There is no better time then the present to tell your partner. It won`t become any easier for you to tell him. Like a abscessed tooth...it doesn`t get better with time. There are many things in life we do not like dealing with, but, a mature person will...eventually. "Secrets" like this can be relationship killing. Get `er done! The sooner, the better. If this partner of yours is worth getting old with, and having children with, then he has to love you...no matter what. Give him the opportunity to show that love. Withholding the truth from him will only anger him. At least it would me. I am a man, and I want to know what I am dealing with so I can adjust and do what is right for all parties concerned..in this case, that would be you, future children, and of course...I have to consider myself too. Give me the real skinny, and I will provide for those I love. Can`t do that based on faulty data. Lying, or withholding critical information, is no way to start off a lasting family relationship. It`s like building on a weak foundation. No matter how fancy and strong what is built on top of that foundation is...it will eventually come tumbling down. In relationships...truth (and openness) is the strongest foundation there is. I am not saying this will be easy for you...saying that the "truth will always set you free." Think about it. You do want to sleep at night, don`t you? My very best to you! Vince
  • Bec  - MRKH
    Good afternoon to you Vince I here you ! Just to clarify, i sleep well at night already - shouldn't i :)perhaps not. My courage is getting stronger by the hour although i'm not quite there yet. Where in the world do you live? Just curious Kind regards
  • Vince  - To Bec
    I am an American residing in Mexico. Vince
  • kelly  - i dont know
    hey im 14 turning 15 this year and i havent got my period yet, and i recently just learnt about mrkh is it possible i could have it? and is it possible to evan have sex without the operation? what syptoms did you get before you found out you had it?
  • Bec
    That's "i hear you" by the way ! lol
  • nadia_arif
    hi bec..thanks for the reply. may i know where to purchase this dilator.. appreciate ur info on this.
  • Bec  - MRKH
    Hi Nadia. The hospital provided me with the dilators free of charge. A small vibrator works just the same though! Bec
  • kori  - thank you!!
    i am 17 and just found out i have MRKH i just sarted using dialtors and its just nice to know there are other ppl out there with this problem... i understand what u mean about telling others it makes me feel like somewhat less of a women because of it but i have a wonderful family and doctor to help me through it... i think u should tell him because the longer you hold out the tougher its going to be :) hope you the best
  • nadia arif  - I am MRKH woman
    I am so glad I found this website by coincident. The many years of questions behind my mind 'what's wrong with my body?' is answered. Thanks so much for the video information. I have mrkh too and only known about it just recently. I want to try the dilators can you tell me more about it?
  • Gia  - I was born with MRKH too....
    Hello ladies. I was diagnosed with MRKH when i first visited gynecologist when i was about 18 y.o. I didn't have my period, (now i'm 32), but i never could talk to anybody about this, so I went to the doctor when i was 18........... after examing my genitals, my doctor told me "U r very beutifull young girl, but u will never-ever have three things in your life: period, husband and children"........... It killed me....... I was crying my heart out on the way home........ I told my parents that, but they couldn't understand why I was crying so hard, they just bought new furniture and were happy about it, and couldn't understand why i didn't come out from my room to share their happiness....... I always experience pain during intercourse, because I'm missing 2/3 of my vergina... "dimple" is the right word.. my two boyfriends left me as soon as they found out about it...... One of them told me that I was a waiste of life....At 24 I had a surgery - uteris mioma... Doctor promissed me that he will remove mioma, fix my vergina, and I would be able at least have normal painfree sex life.... 2 days later after I woke up from heavy anestesia overdose, my doctor came to my room and told me that he cut out my mioma among with my uteris and right overy and didn't fix my vergina.......and he left... I never saw that doctor again... he never came back to my room .... I'm in a realationship with someone right now for 4,5 years, but all his friends girlfriends are getting pregnant, and I see how much he wants it too..... it's killing me....... he knows that I can't have children, what kills me even more that he is not too supportive either..... I feel like he will find somebody else, and leave me...... I want to tell all women out there who has support - be greatfull that your men accepts u the way u r...... cause it's very rare to find a guy who will undrerstand..... i can't say anything else right now, it's too painfull, maybe im not the best advisor, but i thought it would help .... My best wishes to everybody........... P.S. Sorry for negativeness, but this is my realety I have to deal with.
