OBOS Home Page
Home  I  About Us  I  Programs  I   Publications  I  Blog  I  Donate Now
Health Resource Center

Sexual Anatomy, Reproduction, and the Menstrual Cycle

The Missing Vagina Monologue

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 1st 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 2nd and 3rd 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 3rd 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.

Next Page >

Companion Pages:  1  2 

< Return to Sexual Anatomy, Reproduction, and the Menstrual Cycle Overview






Home I Resource Center I Support Us! I Press Room I Site Credits I Feedback I Contact I Privacy I Site Map