I was a month shy of turning 16 when a red-faced man in a white coat told me I had been born without a uterus. With a huge dark desk between us, he told me I would never menstruate, and would need plastic surgery to correct the anomaly of my vaginal opening that was a mere dimple, so that one day I would to be able to have sexual intercourse.
I have M.R.K.H. These four letters stand for Mayer, Rokitansky, Küster and Hauser, the names of the four doctors who discovered the syndrome over a hundred years ago. This anatomical condition occurs during the first trimester of pregnancy, when the duct that normally forms the uterus, cervix and vaginal canal fails to develop. Ovaries do develop, but there is no menstruation.
Although the condition is rare, impacting just one in every 4,500 women, for over 40 years I thought I was like nobody else. At the time of the diagnosis, he described my symptoms but neglected to tell that the condition had a name.
Without a name for my syndrome, I couldn’t connect with others like me. I was left to navigate my life feeling defective, marginalized and alone.
I carried my difference as a secret shame, acting as if I were just like other people. In high school I learned to pretend I had my period. I even talked about having period cramps, which I never had. Even though swimming and water ballet club were my favorite activities, I didn’t go swimming a few times so that it would seem as if I had my period, like all the other girls. There was nothing I wouldn’t do to be like everybody else.
One day in college I was lying in my dorm room bed with a gaggle of women, when the conversation turned to diaphragms, something I would never need, but which seemed a rite of passage. Birth control was way beyond my knowledge base. This was in the early 60s, when abortions were still illegal, but you could go to Planned Parenthood and get fitted for a diaphragm. While my girlfriends laughed about looking at condoms in the drugstore, I spaced out. I felt like such an outsider carrying the pain of my secret.
Having just brushed my hair, I happened to be holding a long two-pronged hairpin.
Above my bed, I noticed a wall socket with two holes. Without thinking I stuck the hairpin in and woke up to my own screaming. I wasn’t trying to hurt myself, but perhaps subconsciously I was looking for some way to literally plug in and connect.
Some months later came my first sexual experience. That spring break afternoon at my boyfriends’ parents’ house was my moment of truth. After my initial diagnosis at 16 I’d gone for a second opinion and that doctor offered an alternative to surgery that involved dilation with glass tubes. For years, I’d dilated faithfully every day, just as he told me, to the point where it hurt, and had created my own vaginal opening.
My boyfriend and I started making out on his bed, and then I pretended to go to the bathroom to insert a diaphragm. Sitting on the toilet staring at a terry cloth bathrobe hanging on a hook, I counted to 60, figuring that might be how long it would take.
The sex went fine. All that mattered was that he didn’t notice anything. My secret was safe, and so was I.
And so life went, hiding my difference. Eventually I married and adopted a beautiful daughter. My husband knew about my syndrome from the start, was excited for us to be parents and was fine with adopting.
Previously despairing that I would ever be a mother, now my life felt amazingly full. I had friends who knew about my condition and I even joked with them about my booby prize: Never having to worry about getting pregnant, I could revel in my sexuality.
But inside I felt anomalous. When I went to doctors’ appointments (even gynecologists, for breast exams) I would wait for the question about when was my last period. Then with my inner dukes up, I would launch into the explanation of my condition, while the doctor stared at me, stone-faced.
Then one day I began my spiel to a new young gynecologist who had taken over the practice.
“Oh, that sounds like M.R.K.H.,” she said.
“What’s that?” I felt myself go weak inside.
She took out a medical book. And there were those four letters followed by a description of me. I was on the radar. Rare but there. The doctor had no explanation for why I had never been given the name of the condition. But she did suggest that I could go online to find others.
When I got home I logged in and found my M.R.K.H. community. We are thousands all over the world. I discovered that many in my generation also had not been given a label for the syndrome. Some doctors are simply ignorant of the condition. Others are unaware of the difference the actual name can make.
From our online connections, I was able to meet other people with M.R.K.H. in person. In our support groups we laugh and cry together. We express rage at our doctors, boyfriends who rejected us and even God, who made us this way.
We hug to feel our connectedness. And in earlier years we counted the blessings of our children through adoption. In my late 40s I remember crying with joy at reading how extracting eggs through laparoscopy could lead to parenthood through surrogacy. And within the last few years, our community has shared amazement at the miracle of uterine transplants resulting in successful births.
It is too late for these to be an option for me, but it is still so healing to know the possibilities exist for others. By the time I knew what to call my anatomical difference, I had worked hard on myself in many ways, including long-term psychotherapy, and much of the early stigma had been released. Yet deep inside there was a 16-year-old who still felt wounded.
Although there are people who feel that being labeled with a certain disorder brands them with a stigma, for me having a label led to the powerful medicine I needed: the embrace of a loving community of women just like me.
Susan Rudnick is a psychotherapist in Manhattan and the author of the coming memoir “Edna’s Gift: How My Broken Sister Taught Me to Be Whole.”
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