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So My Uterus is Missing and I Have No Vaginal Canal... I Can Handle That: Or Can I?
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First Trip to the Gyno
I can clearly remember the day Mom and I found out that my missing menstrual cycle was likely not a matter of late blooming, but of reproductive abnormalities. My thoughts automatically go straight to the time AFTER the doctor appointment, never to the appointment itself. In those post moments I see Mom and I holding hands, sort of skipping, and smiling. At least I was. If I think really hard I can see her red eyes and furrowed brow. We had just been told I had an imperferable hymen and that the exam could not be completed. The exam was very painful and the doctor was an impatient ass which is probably why I don't often revisit that part of the day. He notified us he was handing my case over to the senior doc. The one I wanted to see in the first place with the kind and gentle reputation.
To break the silence while Mom and I were walking out to the car I said, "See? I told you I hadn't been doing the wild thing. Mom broke out into laughter and tears and that was when we clasped hands, and spent the remainder of the day laughing together.
After that, though, the doctor visits became frequent. An ultrasound showed no uterus so I had to have a laparoscopy, which is a minimally invasive surgery inserting a telescope in through my belly button to have a look around. We found cervix and ovaries, but no uterus. That was a dark day. In my mind all I could think was "freak show who can't have kids." I was nineteen years old and had just met a new boy I really liked and this whole vaginal agenesis thing was beating down my confidence.
The Mental Stress
The dreams began immediately. The setting was always different but the scenario was the same. I was in a dark place running from room to room trying to find my baby. I could hear it crying for me but I could never get to it and I woke up scared and sobbing. I didn't tell anyone because I didn't want anyone to worry. Plus, I saw the whole thing as nonsense. I had made up my mind very early, and never wavered, that I wanted to adopt a couple of troubled children and never intended to have babies. So I scolded myself for being dramatic and tried to move on.
She's Not Having A Baby
Mom, on the other hand, never really came to accept the fact that I didn't want to have my own babies and argued with my plea that there are so many children who already need homes, why would I be so selfish as to create more? I really didn't have that DESIRE that I hear other women talk about. I wonder if it was the absence of uterus denying me that urge? Anyway, she assured me that when I was ready to have children she would be my surrogate and pay for the treatment. This was nice to hear, but not not necessary.
Let's Talk About Sex >
Beyond conceiving children, and the mental aspect which I was suppressing and ignoring, there was the issue of vaginal development and sexual activity. I was nineteen and my sexual experience was limited. The doctor prescribed dilator therapy to open up the vagina and create a deeper canal. NO THANKS! I decided it was time to get busy with the real thing. I traded those hideous torture sticks for the"natural dilator" of the boy who eventually became my husband. One day after about five weeks he announced, "Hey! I'm in!" It made the experience more fun and adventurous than clinical and scary, and whether or not Mom ever knew I had modified my plan a bit, she never said. With technology and awareness better today than it was then, I certainly wouldn't recommend that for anyone else. Counseling and proper therapy are the way to go.
Why Did this Happen to Me?
About six months ago as I was approaching 40, I started to reflect upon what I had accomplished. I have always been very good at checking off my life goals and adding more to replace them. But I realized that I hadn't pursued much on my list since I crossed "adopt children no one else wants" off my list. In fact, I never even crossed it off or gave myself credit for succeeding. It had been a very rough five years but I realized it wasn't rough anymore and that it was time to get back to "living".
I decided to pursue that life long goal of becoming a writer and dabbled in freelance writing. I have written for every topic EXCEPT anything having to do with women's reproductive systems. I just don't know enough about it, never having had a period, bought a tampon, had a baby, etc. So when I was asked to write in the area of reproductive issues I was startled. And hesitant. I decided to research my situation as a place to start and learned that what I have is called MRKH (Mayer-von Rokitansky-Kuster-Hauser's syndrome). I don't think we knew that at the time because Mom spent a lot of time crying and blaming herself. If she had known about MRKH she would have known the birth defects were not her fault.
MRKH is a congenital disorder simply caused by development shutting down at some point in the first few months of the fetus life which is when the reproductive system is forming. I have tried to research to get deeper into the condition, but I start to sweat and get upset. I don't want to delay anymore because I and am anxious to get over this hump and complete this difficult first task for EmpowHer. (and for me!) This behavior of mine is a good example of the power of MRKH over a young girl's psyche. I pretended I was fine twenty years ago and even though I never wanted to have children, having that most basic human right for a woman taken away from me has been devastating over the years.
You're Tough But You Still Need Help. Seek Support Immediately
I will explore the mental stress and more technical side of MRKH in articles soon to come. For now, if you know of a young woman who has learned that she is the one in 5,000 that was born with MRKH share this experience with her and stress the importance of counseling for her and the family throughout the process of straightening everything out. At the very least support groups can be found online. The sooner she understands and starts to cope with how she came to be this way, the easier it will be to accept it and avoid unnecessary flaws in the way she perceives and values herself, making way for her to thrive to her fullest potential.
