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So My Uterus is Missing and I Have No Vaginal Canal... I Can Handle That: Or Can I?

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.

We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

Add a Comment15 Comments

EmpowHER Guest
Anonymous

Hi Cindy,
i 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

June 21, 2012 - 2:07am
EmpowHER Guest
Anonymous

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.
I 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!!

January 30, 2011 - 6:47pm
Alison Beaver (reply to Anonymous)

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 - 8:06pm
vic805

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 - 2:19am
EmpowHER Guest
Anonymous

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 - 3:06pm
SarahJane4444 (reply to Anonymous)

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 - 11:43am
EmpowHER Guest
Anonymous

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....
This 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... :(

April 28, 2010 - 7:41pm
Blossom (reply to Anonymous)

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 - 5:58am
vic805 (reply to Anonymous)

I know this is incredibly random but....are you by any chance working with Dr. Di Saia...at UC Irvine...?

July 29, 2010 - 2:22am
Diane Porter (reply to Anonymous)

Anon,

I'm so sorry about the fact that you don't have a uterus (and that it took you so long to find out).

When the doctor did the pelvic ultrasound/CT scan, was he able to find out whether you have functioning ovaries? If you do, it would be possible for you to have your own children by using a surrogate mother.

Have you considered talk therapy to help deal with the grief and sadness (and, I would guess, some anger) surrounding this issue?

Let me encourage you to try to tell your boyfriend about this sooner rather than later. The longer you wait, the harder it is going to get. You need to know what his reaction will be and you need to know it before you start planning a wedding. Will it be too much for him and he decides to break up with you? Or will he understand and support you through it?

Please think about going ahead and talking to him. It's important to both of you. I am sure that if the tables were turned and your boyfriend told you something about himself that meant he couldn't have children, you would still love him for who he is. Right?

April 29, 2010 - 10:04am
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