CAIS Privilege

Although this is a topic that's been on my mind for awhile, I have never really brought up because I sense it could be highly controversial, and might even make a few of you angry.

I have been thinking about the status that women with CAIS (Complete Androgen Insensitivity Syndrome) seem to have within the AIS / DSD and/or intersex "community" (if you can call it a community). As someone with CAIS, I will include myself in this category. I feel like we are the "darlings" of the medical world and the media to some extent. If you don't understand what I mean, please bear with me.

As someone with CAIS, though I am technically intersex, and neither wholly female nor male, I am much more easily accepted as female by the majority of society, by the medical community, and by some others with DSD (disorders of sex development). I fit the paradigm physically more so than many women with Partial AIS or another DSD. What's more, I happen to fit more within the paradigm of what is considered in some circles in society "conventionally" attractive for a woman. I am very feminine, and considered by many to be very attractive. I am straight. (Pretty much anyway. But that's a separate topic.) People will label me just a regular woman with a Y-chromosome. As if my karyotype and my internal testes were more of a fluke or an accident.

Women with other conditions, who were born with anatomy that doesn't so easily fit the paradigm, who might appear more masculine than the ideal feminine paradigm, or who might be attracted to just women or to both men and women - these women bear what I think is a lot more weight in the game. Society is less comfortable with them and their bodies and their identities. And to be frank, I think these women have a tougher time.

I'm not saying that women with CAIS have it easy. We've got plenty to deal with - infertility, fear of rejection by our often straight male partners, and more. Plus, the very idea that we can so easily "pass" as "typical" women, even with our clothes off creates a different type of tension: If no one ever has to know, or would know, do we tell them? Do we have an obligation to?

But many women with PAIS or other DSD never even have that choice. And from birth they are thrust into a world where an immediate surgery or other irrevocable decision might be made for them. And that's just the beginning really.

But what was the point of this post? Really just to get your feedback on this. I am so curious as to how others feel about this idea I have about "CAIS Privilege". Is it valid? Am I crazy? Do you agree or disagree?

Estradiol Up

As I mentioned, I'm now on .5MG more of Estradiol per day, and I'm taking it approximately half in the morning and half at night. That's 2.5 MG total. I am in my early 30s and weigh about 128lbs.

I might just be my imagination, or any number of other things going on, but I feel a bit moodier than usual. My skip-level manager today made some sort of remark about where I was sitting in a recent meeting. "Do you sit in the third row at church too?" he asked, and I felt so irritated that I wanted to snap, "I don't GO to church!" and see if I could catch him off guard. I've never liked the guy - and always felt he seemed fake, but that feeling is not characteristic of me on a typical day, and I don't think he meant any harm with the question.

At any rate, I wonder if my body is now processing more of the hormones as a result of the timing and the slight up in dosage.

Most of my friends on increased levels of estrogen - both my XX-female friends and my XY-female friends, always note an increase in breast size. That would be a very welcome effect for me, though I may already be at my maximum size given my thin frame and other genetic factors. I've definitely got a very feminine butt and hips. If I could be one cup size bigger on top though - fantastic! Alas, I wouldn't want that at the expense of putting on more weight. The latter is also an effect of increased estrogen. I think I'll be hitting the gym in the next hour or so.

I've been wondering about the effects that testosterone might have on me. Other women I know with complete AIS claim that taking testosterone helps with their energy levels and sex drive. That seems a bit strange, considering we are supposedly insensitive to testosterone, however science and medicine don't have the human body and mind completely figured out yet, so I guess there is a possibility there. I am lucky in that I have never had a problem with my sex drive, and it's definitely increased through my 20s and early 30s. Energy on the other hand, I think I could use more of that sometimes. Although that could probably easily be addressed by sleeping more and working less!

We Want to Hear YOUR Stories

I'd love to have a few "guest bloggers" post to this blog. So, those of you who have AIS or perhaps a related condition, if you have something you'd like to say, please leave me a comment, or email zoech4ng@yahoomail.com. I would definitely like to hear from you, and I'm sure everyone else would too.

