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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 know this is incredibly random but....are you by any chance working with Dr. Di Saia...at UC Irvine...?
July 29, 2010 - 2:22amThis Comment
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 - 10:04amThis Comment
Well Anonymous I am extremely happy you commented, even though you're not sure why you did. And I'm equally concerned that you have gone a life time keeping this to yourself. I know the trauma that's been brewing in your mind. There was a time when my mom advised me not to share it, "people can be cruel" she said. But no one is more cruel to us than ourselves. Keeping it all bottled up makes it seem like a bigger deal than it actually is. It magnifies the the "freak" factor in your own mind and chips away at your self esteem. I still have to remind myself sometimes that it is not a big deal. I don't care who knows now. My girlfriends are envious that I don't bleed. We laugh about it. It's the best medicine. Lots of people you know have impairments and conditions of one kind or another. Being flawed is normal and beautiful. So you need to sit on dilators to open that thing up. BIG DEAL! I can think of worse things! :-) Not at 18 I couldn't, of course, but today? Eh. Been through worse. I completely understand your feelings of inadequacy and still struggle a bit with it myself. But the MRKH is just a thing you have, it doesn't define you. Feel free to contact me directly at [email protected]
July 18, 2009 - 8:54amThis Comment
I'll be 39 in September and I had quite a different experience dealing with my first trip to the Gyno. The end results were the same, I had no uterus and no vaginal canal, but my experience with dealing it wasn't so positive. It was dealt with by... totally ignoring it. To be perfectly honest I found this blog because I woke up this Saturday morning by a dream. A Gyno dream where I was diagnosed again with MRKH (didn't know that was the name until this blog) and was offered this miracle cure of sitting on "dilators" for a maximum of 24 seconds and all would be normal. I woke up basically in tears, actually crying as I type because I'm 40 and I've never done ANYTHING to deal with the problem let alone try to "fix" it. I feel like a freak, inadequate, a freak, weird and have I mentioned a freak. Ohh and here's a little twist I'll add in... I'm gay. I've been with one man. That was about 2 months ago and I'm not sure why. I think I just wanted to feel "normal" one time. Just see if I could "make" it work. Needless to say it was a disaster. I have no doubt I'm gay. I have been with several woman. I only told one about my "condition" and to be truthful I didn't go into details. I just told her I didn't have a period. I talk about it to no one. Not my mother, my sisters or my friends... hell even girl friends. I guess I'm not sure why I'm commenting. I guess I just wanted to ask about support groups you mentioned in the blog. Which one would you suggest or maybe even a list?
July 18, 2009 - 6:25amThis Comment
Ah. Two years of raging, withdrawing, hot flashes and weird tastes and sensations. Sounds like perimenopause or menopause to me! And I've recently been through it myself.
It sounds like, then, at least through your 20s, that you did ovulate. Perhaps if you'd had today's technology, they would have offered you the option of harvesting your eggs, fertilizing them and having a surrogate carry a baby for you.
Of course, then you might not have your 9-year-old, which sounds like it was meant to be. =)
June 4, 2009 - 8:11amThis Comment
Oh thanks Diane! I am glad you liked it. It was really hard to write... it took me almost two months! Partly because of the personal nature and partly because I was so concerned about the first impression I would put forth at EmpowHer! :-)
To answer your question... doctors didn't really know what to make of me at the time. There really was not much counseling available, nor discussion of what the future looked like in terms of development, hormones, etc. I can tell you that when I was in my early 20s I started keeping a calendar of moods & cramps and it sure seemed like I was on a monthly cycle of some kind. In 2007 & 2008 I went a little crazy. I raged, I withdrew, I hated everybody, I had hot flashes, and had all sorts of weird tastes and sensations going on. I emerged 6 months ago smiling and free of cramps and moods. I wondered at the time if I could have been menopausal then, but I was so deep in depression and distant from logic... I didn't give it much thought.
When I finally went to the doctor and to therapy they treated me for depression. It worked I guess, but I don't think they scratched the surface of what's been going on inside this body!!!
June 2, 2009 - 10:56amThis Comment
Cindy,
Welcome to Empowher!
I loved reading your blog and was interested in every word. I never knew that MRKH existed but will remember to send others to your blog when I come across someone with the condition.
Your story is vibrant and interesting, full of detail and emotion. I could feel not only what you felt, but also what your mother felt during those times.
I'll be excited to read more about your apparently quite recent adoption of a 9-year-old girl (congratulations!!) and the other things you'll write about in the coming months.
And I do have a pertinent question. With ovaries and all intact, I assume your body still goes through the normal monthly cycle of hormonal release? Do you have pms (without the actual menstruation, of course)? Will you go through menopause as those hormones decrease? Or was the hormonal part of your development stopped at that point also?
Thanks so much for writing. I look forward to your blogs in the future.
June 2, 2009 - 8:33amThis Comment