My story is one of the threads woven into the tangled skein that is my family. At 23, my mother was straddling that bridge between youth and adulthood. I was her first child. Her younger brother had died tragically, and soon after, their father’s successful barbershops began to fall apart. I never met my uncle, but they say I’m his spitting image.
I was at my pediatrician’s office for my scheduled check–up. As the doctor’s eyes scanned my chubby squirming body, she paused when she reached the crevice between my thigh–rolls. She didn’t know quite what to make of what she saw. She scribbled a referral. “They’ll just take a look,” she told my mother.
When the doctor inspected my labia at the hospital, he knew almost with certainty what he was looking at but didn’t yet say anything to my mother. The data confirmed what my pediatrician feared: My chunky baby body appeared female on the outside but the blood tests suggested otherwise. When they were finished with their tests, the doctors sat my family down and gave them the news.
6/6/86—Informant: Mother and grandmother Immediate Complaint: Abnormal genitals Present Illness: Jennifer has been considered to be entirely well until exam last week by pediatrician who noted enlarged clitoris and small vaginal opening. Female Genitalia: Clitoral enlargement of 1.5 cm. Sex assignment as a female is entirely appropriate.
4/13/87—Dear Mr. & Mrs. Pagonis–I am attributing her elevated blood pressure to being somewhat fearful in our exam room.
Admission date: 10/27/90 Discharge Date: 11/1/90 Attending Physician: Dr. B. Hospital Course: patient underwent a clitoral resection and recession without difficulty.
8/28/1997—Jennifer is an 11 year old. She would like to have further corrective surgery and wanted to know if it was appropriate to start estrogen replacement at this time. Dr. F would like to do a perineal surgery to correct Jennifer’s problem with urination. At the same time, he is considering doing a vaginoplasty. We discussed with Jennifer the fact that her gonadal development was not normal as a fetus. For that reason as well, and the risk of developing cancer, her gonads were removed shortly after diagnosis. She was told she would not have periods and she would not be able to reproduce. We assured her that she would be able to have normal adult relationships. Jennifer agreed to start an estrogen therapy to increase breast tissue. Jennifer’s mom should go ahead and schedule corrective surgery as desired by Dr. F and herself.
When other girls asked me in adolescence, “Did you get your period?” I’d make up stories because I desperately wanted to be on that journey with them. This knot of lies was spun to cover up what my mother had explained to me when I was a child. “You had cancer in your ovaries when you were born,” she told me, “so the doctors needed to remove them. You won’t get a period like mommy or be able to have children.” I believed her.
Ten days before my twelfth birthday, my endocrinologist scheduled me for a surgery. The day of the surgery came and I was being prepared for [End Page 103] anesthesia. The doctors came into the room to tell me what was going to happen next. “We noticed that your vagina is smaller than other girls’. While we’re in the operating room fixing your urethra, we can also make a small incision in your vagina to make it larger. This way, you’ll be able to have sex with your husband when you’re older—Does that sound good?” I looked at my mom, who was in the prep room with me for this and wondered how to answer. I was only 11. I let out a shameful, “Yes.” “Good then, we’ll get that all taken care of for you as well during this procedure.”
He turned to my mom and said, “We’re gonna take very good care of your daughter Mrs. Pagonis.” With...