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?

Doctor's Response and a Planned Disclosure

I got my first response to my outreach letters a few days ago. From the head of urology at a hospital that treats children, and they are "ramping up" their expertise and services to children with DSD, so he said my letter came at the perfect time!

I am really looking forward to getting contacted the next time they have a patient or family who would like some peer support.

As for the amazing guy I mentioned a few posts previously - he and I have had three "dates" thus far and the next one is scheduled for Sunday. It has been nearly impossible to see each other given my being out of town for work, his being out of town for vacation, and even more trips planned coming up. Aside from that though, I am sensing a slowness on his part. And we are both really patiently and deliberately getting to know one another without rushing anything. I like this approach. A lot.

This guy is really unlike anyone I think I've ever met, and I find myself really treasuring our conversations. There has been absolutely zero physical contact, but due to the nature of our conversations and some email exchanges, I feel in some ways more intimate with him than I have felt with anyone for a very long time.

In this case I've chosen a somewhat phased approach to disclosure of having AIS.

On our third date, my being infertile came up. I had broached the subject in an earlier email where we discussed the pivotal "events" in our lives that had shaped us. He has shared some very heavy stuff with me already, so on date #3 I related the story of my surgery at 17 and the events leading up to it. He now knows exactly what I knew up until 2 1/2 - 3 years ago. I told him there was more to the story, but that I'd have to save the rest for another time given how short our last date had to be.

On Sunday most likely, I'll bring up the AIS. I'm half nervous. And half strangely not. If everything I've interpeted about this guy's character is true, it will be no big deal, and he will respect me more for having shared it with him, and for the positive things I have done with my new-found knowledge.

And if not? Well, I'll cross that bridge then.

His reaction to the infertility issue was surprise that it had really ever bugged anyone else, and reassurance that this wasn't an issue for him. I am crossing my fingers and hoping for an equally positive reaction to the next big "event" in my life where I learned the full truth of my diagnosis.

I'll keep you updated. Send good vibes.

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!

Brief Updates

I met an amazing guy very recently. If experience has taught me anything about blogging - even somewhat anonymously - and having a pretty open, candid dialogue about my having AIS with the new people in my life - it's that I should stop posting any potentially personally-identifiable details here so disaster does not ensue.

So I will say no more, other than I am excited to have met someone with such a great depth of character, who has had to grapple with a lot of unplanned events, as well as struggle with issues surrounding faith and personal identity. I am only just beginning to get to know this person so have not needed to "disclose" anything, but I am hopeful that he will appreciate my own recent revelations and see the parallels between his journey and mine. In the meantime, we will need to wait a bit to see what kind of role he might play in my life.

In other news - I got my medical records from my gynecologist of almost two decades past. They were not very revealing. They did not tell me anything I did not already know, and in some respects seemed a bit incomplete. They made reference to a letter from my surgeon (which I acquired separately). I wonder if they were selective in what they sent to me?

At any rate, I think I have everything I will ever receive now, and that is enough. I wrote and sent letters to both the gyno and the surgeon and made them aware of my knowledge of my condition and asked that they give my contact information to other women and families facing these circumstances. I also sent similar letters to some doctors in my current area. I have still not heard anything from anyone, but hope to get at least a response or two.

At the Endo's Office

I made my first visit to my new doctor yesterday. She's a reproductive endocrinologist. Probably 99% of the women who visit are there about... well, reproduction... I liked my doctor immediately because she recognized that, and rather than pretend like my last endo that she had seen "tons" of patients like me, she admitted she had only had a few. That's a good sign, because statistically speaking, there aren't too many of us out there.

They did a blood test and checked my hormone levels. Things looked a tad bit lower than optimal, so she's changing my Estradiol dosage and timing slightly. I'll take two smaller doses per day rather than one bigger one each evening so that my body can better process it. I'm a little bit nervous about having higher levels of estrogen in my system. My current job doesn't allow me to be irrational or overly emotional, and I guess I'm concerned that this is going to throw me off kilter awhile. I guess we'll see.

Because I arrived at the office so early, I got about 45 minutes to sit in the waiting room and people-watch. I lived in New York City for eight years, and on my daily commute via subway I enjoyed studying each person in the subway car and inventing little fictions about them. Now living in a smaller town without public transport, I have less opportunity to do that, so the waiting room gave me the opportunity.

I watched the heavy-set, nervous couple next to me and imagined the conversations they had about their difficulty conceiving. He did not look happy to be there, and I wondered if he was missing an important day at work, or perhaps insisted that their troubles conceiving were her fault and not his. At least half a dozen different women in their 30s came in alone at different times. Most seemed to be wearing floral skirts, as if the skirt was simpler to remove and put back on again before and after getting up in the stirrups. I'm guessing most were there for fertility treatments of some sort. Another, very sweet-looking couple appeared. The woman's face was pained and concerned. It was only her husband/boyfriend who was called to the back offices, maybe to provide a "sample" of some sort. Finally, a few young women came in and left quickly, their upper arms bandaged, looking relieved as if they'd accomplished something. Norplant recipients I guessed.

It struck me as significant that everyone had come to this same place for such very different reasons. I wished that it were like a marketplace, and people could trade what they didn't want for what they truly desired. It must have been tough for the hopeful couples or the women having trouble getting pregnant watch as others came in for the sole purpose of preventing a pregnancy.

