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Big Decision Time (LONG)

SarahAnnAlien (690359) writes | more than 8 years ago

User Journal

Looking back, I see that I've only been posting one or two journal entries a month. It's interesting that life is now so busy that I no longer seem to find the time to write about it! The truth is, it probably has more to do with time management issues than anything; there are now so many things I want to do, it's hard to find time for all of them.

Looking back, I see that I've only been posting one or two journal entries a month. It's interesting that life is now so busy that I no longer seem to find the time to write about it! The truth is, it probably has more to do with time management issues than anything; there are now so many things I want to do, it's hard to find time for all of them.

There are some big things coming up... or, to put it another way, there are two little things that are likely going away...

Sigh... this is going to be complicated. Let's review first. And, um, this time, I'm going to leave some of the euphemisms behind. Sorry, this is just to complicated and important to be coy.

I started college in 1986. My life slowly fell apart; by 1992 I had been diagnosed with "depression". Almost a decade later, nothing had changed, and I caught a psychiatrist doing something stupid and decided they were all idiots. I went looking for my own answers, did some rather frightening chemistry experiments on myself, and found something I didn't particularly want to find.

The problem, apparently, was testosterone. Switch off the testosterone by suppressing it with drugs, and my depression went away, shockingly abruptly: four days. Four days, and *everything* was different. I didn't hate myself, I didn't hate my body, I didn't want to die... no depression at all. Stop the drug, and the depression came back in another four days. Spironolactone, a blood pressure medication with a fairly weak testosterone-suppressing side effect, was the miracle drug that made this happen. Further experiments indicated that 17-beta estradiol (plain synthetic estrogen, more or less) would do the same thing, but would take several weeks to take effect.

I knew this implied some sort of gender disorder, but that didn't make a huge amount of sense: I had no intense, driving urge to change genders, nor was I particularly interested in clothing of either gender, so a standard "gender identity disorder" didn't seem to fit. And my genitalia, while perhaps not perfectly normal, seemed close enough, and would certainly not fit a diagnosis of an intersex disorder.

I didn't particularly mind the idea of being a woman... but neither did I mind the idea of being a man. My neurochemistry, on the other hand, appeared to have fairly strong feelings about the matter: Testosterone bad. Estrogen good.

On my first visit to my endocrinologist, he asked me what I wanted to do. I told him I wanted to keep the hormone doses just high enough to control the depression, but keep them as low as possible, and wait and see what happened in therapy before making any big changes. (To this day, I *still* don't think he gets that; he continually brings up the issue of "feminization", which is, by and large, not something that concerns me one way or another, but he seems to see it as some driving factor for me, probably because it's important to his other patients. Sigh.)

So, we kept the dosages low, and I went to work in therapy, trying to figure out what the heck was wrong with me, and what exactly we were going to do about it.

One of the first things I was shocked to discover about myself is that I had lived an almost genderless life... and, worse, all my life, I had failed to notice! I had spent my whole life thinking that I was a perfectly ordinary guy, when, in fact, that had been far, far from the case. And as time went on, and I talked about the issue with friends, several people confessed that they weren't surprised, because I had somehow never quite seemed male to them...

It also became clear as time went on that one of the fundamental things I had somehow been missing was the ability to perceive gender-specific differences. Somehow I missed things that, to other people, were simply obvious. This was less surprising to me, because several years before, I had noticed that girls were, in general, curvier in the waist and hips than men were, and it seemed odd to me that I hadn't noticed this fact until I was thirty years old! As the hormones did their thing, my perception of the world changed significantly. I began seeing things that I had never seen before; things I had obviously been missing all my life. And, as nearly as I can tell, the hormones started me through puberty, for the first time, in my late 30's, and junior high and high school finally began to make some sense!

So there I was, stuck, having lived a peculiar pseudo-genderless existence... which, by the way, was where my "alien" term came from.

What was I supposed to do next?

Well, it seemed to me that a clearly defined gender might be a step in the right direction... after all, everybody else has one, and most of my years of pain and isolation were driven by the fact that I didn't understand *why* I seemed to struggle with various sorts of social situations. Now that we sort of understood the problem, could I learn to fit in, somewhere?