  • Bec  - MRKH
    Hi Nadia I used the dilators from the offset and i now lead a normal sex life. It's not easy, or comfortable at first and i went through many phases where i gave up with them but please dont. Persevere with them and dont give up. It is worth it :)
  • Gia  - Dilators
    Dear Bec, can you please tell how long did you use dilators for? You see, I have openning too, so I am sexually active now, it just - I experience pain during intercourse....
  • Bec  - mrkh
    Hi Gia about 3/4 months. I sometimes also experience pain during intercourse if i haven't had sex for while - more reason to stay active!
  • Gia  - Truth or lie???
    Thx, Bec for responding, i will definetely look into getting dialators, I guess I just have to find the right doctor (Who won't look at me like I have three heads and ten legs, wich happened before). I just wanted to add a comment re telling guys the WHOLE TRUTH - my opinion - DON'T TELL HIM THE WHOLE TRUTH! They don't need to know EVERYTHING....... Firts, they will never ubderstand you 100%, second - psychologically - in the back of their mind - they will never look at you as at 100% healthy and "normal" woman.... n that creates a problem in the future realationship. Of course we should tell the guys that we can't carry a baby, because if he serious about you, he has a right to know. But it's only my opinion, but I will NEVER EVER tell my man why I can't have children.... never!
  • Bex  - Dilators
    If you struggle to find the right doctor or would like to save embarrassment, then vibrators do just the same! I would recommend small at first ha ha. Where in the world are you from? Bex
  • Gia
    Hi Bex, i'm from New York. Thx for advise, but I'm planning to go to doctor anyways, cause i need to find out if i'm producing eggs, and if i am then i CAN have my own child using my eggs, my man's sperm and surrogate mother... I think it costs about $30000 in US.
  • Bec  - Good luck
    Good luck with goin to the docs. I'd love to hear how you get on and be greatful if you could advise on the procedure of how they advise if you are still producing eggs as i am keen to find this out for myself x
  • ani  - hi
    hey Nadia ! from where you have been ? i would like to know . are you from Asia ?
  • ani
    anyone from Asia ??
  • Renee Baker  - Would you like to share openly?
    Hi everyone, I am a writer for the Dallas Voice and have been humbled to read all of your stories. Do any of you live in Texas by chance? I would be honored to share your stories if any of you are willing to share. Feel free to contact me at renee@ renee-baker.com. Thanks so much, Renee Baker p.s. If you would like to read some of my past stories, see genderpower.com for a list.
  • Jen  - MRKH
    hi. my name is jen and im 18 years old. i found out i had MRKH when i was 17. that was literally one of the hardest day of my life. i went through soo many doctors. missed so many days of school for doctors appointments and my teachers would ask why and i didnt know how to respond. my mom thought it was abnormal that i was 15 and hadnt had my period yet so we went to our family doctor but all he told us was that im just 15 and its kinda normal not to get it yet. after a year we switched family doctors. when she saw i didnt have a vagina opening she referred me to a gynecologist.the gynecologist ran blood tests to see if my hormones were normal and they were. i went through puberty; grew facial hair pubic hair and breast etc. so my gynecologist sent me for an ultra sound & after a couple of weeks they sent me for and MRI cus the ultra sound wasnt very clea. after 2 weeks i had to go do another ultra sound. my MRI was then sent to my gynecologist which he told me he thinks he knows what i have but he rather have a specialist look at it. so i was referred to the children hospital. there i was told i have MRKH. i wasnt sure what it was but she told me what it was and that i dont have a uterus and i will never be able to have my period and that i also wont ever be able to have kids. it hurt me so much i broke down and cried! she also told me i dont have a vagina and that they can make a vagina using dilators thatll take months or surgery. my biggest dream of all is to get married and have beautiful children of my own. but that day i felt like my dream was snatched outta my hand and got torn into a million pieces in front of me and there was NOTHING i could do about it. i felt very lonely, i never knew of anyone who had this. i was also kind of embarrassed i didnt want anyone to know but me and my mom. i thought people would think im weird. for weeks i would cry when im alone. fearing 'would i ever get married? who would want to get married to a girl who cant have kids? im scared of getting into a relationship cus i cant get intimate..' its hard to admit but im very self cautious. i was kind of self cautious before i found out i had MRKH because im kind of a chunky girl but now that i know i have MRKH i wayyy more self cautious. i felt that no one would ever understand what im going through. i didnt know who to talk to i didnt know who to turn to for word of comfort. & i didnt know who to turn to when i just simply needed a hug. it made it even harder because around this time i had lost nearly ALL of my friends in school. i