I wondered briefly, as I sometimes do but less and less, about how my own life would have been different had I been a "typical" woman. Fertility could still have been an issue, like for many women. But perhaps I would have found myself making an entirely different set of decisions about my life had certain doors not been closed years ago.

Maybe I would have stayed near my small town and taken that full-ride scholarship that I'd been offered from the state university. Studied something more "reliable" like accounting. Maybe I would have had a boyfriend early on and married young. Had a few children at 25. And never moved anywhere else, or even left the country. Maybe I wouldn't have had half the experiences I've had, or met a quarter of the people... No riding the last waves of the dot-com era in New York. No stumbling out of the Limelight at 4:30 am. No treks through the Thai jungle or late night drinks with AP journalists under the stars in remote Ratanakiri. No list of friends all around the globe I want to visit. No time to study and read and write whatever and wherever it was I wanted.

That's not to say that a different sort of life would not have been fantastic... I once had a small crush on a guy who goes to my gym. Until I found out he was married. To his high school sweetheart. They have three gorgeous little boys. (If given the choice, I would always choose sons over daughters too.) When I learned he was clearly and unambiguously taken, I think I fell in love with his family instead, and I sometimes fantasize about what it would have been like to be him or his wife. To have been born and grow up here, live an "all-American" life, fall in love, marry, and do everything the "traditional" way. There is an odd sort of comfort to the idea, even for me. And a sweetness, which, though it might be illusory, is something I like to think about. I wonder if either of them would look at my life and wonder in the same way.

Letter to My Doctor

I've decided it's time for me to write a letter to the doctor who initially diagnosed me with AIS at the age of seventeen. This is an important step for many of us whom were either lied to, told half-truths, or told, "You are one of only a few people in the world with this, and you'll never meet another person like you," or the also-popular, shame-inducing "Don't tell anyone."

Although I did harbor some anger with my gynecologist for not telling me the truth, and having no plan to ever tell me the truth, and no plan to get me any sort of psychological care post-surgery, I believe that I've worked through that and am in a more positive place. I think instead about what effect I would like to have on her and on the world, and have written a letter which doesn't bring up past grievances, but instead focuses on the future. Here it is below. I would be curious to hear what people think. Her name removed to protect her privacy:

Dear Dr. XYZ:

I am a former patient of yours whom you last saw 17-18 years ago. I visited your office as a teen with primary amenorrhea. Although I do not remember all the details, I recount that I was told that I had a congenital abnormality that had affected my internal, female sex organs, and that if not operated on, would likely become cancerous. Months later in Omaha, I had what I believed to be a hysterectomy performed.

A few years ago, in my early 30s, I discovered the true details surrounding my diagnosis of Androgen Insensitivity Syndrome. Although I was initially shocked and upset to discover the reality of the situation, I have been able to quickly come to terms with the diagnosis. Learning the truth has resolved a lot of unanswered questions about my body, and past events, and in some ways given me greater peace than I had when I thought I was an unfortunate woman with a potentially cancerous deformity. I have also connected with an amazing group of women with AIS and related DSD (disorders of sex development), and am active with a group called the AIS-DSD Support Group for Women and Families.

I write to you for two reasons. First, to request that you and your colleagues who still practice in gynecology, urology, pediatrics and other fields, become more aware of these conditions and more current best-case practices for treatment (which involve full disclosure to the patient over time and as age-appropriate). There is a wonderful network of medical, psychological, and peer support throughout North America surrounding DSD. Second, to offer myself as a resource should anyone in the area be diagnosed with AIS, Sywer Syndrome, Congenital Adrenal Hyperplasia, or other DSD, and want to speak with someone who has lived a similar experience. I have no formal medical training myself, and of course would not offer medical advice. However, I and many others have found that peer support is a crucial piece in living happily with a DSD.

If you or any of your colleagues have met, or meet patients in the future with AIS, Swyer Syndrome, or other DSD, I am glad to offer my contact information to you, your colleagues, or to these patients or their families directly. I am happy to share my experience or relate experiences of friends and acquaintances of mine living with this and similar conditions. To discuss further, you may write to me at the above address, or contact me by phone or email.

Thank you for your time.

Sincerely,

XYZ

Quest for more Medical Records

In a recent post I believe I mentioned wanting to hunt down my remaining medical records, should they still exist. I've had mixed luck. The records from my hernia procedure at age two have already been destroyed. It took place in upstate New York, and New York state law only requires that records for a minor be kept until after the patient reaches the age of 18.

Still working on the records from my gynecologist when I was a teen. Although I have the hospital records which explicitly show that she and the surgeon lied to me, I only just a week ago requested the records from the gynecologist. I am nervous that they will be hidden or destroyed, as I hear is sometimes the case when patients with DSD (disorders of sex development) request them. I grew up in Nebraska, and according to Nebraska state law, the records must have been kept at least ten years, but in practice are often kept longer. Let's hope it's the latter. The last I checked, they had not been faxed yet to my new doctor's office.

Georgetown University has a useful reference on medical records, laws by state, and your rights under HIPAA. Have a look at http://hpi.georgetown.edu/privacy/records.html