You can remain anonymous as you like. You can tell any story you like, or talk about any topic directly or tangentially related to living with AIS or any other DSD/intersex issue. Email me your story and I will post them here, along with whatever type of credit you like. If you prefer to use a pseudonym, that's totally acceptable too.

Looking forward to hearing from several of you I hope!!

Zoe

AIS in Chinese

I am pleased to say that I figured out how to say/write "Androgen Insensitivity Syndrome" in Chinese:

"雄激素不敏感综合征"

This might not make a hill of difference to anyone reading, but as a Chinese-American who has not been able to yet become fully proficient in her parent's mother tongue, I was pretty pleased with myself for managing to figure it out based on Google and a Chinese dictionary.

I googled the term and there are a good number of hits, though I can't really read more than 10% of it. ;-) Wish I could, because I'd love to see what is going on in Chinese media and medicine about the condition. Anyone out there know of how the condition is perceived in the non-Western world?

Disclosing to Acquaintances

To date, I've "come out" about my AIS to a few dozen people. Reactions have ranged from very positive to pretty indifferent. None have really proven negative. Of course, there are segments of people I am intentionally avoiding (for now). High school classmates from my small, homogenous, Midwestern town for starters. Certain extended family members who I don't feel need to know just now.

I have told a few near-strangers recently. Not because I feel the need to disclose this information to everyone, but because the nonprofit I am a part of (an AIS support group) somehow came up in the context of a conversation. One of these near-strangers, who I had met at a networking event once before, and who I ran into coincidentally at a coffee shop weeks later, seemed pretty taken aback at first. I never would have told him, but he had asked what nonprofit group I was trying to help out, so I thought, "Why not?" and just blurted it out.

He seemed a bit shocked, and I could see him almost unconsciously scanning my face and body before saying, "Well, you could never tell by looking at you!" I was a bit taken aback by that myself for some reason, but then realized, he wasn't saying anything negative. He was probably trying to be somewhat positive. And what's more, he was processing some very unexpected news - which you certainly don't hear every day. And I was certainly nervous, just throwing out all the cards on the table like that to someone I barely knew.

He found the condition interesting, and asked a few follow-up questions. "Is it like Fragile X?" he asked. "Not exactly," I answered. Though I didn't really know what Fragile X was. "Though it is a trait sometimes passed through the X-chromosome. Though sometimes, like in my case, it seems to be spontaneous."

He seemed to want to know more, so I explained what I could about the condition, and how I had only just found out, having been lied to as a teenager. He was sympathetic, and also intrigued. I offered to send him some URLs to read up more on the condition. And he later did, asking one or two follow-up questions.

His reaction was interesting because it was the first time I've really seen someone processing the information in this way. Really wanting to know more and understand it. I wonder if us not knowing each other well gave him more freedom to look at it from a more scientific angle.

At any rate, the experience, while definitely positive, made me think more about ways to disclose this information to people. As well as the variation in reactions I could get - some that might feel negative. I think it's important for those of us who are intersex to realize that to some people this is big, confusing news, and their reactions are going to vary - possibly widely - and we won't always like them.

Rather than fear their reactions, or react in a knee-jerk way, perhaps it is our responsibility to be more informed and more forgiving. Sure, we don't "owe" anyone anything, but only compassion and understanding can breed compassion and understanding. Perhaps we as intersex folks have to be the bigger people.

What about you? How have you disclosed your intersex status? What reactions have you gotten? And in turn, how did you react?

Update on Life in General

My apologies - it's been ages since my last post. I suppose part of it is because my focus on this condition ebbs and flows. AIS is a part of my makeup, and has made me who I am today, but it's not the only thing. Just as we are all a sum of many parts, and arguably, more than just a sum of them.