I had wandered into my therapist's office thinking that I might, just *might*, be a male-to-female transsexual, and was now faced with the fact that the situation was much more complicated and subtle than that, and resolving it would be more an exercise in gender *acquisition* than it would be a change.

But... which gender should I try to acquire?

I thought about which I would prefer... and concluded that I shouldn't make any decisions on that basis. "I want to be a such-and-such" seemed like a really bad idea, because after all, I had wanted to commit suicide, I had wanted to slice myself up with sharp objects, I had wanted to drink until I passed out... there was no reason to believe that my judgement would be reliable in this case, either. I'd have to find some other way to make the decision. But how?

"Male" actually had a lot going for it. After all, the world thought that's where I already was! I looked male... although with the hormones, that would change to a certain extent, and we couldn't seem to stop the hormones without having my mood crash, and then drift back to the familiar depression. So hormones might be an issue, but on the plus side, I already had the societal recognition, and the inertia of a life lived in male mode, and the genitalia, um, more or less. All I'd have to do would be to learn to fit in as a man. But would I be able to do it? I'd already had thirty-five years and I had failed to make it work. Could I really learn to "be" a man, particularly when I'd apparently need to spend a lifetime without testosterone in my body?

*That* was the fundamental problem... not gender. Testosterone. My brain just didn't seem to be wired to cope with testosterone.

But... what would it be like to be a woman? Given that I had spent most of my life perceiving gender rather poorly... I had no idea. I didn't even have any particularly good stereotypes to use as a guide. What it would it be like? Different? Sure. Better? I had no idea.

Keep in mind, this whole thought process took place over several years... it was a slow, gradual sort of thing. I didn't sit down one day and say, "Hmm, what should I be?"

In the end, I basically decided not to decide... to just let things progress at their own pace... almost.

I did realize that "female" seemed the most likely answer, given the neuroendocrinology of the situation, so I did what I could to hedge my bets. I started electrolysis, started trying to learn about women's clothes, and basically tried to prepare myself for what seemed likely.

When people started calling me "ma'am", I was rather surprised... but not at all displeased. And gradually, things like using credit cards became rather awkward... "Can I see some ID, ma'am? ... Oh, sorry, *SIR*!" I gradually came to realize that this was really happening... society really was seeing me as a woman. And I was more than ok with it. And it just seemed to work, although I had no idea what the future would bring. So I did the appropriate paperwork to change my name, and got that magical "F" on my driver's license.

That was, oh, a year and a half ago. Since then, things have only gotten better. I have a lot of female friends now, and I enjoy spending time with them. And then there's the whole dating thing, something I had never managed to achieve before.

More importantly, I've had time to listen, observe, and learn what people of both genders are like, and see where I might fit in. The people like me... are the female ones. Except for that whole "I need a $600 purse" thing; that still makes *no* sense to me. But other than that, women just make sense to me; I can identify with them. When I look at men, I tend to giggle a little and wonder how I ever thought I fit in on that side of the world.

So, everything is wonderful, and now I'll get to live happily ever after, right?

Sigh... no. There are problems. Big, scary, unpleasant problems.

Problem #1: The spironolactone that helps suppress my testosterone also suppresses my, um... well, ok, my pooping. I haven't been able to go like a normal person in about two and a half years. Two. And. A. Half. Years. We've tried to stop the spironolactone... I do just fine without it, as long as I don't mind crying twenty hours a day or so. In fact, I do even better emotionally if I take *more* than I do now, but it also gives me screaming headaches, so we can't do that. And, um... let's just say it's rather icky having to keep careful track of whether you did or not, and more often than not, having to take drastic and unpleasant steps because you didn't. I've even been to the emergency room... not fun.

Problem #2: Compensating for the fact that I can't endure enough spironolactone to do the job means that I have to take more estrogen than we'd like me to take... particularly given that we know that I've already had one stroke, although we have no particular reason to guess that it was estrogen-related. I'm definitely at risk for another stroke now, though. As my neurologist said, "Wow, I've never met anyone taking that much estrogen!" We could switch me to a different testosterone suppressant, cyproterone acetate, which only has the minor drawback that it's not legally available for sale in the USA. Or we could randomly try other anti-androgens that tend to have problematic side effects of their own.