Cin Langston is busy checking off goals from her life list. After reaching her biggest goal of providing a safe and loving home to children who thought they would never have it, she moved on to her next big one: writing. She's been writing and blogging for just over a year now which led her to EmpowHer where she stumbled upon the opportunity to learn and share more about her own female issues. She is also currently writing two books; a dramedy of mother loss, and a story of local adoption co-authored by her 9 year old daughter.
Add a Comment17 Comments
I have a 12 yr old who doesn't have a vaginal cannel but does have a uterus and ovaries. her cervix is at her vaginal opening. she is forever getting staff infections in her cervix.
April 14, 2015 - 5:48amshe does have a menstrual cycle and they started at the ripe old age of 8yrs old.
we are off to a new gyno in a few months to work towards long term management. it will be a multi disciplinary assessment with a gyno, pead and psych. at her age, all she knows is that she cant have a tampon for swimming. she is very easy going and at this stage, happy to sit back and wait and see what we find out.
thanks for the article.
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Hi Cindy,
June 21, 2012 - 2:07ami dunno how i came across dis article.. but i guess God wanted me to know im not the only one.. felt as if im d one talking. Ive jus entered ma 20 n i got to knw when i was 17.. All weird thouts still running n ma head figuring out ma own thots..
dunno wat else to share wid an unknown yet known person..
thanks for writting
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My name is Jenny, and when I was 13 I had the worst cramps ever. I couldn't move, sit, stand, or anything, I would just cry, and my daddy would still make me do my chores. My step mom got mad and said that I should probably be starting my period but it seemed something was wrong. SO she took me to the doctor. I had a dr that it felt like all he wanted to do was feel inside me cause it was different, he made me so uncomfortable. I then went for an ultrasound and me and momma saw the doctors face drop. She ran out of the room and got the dr. When they came back in momma insisted to know what was wrong and they told us they didn't see a uterus. I went in for the laprascopic surgery next. When I woke up my step momma was beside me crying and I knew.... I cried for my daddy. He wouldn't come in at all. He was in the hall crying too. Momma held my hand at the next appointment when they all told me that I don't have a uterus or birth canal.
January 30, 2011 - 6:47pmI ran out of the dr.'s office and hid for hours. Then momma found me picked me up and took me home. I'm 25 now and since I was six I've always wanted to HAVE 12 kids. Now I can't even see myself having one anymore. They never put me in counseling for it or anything, they just wanted me to forget. The dialator thing was brought up but my dad wouldn't let me and after I turned 18 mom and the dr's still wouldn't let me get the surgery. SO I too went and fixed it the all natural way with the guy I had been with for a few years. The bad part was I was already lost to a major drug problem. I am recently clean for the first time since then and the reality of all of this is really sinking in and I keep having really bad break downs. I have 4 sisters younger then me and they are starting to get married and have their own kids and I cant bring myself to meet their kids till their a year old almost. None of my family ever asks me how I am or anything I have become the blacksheep or is it that I just don't want to deal with their crap? I'm so lost.... It is so hard to stay clean and straight.... I don't know what to do... It has been 12 years and I keep spiraling downward.... someone plz give me some advice PLEASE... this is really killing me!!
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Hi Jenny,
I am so sorry you are going through this...for so many years. If you are finding it hard to stay clean and straight, and feel like you are spiraling downward, it is time to seek counseling right away.
I hope you were able to find some words of wisdom in what the other women wrote: they were distraught, mad, felt like "less than" a woman, and they have all shared that they have come out of this diagnosis as stronger and more confident that they ARE different. They are embracing their differences, and although it is still difficult, they have all found ways to cope (through friends, family, loved ones, counseling). If your coping mechanisms are drugs or alcohol, please talk with a trusted friend and seek counseling, as there are other healthy ways to learn to cope. You are dealing with much more than a diagnosis: you are dealing with anger and hurt in regards to your family, and you can absolutely feel happiness again....you just have to know that you are worth it and you deserve it.
Please let us know if you need help finding a counselor in your area, and I hope you continue talking with the women on this discussion thread.
January 30, 2011 - 8:06pmThis Comment
I just happened to stumble upon this blog at...2am, and it literally almost brought me to tears. I'm a 19 year old female that found out she had vaginal agenesis about 2.5 years ago. I just wasn't starting my period, but I saw it as a complete blessing considering I was a swimmer so, why fret? I knew something was wrong with me after I tried to have sex for the first time at 16...it just wouldn't go in...and it was incredibly excruciating. So since then, I knew I wasn't normal but I didn't want to accept it. Having this condition prior to my surgery (McIndoe) I had a romantic life....trust me. To all women out there I'd just like to say..there is a lot more to sex then actual vaginal intercourse. Prior to my surgery (I'm past my year this past June) I learned A LOT about what I like, and how everything works prior to sex. After the experience I had with the surgery, the learning experience that it was, I wouldn't change anything about it. Annoymous 15 year old, I know you feel incredibly alone right now, and that no one understands you, and you're completley right...no one understands you. They have NO idea what you are going through, but at the same time...they are there to listen and help. And though i didn't seek counseling because I am incredibly way too proud to pay to talk to someone that is "trying" to relate to me, it helps to talk, especially to your mom, or close girl friends. You may be different, but you're not dead. Just remember that. Life goes on, and trust me, if a man is going to love you, he'll love ALL of you.