walk around school seeing sooooo many young girls pregnant and i just wish if only i cant have a baby of my own. & i see so many girls getting abortions like its normal when there are people like me dying on the inside cus they cant carry a baby. my doctor had told me to go do research on this so i have a better knowledge of what i have. i didnt till today, the day before my doctors appointment to start using dilators to form my vagina. reading what MRKH is made me break down and cry. then i came upon this site... watched the video and realized you know what i guess im not alone & that there are people out there that feel the same way i do. and i believe i was born this way for a reason, god made me this way for a reason. this is none of anyones business but mine so i will talk about it when i want and to who i want. i know im still young and i have a BIG future ahead of me. i wanna be a doctor someday and maybe help someone out who has MRKH and let them know that theyre not alone. i wanna find the guy of my dreams and get married and if he doesnt accept me for me then he isnt the guy of my dreams. i will adopt kids and maybe save a life. & to everyone who has MRKH, keep your head up high youre not alone. negativity doesnt get you very far in life. we're not normal but yet we are. there are people out there who have gone through tougher situations than us [not that this isnt tough]. i thought about it and im kind of glad i didnt hear the doctor say i have cancer or something else deadly. thank you you guys for sharing your stories cus its really helping people feel not alone.
  • Misty  - Jen
    Jen, I am going thur the samething.. all my dreams have my shattered.. I cant cope with this... everyone around me is having kids... i never get to feel a child growing inside of me.. that hurts soo much! but i am here if u need to talk! email me at misty_boswell@yahoo.com or find me on Facebook if u have one!
  • Tawny  - previous post
    Hi Misty, I just received a post you did a while ago about the need to talk to some one. I did not realized how old it is; plus I just received it today on in my email form gendervision wedsite. However, if you do need someone to talk to just email me. :)
  • kori
    i know u posted this awhole back but i just want to let u know i know exactly how you feel... i found out this year but i havent told anyone... not even my best friend. im a cheerleader and im so scared of relationships at all because at my school ppl expect cheerleaders to be easy and sleep around, i just dont wanna get hurt. im 18 years old and if u ever want to talk please email me at kori.reese@yahoo.com its so nice to know there are other women out there with this who have so much to offer :)
  • Dan  - I understand
    OMG! This video echoed so much of the psychological trauma that has affected me for my whole life. No, I do not have MRKH, I am male. When born, I had a perfect body until a day or two later when the doctor "altered" me. They did it completely without reason or cause, as my genitals were normal and without any problems, they just did it because "they could". At the age of three, I noticed the damage and inquired what had happened. (they thought I would never know!), and then my mother tried to explain it to me. From that day forward, I knew without question that I had been damaged by a doctor who had treated me as if I were an object without rights who had no concern for my own opinion about my own body which now was less than whole. What he did was done to "conform" me to HIS ideas, not mine. I wasn't allowed to have a chance to say anything about my own body. At the age of 52, I managed to recall it using therapeutic recall techniques, only to find that it was torture in the extreme, I was after all, skinned alive without any anesthetics. As a child my feelings of mutilation were so buried that I could not discuss the issue with anyone, not even the most trusted of souls. Personal relationships are almost impossible because I feel that I am "less than I should be". I longed for the body I had been born with for naught. With the internet, I began my search for information which was (finally) available anonymously. In my search I found that victims of circumcision are but the tip of the iceberg concerning doctors and their "quest" to "perfect mankind" to their own image, in complete disregard to the feelings of their patients. MRKH "treatment" is one MORE injustice we can add to forced genital "surgeries" done without thinking about what the patient wants for their own life. I am puzzled by the doctors having to "verify" gender before treatment. What are they thinking? This is absurd. The obsession of doctors to "perfect" the genitals of infants and children to their own fabricated "ideal" is OUT OF CONTROL. And who would stop them? I have no problem with those who willingly allow a doctor to alter their genitals to their desired form. That is how it SHOULD BE. Only someone who has all the information regarding the proposed procedure and its benefits/risks could possibly give "informed consent". To those with MRKH, you are beautiful. You ARE human in every respect. No one has the right to degrade you just because you are different. Your life is your OWN, and you have the right to it as YOU see, not as others see.
