Tuesday, 15 August 2017

To have a body which defies basic biology

Even after over twelve years of actively dealing with this highly unusual body of mine, there are still new things which I am learning about it. Most recently I went back to take a more detailed look at my first puberty (starting around age 11), due to the current changes affecting my body since 2015 as a result of my second puberty.

This second puberty involves my ovaries producing normal female levels of oestrogens. It also involves my breasts growing by one cup size (and continuing...), despite years of boosting my female hormone levels with artificial oestradiol, and also very significantly far more intensive and painful periods.

Because of all these changes, I got curious what actually had happened to my body during my first puberty and why. One of the most significant findings, I feel, is that although most of the secondary sexual characteristics development to my body during that time were quite underwhelming, my skeleton was the one exception.

Although basically ignored by doctors so far, I have a normal female pelvis, along with the typical shape of the arms to fit a feminine curvature. This to me isn't new, but previously I hadn't really looked at what triggers the skeleton to shape itself like this during puberty. As it turns out, an elevated level of oestrogens is one of the primary triggers. This essentially means that together with what I experienced as menstruation pains at the age of 11, it's very definite that at least one of my ovaries began to work around that time, causing my first period, the onset of breast growth and these changes to my skeleton.

And beyond the latter very little really changed, until a few years ago.

At this point I'm still trying to learn about this body of mine, even as it changes again and again. As I recently discussed with two of my doctors - alongside a fresh ultrasound of my abdomen - at this point many of the pains and discomforts I experience are those normally experienced by a human female during and after puberty. Only I haven't really experienced puberty before. Not fully. Not like this.

It makes me wonder what exactly underlies these changes. Was having the underdeveloped testicles and with it the already relatively low source of testosterone (~1.2 nmol/L, relative to <0 .7="" and="" female="" level="" normal="">7 nmol/L for males) instrumental in this? Was it something about me using the contraceptive pill which somehow kickstarted my ovaries into producing normal levels? What's so special about my current hormone levels that it caused breast growth to resume, after it having stalled despite years of hormone replacement therapy?

Maybe it's to do with the fact that I'm a chimaera: possessing two distinct stem cell lines, both from my (XY) brother and (XX) sister. Maybe the latter cells are taking over now, enabling my body to respond differently to existing impulses and triggers now. Maybe this is actively reverting my physical age as well, by replacing older cells from the XY stem cell line with previously dormant cells from the XX line.

It's very likely that I will never find out the answer to these questions, nor to the cause behind whatever is causing inflammation-like effects in my lower abdomen during menstruation, in addition to pushing on nerves innervating my right leg, causing the pain and numbness there. Doctors seem to have no interest in my case, preferring to ignore my unusual biology, instead stuffing me into a standard category and dismissing me as such.

Meanwhile this body is the daily reality I have to live with. It's what I see, first thing in the morning. It's what I have to dress, clean, feed and which allows me to move around and exist in this world. I'm still coming to terms with that. I'm no longer a child. I cannot keep up that fantasy any longer.

I feel that my body is changing. It, too, seems to realise that I am no longer a child. Maybe this is what it feels like to turn from a child into a woman. I guess in practical terms I'm physically and emotionally roughly on the level of a 15- or 16-year old woman. Just a teenager, rediscovering her own body and with all the emotions and thoughts that come with it.

Yet I am also alone. So terribly alone. No mother, father or siblings around. No friends or classmates with whom one can share stories and experience, in order to deal with this confusing time together. I try to get answers and understanding, knowledge from where I can, yet I feel the distance growing between me and 'normal' people, even as doctors still refuse to accept even the basic reality of my body's anatomy, or provide conflicting opinions on what they feel reality should be like.

Dealing with all of this is really tough, and I do not feel that I'll ever truly feel like I can relate to all of these 'normal' people around me. The way they have and continue to experience life is just too different. A lot here depends on how the coming time will work out, of course. I now have assistance with finding medical help which might allow me to get these answers, as well as psychotherapy to help me cope with my post-traumatic stress disorder and other assorted traumas. Maybe I'll also be able to dodge becoming homeless this year, due to other external forces beyond my control.

Maybe I'll even figure out one day what and who I am.


1 comment:

Sheila Nagig said...

I wish you didn't have to go through this by yourself. It's a lot to take on. I hope that it is bringing your body more into line with the person you feel that you are. It would be some compensation for all that you have been through in the past if you can end up where you want to be with your body. You have my respect. It wouldn't have been easy for anyone.