Problem #3: One thing that reduces the risk of stroke is aspirin. At least, that's the conventional wisdom at the moment. Except that apparently I can't tolerate long-term aspirin therapy. My guess is that there's still some subtle remaining damage to the blood-brain barrier as a result of the stroke, but I doubt we'll ever know for sure. I do know that after a few months on aspirin, I start having weird, nonspecific fatigue, aches, and pains. Stopping the aspirin makes the problems go away.

Problem #4: My, um, parts "down there" never really were "normal", only normal-ish. I had one surgery when I was a child, and another four or five years ago, to fix some painful problems. But there's still pain down there, sometimes quite a lot of it.

Problem #5: I've been having what seem to be neurological problems. Memory, concentration, and balance all seem to be affected... and it's getting worse. The memory and concentration have gotten bad enough to disrupt my performance at work, and I've already taken a couple of rather unpleasant falls at home due to the balance problem. We don't have an explanation for this yet. It might be due to the high estrogen, or the lack of testosterone, or I might have had another stroke or two, and not noticed.

So all is not wonderful. What can I do about it?

At this point, it seems that having my body produce testosterone is, in general, a bad thing, and anything we can do to minimize that, and reduce my need to rely on drugs to suppress it, would seem to be a big win safety-wise.

So there are two basic choices for that: orchiectomy (removing the testicles), or sex reassignment surgery (SRS).

For the last couple of years, I had regarded SRS as being more-or-less impossible for financial reasons... until my Dad more-or-less volunteered to pay for it, much to my surprise. More on that some other time.

So, I can go either way at this point...

... but quite frankly, I struggle to envision a scenario where I want to have major *elective* abdominal surgery given that I haven't pooped normally in two and half years! Yes, we can do that if we have to, but I doubt it's the best choice right now.

And SRS is no picnic. I'd have to choose a surgeon, and I'd probably need to visit several in various places around the country, and possibly the world. I'd almost certainly need major genital electrolysis before surgery. Then the surgery. Then at least six weeks of recovery time... probably more for me. And, um to put it bluntly, there isn't enough tissue "down there" to do a reasonable vaginoplasty, so I'd need significant skin grafting... and have a second surgical site to heal as well. And then there's dilation: using a surgical stent (fancy name for a big plastic stick) to stretch my new opening, to keep my body from closing it up during the healing process. Weeks and weeks of painful dilation... followed by a lifetime more.

But, really, neither the tummy trouble nor the rather challenging nature of SRS are show-stoppers at this point. There's a more important issue.

My focus, right now, is on learning to live... something I've never really done before. Make a home for myself. Make friends. Learn what it means to be a woman. Figure out what I'm going to do with the rest of my life.

Do I really want to put all of that on hold for several months so somebody can put a big hole in my crotch?

The life is important to me. I've never had one before, and I do want to have one. What I've built for myself so far is very precious to me.

Making my genitals look like every other woman? Yes, that would be nice... for a variety of reasons. I'd like to fit in "down there" too. And maybe more importantly, it would give me important social and legal recognition that I can't get any other way.

But I don't think my health is good enough to endure that right now. I don't think I'm physically *or* emotionally prepared to deal with the pain and trauma. I need more time to grow up, to build my new life, and to improve my health.

So it seems to me that the no-brainer solution is to go for the orchiectomy now, and worry about SRS some other time. My guess is that I'll spend about a year working to get my health back, and plan for SRS sometime in 2007 or 2008, if all goes well.

So, that's my plan, now the only trick is to get everybody to agree to it...

My endocrinologist is on board. He said that it wouldn't be a bad idea if I'm not planning to have SRS soon, gave me the name of a local doctor he's referred other patients to, and said he'd write me a letter of reference when I'm ready.

My therapist... was very, very ambivalent about it. When I finally got brave enough to ask her why, she said, "well..." and proceeded to tell me that sometimes people decide not to have SRS after having an orchiectomy. Apparently SRS is more important to her than it is to me... sigh. Sometimes she seems to understand me, and other times she just doesn't. However, after carefully explaining all of my reasoning, she apparently agrees that it might be prudent for health reasons.

My neurologist... actually, he doesn't seem to mind one way or another, but personally, I want to make sure we understand as much about what's going on with my brain as possible *before* we start making big changes. I talked it over with him, and we're going to be doing another MRI, and a day-long series of neuropsychological tests to try to document and measure my memory and concentration problems, so we can track whether they're getting better or worse over time.

