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Born Incomplete

The Story of a Young Girl with Androgen Insensitivity Syndrome
*Inspired by and quoted from She by Green Day”

*WARNING! This piece of literature contains frank discussion about the human body, intersexuality, depression, and all other aspects of a normal teenage life in America*

To be quite honest, I have no idea why I decided to write all of this down for the world (or no one if fate decides so) to read. Maybe in my own unconscious way, I think I can help spare someone else the pain that I have endured in my life, or maybe the information that I divulge here can help to lead to better advances in this particular field of medicine and treatment. Or maybe, just maybe, this is the task that kept me from trying to kill myself again—if I have something to do and to accomplish, I can’t be dead, because, of course, it wouldn’t get done. I do not know why I decided to start writing this, I just did, and I can only hope that it helps and does not harm. Before I move on, I would like to apologize to anyone who may be offended by this work, but you read the warning and I do not consider myself responsible in any way for your emotional or mental state. Secondly, I would like to express my gratitude to my family and my friends who kept me going when I could not—I love you all more than words could ever express.

“She screams in silence, a sullen riot penetrating through her mind, waiting for a sign to smash the silence with the brick of self control.”

I may have been conceived in June of 1983, but, as a proponent of the right to a mother to choose abortion or not (excluding partial birth abortion, which includes voluntary abortions after any brain activity is noted, not that this is important), I don’t consider myself to be alive until my birth in 1984. Let me say this now—right from birth, I have been trouble!

My mom was in labor with me for many hours before the decision to do a c-section was made. After the procedure, the obstetrician proudly proclaimed to my Mom and my father, “it’s a girl!” My Mom still tells me how happy she was, although the ultra sound had showed it months before, to hear those words, words that she had always wanted to hear. She was so happy that she sang to me. I know that it is inhumanly impossible to remember this point in my life, but, to this day still, whenever my mom sings me that song, I swear that I can still hear her singing it to me in the delivery room. I cannot think of a happier or more content memory in my existence. If only all of my life could have been that easy for me.

As I said, I have been trouble since the day I was born and I was not kidding when I said that. Less than eight months later, I was back in the hospital for a dual hernia, which should have been the first sign that something was not quite right, but was somehow overlooked. However, considering that a dual hernia is apparent in over fifty percent of all AIS cases, I do wonder why this was not further investigated. This is because the tissue involved with my hernia was testicular and not ovarian, visible at sight and a symptom of my condition. Aside from that information and continuing with the story, because of this mistake, my “ovaries” (as they were labeled because of my female phenotype) were simply moved up to where they should have been located in the first place and not as low as they were.

Well, moving on in the course of my life, after that surgery I lead a normal life in the city, playing dolls and trucks and wrestling and dress-up—I was what you pictured when you pictured a tomboy. However, I also embraced some “girly” behavior, and this is still true to this day. I am the perfect mix of girl and boy tastes when my likes and dislikes are observed. I guess once a tomboy always a tomboy. Personally, with all of my research that I have done on my condition, I consider my personality a product of being reared a female yet having male genetics (is this confusing anyone yet cause it confuses the hell out of me!).

“Scream at me until my ears bleed; I’m taking heed just for you.”

Life goes on and on, and now I shall skip ahead in my life to the age of 16 and a half. By this time, I have switched doctors and I had developed severe depression due to severe isolation and mistreatment by my peers in grade school, but I hid it well; no one suspected that I knew several different ways to kill myself without leaving a mess for my parents to clean up and to have a neat funeral. A couple of the ten could have been viewed as murders if looked at in the correct ways. I did make a few attempts at suicide, one of which my guardian angel stopped me before I could follow through with slicing my wrists with the butcher knife I had found during one of my very bad bouts one summer. I am eternally grateful and in debt to her because I am glad that I am alive to be writing this. Although I do still and may always have depression in some form or another, it does have a habit of getting better or worse due to different circumstances in my life. I just try to believe that no matter how much life can suck, it can always get worse or, if you cannot see it getting any worse, it can only get better. (I will discuss my depression later on in this work briefly from here to there).

