by Esther Morris Leidolf
Curious to learn what women were talking about, I read The Vagina Monologues. I wasn’t curious about the play. I was curious about vaginas. I am a woman who was born without one. That topic was briefly discussed in the book but there wasn’t a monologue so I decided to write one myself. This could be the Missing Vagina Monologue, or the Monologue of Missing Vaginas. Either way it’s a monologue that deserves more attention.
Mayer-Rokitansky-Kuster-Hauser Syndrome is a condition that involves congenital absence of the vagina, fallopian tubes, cervix and/or uterus. Some women have uterine remnants, or horns. External genitalia are normal. Chromosome karyotype is 46XX (normal female). The incidence rate is approximately one in 5000. Other symptoms involved to varying degrees are kidney abnormalities, skeletal problems and hearing loss. The cause is somewhat unclear, but the syndrome occurs sometime during the 4th-6th week of fetal development. There is not much research on the whole body, it’s mostly about creating vaginas for “normal sexual function.” My main concern is not how the syndrome develops, but how women are transformed because of it.
This is the part that makes me so crazy. It’s hard to talk about because too many people are uninformed about MRKH. And those of us who have it don’t have the heart to take that on. We retreat to fight the daily battles of our anomaly, and the health issues that go along with it. It’s a lot of work to keep up with because none of the doctors I’ve worked with have been able to connect my symptoms to the syndrome. Could I have avoided years of disability had I known I had a condition that was not suited for my chosen profession? Could I have avoided hearing aids had I known I had MRKH, and that hearing loss was part of it? These are things I will never know but always have to live with.
Trauma. It spirals, touching down at different times in my life. In a scary way I hope it never ends. True, the conflict and shame I would be well rid of, but the presence of mind keeps me holding on, ever hoping to grasp or accept my origin of being. Wishing I could have had choices. The chance to desire change on my own – embracing opportunity rather than fleeing who I was and fearing who I was supposed to be. Too much focus on making me right when I was quite content with myself, thank you very much.
My life completely changed when I was 13 and sent home from camp with abdominal pain. When I was examined they discovered an imperforate hymen prohibiting the flow of menstrual fluid. I had my first surgery then, to open my hymen so I could bleed. But they found that nothing was there. I had no vagina, just a dimple, and they could detect no uterus. I had secondary sex characteristics, body hair and breasts, so they guessed I had ovaries but no one knew where. The medical profession has known about MRKH since 1838, but I was diagnosed with “congenital absence of vagina” because that’s what they cared about. My abdominal pain was quickly forgotten. I was suddenly and shamefully different. Puberty was over for me. I went from selling Girl Scout Cookies to correcting my sexual dysfunction in one afternoon.
My doctors talked to my parents about vaginal reconstruction so I could have a normal sex life with my husband. What husband? And why couldn’t he adjust as he would for any other “birth defect”? My parents did the right thing. They took me down the only path available, the path of “corrective” surgery. But I was staggering from the loss of my fertility, the dream of having children. I received sympathy and even pity about that, but the most pressing concern was to create my vagina ASAP.
I spent the next few years going to specialists, having tests to confirm my gender, being probed by curious doctors and interns with multiple instruments in multiple holes at multiple times. There were no women doctors involved in any of my treatment. My chromosomes were counted and discussed in front of me. “Got to run that test again just to make sure.” There were not enough other signs to determine gender for these guys. They examined my breasts, labia, clitoris, and dimple with blind eyes.
Not seeing what they wanted, they saw a narrow version of normal, and I wasn’t it. I was too young to know I had the right to ask questions. Or the right to slow the process down to fit my own state of mind. I had major doubts about what was going on, and what was being done to me. But I was not yet capable of wondering who was having the biggest problem with my body. Was it me or the people treating me? Frightened in a cloth hospital gown I did what I was told. And my relationship with my body ended. Suddenly I had no right to have it in the state it was in. Like an android on an assembly line, I had no concept of feeling that this body was mine. There was so much focus on the woman I should be that I lost all knowledge of the girl that I was.
