Sexual Anatomy, Reproduction, and the Menstrual Cycle
The Missing Vagina Monologue
After a laparoscopy to remove the cyst the surgeon told me that the procedure didn't work. But he confirmed my suspicion that he would find my uterus. Imagine my surprise when he told me he found two. A full sized uterus on the left ovary and a uterine remnant on the right. So why do my body parts suddenly appear, or have they been there undetected all these years? Could my neovagina have been connected to a uterus enabling me to have children? Was this the cause of the crippling pain I have lived with since I can remember? I thought this was taken care of decades ago; so why are things acting up now? Ironically, my 5th surgery was for two hysterectomies; and back to the Bell Tower I went.
Every time I get depressed about this I take some little action. Fifteen years ago I got my hospital records and read about my surgery. I have also gotten medical records from every doctor I have ever seen. My sister sent me an article and in the year 2000, I learned about MRKH for the very first time. I got a copy of my latest work-up from eight years before and saw Mayer-Rokitansky-Kuster-Hauser Syndrome written there too. The report my specialist sent me had left that diagnosis out. But he was quick to point out that my vagina had shrunk. Apparently, vaginal function was all he thought I needed to know. Apparently, other parts of the Syndrome were not of concern. I was disabled with back problems at the time, but the connection was never discussed.
Guided by a possible diagnosis, I went to the medical library to research articles on MRKH. I was in my forties and finally had something to call this other than bizarre. That is when I discovered the other symptoms associated with the Syndrome. The connection to years of disability and hearing problems made me numb. If I had known I was predisposed to disabilities I would have made more appropriate decisions about my life. But what a joy to confirm that I hadn't brought them on myself. The most important discovery I made was to learn that there are many variations of gender. This revealed how we are forced into incredibly rigid standards. Even though I was labeled female, I feel more like an it at times. To ignore most of the possible genders is to ignore diversity altogether. Those who don't fit the traditional male-female dichotomy may seem few, but maybe not if we allowed ourselves to see them; to respect diversity. A whole new perspective was growing from very old emotions.
Reading the articles on MRKH made it painfully clear that this wasn't just about bodies, and that the "corrective" approach to genitals should not immediately be assumed. Emotional and sexual counseling would have provided me with a more permanent and accepting solution. If I wanted surgery later in life then I could work toward that. I feel abnormal because I had to be fixed, not for the truth about my body. I feel different because of my surgeries, not because of my vaginal dimple. Being born without a vagina was not my problem. Having to get one was the real problem. It's not that my vagina has shrunk that alarms me now; it's the fact that we judge vaginas (genitals) at all. People don’t fail to meet the definition of normal gender, but the confines of the definitions fail to meet the people. Even with the benefit of normal female chromosomes I feel oppressed by this. Too many people are turned into "freaks" when we refuse to see them as they are. But our genitals are also our privates and they are not to be discussed. Or different. Wishing again to have had choices…
I am an adult now and I DO have choices. I no longer choose to trust without question. I no longer choose to believe without information. I am an adult now and I have a library card! I have researched the various surgeries and dilation treatments used to create vaginas. Surgery is used for a person with no vagina-or when dilator treatment doesn't work. Dilator treatment is less risky, but still very invasive and just as emotional. The basic method is to apply enough pressure with the different sized dilators to indent your tissue enough to achieve an "acceptable depth". It takes anywhere from two to eighteen months depending on how often you can do it. I gave up using my dilators after the first few years. Even after my surgery it was painful. And it wasn't stretching anything. It felt emotionally self-defeating for me to continue. So I gave them names, and hid them in the attic.
Various body parts can be transplanted for "normal sexual function". The bowel and intestine have been used to make vaginas, though not so much anymore. I read one case where an actual vagina was transplanted from the patient's mother. My mother's used vagina?! And regardless of the procedure or the treatment you have, you still have to keep your vagina functional with dilators if you don't have regular intercourse. Now who benefits most from that?
There are a few studies on the psychosocial development of women born with vaginal agenesis. The doctors more or less credit themselves for making us feel normal again. But they are the ones who lock us out with their categories of normal and abnormal. Those of us who don't fit in are reshaped until we do. One doctor wrote how an "angry, withdrawn, muscular girl" was transformed into "a woman responsive in coitus and eager to adopt children". I can assure you that she worked much harder than he did.
Five months ago I found an online support group for women with MRKH. Having believed that I was the only woman I would ever know with this experience, I was totally overwhelmed. The case studies I had been reading about became real women who finally humanized this experience for me. Some of their stories seemed so traumatic that it challenged me to recognize that their trauma was also mine. What a wealth of information when compared to medical journals. These women taught me more about treatment and courage in a week than any stack of articles or any doctor ever could. Our dysfunction has been treated. Our success rates have been tallied. Then we are sent out on our own to make peace with it all. I felt driven to read between the lines, so I asked some questions of my own.
I compiled a survey of questions and emailed it to the group. When twenty-one women answered my survey I realized this experience could not be captured in a questionnaire. We each have our personal experience with this and cope in our own valid ways. I got most of my information from the question: "What Else Would You Like To Say?" There is so much more to this than "normal sexual function". So much more to the women I am listening to now.