  • disha  - thanks
    thanks a lot dear.i was nt passing through any kind of trauma or tension. but onething kept on peeping in mind what is exactly wrong with me but your consolation made me realise that it is a God's gift to me. thanku
  • Poonam - anybody from india  - congratulations to all my MRKH freinds
    i was dignosed with MRKH when i was 16 and its realy very difficult to digest it,but at that time DR doesnt give me the name for it.In 2010 my brother told me that i have MRKH syndrom.it took almost 1 year to digest but after every year from when i daignosed with it, have to go to a dr. and all the time have to tell evry one about it. every one was,is and will looking at me like god had gifted them a body for research.all there questions and all those thing disterbs me. therefor i m always prefering to not to go any dr it herats me. i m a girl who dosent want to talk to anyone and always in tenssion what will happend if anyone got my condition,will they understand me or laught at me or left me alone. when i was in college all my freinds have periods so whenever they talk about it i always felt alone. but some years befor i told all my freinds about it and they accept me as i m and take lots of care of my emotions. now i m almost 25 year old and kows my condition very well and also understand that god has given us a gift of which we have to respect it. this gift is very uniqe,god is giving us a signal that in our world there are lots of childerns who need us,childerns who need our love(perents love) which only we can do and not others. so girls dont worry of it,feel proud that u r a gods children and god is there to love us our duty is only to love them who are in need of love.
  • Bec  - not alone anymore
    What a fantastic representation of us fellow women with MRKH. Could not have said it better myself! would love to here from others Bec xx
  • Katherine Anne  - Missing my vagina
    It was very interesting to view http://is.gd/s2vv the the "missing vagina monologue". Thank you for having it here for us cyber travelers. However, while I thought a great deal about the "missing" vagina monologue (and especially the help it can provide others), I find I left feeling she was, unwittingly perhaps, contradicting herself !!. She condems those that judge someone based on body parts, but then she does the same in her reference in someone mistaking her for possibly being transgendered. She needs to review her words and see the damage SHE passes on too! In some ways she may be correct. Crossdressers, drag queens, and some others in the broad category of "transgendered" ARE men and as such bring out some strong opinions and feelings in genetic women. However, there is a sub-category within that broad umbrella that is called "transsexual". We are NOT men. Whether it was because our brains developed at a different stage in the womb than when our bodies got a wash of testosterone, or whatever, we ARE women. We ARE female. Some of us carry the sex organs of BOTH sexes but inside are still women. To be complete, some of us have female bodies and yet are male in our souls. These are FTM (female to male) transsexuals. I am a MTF (male to femnale) transsexual. In dealing with the medical community, I was deal with a male body, but there is absolutely no doubt by those in this field that are either Medical Doctors, Psychologists, Psychiatrists and the like that I am FULLY a woman and born that way despite my physical body betraying me with the male parts. By the time I finish all my surgeries, I will have spent close to $75,000 out of my own pocket. I initially was so anticipating my next surgery to give me my vagina until several months ago. Unlike many others like me, my transition has been unusually great. Virtually 99.7% of my friends, old political peers, work collegues, family, and strangers all accept me and people who just meet me accept me as a woman. Many times I forget I'm transsexual until something comes up to remind me (or I have to pee). I use the women's restrooms, the women's lockerroom at my health club and any other place I go, and nobody questions me. I am virtually treated as the woman I am. Being 6' tall, I do get glances due to my height, but then there are other 6' women out there. I am still looking to get my vagina, but it doesn't have the significance it once had. You see, initially, I needed it for validation to myself, I guess. I'm not sexually active and don't know what my future holds on that front, but sex isn't the most important thing in my life anyways. Unfortunately, I could never have a child, so in a ways, it negates the need. But most importantly, I finally accepted myself ! When I quit denying myself and began on the road to acceptance, there came a clarity of who I am, my purpose, the answers to questions I had all my life. You see, I am "me" and I am happy with "me". I am a woman and live my life as such. I am no longer confused. I've learned to lose the bitterness of being cheated out of so much in my life by trying to be someone I was not. That vagina is no longer needed to validate myself. I am a woman with or without it. Just like this video points out. We are who we are regardless of the tricks natured played on us. I am most saddened by other women who do not accept us as female, but I do understand that they are just ignorant of the truth or have never really explored this, or just uneducated on this topic, or for some that they feel threatened by us. For many also, they confuse us with the crossdressers or others within that "transgendered" umbrella category. For us, it presents a problem. We do not mind supporting all those in the transgendered category because everyone has the innate right to be who they believe they are as long as they are not hurting anyone else. And, for some it may be a temporary stop on their quest for identity until the ultimately find there group. But, PLEASE, PLEASE all you genetic women. Take a pause and think about this. Whether you have MRKH or a host of other things or none of them, remember that WE MTF transsexuals are ALSO females. Judge us from WHO we are, not what body part we might or might not have. We need to be in the transgendered category because there is strength in numbers for when we try to get things past, but we do need a better way to differentiate ourselves also.
