Friday, January 30, 2009

My AIS Story - Part 8

When I had come to terms with my discovered diagnosis and learned all I could about Androgen Insensitivity Syndrome, I had the talk with my husband. When I began with the discovery of my records, he had a worried, nervous look on his face. It probably didn't help that I was crying.

When I finished my "speech" about how I may have been "meant" to be a boy originally, but developed as a girl, a girl with internal, useless testes, and a Y-chromosome, he asked if this would affect my health in any way in the future. When I replied no, he breathed a sigh of relief.

He had thought I was going to tell him I would have to undergo yet another surgery, or would get cancer or something just as bad. This XY discovery, even the undescended testes. These things didn't matter. To him, I was a woman, and had always been a woman. I had always been honest with him. I was the same person he het met several years before. What a relief.


After "coming out" to my husband, I talked to my mother on the phone about my discovery. I think she sensed what it was about immediately, when I told her I had found something disturbing in my old medical records.

I still don't think she knew the full extent of my condition. I think it was one part the doctors explaining things in terms she didn't quite understand. And one part denial, and worry more for my overall health and well-being to get caught up in asking the doctors lots of questions or for clarification of words like "gonads".

I will never know for certain what was said and wasn't said in that doctor's office or in the hospital that day, and though it still does bother me - to learn I'd been deceived, to learn that something was taken from me (whether I wanted it or not) without my knowing the real truth about what it was - I've come to peace with it to a large extent.

Ethics in medicine, ethics in the world, are always changing - and hopefully for the best interest of the patient. Back in the early 90s and before, the world was different. To be born intersexed in some way, to fall in between, was horrible and shameful. In a way many can't imagine now, I think that the doctors at that time thought they were doing what was best. It may have not always been the "right" thing but I think there are few times in life when things are so clearly black and white, right or wrong. This doesn't keep me from feeling hurt or angry, but it does help me to understand.

I think often about people with varying degrees of AIS. I feel extremely lucky in a way to have been born with the complete version, CAIS, because it meant I was born completely and unambiguously female on the outside. I think it would have been harder to fall much more in between. There would have been many more questions, and quite possibly then in the 1970s, a decision made for me about my gender which I would later not have been able to come to terms with.

I guess I feel lucky to have AIS overall, because it made me who I am today. It made me a woman. Social equity issues aside, I have never desired to be a man. Being a woman has afforded me a greater range of freedom to express myself than I think a lot of men feel they have. I can be as tough as nails in one situation, and cry like crazy over another, and it's still ok. Though the same should apply for everyone of course, man or woman.

Besides - my Mom had three healthy boys after me. I think that's more than enough men in the family. :)

My AIS Story - Part 7

Before telling my husband, I resolved first I would need to learn everything I could about AIS. I needed to be fully informed about what it is and what it isn't, to answer any questions he had, and to just of course deal with this myself.

I also decided to do something I had not been in the habit of doing before. I told a friend. One of my best friends. His positive reaction and support were invaluable those first few days dealing with my discovery.

A medical education about AIS, along with reading about other women (and men) with this condition, also helped me a lot. I finally found stories -- many of them -- about women like me, who had the same feelings and fears, some of whom had also been deceived by doctors and parents who perhaps wanted to protect them from the "awful" truth.

Over a few days I started to feel better.

I was always a woman. I AM a woman. Maybe once, long ago, when an egg was fertilized and chromosomes met, God or the Universe, or just plain biology had planned a boy. But then I think my Mom's will and desire for a girl was stronger. I pictured her, hoping and praying for a daughter. It was what she wanted more than anything. Scientific explanations aside, I like to think it was her hopes, and all the dreams she envisioned for a little girl, that turned an X,Y fetus into a daughter and not a son.

I read about other likely AIS women throughout history, from actresses and models to political figures. Though we can never know for certain whether Joan of Arc or Queen Elizabeth I had AIS, I did like the theme that emerged. Tall, striking women, desired by men, but with much more than men on their minds. They were powerful women. Influential women. Images of guns and petticoats came to mind, and it somehow worked for me. It made me feel less a freak, and more... special.