My urologist... well, I don't have one at the moment; the guy who did my surgery down there a few years back has since moved on, and he didn't know about all of this gender stuff... back then, neither did I. So, I have an appointment with a new urologist tomorrow morning. I really don't know what he'll say. As with the neurology, my priority right now is to find out what the current state of things "down there" looks like, and also talk with him about the alternatives. And since one of the alternatives they offered me back then was orchiectomy, I imagine they should be okay with it now, although it wouldn't surprise me if they were perfectly willing to remove the testicles of a mostly-normal man, but reluctant to do so for a transgendered woman. Doctors are sometimes weird in ways like that. With any luck, a good urologist should be able to make the orchiectomy happen, maybe even within my health insurance, since I'm fundamentally seeking it for medical, not cosmetic reasons. Unfortunately, it is very likely that the insurance company and/or the doctor will think, "oh, well, you were a boy and decided you wanted to be a girl, so it's cosmetic!" Idiots. *Nobody* will see the difference, ok? Not even me... at this point, it takes a bit of a search to discover that they're actually down there! (Which makes it a bit difficult to do a self-exam for testicular cancer... which I'm probably also a high risk for.)

With any luck, the urologist will be clueful, so we'll probably do an initial visit, some labs, scrotal and abdominal ultrasound, followup visit... and then, maybe, it will be time to talk about scheduling surgery. I'm guessing we'll get to that point by late February or early March. And keep in mind, the orchiectomy is a simple in-office procedure, even via the inguinal route, which in simple terms means they'll need to come out via the top rather than the bottom. They may want to drug me and drag me to an O.R. so that a bunch of medical students can watch, though. Or maybe I'll end up going to endocrinologist's guy, who is probably in private practice.

I'm also hoping that I can get the urologist to request some fairly detailed tissue pathology; there are some genetic disorders that are only expressed in the DNA of reproductive tissue. While any of these are unlikely to be the root cause of my gender problems, and wouldn't change anything one way or another, the orchiectomy will be the only chance to test that particular tissue, and, honestly, I'd just like to know.

And then there's the psychiatrist... I'll probably need a psych evaluation from a shrink. Since I don't yet know who this will be or what his or her attitude is towards gender disorders, I have no idea what he or she will be like. Probably I'll get a referral from my therapist, who can send me to someone she *knows* has a clue... sigh. I *really* don't like psychiatrists. Their incompetence cost me a decade of my life.

What am I going to do if I can't get everyone on board? Honestly, I don't know. Endure the pain, deal with the pooping problem, and pray that I don't have another stroke. What else can I do?

Most of the objections I've heard tend to be something like, well, are you sure, what if you change your mind, what if you want to go back... stuff like that.

These people are still stuck on the notion that I'm trying to get from point A to point B. And it seems like, no matter how many times I try to explain it, they are simply incapable of understanding that I'm trying to get to point A *or* point B, having never been at either point, ever.

What if I want to "go back"? Well, it wouldn't take much to become a big fat hairy suicidal alcoholic again... all I need to do is stop my meds, get a bad haircut, gain a hundred pounds or so... then I'm only six or eight glasses of wine away from being my former self... I don't really see what my genitalia have to do with anything...

Oh, you mean what if I decide I want to live as a man... well, given that, apparently, I've *never* done so, it honestly doesn't worry me that much... I wouldn't really know where to start, or why! But, honestly, the medical situation is what it is at this point, regardless of which gender I'm living in now, or in the future. The neuroendocrinology has been very stable, and seems unlikely to change. In the unlikely event that I decide to live in some gender other than my current one, it will have to be without testosterone, regardless of what surgeries I end up having. So "what if" doesn't really make a difference, does it? I'll have to deal with it either way.

There's really only one thing that scares me: surgery that alters endocrine function changes the rules yet again for my neurochemistry. It took me a decade to find the right thing to "fix" my brain, and it's been two and a half years of constant fiddling to keep everything working right. When we change the rules... well, we do have good reason to believe that the situation will become simpler and easier to manage. That's why we're considering doing it, after all! But if, by chance, it turns out that we're all wrong... I don't think I would survive another decade in hell searching for a new "fix" for my neurochemistry.

And, so, well, that's where things are right now.

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