I'm really grateful to have a day job which keeps my full attention occupied. That was one of the first thoughts I had earlier when I got home from work and found myself bursting out in tears within minutes. There truly is nothing which is more frightening to me than to be alone with my thoughts. Or more succinctly, the terror of having to confront the possible answers to the questions I fear the most.
I keep playing through the last conversation I had with the endocrinologist in my head, poking at it, analysing it to figure out how to interpret what has been said. I know that tomorrow's meeting is just about clearing up and synchronising on where I have been the past eleven years with which doctors.
Yet my PTSD does not care about that. I'm just feeling terribly upset and terrified. It feels just like those nightmares I sometimes have in which I am just living out my last day, knowing that come tomorrow, I will be executed. Knowing that it won't be anything like that, and likely should be one of the most wonderful days in my life as true progress will be made again does not help in the slightest. The feeling of absolute terror remains.
Hoping and knowing that yes, I will get help and answers tomorrow, as well as a real outlook on the end of this horrible nightmare which has now occupied every waking moment for more than two decades. Yet fearing that tomorrow the hope I have will be crushed again, to maybe never recover again.
Terrified of being hurt again, yet knowing that not asking for help also means to suffer.
Will you help me, please?
Maya
Wednesday, 17 February 2016
Tuesday, 16 February 2016
The 'sick of counting down' countdown
All of us will find ourselves anxiously counting down the days to something important, whether it is to hear the news about a graduation, a pregnancy or a surgery's outcome. All of them are life-changing events and important in their own right.
Now picture waiting for such an event, only to be told to wait another few weeks or months. And again. And again. Even as you begin to piece together a picture of the truth, you just keep hitting that same brick over and over as you find yourself unable to answer the question of why it seems so ridiculously important to these people to not tell you something which in the end should only be important to you.
Cue conspiracy theories and a slow descend into madness.
The questions I have been wondering about for over eleven years now involve such irrelevant details like whether I am fertile in any way, and what I might have to tell a prospective partner about how this body of mine is put together. More importantly it concerns these monthly pains I have suffered through since that one horrific day when I was eleven years old and everybody thought that I had made up that terrible pain which made me think I was dying.
Related to it there are also questions about my future health, considering that my reproductive organs did develop in a way which is everything but regular. Reports of increased cases of cancer and other unpleasantness by hermaphrodites do have me worried.
For at this point I know what my body is; at the very least the rough outline. I am not male. I am not female. I have reproductive organs of both, yet not convincingly one or the other side. Ergo I am a hermaphrodite. All I need now is help from doctors who do not try to make me believe I am crazy. Few things are more discouraging than to wait months, counting down every day at the end, only to have a doctor dismiss you like that, telling you to start realising that you're a transsexual, even when you know that's the one thing you are not.
It's much easier to believe in yourself when you don't have an army of doctors and psychologists telling you that what you think and what you see in the mirror is all wrong, but that they'll help you see things the right way. Forcefully if need be.
It's much easier to never have to count down to a chance to learn the truth any more.
I'm not insane. I'm just going through this same thing over and over, yet expecting a different outcome.
Just two more days left in this countdown.
Maya
Now picture waiting for such an event, only to be told to wait another few weeks or months. And again. And again. Even as you begin to piece together a picture of the truth, you just keep hitting that same brick over and over as you find yourself unable to answer the question of why it seems so ridiculously important to these people to not tell you something which in the end should only be important to you.
Cue conspiracy theories and a slow descend into madness.
The questions I have been wondering about for over eleven years now involve such irrelevant details like whether I am fertile in any way, and what I might have to tell a prospective partner about how this body of mine is put together. More importantly it concerns these monthly pains I have suffered through since that one horrific day when I was eleven years old and everybody thought that I had made up that terrible pain which made me think I was dying.
Related to it there are also questions about my future health, considering that my reproductive organs did develop in a way which is everything but regular. Reports of increased cases of cancer and other unpleasantness by hermaphrodites do have me worried.
For at this point I know what my body is; at the very least the rough outline. I am not male. I am not female. I have reproductive organs of both, yet not convincingly one or the other side. Ergo I am a hermaphrodite. All I need now is help from doctors who do not try to make me believe I am crazy. Few things are more discouraging than to wait months, counting down every day at the end, only to have a doctor dismiss you like that, telling you to start realising that you're a transsexual, even when you know that's the one thing you are not.
It's much easier to believe in yourself when you don't have an army of doctors and psychologists telling you that what you think and what you see in the mirror is all wrong, but that they'll help you see things the right way. Forcefully if need be.
It's much easier to never have to count down to a chance to learn the truth any more.
I'm not insane. I'm just going through this same thing over and over, yet expecting a different outcome.
Just two more days left in this countdown.
