I’ve never met any woman with my condition in real life -– not that I know of anyway. It is entirely possible that I have because it is not all that rare, but it’s not something that’s ever come up in conversation.
I have felt a lot of shame about it to the point where I ultimately decided that I wanted to tell my story anonymously. However, there are young women who have spoken out about it, and have actually shown their identity. That is absolutely amazing to me, and shows strength I hope to have some day, especially when you can expect Internet commenter responses like: “So are you a hermaphrodite?” or “How do you pee? Do you wear diapers?”
At almost 30 years old now, I can finally (sort of) admit that my feelings of shame are ridiculous; I have nothing to be ashamed of, and ignorant people are ignorant. This is not something I have done to myself; research says this is really a “roll of the dice” situation.
The diagnosis was pretty typical of any girl in my position. At 16 years old I had breasts, hips and teenage hormones; but no period. I went to endocrinologists, gynecologists, even a reconstructive surgeon to find out what was going on. Doctors discussed amongst themselves over a period of months what they found (and didn’t find) on MRIs and Ultrasounds. The confirmation of my condition followed a laparoscopy, after which the doctor patted me on the back and told me that I’m still a “real female” and “I could always adopt.” I would go on to realize that I would be force-fed those two exact over-appeasing phrases from everyone and anyone who found out about my condition, for the rest of my life.
I have what is called MRKH, Mayer-Rokitansky-Küster-Hauser syndrome. If you look it up, an article will tell you that women with this condition typically have a partial or non-existent uterus and no cervix. It will also tell you that while our genitalia looks “normal” on the outside, we are born without a vagina. It will go on to reassure you that a woman with MRKH is STILL A REAL WOMAN and can ALWAYS ADOPT.
There are surgical procedures available to create a neo-vagina. That’s actually what its called, a “Neo-Vagina,” like it’s sparkly and has a sound system and shoots lasers. What these informative articles don’t tell you is how a woman experiences life with no functional reproductive system, the inability to have “normal” sex and the difficulties in identifying as a complete woman.
At this time in my life, I didn’t have a great and supportive boyfriend who could help me through this. Also, my mom had a strict “anti-feelings” attitude and expected Vulcan-like control of my emotions.
Consequently, she would not discuss the matter with me at all and I really didn’t know what I was supposed to do. What I thought I knew was that fitting in, impressing people and being attractive to men was really important. I was desperate to be really cool and a badass rebel so I drank, smoked, partied and wanted to hook up with guys. But my teenaged attempts at sex were all poking, pain, frustration, tears and shame.
I still refused the corrective vagina surgery. At the time, I was informed that I would be getting what is essentially a “sex-change” operation and my 16-year-old self was absolutely mortified. My vagina was like a shallow pouch. It was impossible for a man to have sex with me, so my doctor told suggested this “dilation method.” The tissue down there is apparently very elastic, so with the help of a short plastic rod I was encouraged to stretch the indentation into something penetrable.
It sort of worked, I mean despite the fact that it was still painful and sex felt more like an invasion of my internal organs than something pleasurable, a guy could sort of get his stuff in there. After all, the importance being sexually acceptable to a man was something that had been constantly emphasized to me. It has gotten better, but if I go any period of time without intercourse or the dilation therapy, my vagina effectively “shrinks.” I have been in a long term relationship for a few years now, and let’s just say we’ve been able to manage the sexual situation.
What I’ve had a harder time managing is people asking me when I’m going to have children.
In my late 20s, I started to notice more of my friends and family members having babies and starting their own families. I’ve been very happy for them and adored their babies and have loved being an aunt or godmother while I simultaneously pushed away the thought that this is something I’ll never get to experience. I’m most likely not going to go through the surrogate process to have a child, but I’m probably not going to adopt either.
Infertile women tend to be often reminded of the many orphaned, unwanted children out there that need families, and their wanting a biological child is pointless and selfish. I’ve been told “just admit that nature has won,” and “God created you like this for a reason and you need to accept it.” I’ve since realized that my acceptance or non-acceptance of this situation is irrelevant, and it goes deeper than not being able to have sex or babies.
I can, and do, pretend that I have all of my female organs for conversational purposes. In attempts to bond with other women, I have faked having periods, all the while feeling like a total imposter. Breaking it down into the simplest terms, my younger self interpreted that a woman’s existence tends to have the narrow parameters of either “mother/childbearer” or “sex object.”
It is an unusual experience to be struggling with something that plays a part in defining your identity as a woman and knowing no one can see it. I’ve haven't reavealed my condition to many people because I don’t want to make them feel uncomfortable, and I already know what their reaction is probably going to be; “…real female…always adopt... “
After hearing constantly what a “real female” I was, I felt bitter and suspicious. Why would I have reason to think otherwise? I certainly didn’t need to be reminded, and came to the conclusion that people would say it to reassure themselves. We (as in humans) have a tendency to want to put people into quick, easy categories. Anyone that slightly deviates from that is subject to open discussion and interpretation.
In some ways, many people may consider me very blessed: I have never had a period, I can’t empathize with anyone’s PMS or cramps, I’ve never had to worry about birth control or unwanted pregnancies. But that’s not all, I am extremely fortunate in many other ways. I have a great body, and I don’t mean in a Victoria’s Secret model type way. I am strong, fit and healthy. Some women with MRKH also experience some kidney problems, skeletal abnormalities or hearing loss. I have none of those.
As far as I know, this condition is not life threatening, or even life-shortening. I am almost freakishly resistant to illness; I’ve never been sick more than a few days in my life. (Even after having septicemia from a burst appendix, I was out of hospital in a week!)
Right now they’re in the experimental stages of uterus transplants. I’ve been thinking of all of the girls born today who could possibly have the opportunity to surgically correct the condition, so growing up and becoming a woman wouldn’t be an even more difficult ordeal than what it already is.
I’ve also been thinking; if this surgery was available to me, would I do it? At 16, abso-fricken-lutely. But now, it doesn’t seem as important anymore. In the past few years, I have stopped trying to uber-female with the way I dress and behave, and have just focused on just being a good human being.