  • Shelley  - response to Katherine Anne
    Hi there. If you review the video of Ester's words, again, you will hear that Ester was beaten up by women because they thought Ester was transgendered. This does not reflect badly about being transgendered or not. I don't think Ester says anything against transgendered people.
  • khary  - pls help MRKH Patient here in the PHILIPPINES
    I'm Khary,31 y/o from the Philippines. I thank the Lord that I was able to find out this site where I would be able to share my experiences as an MRKH patient and hoping that you could extend financial assistance in my case at present. I am currently confined in the hospital and still raising funds for me to be discharged. I recently had my 2nd operation couple of days ago after the 1st operation I had last Nov2010. That was the 1st time I had known that I have MRKH. However, mine has a different presentation. I have type II MRKH Syndrome. I do have a blind vagina, meaning upon internal examination, admits 1 finger with ease, length is 4cm with no identifiable cervix. Also, i was diagnosed to have heart abnormality; which is enlargement of the heart, horseshoe kidney, intestinal abnormality-out pouching of the small intestine, Merkel
  • kai  - unknown!!!!!!
    hello everyone I have been lost for long time. but today I feel I am found. I always thought that I was ther only one with this unknown problem I felt alone and weird. I was called many things in life. Iam no longer a lone I have all this people who I feel like they are my family, I have been researching a support group for as long as I can remember. I have ( MRKH) I was told that I have a normal overies and undeveloped uterus. I was also told that I need to have a sergery, so that I can have a normal vagina. If there is any one out there who can tell me what to expect I'll love to hear from tham. thanx a lot
  • Tawny  - reply
    Hi Kai, I am Tawny and I am 22. After being diagnosed I still did not understand the syndrome completely. After talking to many doctors who had asked if I wanted to have surgery. I had thought about it and had talk to my boyfriend and decided not to. The reason is because I felt no need to. My boyfriend and I have a healthy sex life. Also even with the surgery I won't be able children; there is no point. However, if you feel that getting a surgery will make you feel better about yourself (not because you want to be "normal") then I say go for it. Don't do anything to be "normal" like other women because the truth is we will never be like other women. But then again...not every women is the same. If you have any questions just email me back.
  • krissy
    i am so thankfull i found this forum. i just wonder if there is anyone who has had a baby through a surrogae mother? iam still a few years away but i would like to know all of the details. i have searched the internet for many days now and still did not get all of the anwsers. i would appreciate any info. thank you krissy
  • Anonymous  - re: just had operation
    [quote=milena]Hi, I can't believe how many girls have the same problem like me!!! I lived with this fact 7 years, finally i had operation. And now at least I am able to have normal sexual intercourse. Anyway I will not be able to get pregnant :( Never...
