The past months have been for a large part been about figuring out what's going on with my body, starting with me raising the alarm about the right side of my body going numb. One thing led to another there, and one MRI scan of my head and one lumbar puncture later I have at least learned that I actually have a brain and that I have white spots in my brain, which presumably are lesions from old migraine attacks. Or maybe not.
Currently I'm recovering from the effects of said lumbar puncture, as the taking of just a few mL of cerebrospinal fluid (CSF) from my central nervous system seems to have knocked me out of commission for at least a good week. Starting on Wednesday I found myself with severe headaches, nausea and so on. I consulted with the neurologist on Thursday and learned that it's normal to experience 1 to 2 weeks of headaches after an LP. Swell.
During that same appointment with the neurologist I also learned that so far the CSF looked good, but they're now waiting for the important tests, all of which will take time. My next appointment with the neurologist is in October. Presumably I'll get the all-clear then, or maybe they have found something else. Not something related to the numbness in my right leg, at least, as I seem to have found the cause for that already.
Well, a good suspicion of the cause, at least. As my body keeps transforming into a regular female body along with all of the hormonal fun that encompasses, various tissues in my body are responding severely to this. During a recent ultrasound at my GP's office I learned that my intestines are unusually active, likely also triggered by the much stronger hormonal cycle that my body is going through. This might explain some of the excessive bloatedness of my abdomen each month.
Another interesting thing that I have noticed is that older and more recent scars on my body seem to have become sensitive all of a sudden, as well as more visible, with the scar tissue seemingly vanishing. This would fit in with other signs of rejuvenation which I have noticed so far. It feels as if my body is reshaping itself; becoming younger and changing into what seems to be a more feminine form.
It's all very strange.
At this point it's mostly just me trying to figure out what is actually going on with this body. I expect the neurological examinations to not result in anything remarkable, leaving that as a dead-end course of investigation. Even though I have a licensed doctor now handling the finding of medical help for me, the going is slow. The clinic in Hamburg turned out to be a dead-end. Now the focus is on Berlin. It seems irrational to expect any kind of medical help with whatever is happening to my body.
Then again, hope is a purely irrational thing. Even though I have zero expectations of any doctor ever finding themselves interested in my case and also capable of helping me, it's impossible to eradicate the yearning and hoping for exactly that kind of help.
In short, my body is beginning to feel ever more alien to me, even though many of the changes do seem positive to me. The main issue I have with it is that I cannot say why any of it is happening, and which other changes I may expect. There's also no backup from doctors or the like as all of this is going on.
There's just lil' ol' me, trying to manage the medical experiment that is my body as well as I can.
Maya
Tuesday, 29 August 2017
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.
Maya
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.
Maya
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