Because of my good grades in elementary school, despite my depression, my parents allowed me to attend an all-girls parochial school, where I was a Junior at this moment in my life. As my condition dictates, by this time I had not started my menstrual cycle. However, because my condition was still unknown to my family and me at this time, we have not consulted with anyone because the speculation is that I am a “late bloomer” considering my family history of having family members that did not begin to menstruate on their own until they were 17 or even 18 years of age. Still, to be safe, we decided that I would see a gynecologist by 17 years of age if I did not start my period on my own.

Unfortunately for me, three days before Samhain, I awoke to find a huge lump in the front of my throat. Of course, I was very frightened and convinced that I had cancer and was dying, but I mustered up the courage to tell my mom and she immediately took me to the doctor to find out what the problem was. When she saw me, I was told that my thyroid was enlarged, possibly due to an infection, which may have been why I had not started my menstrual cycle. Of course I felt relieved, would you not? All I had to do was go to see an Endocrinologist so that he could fix me. This is when my personal hell began and my depression began to worsen.

For about a year, I saw my Endocrinologist once a month to have my blood tested, which usually only revealed abnormally high testosterone levels, but not so high to be worried. My chromosomes were never tested because there was no reason to. I was eventually diagnosed with hyperthyroidism which caused me to develop a benign tumor, the reason for the mysterious lump. I finally had to have the entire affected side of my thyroid removed, tumor and all, to restore my body to a normal state. Because of this condition, I lost almost 20 pounds and developed extreme insomnia, which I still have to this day unless I take the medication from my therapist.

Even with this treatment, I did not begin my period. Because by this time I was 17 and my parents and I were beginning to worry, I began seeing a gynecologist. After the initial ultrasound, blood work, and physical exam, which I cried during due to embarrassment, I was told that I did have all my organs, but it felt like there may have been a partial or total blockage of the vagina preventing the excretion of menstrual fluids. My new physician seemed to agree, considering her reports. However, mistakes are made and after several medications and more exams, she decided to tell us that she was wrong and it appeared that I had no uterus. I can remember the visit so clearly: I remember crying on the table because she forgot to lubricate her glove and broke my hymen; I remember crying again at the embarrassment of having my genitals and breasts examined and fondled again by a stranger; I remember crying when she told me and going into a rage and kicking the table, permanently denting it and making both my mom and the doctor jump as I screamed out to the world “why and I so cursed;” I remember my mom crying harder than I was; I remember feeling so alone in the world and beginning to plan a new way to kill myself again.

I entered therapy soon after, was placed on medication, and I do believe that I am doing much better now. I know that I am because I am not suicidal now.

Everything that I was told that horrid day at the gynecologist’s office was confirmed in 2002 when I saw a specialist in the field of Gynecological Infertility and Endocrinology. After checking my chromosomes and the information that she had sent him and after I had an MRI of the pelvis and the abdomen, it was determined that I had XY (typically male) chromosomes, a female phenotype, a blind ending vagina, and gonadal tissue that resembled testicles and not ovaries. This was when I was diagnosed with Complete Androgen Insensitivity Syndrome, stage 6, although I did not find out the name of the condition until a few months later, when I became curious after doing some research on the Internet. In addition, with all of this crashing down on me, I was assured many times that I was still a girl, which I still know in my heart, although I did have a minor identity crisis for a short time.

“Are you feeling like a social tool without a use?”

Shortly after this, I had surgery to remove my Testis (which gave me a thirty percent chance of cancer by age 20 and a one hundred percent chance by age 30 because of my cystic development) was placed on Estrogen Replacement Therapy (ERT or HRT) to keep me looking like me, and from what I understand to finish my pubertal development, which should give me larger breasts, although I am still not sure if that would be a good thing now. I am between a 34 and 36 cup now, so how much bigger am I going to get? Although I do still consider myself incomplete as a girl, as of now, concerning my condition, my only worry is how to tell people I cannot give birth to my own children, but that I cannot wait to adopt.

“She’s figured out all her doubts were someone else’s point of view, waking up this time to smash the silence with the brick of self control.”

Friends (17):

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