  • milena  - just had operation
    Hi, I can't believe how many girls have the same problem like me!!! I lived with this fact 7 years, finally i had operation. And now at least I am able to have normal sexual intercourse. I would love to help you, support and give some my happiness :). Feel free to e-mail on milena.true@hotmail.com
  • Colleen
    Esther, Well done my friend.. I could not have said it better myself.. =)
  • Maria  - Not just for MRKH'ers
    I'm ashamed to say that i've only just seen this monologue. I'd heard about it, known objectively what MRKH is, and even read the script. I've talked to other women, with other syndromes for whom vaginal agenesis is a symptom, in addition to having coped with a measure of vaginal stenosis myself. Those women have AIS, and i have CAH. I'm going to start telling my CAHsisters and AIS friends, that they REALLY need to see this... because its not just about MRKH'ers, and for that i'm profoundly grateful. You have articulated so well, something i have been trying to express about us... since the day i realized that "i am not the only one"... Atypical does not equal abnormal. I was fine, as i was. :) The vast majority of us on whom these surgeries are performed... often without our knowlege, always without our consent... are just fine. :)
  • Millissia owen  - my daughter
    I know deep down from all that i could read so far,the doctor will tell her that she has mrkh. In one way i am glad that we know what is the problem. But at least she is fortunate enough, to be able to enjoy a healthy sex life with her boyfriend. And surrogacy is an option, for them. I guess in one way she is very lucky there is no operations for her to deal with on top of everything.She is grateful for small mercies.
  • millissia owen  - Tawny
    She was told that her ovaries are fine but very close to her kidney,and that if her ovaries packed in it could take her kidneys with them.The doctor has not as yet said that she has MRKH but when i googled [no womb no cervix ]this was the only condition that came up.THE CHILDRENS HOSPITAL BOSTON where the only indication of what the matter was.There are many variations of this condition going by there web site. We live in South Wales in Great Britain and my daughters next appointment is in february,is we will not be any wiser until then. At the moment she is more worried that her boyfriend might not be able to cope,he will not tell her how he feels ,typical male.They wanted to start a family when they are older and married ,she dose not no where she stands,shes lost and confused in her own turmoil. I do not know how to help her, other than to be there and pick up pieces if he walks away from her.
  • Rayhere
    Dear Millissia owen, I'm also 19 and although I have known about my condition for longer than your daughter please let her know that I would be glad to talk to her. I too can have sex normally and did not have surgery and at this age my hardest problem is thinking about the future and what will happen now. I also have trouble coping with the questions I get about why I don't have a period. I'm very sensitive to it and could easily relate to your daughter. You are both welcome to email me at revert@nebrwesleyan.edu Sincerely, Rayhere
  • Misty  - Rayhere
    I am 20 years old and I need someone to talk to. The doctors have not yet told me for sure that I have mrkh.. but I am 100% sure I do.. I go to the dr on Aug 10 to find out.. I found out when I was 12..that I couldnt have sex or kids and I also have hearing problems.. but the first Docotr never told me what was going on with my body.. my parnets never talked to me about it.. so I have had no one to help me get thur this.. but I cant cope with this..Y me? I just dont understand Y it had to happen to me.. but i really need support.. i feel like i am the only on that has this. and I am not NORMAL.. y would anyone want to be with me.. please email me at misty_boswell@yahoo.com I really need anyones help.. so please all who will email me! we need a one day chat time.. Thanks, Misty
  • Keisha (USA)
    Hey I'm 25 I found out when I was 17 I was unable to have children and have sex. Today I found out thru reading all of you guys stories that I am not alone. My entire life I thought I was alone. I can't have sex I've never had a period and I feel like because of the rarity of this I can't find help. I've been embarrassed to go to doctors because I just don't want them poking around and all those tests are scary. I want to have surgery. I don't know where I can turn. I feel I have been robbed of my womanhood. I have small breasts normal external vagina I have ovaries but no vaginal opening. If anyone wants to chat email me hypnotiqess111@aol.com
  • Rayhere  - EVERYONE!
    Hello, I'm new to this website and am wondering if anyone else out there are as sensitive as I am to new-borns, dead-baby jokes, joking remarks about being on a period (when you don't get one) and questions in general when you finally explain. Let me know if you can relate Sincerely, Rayhere
  • Jayanna Killingsworth  - Information...
    Hello there, it just so happens that I live in the states(texas) and I have no insurance to speak of, so treatment is almost impossible here. i have found one of the largest centers for congenital abnormalities in London, or right outside. It is through Imperial College, and it facillitates approximately 500 women and girls with varying levels of the syndrome. They are housed in Queen Charlottes and Queen Chelsea Hospitals. I am actually in the process of attempting to set up a consultation visit for next month myself. I hope this is of some help to you and your daughter. My thoughts are with you all... Jayanna
  • millissia owen  - my daughter
    my daughter has just been told 2 days ago that she has no womb and no cervix. She will be 19 in january,she is able to have sex with her boyfreind. So i can only asum that her vaginea is of a functional size. Her doctor wants to see her again in febuary.He did not tell her any thing more than this , i can only gess he wanted to find out more himself first. Unfortunatly my daughter had to hear this news on her owen.Has she got MRKH.