Once I was officially determined female my reconstruction was arranged. Then I could adopt children and life would be just fine. In 1972 I had my second and third surgeries. I was 15. That summer I took a “trip” for three weeks to avoid explaining why I had to go to the hospital. I missed family weddings and graduations for my McIndoe surgery. “A slight dimple was present where the vagina was expected to be. A transverse incision was made. By means of sharp and blunt dissection a very adequate vagina was developed. A split thickness skin graft was obtained from the left buttocks and attached to the mold. The Balsa mold was then inserted into the cavity. The skin graft that extended was attached to the vaginal introitus. The vagina was closed. All sponges were accounted for.”
After my surgery I was sent to recover in the maternity ward. For 17 days I shared a room with countless women having babies. I had no visitors since I was on a “trip” and no one knew to come visit me. It was me and my mom, and a lovely nurse named Donna who would wake me in the morning sitting quietly by my bed holding my hand. I later realized that she was protecting me from nightly visitors wanting to satisfy their curiosity as I slept. My cousin worked in the hospital and visited often, but my reason for being there was never discussed.
Two weeks later I had Phase Two- my third surgery, to have the mold and stitches removed. Then I was told about postoperative therapy to keep my vagina functional. A functional vagina is “a vagina that will be able to accept a normal size penis.” I was given vaginal dilators for postoperative therapy, and brief instruction to insert one and wear it every night. The problem was solved, for everyone but me. I was left out of the experience. The whole shebang was over. I never had a chance to deal with any of it. I had two follow-up visits with my surgeon and never saw him again. I was another surgical success.
Why was my gender challenged in the first place, then confirmed like something I didn’t already know? Why was my body taken away and rearranged like a sexual Action Figure by men with knives? What was the need to feminize my body, which actually neutered my soul? I wasn’t able to see what all the fuss was about. All the excitement just reinforced my despair. I was living within this anomaly and feeling terribly wrong for the fact that I didn’t really care that I was born without a vagina.
I was introduced to anger two years later when I started having sex. After all that trouble I discovered that a penis would respond to anything. I felt abused in the most intangible way, a victim of arrogance and assumption. I couldn’t identify it then; I became an instant survivor. And I was told that I would never meet another woman like me. Big time isolation. Divide and conquer? Well I don’t know, but one in 5000 is not THAT rare. I just didn’t know that then. I denied my depression. Like the Hunchback in the Bell Tower, I found a place to hide when normalcy failed me.
Tidbits of emotion overwhelmed me in very big ways. I was learning that normal was merely a concept for people who couldn’t cope with anything different. I alienated myself from peers who would rightfully complain of menstrual cramps and NO I don’t have a tampon! I mastered the stoic, intellectual method of coping and strapped myself in. It was going to be a bumpy ride.
As I grew older I realized I was faced with many questions. How will I experience menopause? How do I monitor the health of my ovaries? How many ovaries do I have and where are they hiding? What about pap smears? I was tracking my cycle with notes on the calendar so I could attempt regular breast exams. I was tired of all this and really pissed that I had to ask all the questions. I was caught in this funky body with no place to go. And I was having other physical problems that needed attention now too.
I finally had another medical work-up done in my early thirties. Technology had changed and they found one ovary. (Two years later they found the other one.) The report I got back from the specialist restated what my doctors said twenty years earlier, but with a fancier name: Mullerian/Vaginal Agenesis. He also noted that my vagina had shrunk. I was recommended for annual ultrasounds to monitor for ovarian cancer. I religiously compared my test results from year to year. In 1997 I noticed a change in the report and called my doctor about it. I was referred for follow-up and another round of tests. They thought I had an ovarian cyst.
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?
For an update by the author and more information about MRKH, go to www.mrkh.org.