The Comfort Zone - April 15, 1998

MRKH Madness, by Niki Taylor

Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome is a fairly rare syndrome that affects about 1 in 10,000 women. This syndrome can cause a variety of medical problems including reproductive, skeletal, and renal (kidney) problems. The reproductive problems may include a short or absent vagina, a partial or absent uterus, and infertility. The patient with MRKH has amenorrhea or absence of periods. Even if a patient has a partial uterus, it is usually removed due to stomach pains and the inability of menstruation to leave the body. Normally, the ovaries are fine. Keep in mind that the patient is genetically a female with breasts and feminine body hair.

As for the skeletal problems, vertebrae malformations may be present. Other bone malformations may be in the limbs.

Renal (kidney) problems are very common. A kidney may be missing or in the wrong place. Another problem MRKH women may experience is hearing loss. Except for the reproductive problems, MRKH women may have all, some or none of these symptoms.

Treatments are possible for the reproductive problems. Doctors can form a new vagina through surgery. Another way to create a longer vagina is the use of dilators. These are phallus-shaped instruments that the patient inserts into the vaginal area over periods of time. These procedures take a great deal of patience, but according to many patients, they're worth it. Many patients report satisfactory sexual intercourse after these treatments.

In some cases, infertility can be treated thanks to the rapidly advancing infertility treatments. Through egg retrieval and surrogate mothers, MRKH women can have their own biological children. The downsides are costs and high failure rates for these procedures.

Although the medical journals and textbooks may cover the physical problems, most don't cover the mental problems that may result. Although not all patients have mental problems, feelings of worthlessness and low self esteem are common. If gynecologists and sex therapists work together to assess the patient's physical and mental symptoms, the patient can go on to a productive life. My own story might not be possible if it weren't for my therapy.

Since I wasn't diagnosed until I was 16, I didn't know about it when I was a child. I had a hearing problem which made it difficult for me to socialize. My shyness didn't help either! I had a few friends, and even though I was an easy target for taunts from boys, I threw myself into my schoolwork and made A's and B's. I loved to read (I started reading when I was 4), and I loved to make up stories with my huge imagination. As an only child, I did many solitary activities such as watching TV. When I was in eighth grade, I was number one in the class.

After I got a hearing aid when I was 12, my academic work really took off! Science fairs, history fairs, and math contests came my way. I had learned about the reproductive system in health class, and I was waiting for my period to come. My stomach started hurting on a regular basis when I was 14, and I thought I was starting my period. But by the time I was 16, I still didn't have a period. My mother took me to her OBGYN (the doctor who delivered me), and after he gave me a brief pelvic exam, I knew something was wrong. The nurse smiled at me and patted my leg. The doctor explained to me and my mother that he would have to do exploratory surgery to find out what was going on down there. After that surgery, he said that my ovaries were fine, but the uterus was incomplete, and he was going to have to remove it. I was still in a denial stage. I thought instead of removing it he could fix it and make me have my period. I learned that wasn't the case when my mother called his office after the surgery to ask about my bladder infection, and she told the secretary or nurse that I was the one who had had the partial hysterectomy. Something snapped in me then, and I haven't been the same since.

I graduated from high school fourth in my class; the one above me that was third in the class had had a baby a couple of years before. How ironic! I went to a local university and majored in English with a concentration in writing. Academically, I was going strong, but my everyday life was unsettling. I couldn't drive; my mother had to take me to school. I had panic attacks; I remember lying awake at night and feeling like I was having a heart attack. I was obsessive-compulsive. I constantly pushed the refrigerator door shut or the couch cushion to the back of the couch. I would take a shower and repeatedly wash my private area. After using the bathroom, I would rub my private area with toilet paper until it was raw. I couldn't even read in peace. I would get stuck on a certain word in the newspaper (it didn't have to relate to my problems), and continually read it over and over again. Not only was I anxious, but I became depressed. Thoughts of people having children and women having periods made me angry and tearful. After I graduated from college with a BA degree in English, I went into a slump for a couple of years.

Supposedly, I was looking for a job, but I was really trying to live in a body that I hated (While I was in college, I had reconstructive surgery on my face which didn't help my body image). Finally, I became tired of the obsessive-compulsive rituals so I went to my father and told him I needed help. His insurance allowed me to go to a psychiatric nurse with a psychiatrist as a consultant who prescribed Prozac. Hallejuah! A light at the end of the tunnel! If anybody needed help, I did. Not only was I anxious and depressed, but I didn't like how I looked. I constantly imagined that I had somebody else's face like an attractive female celebrity.

Three years later, I don't get depressed anymore. Although I worry a little too much sometimes, the major anxiety and obsessive compulsiveness are gone. I'm more social than I used to be. Best of all, I can drive. The woman who couldn't drive out of her own front yard now drives at night and in the pouring rain! I'm in graduate school now, and I'm at peace with myself. What I've learned from all this is that whether you have a perfect body or an imperfect one, if you can just find peace within yourself, you're way ahead of the game and can conquer anything!