  • Tawny
    Dear Millisa Owen, I am sorry to hear about your daughter experience regarding MRKH.I myself was not diagnosed until I was 20, now I am 21. To clarifly, was your daughter diagnosed with MRKH? in other words, did the doctor tell her specifically that the symdrome that she has is MRKH? From my research and own experience, women with MRKH do not have a cervix/ vagina. Your daughter is able to have sex is because her wall (skin before the vagina)is stretch during sex.
  • Jen
    To Esther and Tawny: Thank you for the information. I knew there were a few other women like me out there cuz I had talked to two of them regarding surgery when I was given the option, which I declined after talking with them. I wish I could attend the Event but I am in California and not in a financial situation to travel across country. Please contact me, my email is silverraiyne@gmail.com I would love to talk to someone that would understand where I am in life
  • Tawny  - Hi
    Dear Jen, I am sorry to hear about your negative experience regarding MRKH. I myself was not diagnosed until I was 20, now I am 21. After being dianosed, it sparked an interest in me to do whatever I can for my MRKH women. Another MRKH sister and myself are organizing a get together to discuss furture plan for MRKH women as well as providing awareness of MRKH to everyone.
  • Jen
    I have MRKH, but I've been in denial of it for the past 10 yrs. I relate to everything that was said and then some. It was discovered when I was 14. I was told by the doctor I was hermaphrodite, an ugly abnormality. It was decided by my parents that I was never to talk about it and a lie about cancer and a hystorectomy was constructed to explain why I didn't have periods and had a shallow vagina. I'm sick of lying, I think it's caused more harm than anything.
  • esther  - MRKH Gathering
    Hi Jen, The MRKH Organization is sponsoring an Event for MRKH women to meet each other at Simmons College in Boston on Oct 26, 2008. You can read more about it on our web site [ www.mrkh.org ] They have been a great way to meet other women and share our experiences
  • Nouvelle
    Thanks, esther and Tawny... =)
  • Tawny  - Vagina surgery
    HI Nouvelle, look up Dr. Gary Alter on google. He is a plastic surgeon
  • Nouvelle
    I have MRKH. I want to have a vagina. Does anyone know which country is the most appropriate place to have surgery?
  • esther  - surgery
    Hi Nouvelle, I would suggest you join one of the on line support groups so you can connect with MRKH women from around the world. Women with experience really are the best resource. There is a list of support groups on the MRKH Organization web site [www.MRKH.org]
  • Deborah
    I was born with mrkh but last month I was healed by the power God!! We are talking about the one true living God, Jesus Christ! I am going to have a baby!!! No medicine no surgery no surrogate! I am having a baby from my own uterus which!!! I have documents upon documents upon testing upon ex-rays and ultrasounds proving that I was born with MRKH. NO LONGER!!! I AM HEALED AND HAVING A BABY!!!! I LOVE YOU JESUS!!!
  • TAWNY  - WOW!
    DEAR DEBORAH, CAN YOU GIVE ME SOME INSIGHT ABOUT THIS? HOW WAS IT POSSIBLE. I AM A STRONG CATHOLIC AND BELIEVE IN THE SAVING POWER OF OUR GOD. HOWEVER, FROM MY UNDERSTANDING OF WHAT MRKH IS, HOW WAS IT POSSIBLE FOR YOU TO HAVE A BABY WHEN THERE IS NO UTERUS OR THE MISSING VIGINA? WAS THE VIGINA OPENED? FEEL FREE TO EMAIL ME TRUCIE315@GMAIL.COM THANK YOU SO MUCH
  • Lexie
    Did you become pregnant naturally or IVR?
  • RO  - DEBORAH- DID YOU EVER HAVE MRI??
    DEBORAH- DID YOU EVER RECEIVE AN MRI???
  • Nichole  - Thank you for the missing vagina monologue
    I cannot thank you enough because everything you said is everything I've felt/experienced since I was diagnosed with MRKH at 14. After many years, I am no longer alone. Thank you.