AIS women have lived and died for thousands of years, and none were the wiser. Before DNA testing, before ultrasounds, before all of the discoveries of recent medical history, we were just women. Supposedly tall, curvy women with good looks :) But real women all the same.

Was it a single chromosome, or a diagnosis, or a part of my anatomy removed long ago that was going to make me feel different?

My AIS Story - Part 6

I was going through a big stack of medical records one day - just a few months ago actually. I had ordered copies from all my doctors and hospitals for both my own files and for transferring to my new doctors after a big move. Over the years, after having several surgeries, and lots of small illnesses (hay fever, shellfish allergy, etc.) I'd been in the hospital many times and have acquainted myself with lots of medical terminology. Going over the records was in part just interesting to me.

Coming upon the records related to my hysterectomy and first visit to the gynecologist's though, I was completely unprepared for what I found.

46 x,y karyotype...

testicular feminization...

undescended testes...


My heart dropped into my stomach and I felt sick. What the hell had I found?

I read on, struggling to decipher the medical terms, and using Google for what I didn't understand. Testicular feminization. And old term for what's now known as ANDROGEN INSENSITIVITY SYNDROME. Sounded a tiny bit more palatable... but what did this mean? That I was actually, AM actually, a GUY???

Here I was, now 31. For 14 years thinking I'd had a hysterectomy. A deformed uterus, twisted ovaries prone to cancer. I had dealt with it emotionally and put it behind me. Now this. Now, a pair of testes instead of ovaries. An absent uterus. MALE DNA...

I found the letter written from the surgeon to the gynecologist describing a successful procedure, and biopsies taken from the "gonads". What I had had was really not a hysterectomy at all. "As we discussed" the surgeon wrote, she had not shared the full story with the patient.

I was shocked. And horrified.

By the "monster" I felt like. By the anger I felt that doctors had hid the truth from me for all this time. By all these unanswered questions that popped up over the years -- Why weren't my eggs frozen? Why I have never met any other women who had gone through the same thing at my age? Why didn't I get some kind of counseling for women like me? Why was it treated as some sort of shameful secret?

It all became slowly and painfully clear.

I felt revolted by my own body.

I searched my face in the mirror for signs of "maleness". Went through a mental checklist of body parts, and thought through what was feminine about me, and what was masculine. Random memories surfaced: Last fall catching a glimpse of myself in jeans and hooded sweatshirt and sneakers as I passed a store window and remarking to my husband that I looked like a teenage boy. My tall stature. My big feet and long fingers. Feeling different in school, and not having a boyfriend for so many years. They must have known something, I thought.

After freaking out and crying about it, and then spending hours online learning everything I could about my diagnosis, COMPLETE ANDROGEN INSENSITIVITY SYNDROME (CAIS), I began to calm down a bit. I thought some more. I may have felt "different" but don't most kids sometimes? I was tall, but models are tall right? And I never felt like a man. No one ever mistook me for one.

But... how could I ever tell my husband?? Would he see me differently? Would he be disgusted? If he left me and I ended up alone, would I ever be able to find someone who wouldn't be totally turned off by this discovery?

Wednesday, January 28, 2009

My AIS Story - Part 5

Days and weeks passed and all of this was forgotten. I got into great colleges, convinced my parents I needed to leave the small town I'd grown up in and head for New York City. Like many teenagers I felt the inexplicable rumblings of needing to be somewhere else - somewhere bigger and brighter and new. Unconsciously I think I also wanted to reinvent myself. New York is where I'd spend my first years of adulthood, break out of my shell a little bit, lose forty pounds of fat, and just as much weight in judgement and preconceived notions often bred by growing up in a small, rural town. It's where I'd make friends with Jews and Sikhs and liberals. Where I'd experiment with drugs, and partying. Taste falafel for the first time. See Broadway shows. Make friends with DJs and artists and filmmakers. It's where I had my first real dates, first kiss, first loves and losses.

I had never grown up thinking of myself as an attractive girl. And because of my weight and likely equally because of a lack of self-confidence, I didn't get much notice by guys as a teen. In New York things were different though. As the weight came off and I grew more comfortable with myself, I was perceived as being a tall (5'10") and pretty young woman. The guys were on to me much more than before. I got approached my modeling agency scouts on the street. Though I never felt very attractive and always had plenty of doubts, it felt pretty damn good.