Every woman who answered my survey wanted her doctor to be informed of MRKH. Of the twenty-one women who responded only four of their doctors had heard of MRKH before the initial pelvic exam. Two of those four "hardly knew anything". The rest of our doctors were "shocked" or "excited" about treating us. One woman's doctor "…ran into his office to look a few things up." Other women were referred to specialists without explanation. Most of us never knew we had a Syndrome until years after our vaginal procedures.
Many women are true success stories with supportive doctors and positive experiences. Yet even then there is something missing. Most of us feel that our lack of body parts threatens our identity. We get that message loud and clear and for some that scars the most. We battle frequent depression. We hate being told how lucky we are by people who don't have a clue. We are saddest about infertility but there is no procedure to give us wombs.
The women in the group are passionate about helping other women, and for the need to educate doctors. One woman's doctor gave her a vaginal dilator and compared it to a shoe stretcher. He then told her she could become a nun. A young girl's doctor told her that "some species respond to overpopulation by producing sterile females". Some doctors only ask about the sexual pleasure of husbands and boyfriends with no regard to the patient. Some women have needed additional surgeries because their skin grafts grew hair inside their vaginas. The reports on how to avoid colostomies during bowel transplants tell me there have been too many slips in the operating room.
In regard to treatment, twelve of the fifteen who completed treatment felt it was required to be sexually active, normal or loved. The rest of the women felt correction was somewhat required, but they added that they wanted it. Some women question the importance of intercourse. "What's the point? I'll never get pregnant… We share pleasure in many other ways…"
Of the women with medical procedures-all were told by their doctors that their procedures were successful; but not all of those women agreed. One woman had two surgeries before being happy with the result. And two women tried different procedures before finding treatments they could live with. For some women intercourse is too painful or not possible at all. Only three of the twenty-one women were told there were alternative sexual practices besides vaginal penetration. And one woman was cornered by her doctor and told "…how men like oral sex and different positions". Three women were given treatment options but most of us didn't know options were available. One woman had a medical procedure to prepare her for self-dilation. She added, "I didn't know about the slit".
Most of the women were worried that their vaginas would not feel normal to their sex partners. Primarily the partners didn't notice. But one woman was called a "freak" and one woman was asked why her vagina was "so shallow". Another woman was bluntly asked, "Can't you fix that thing?" Until that moment she thought she had.
I have read a lot about the "medical challenge" of treating women with vaginal agenesis but I think the challenge is broader than that. We challenge the role presented to women and that makes people very nervous. We challenge the concept of normal for gender and sexual activity, and that makes people fanatic. Indeed we are atypical but we are women all the same, with test results to prove it. Most of us don't realize we pose any threat at all. We start out our lives as normal little girls. Then suddenly something suggests that maybe we're not. The foundation of our identities crumble when we don't measure up. We are literally molded to fit societal values. We accommodate sexual standards to phenomenal extremes with a determination never dreamed possible. We are faced with questions of our most vulnerable selves during our most formative years. But how can you follow your heart to the answer when the process has ripped out your heart?
I come out about my surgery in carefully selected ways. I have seen the response of too many twisted faces telling me that they have never heard of such a thing. They show me pity. They tell their friends this great gossip and strangers ask intrusive questions on the street corner. One medical practitioner told me I was "just too weird". I have been physically assaulted by women who presumed I was transgender and too active in the women's community. I have been asked if this is what made me a lesbian, by lesbians who were born with vaginas.
Questions have haunted me for too many years because I couldn't find the words. Knowing other MRKH women has finally allowed me a voice. But I don’t want it to stop there. My condition seems extreme only because it's unheard of. Many of the women I surveyed want MRKH to become more public. The hope of opening the door to our secret lives in most of us. We exist in a conundrum because our knowledge is powerful but hidden in embarrassment and shame. The approach to our treatment is very extreme but effects all women in subtler ways. Advances in medicine offer men Viagra, but women still get the knife. Scar tissue does not enhance sexual pleasure.
I want people to understand that doing the right thing often does more harm than good. The standard of normal that we aim for is imaginary. We alter women's bodies when attitudes need adjusting. Correcting our genitals tells us they are wrong. Different is not wrong. Different is different. Women shouldn't have to endure emotional and physical pain to perform one sexual act when so many options are available. I understand why we do that as much as I resent it. I resent it because of the price we pay for society’s lack of creative thinking.
Identity shouldn't be centered around body parts; missing, constructed, or removed. Women with MRKH should be treated as women with a Syndrome rather than isolated by our sexual dysfunction. My "absence of vagina" posed less of a threat to my health than the parts of the Syndrome that disabled me. Then why is a vagina all I was given to cope with a much greater loss?
This article was previously published in the March 2001 edition of Sojourner: The Women's Forum. For an update by the author and more information about MRKH, go to www.mrkh.org.
Written by: Esther Morris
< Return to Sexual Anatomy, Reproduction, and the Menstrual Cycle Overview