  • kareena  - re: The missing vagina monologue
    I am not sure if i have mrkh. But absence of uterus is there. Can anybody help me with some kind of information about doctors whom i can consult in India. Please help me.
  • Poonam - anybody from india  - hey sweetheart
    hey where r u from i m from Nashik(maharashtra)plz inform me, hope will help u out.
  • Vic  - Good video, Ester.
    I know a woman with MRKH, and based on that experience, I have more then just a cursory knowledge of the condition. I want to congratulate you for the "missing vagina monologue." You are a brave woman for expressing yourself so well and so freely. By doing the video, you are bringing the condition out into the light of day, which I personally think needs to happen. The particular lady I know with MRKH has some real problems of an emotional nature...all, I think anyway, as she was not so forthcoming in telling me her thoughts on the subject, related to her MRKH, and perhaps how her family treated her at the time of the discovery of her condition and afterward. I just don`t know for sure. I do know that she is a mess emotionally, and did not ask for this condition, like any of you women did. I just wish she could have gotten better care other then physically. I don`t think she was prepared as well as she might have been, to cope with what was waiting for her in her future. You, by doing the video, put a human face to the condition, and show that you are a regular person too. I know many in this world can be, and are, insensitive...not only to those with MRKH, but to others suffering from other problems as well. That is the nature of man. At least the nature of ignorant and uncaring man. How they behave reflects badly on them, but not on women like you. It is obvious that you are a person of dignity and feeling. The lady I know is smart, ambitious and aggressive. She lives her life as if she has to prove things to others (maybe herself as well) all of the time. She is not good at taking help from those who love her either. She is horrible at interpersonal relationships. She never shares her innermost feelings and thoughts. She never participates in anything either. She is a loner. She has a dog and two parrots (they are hers due to an agreement between her and her ex husband). That is all she seems to feel comfortable with. Human contact is not something she particularly enjoys, but knows she has to make it, in order to make her living. She is very much schizoid, or at least appears to be that way to me. I wanted her badly at one time, but finally had to give up on her after two years of utter frustration dealing with ways I just could not fully understand, or cope with. She never wanted to cede "territory" or her trust. She had to be the one in charge all of the time. She was secretive to a fault too. I can understand a lot of what and why she did things now, but didn`t at all in the early stages. If more knew what you were saying in your video, and read the words of women with the condition...we might try to be more patient and understanding with those, like the woman I fell in love with, instead of giving up in utter and oftentimes maddening frustration. Her major problem was not her MRKH, but the emotional problems that I am sure resulted from being diagnosed and "treated" for it. I suppose it was the "stigma" of being different, that caused her to develop her emotional problems. Short of some successful emotional therapy, I do not see her changing in any way. I don`t know if she can ever be completely happy either. But, I am saying this from my perspective, and not hers. I wanted to be a part of her life, and for her to be a part of mine...wanted it badly too. But, it was never meant to be. Again, I enjoyed watching the video and hearing your words. It gives me a much better insight into the condition, and more so, how you women might feel about and cope with it. In a way, you are on a much higher level as a human being. Sometimes, at least I think so, adversity builds great character. I don`t think many of the women with MRKH would care about having more character over being born like most women are, but this is a plus in a way. I don`t want my words to be taken wrong...I mean that you are gaining something by your experience with the MRKH. Maybe something you would have never asked for, but you are gaining it nonetheless...you seem to be highly intelligent and are seeking wisdom that you may have not sought out before. It is sort of like giving up all earthly possessions and seeking the meaning of your existence at a mountaintop Buddhist monastery...a higher pursuit, at least to me. When you remove the physical and the material, what you have left is the spiritual...a much higher plane, to be sure. Besides rambling on, I do hope some of what I said makes sense. We all have to look for the gold in every situation life presents to us. It is better then the alternative. We all have a purpose...the trick is to focus on finding and achieving it. I think you have found yours. Keep up the good work.
  • Laura  - The missing vagina monologue
    I Can't believe what I just heard. Ihave mrkh and I have gone eight years feeling alone in it. I can relate to this monologue so much I just sat and listened and cried harder than i have in years. Thank you so much for your bravery.
  • Poonam
    Feel Free to contact me on poonamgaud26@gmail.com.
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