Boyfriends came and went - some serious and others not at all. Most of them pretty good guys. I was up front with all of them about not having kids and the surgery I'd had years before. None of them minded my "inadequacy". I told few if any friends though - maybe in part because I felt abnormal, but I think more because it was all behind me. My surgery was not something I thought about much.

As the years progressed though, I did start to open up to some of them about having a hysterectomy. Friends who discovered cancers or illnesses and needed surgeries especially, because I felt I had some kind of experience to share with them.

My career progressed. I moved overseas and back again. Went to graduate school. Got married. Got a corporate job. Except for my daily dose of Premarin (a brand of estrogen pill for those not in the know), and visits to doctors surprised a woman my age had had a hysterectomy - I was just like any other woman.

And it was only by accident that I ever found out differently.

Tuesday, January 27, 2009

My AIS Story - Part 4

Several months passed til the date of my surgery arrived. We scheduled it for Christmas vacation - December 26th - the year I turned seventeen. It was my last year of high school, but I'd be able to have several days for recovery and miss a minimal amount of school - and thus minimize the questions I might get from teachers or classmates or friends.

I don't know how my Mom delivered the news to my teachers that I'd be out a few weeks, or what she said to them. I just know that she picked up my homework for two weeks for me, and especially since I was a straight-A student, there was no fuss at all. I didn't look forward to Christmas at all that year, because while we unwrapped gifts around the tree, the knowledge of what would come the next day haunted me.

Thanks to anesthesia, I remember nothing about the surgery of course, little about pre- and post-op. My Dad was there, which I appreciated. Despite my relationship with him always being tough, I knew that he cared and wanted to be there with me. At the same time I was embarassed with this being a female problem.

I have fleeting memories of the few days just after surgery. I remember lots of pain. From turning or moving or trying to sit or walking to the bathroom. I remember the huge and horrible incision and the ugly stitches. I felt like I'd been butchered, and couldn't stand to look at myself. I hated the gynecologist, hated the surgeons, hated everyone in the hospital. Especially the nurse who forgot to administer estrogen, so that sometime after surgery I plummeted into almost instant menopause (with no forewarning from the doctors). I felt unimaginably hot and unbelievably sad, and just started bawling. I know that I had plenty to cry about rationally, but even then I could tell that this was like no other need to cry that I'd had before. Mom ran for the nurse and fortunately they slapped an estrogen patch on me shortly after, stabilizing my body and my mind and my mood.

Another "consolation" - they stressed that the scar would be minimal, and hidden by the bikini line. This was the least of my worries.


The days following surgery sucked. I couldn't go to school so I lie at home on the couch. I looked forward to homework because it gave me something to occupy my mind. I couldn't wait to get back. I thought about ways to quiet any rumors that might have started or explain my absence. I didn't even tell my close friends the truth. I don't remember now, but I think I must have just been evasive and answered their questions in a vague way.

When I returned, I had to wear sweatpants for a week in order to protect the incision area. Not very cool. Teachers and friends were glad to see me back. When they asked if I were ok and how I was feeling I acted as if nothing at all had happened. But it was hard to keep from crying.

Sunday, January 25, 2009

My AIS Story - Part 3

When I turned sixteen, Mom got worried. She confronted me about my lack of periods and made an appointment for me at the gynecologist. It was only natural that a girl my age should have her first visit, she said.

I was terrified. I dreaded the visit like any young girl who can't imagine someone looking and poking around down there and the possible pain it might cause! Even more so though, I dreaded the possibility that she might find something wrong with me.

I remember little about the visit but the slight chemical smell, and the doctor's face. I think besides the discomfort the physical exam is not as bad as most girls imagine. The doctor ordered up an ultrasound to see what was going on inside of me. Though it bothered me to be having a test I thought only reserved for pregnant women, I was relieved that they could figure this out through a procedure only on the outside of my body.

The ultrasound resulted in some screen captures and puzzled looks but no diagnosis I could understand. I didn't know what my mom and the doctor talked about for the minutes they sent me out of the room, but this is my memory of what I was told:

"You have a congenital abnormality
Your reproductive organs were malformed.