Maya
Wednesday, 10 February 2016
The problem with things not going wrong
Today I had to have some blood drawn at the clinic as I wrote a few days ago for the third blood test. It was mostly a weird experience this time. First of all due to having to wait for nearly an hour beyond my appointment time despite there being no one else waiting. Secondly when I asked after the test results which I was supposed to receive the results of, they weren't able to access the data or such. It was just weird.
Being forced to sit there in a clinic's waiting room made it basically impossible for me to escape the many memories and thoughts which spring forth from the traumatised parts of one's past. I'm not sure I'll ever learn to not distrust and fear doctors and everything associated with them. I would really like to, though.
The worst part probably has to be the intense paranoia one has to suffer through, imagining one scenario after another based upon a severe lack of information and likelihoods, whether real or imagined. Next week Thursday is my next appointment with the endocrinologist and this intersex specialist. I hope I can not have nightmares and a general lack of sleep until then. And of course that it all goes as hoped.
Sitting there in the waiting area of the clinic I realised just how intense my fear of anything medical is. The fear of being judged, of being dismissed, of being called crazy again, of having all of my symptoms dismissed as being merely psychosomatic.
While I had my blood drawn today, I caught a glimpse of my open medical file on the computer screen next to me. While it seemed generally positive in the sense of what one would expect from a doctor who is exploring a puzzling case, it also listed the wonderment about me having a monthly cycle despite this being unlikely due to my low female hormone levels.
As I'm going through the motions of menstruating today again, I can only wish that these pains were only psychosomatic. What lunatic would voluntarily sign up for these cramps, pains and upset abdomen?
Please let this year be the end of this maddening journey...
Maya
Being forced to sit there in a clinic's waiting room made it basically impossible for me to escape the many memories and thoughts which spring forth from the traumatised parts of one's past. I'm not sure I'll ever learn to not distrust and fear doctors and everything associated with them. I would really like to, though.
The worst part probably has to be the intense paranoia one has to suffer through, imagining one scenario after another based upon a severe lack of information and likelihoods, whether real or imagined. Next week Thursday is my next appointment with the endocrinologist and this intersex specialist. I hope I can not have nightmares and a general lack of sleep until then. And of course that it all goes as hoped.
Sitting there in the waiting area of the clinic I realised just how intense my fear of anything medical is. The fear of being judged, of being dismissed, of being called crazy again, of having all of my symptoms dismissed as being merely psychosomatic.
While I had my blood drawn today, I caught a glimpse of my open medical file on the computer screen next to me. While it seemed generally positive in the sense of what one would expect from a doctor who is exploring a puzzling case, it also listed the wonderment about me having a monthly cycle despite this being unlikely due to my low female hormone levels.
As I'm going through the motions of menstruating today again, I can only wish that these pains were only psychosomatic. What lunatic would voluntarily sign up for these cramps, pains and upset abdomen?
Please let this year be the end of this maddening journey...
Maya
Sunday, 7 February 2016
Veiled worlds: a new short story
I just published a new short story, which can be read for free at Scribd:
https://www.scribd.com/doc/298310456/Veiled-Worlds
It's 7 pages in total, with as main genre 'thriller'. Due to certain... graphic scenes I'd recommend it for ages 16+.
Now, for those interested I will discuss the why and what of this story below. This means spoilers, naturally.
I first got the idea for this story last year and even began to work on it. The central premise is that of being close to 'normal' life, yet unable to interact with the people inhabiting that normal life despite there only being a flimsy barrier between them and the main character.
The actual events described in the story are partially based on my own experiences, specifically the scenes of domestic abuse, and my own experiences of feeling isolated from normal society. The latter contributed significantly to the original idea for the story as well as the feelings experienced by the main character.
I can say that I have never been physically tied down in the way that the main character in the story was, but the feeling of psychological bonds are quite similar. There was also that event where a doctor sent the police after me, who then had me locked up in a cell for an entire night for no good reason. That feeling of helplessness, hopelessness and the intense realisation that nothing you can do matters is among the most horrible feelings a human being can ever fear to experience.
With that latter event there was also a large amount of humiliation involved, of the kind described in the story, just less messy and with a lot less privacy. They are things which should be traumatising to any sane, reasonable human being and I feel that it is that kind of debasement, of reducing a human being to something less than a beast which is among the most inhumane of acts.
To me this story is relatively extreme, and I have questioned for a while whether or not I should even publish it. In the end I feel that it is still a story others may wish to read, even if it's not exactly a pleasant read. I hope that you, the reader, will agree with that assessment.
As for the ending of the story, the question of whether the main character survives is left open. In the end it's not what it is about after all, don't you agree?
Maya
https://www.scribd.com/doc/298310456/Veiled-Worlds
It's 7 pages in total, with as main genre 'thriller'. Due to certain... graphic scenes I'd recommend it for ages 16+.
Now, for those interested I will discuss the why and what of this story below. This means spoilers, naturally.