I guess that was a convoluted way to say I've had other things on my mind these days. ;-)

I've been busy these days - with the job search (I've been unemployed for over a year now), and with a divorce. Yes, the ever-supportive husband I mentioned in previous posts has decided he is done with our relationship. (Those of you who know me personally but don't know I author this blog will likely now know who I am. And yes, this is me. Only I change a few details throughout for anonynmity! ;-))

I mention this as I wonder if my discovery of my AIS was a factor in him falling out of love and wanting to end things. Supportive friends insist that it's not, but I guess the insecurity in me causes me to ask the question. Especially since he brought it up in one of our breakup chats. He suggested I wasn't producing the right hormones or pheromones to keep him interested. He still insists that learning I am 46,xy has nothing to do with his feelings for me, but I do wonder. If the discovery did affect his feelings, I would be a little upset. I don't think there's anything male about me physically. Heck, I went for a huge portion of my adult life not knowing anything was amiss myself, and I live with me every day!

In other news, I've changed the comment settings on this blog so now when anyone comments, I will be notified by email immediately. Before, I would go weeks or months not knowing someone had left a comment or question. This should happen no more! Thanks for all your great comments, observations, questions and support!!

Eden Atwood's "The Opposite of Secret"

From the foreward to singer Eden Atwood's newly published online memoir, The Opposite of Secret: "Eden Atwood led a dramatic, exciting, tumultuous, fascinating life – then she turned 20."

Yes, the sassy, talented and beautiful Atwood (who just happens to have AIS as well), is publishing her book online, one chapter at a time. Her writing style is compelling, and her story one that pulls you in from the opening paragraphs. Read about Atwood's struggles with family, growing up, and of course - AIS:

http://oppositeofsecret.blogspot.com

You can also check out a video interview with this remarkable woman here:

Alleged AIS Man (Evil Eunuchs) on CSI Miami

A recent episode of CSI Miami titled "Delko for Defense" continues the trend of bizarre and inaccurate portrayals of intersex individuals on television. I suppose we shouldn't be surprised. After all, every ethnic, cultural, and social minority has had its time in the evil villain spotlight. Why should intersex people be any different, right?

If you haven't seen the episode and don't mind wasting a half hour, the link to the show is here:

http://www.dailyworldbuzz.com/csi-miami-season-8-episode-11-delko-for-the-defense/6751/

If you don't care to watch, want to see my analysis, and don't mind spoilers, read on:

In sum, a typical, mild-mannered looking, boy-next-door type is chased down after the murder of a famous actress/model in her Miami home. Plentiful evidence clearly points to the man's guilt, until it is discovered by the coroner that the woman had been raped, sometime before her death. The suspect denies his involvement in the murder but refuses to submit to DNA tests, admitting he is hiding something - something so horrible that he rather go to prison than have the tests clear him of all guilt.

Just what is that horrible secret? A forced blood and DNA test clears him of the rape, but reveals the man is androgen insensitive. A forced physical examination in the men's room next reveals he doesn't have the right equipment for raping a woman either. We're led to believe that not only is this man unusually NOT well endowed... He's not really endowed at all. We're not told whether his genitals look more like a clitoris, but our imaginations are instead left to run wild.

Fast forward a bit, and the investigators learn of another woman who had been forced to an equally horrific and eerily similar ordeal to the dead woman's - but survived. (Apparently the killer had forced both of the women to cook him breakfast after the rape--why it is never explained.) The woman had survived narrowly escapes death because some kids come to the door selling cookies or something similar and the killer runs off. Interviewing the surviving woman, investigators realize that this is a tag team of killers. At least two were involved.

Fast forward yet again, they find the rapist, confirm it's his DNA that has been left on the dead woman's body, and confirm a close connection between him and the original suspect. After another very light interrogation of the original suspect, we discover he did kill the beautiful actress. He hastily admits to teaming up with the other psycho (who happens to be a sociopathic computer hacker/tech support nerd). The "real" man would do the raping. And our AIS man -- the "eunuch" the killing. It's poetry really... (sarcasm)

When asked why he would do such a thing, we discover the killer's horrific motive: It was the only way he could really be close with these women. Or something like that. Denied his masculinity, and denied the ability to seek sexual gratification with these ladies by lack of the "proper" anatomy, it seems the natural next step is murder.