Your ovaries are twisted.

They have to be removed.

You can never have children.

But you can adopt.

Oh, and you can have a totally normal and healthy sex life."

When the doctor told me that last part I could tell from her smile that she meant it as sort of a bonus. A consolation prize of sorts.

I was sixteen -- How the hell was I supposed to digest all of this in one afternoon? At that point, I was thinking about having children or having sex. I wasn't even comfortable with my own body and myself to be thinking yet about any of that. I was just an awkward, shy teenager who didn't want to believe that ANY of this was actually happening.

I went back to the car alone to let Mom and the doctor continue to talk, burrowed down into floor of the car and cried. I don't think I fully understood everything at that time, except for sadness, fear, and a very real sense of loss.

When Mom came back to the car she told me about the surgery they'd scheduled. She tried to keep calm but she ended up crying with me. I think we went to the grocery store at that point, in an unspoken attempt for both of us determined to put it past us and pretend none of this was happening.

Saturday, January 24, 2009

My AIS Story - Part 2

The rest of my childhood was uneventful from a medical and health standpoint. I was a very small kid until puberty hit, and then began to shoot up like a beanpole, but at the same time gained a fair amount of weight. I didn't feel comfortable in this new chubby body, but always understood that for some of this, this was a natural part of becoming a woman and the fluctuations of hormones.

I developed physically like the other girls, though perhaps a tad bit slower. Went through training bras, and mood swings and other fun girl stuff. There only seemed to be one crucial difference. My period never came.

I tried to conceal this fact from my female friends. As they got theirs at 12 and 13 and 14 and 15, I felt excluded and ashamed. The same monthly event that was the subject of complaints and fear and mortification by my friends became a subject of fear for me too - but for a different reason. It was around this time that I began to feel different from other girls. Though I often had crushes on boys, I was never the boy-crazy type. I liked Legos as well as Barbie. And this difference in development seemed to mark for me yet another difference between them and me I couldn't put my finger on. I felt like a girl who shows late to a party. Everyone else is in the midst of conversation, laughing and whispering secrets or telling jokes that I could never understand.

Whether it was normal teen angst, or this lack of shared ritual, or something underlying and chemical - I'm not sure I'll ever know.

Friday, January 23, 2009

My AIS Story - Part 1

Mom always wanted a little girl.

Someone to dress in homemade dresses. Someone to teach to bake and sew, to take to Brownies and slumber parties. Someone to share secrets and laugh and cry with.

Though my parents' marriage was never easy, I think the first few years were some of the toughest. My Mom and Dad spent much of it just getting by, working morning to night, and living squeezed into a trailer with several co-workers. Mom had to live in a small space with five men including Dad, and she talks about how horrible it was living in a filthy, roach-infested place. Always having to be the only one to clean up after the messes they made in the kitchen and bathroom.

I'm not sure that my parents ever were really "in love". I think my Mom was a green card for Dad, an immigrant. For Mom, Dad was a way out of a poor, rural town where her father beat her and her teachers told her she'd never amount to anything. Dad was probably the first man who was ever kind to her at all. And for those reasons she stuck with him, and hoped that if they had children, she'd have at least one little girl.

In July of 1979, she got one.

After an exhausting 36-hour labor, there I was - a healthy and fit 7-pound, 2-ounce, baby girl. Totally healthy. Totally normal it seemed.


I was a normal baby, though I hear I cried for Mom more often than most kids and was very precocious (showing signs of reading at the age of two!). Strangely though, instead of learning to crawl like other babies, I took to "scooting" myself around on my butt on the wood floor of the house. Pushing myself from toy to toy using only my legs and feet.

Mom didn't think this was a problem until I developed a hernia in my groin on one side, which she assumed of course was due to this strange mode of transportation.

She took me to the doctors where the did an exam and scheduled an operation for shortly after. I'm told the doctors "explained" the surgery to me by sewing up a hole on the stomach of my favorite stuffed bear. To this day, that crudely stitched toy is my only recollection of the surgery. My Mom was told they fixed the hernias on both sides, but that they had discovered I would need "an additional surgery in the future." The details were unclear and shrouded in medical jargon she didn't understand. She was told though, not to worry...