By Lynnell Stephani Long
Approximately five times a day in the U.S., surgeons change the size and shape of a child's healthy clitoris. Few of these children are capable of expressing what they want. Two percent of live births, or approximately 80,000 births a year, there is some genital anomaly. And out of those, about 2,600 children a year are born with genitals that are not instantly recognizable as female or male...These children are called Intersexed by the medical world...People with atypical genitals are no longer solely relegated to "interesting case" status and tucked away in medical books. Their stories, in their own voices, can be read in books, magazines, or on the web. --Martha Coventry (MS. Magazine)
Years ago I would not have had the courage to write my story. I was too ashamed to tell anyone else my "secret" or the familys secret. Thanks to Cheryl Chase (of the Intersex Society of North America), and other intersex people who had the courage to tell their stories, I too have found the courage to tell mine.
I was born June 11, 1963 in Chicagos Cook County Hospital. I found out 37 years after my birth that I was born with severe hypospadias, and a bi-fid scrotum. Surgery was performed at birth, leaving me with a micropenis and undescended testes. My labia were fused to form an empty scrotum.
There are other intersex women like me with an XY chromosome. Typically, they were forced to have a vaginalplasties (sex change), and were raised as girls. But after a couple of days in the hospital, my parents were able to take home their baby "boy."
Lynnell Stephani Long: Intersex Activist
and Mid-American Leather Woman 2000
Throughout my childhood I had urinary tract infections because of the surgery to move my urethra from the base of the penis to the top. For years I would get a burning sensation in the middle of the penis after urination. My endocrinologist at the time concluded that I had an infection of some type, but it was never explained to me where it originated.
My childhood was as close to normal as possible -- aside from me jumping double dutch with the girls, playing with dolls, and sitting when I peed.
From an early age, then, I knew I was different than other boys. I was very effeminate, and was called "faggot" by everyone in the neighborhood, including my own brothers. I always liked hanging out with girls. In fact I believed that I was a girl until my mother beat it out of me.
At 14 while other boys in High School were beginning to become young men, my voice got higher. I started growing breasts.
My mother took me to the University of Chicago. I was treated for Growth Hormone Deficiency, Hypothyroidism, Panhypopituitarism, Hypoadrenalism, and Hypogonadism. The doctor said he was not surprised that I had gynecomastia because of my pituitary disorder. To me it demonstrated, what I believed all along, that I was indeed female.
My endocrinologist started me on testosterone injections to stop the breast growth, and help with the masculinization process.
I took male hormone injections for three years. My endocrinologist convinced me that I could be a "normal" male if I took male hormones; I didnt want to be male, I wanted to be female. But no one asked me what I wanted.
It was also while I was 14 that I was told by my endocrinologist that I was infertile, and could never have kids. He told me this on a regular office visit, and never offered any kind of psychotherapy.
I went home that afternoon and attempted suicide.
From the age of 8 to 24 I was a guinea pig for the University of Chicago Hospital. My endo was convinced that he could "fix" me, even if it killed me.
I was hospitalized every summer, for weeks at a time, for testing. I was awakened every morning in the hospital by my endo, and what seemed like every resident in the fuckin hospital, peeking under my gown. I still have flashbacks of standing in front of the graph board, naked, while strangers walked in and out of the room.
I discontinued my visits to the hospital, and all medications, at the age of 24. I wanted to be normal, but I knew I wasnt.
The next 10 years of my life was full of drinking and getting high trying to forget that I was different. I did have girlfriends in that time, and I even got married. I was convinced that a woman could make me a man. She didnt, and I started using drugs even more; trying desperately to end my own life.
In 1993 I signed myself into rehab to get sober. Once again I was at the mercy of the medical profession. I hated it, but I hated abusing drugs and alcohol even more.
One of the questions I was asked during the initial interview was why did I get high. I told the woman, "To forget, to numb out, because Im gay."
It was the first time I had admitted that I was gay. For years I was attracted to men sexually. But I never acted on it. Even when my brothers girlfriends brother hit on me I didnt act on it. I was fascinated, but afraid of getting AIDS. This is when AIDS was known as a gay disease.
Six months sober I met a guy, and fell in love. He considered me his boyfriend, and since I was trying my best to live as male I went along with it.
Jeff was the best thing that ever happened to me. He knew I was "different" before I told him. The first time we had sex he asked me why my penis was so small, and why I didnt have testes. I didnt know what to tell him, I didnt know at that time that I was intersexed, so I told him that I was a hermaphrodite. Little did I know that the lie I told him would turn out to be the truth.
He encouraged me investigate my medical history, to learn the truth. I was too ashamed, and afraid what I might find out. Six months later I came out as a male-to-female transsexual. I wanted to express the woman I am, and that was the only way I knew how.
It wasnt until I got sick in 1995 that I found out that I was intersex. My endocrinologist asked a lot of questions, particularly about the scar that runs from the tip of my penis to my anus. I needed to trust someone; I knew I was going to try to kill myself again unless I was able to be the woman I am. I told him my story, and he listened.
After several tests he started me on a low dose of estrogen, and synthroid for my hypothyroidism.
I started researching my medical history in 1996 after buying a used computer to search the Internet. It wasnt until I saw Cheryl Chase on television did I have a name for what was "wrong" with me.
Taking estrogen helped my breasts to continue to grow, and my body to continue the feminization process. But I still had a scar that no one could explain to me.
What I learned from researching my medical records is that I was born a hermaphrodite. Since my karotype is XY (normal male), the doctors thought that I should be a male. I dont know why no one at the University of Chicago tested me for Androgen Insensitivity Syndrome. If they had, they would know that the reason I was feminizing, and the reason the testosterone injections did not work is because I have Partial Androgen Insensitivity Syndrome.
Having Androgen Insensitivity Syndrome caused my body to ignore the androgen testosterone, which caused me to be born a pseudohermaphrodite at birth and begin the natural feminization process at puberty.
My mother died in 1996, just as I was starting my research. I did ask her "Was I born a hermaphrodite?" Before she died, she told me that she was unaware of it. I believe her. For so many years the medical profession has looked at intersexed children as something they could "fix." Im sure they didnt explain to her the complications from the surgery: Numerous urinary tract infections, and a sense that I was a girl for most of my childhood.
If a girl is born with an enlarged clitoris, doctors cut it off, or down. Beyond 3cm long and they make her into a boy. In my case I was raised a boy. Surgery was performed to give me a normal "appearing" penis, so I could fit into this society as a normal boy. What no one noticed is that if you are a girl with a micropenis, and breasts, you are not a boy! It was difficult taking showers in High School after gym. I was teased and ridiculed all four years.
No one wants to admit that they made a mistake, especially doctors.
But they do. I am a living example. And now I know what I am not alone. The Intersex Society of North America is working hard, along with intersex activists, to end intersex Genitalia Mutilation and the shame and secrecy of being intersexed.
In November ISNA will be sending a team of Intersex Activist to the National Gay and Lesbian Taskforce: Creating Change Conference. The hopes are for each activist to learn as much as possible to take back to his or her city, and help with ISNAs mission to end the shame and secrecy of being Intersex, and to put an end IGM.
One thing we all know now: Change starts when those of us that are intersexed tell our stories.
If you want to help make a difference ISNA could use your help. Visit www.isna.org, and make a donation. Help end intersex genitalia mutilation and to bring the issues of intersex to light.
CLICK HERE to read Angela Moreno's In Amerika They Call Us Hermaphrodites.