(Sigh.)

So many things wrong with this episode. Don't get me wrong - it was a good laugh. Kind of like one long joke. And the killer's last line - his motive - was like the punchline.

If we want to deconstruct this all a bit though, I am having some trouble believing that the actor portraying the AIS individual could have had AIS. Though there are various grades of AIS... from a very mild form ("1" on a scale of "1 to 7") to complete AIS (a "7"), I don't see where this person would have fit. With a typical masculine face and facial hair, one would guess on the mild end of the spectrum -- yet this would have made his genitals typically male, or just a bit smaller than usual I believe. If he had been extremely androgen insensitive, which is what one would conclude on lack of male-looking equipment, this would have likely come with a significantly more feminine face and build. Heck - most complete AISers are indistinguishable from typical women.

I am not a doctor, but I would conclude that said individual did not have AIS at all, but something completely different.

Medicine and biology aside, I am also bugged by the continuation of themes portraying intersex people, or people who don't conform to gender stereotypes, as evil. You can go back to black and white films to find plenty of evil eunuchs (on a side note, usually Chinese). And movies from the past few decades are filled with lots of gay villains. Does the public really eat these up so much that this bizarre theme continues?

Furthermore, I think the idea that this "evil eunuch" has in his head that he cannot be with a woman sexually because he lacks the right goods down there - says a LOT about our society and our assumptions that one needs a traditional plug and a socket, a male cable and a female port, a ... well you get the picture, for sexual gratification. Get with it people!!!
Perhaps I will never understand...

What are you looking for?

I've had a sudden surge in traffic to my blog in the past few weeks, and was wondering why, so I checked out the web statistics and traffic sources to see what the top search words are that are leading people to this site.

The top searches leading you here?

Variations on "AIS women" or "AIS woman" (no surprise there). And then some other variations which I found telling... you type in words like "AIS women tall", "super models", "hot", "Elizabeth I", and most recently, "Caster Semenya". I guess none of these are surprising, but I thought it was interesting to see that people seem to be trying to confirm or negate what they've heard about women with AIS - that they are tall, or particularly attractive, or perhaps great athletes. People wonder whether Queen Elizabeth I or Joan of Arc really had the condition. They wonder if this is what Caster has, etc.

What is it that you are looking for? What would you like to know about AIS or women with AIS? I can't speak for all of us of course, but can tell you what my experience has been, and what I've learned from other women I've met. Feel free to post your questions.

The Myth of the AIS "Glamazons"

Something is bugging me about the popular press portrayal of women with AIS and/or CAIS. We're said to all look alike: tall, striking looks, perfect skin, beautiful hair, and a body that just won't stop...

Every day there's some blogger speculating about another super model or actress who must have AIS... "She totally must have it! Look how tall and curvy she is. That can't be 'natural'."

And just as often the speculation is followed by some snide remarks... "I'd hit that!" one guy will exclaim. "Huhuhhuh... she's a man!" pipes in another. "Well she certainly looks a little man-like if you look closely," comes another comment.

Beavis and Butthead's comments aside, everyone seems to be latching on to this idea that we all look the same. When in reality, there is much variety among the CAIS and partial AIS set as there is among XX women. Though one might be able to say we are taller than average as a whole, I'd say that's where the similarities end.

We are short, tall and average height. We are curvy, plump, slight, and slim. We are cute girl-next-door types, gorgeous bombshells, and Plain Janes. We are gay, straight, and bisexual. Some of us girly, others more rugged. Some of us are athletes. Some of us models. Some of us teachers, executives, postal workers, secretaries, or stay-at-home moms.

We are in virtually all ways but genetic, just like all the other women you see every day. You may have even met some of us and never even known it.

So stop the hunt--please. You're really not getting anywhere...

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...

UNDESCENDED WHAT???!!!

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?

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.

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.

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.

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.

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...