July 29, 2010 - 2:19amThis Comment
i am 15 and i found out i had mrkh about two months ago. is wasnt that bad finding out because i think deep down i had always known. but now its really difficult. because im getting to the point where im starting to think about sex. its really hard trying to explain oh we have to wait a couple months for me to open my vagina. i feel less of a women ,although i no that isnt true. every time i go to the doctors i just feel reminded of the bad feeling. doctors show no empathy at all. i have told people but they have the slightest bit of understanding.
May 22, 2010 - 3:06pmThis Comment
i kniw exactly what you are feeling. i am 17 and i found out that i have mrkh when i was 16. My mom was worried why i havent had a peroid or anything. We went to doctors, the gyno and everything. they started me on pills to start a peroid. when that failed. i went back to the gyno, then to another hospital with a more experienced doctor. I was worried that it was the worst thing ever. My aunt cried for me and i was about to cry too. i was kinda depressed about also. My mom said that was normal and that nothing was wrong wit me. I know she was trying to comfort me, but i felt she really didnt understand. Now its been a year since then and i currently have a boyfriend. I havent told him about this condition mainly because i dont know how i should tell him. I told my most closest friends, i was kinda scared too honestly. im even more scared of how my boyfriend will react to this condition. we have been dating for 5 months and he still doesnt know. someone help me. im not experienced in relationships.
September 1, 2012 - 11:43amThis Comment
HI Cindy. Your story really interested me because right now I am going through the same situation as u went through. Ima turn 21 soon but I've never had my period. I started to worry about it when I was 16. I saw several doctors; they checked me up. Every time they would say everything is normal with you so don't worry u'll get your period just wait... One day one of my friends told me about this good gynecologist. He checked me; they did ultrasound of pelvic and CT scan.. Few days later i call the Dr back to know about the results and he tells me "Im sooo sorry to tell u this but u don't have a uterus". I was shocked and surprised. I could never imagine i was born without a uterus... I love babies, I can't imagine that i will never ever have my own babies. Im dating a guy now;' we really love each other. Every time he starts talking about babies and having his first guy, I start crying inside me. I have to tell him before we get married, then I'll blame myself for not letting him know....
April 28, 2010 - 7:41pmThis is too hard.. When i think about it I go crazy..I was wondering if they can replace your uterus but the Dr. told me there's no way...
Now, I know exactly what u went through..But probably this is how God created us and we have to deal with it... :(
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Hi, I am 24 and still don't experience having a period. I have undergone the same situation. There's a time when a doctor checked the opening of my vagina but the doctor told me that she cannot see the opening and she told me to wait for the other doctor and have do my ultrasound through my anus. I was then worried what would be the next diagnosis...I also went through the same situation. In fact, I also started to worry about when I was 15 or 16 as I was so excited to experience it because my sister next to me had started already her period that time. Some doctors checked me up and told me to wait and I'll also get my period the sooner...but until now.. don't have..In fact, I don't want this topic being talked about during my school days and there's one girlfriend of mine kept on asking me why she even didn't notice my monthly period (because my group of friends is open about their encounter in "dismenorrhea" during their periods) and I don't give any comments on the topic as honestly speaking I don't know what it is and how it felt.. The person that only knows my situation is my mom, sisters and best friend and my ex-boyfriend.. You're right anonymous that you'll blame yourself if you don't let this things opened-up to your boyfriend the soonest. I passed through it, and faced the broke-up, at least I told him my situation. I envy my friends who have already their babies and kept on asking to myself "WHY?" and nothing to do but to cry...
March 27, 2011 - 5:58amThis Comment
I also have MKRH. Im 26 y/old and dont have period. When i discover it to myself,that i have that such condition.,I am afraid to consult because of rejection feeling,,i have to research over the internet, to see if theres another woman with just like me who suffer from this. Until the gyne told me that i have Mkrh and no chance to have baby.. Its hard to accept that fact..But only God Knows my situation. I thought God has reason for everything.I have a bf and we are in 6 years relationship,when we are in 3 our years anniversary i told him already about my situation, that i have not exprerience period and maybe i dont have a chance to give him a baby someday, a complete family, ill talk to him while crying in front of him, I told him that if he want to left me because of my condition and i want to tell him honestly,and be fair with him
July 14, 2016 - 8:46pmBut instead of leaving me alone..He said He loves me for what eever i am, for who i am, even i dont have anything ..And now we have our 6 years,,and waiting to get married sooner or later. Acceptance of the person we love, makes us more confidence and continue to fight for life...God Will us Strength to overcome even the worst situation of our life.. God has reason for everything. Be positive. Less Stress and continue your battle.
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