I first got the idea for this story last year and even began to work on it. The central premise is that of being close to 'normal' life, yet unable to interact with the people inhabiting that normal life despite there only being a flimsy barrier between them and the main character.
The actual events described in the story are partially based on my own experiences, specifically the scenes of domestic abuse, and my own experiences of feeling isolated from normal society. The latter contributed significantly to the original idea for the story as well as the feelings experienced by the main character.
I can say that I have never been physically tied down in the way that the main character in the story was, but the feeling of psychological bonds are quite similar. There was also that event where a doctor sent the police after me, who then had me locked up in a cell for an entire night for no good reason. That feeling of helplessness, hopelessness and the intense realisation that nothing you can do matters is among the most horrible feelings a human being can ever fear to experience.
With that latter event there was also a large amount of humiliation involved, of the kind described in the story, just less messy and with a lot less privacy. They are things which should be traumatising to any sane, reasonable human being and I feel that it is that kind of debasement, of reducing a human being to something less than a beast which is among the most inhumane of acts.
To me this story is relatively extreme, and I have questioned for a while whether or not I should even publish it. In the end I feel that it is still a story others may wish to read, even if it's not exactly a pleasant read. I hope that you, the reader, will agree with that assessment.
As for the ending of the story, the question of whether the main character survives is left open. In the end it's not what it is about after all, don't you agree?
Maya
Saturday, 6 February 2016
Living with a body which doesn't make sense
After a quiet week, in terms of physical pain, today the abdominal cramps began again, announcing the happy joy fun part of the monthly cycle referred to as 'menstruation'. Everything right on schedule. Yet none of it should be happening if one looks at my hormone levels. Despite having been off artificial hormones for more than two months now, if anything my periods are now more severe, painful and more compromising for my daily life.
The endocrinologist is puzzled about the hormonal results so far, as am I. If anything could rub it further in that my body is anything but 'normal', I'm not sure what it could be. Biologically I'm neither male nor female, though more of an alternate female version of regular female physiology, maybe.
My main feeling these days is just one of exhaustion, of feeling so confused by this body of mine that I can no longer come up with any plausible theories to explain what this body of mine is, or why it can even exist.
I do not know what this body is. I do not know how to look at it. I treat it as a female body, because that seems to make sense, yet at the same time it is so overwhelmingly clear that the differences are major and confusing.
I hope so much that the coming months will see actual medical help along with answers, surgery and less monthly pain.
Maya
The endocrinologist is puzzled about the hormonal results so far, as am I. If anything could rub it further in that my body is anything but 'normal', I'm not sure what it could be. Biologically I'm neither male nor female, though more of an alternate female version of regular female physiology, maybe.
My main feeling these days is just one of exhaustion, of feeling so confused by this body of mine that I can no longer come up with any plausible theories to explain what this body of mine is, or why it can even exist.
I do not know what this body is. I do not know how to look at it. I treat it as a female body, because that seems to make sense, yet at the same time it is so overwhelmingly clear that the differences are major and confusing.
I hope so much that the coming months will see actual medical help along with answers, surgery and less monthly pain.
Maya
Thursday, 4 February 2016
Progress, and so many more questions
After not hearing from the endocrinologist for a week, I decided to write another email, asking what the status was. Within two hours I got called by her, and currently I'm sitting here typing this, while feeling more than just a little bit overwhelmed and torn between so many emotions and sensations that I have no words to even begin to describe them.
On the main point, that of the 33 picomol level of estradiol found with the first blood test, the second result was pretty clear: it wasn't the natural hormone level, but that of natural plus the artificial estradiol. With the second test's results the estradiol levels were significantly lower.
That wasn't the confounding part, though. That was that a seemingly unrelated hormone along with a few others had spiked in this second result set, for which they cannot find an explanation. I am now to come in for another blood test next week, the appointment for which I'll be contacted about tomorrow. Then on the 18th I'll have my next appointment with the endocrinologist, but accompanied by the intersex specialist she has been consulting as well.
The past weeks that I have been waiting for these results, I have harboured thoughts being whispered to me from the dark, traumatised sections of my mind, insisting that I was going to find disappointment with this current attempt at trying to find medical help. It was no surprise therefore that I was feeling apprehensive about this phone call earlier, half-expecting to find another dismissal of my case and me being sent away to find 'proper' (transsexual) help or some such.
Thus when the endocrinologist was talking about how this intersex expert recalled hearing my name before, and found that I had been in contact with many doctors over the years, I felt myself bracing for that swift kick to the head and the shattering of the few dreams I still had.
Instead she just mentioned that they wanted to talk things through together to make sure that they didn't try contacting the same doctors I had contacted before already. She also mentioned that together with this specialist they had looked at the MRI scans they had of me, and could see the ovarian tissue on it. Not as fully grown ovaries, but more as strings of tissue, only partially developed, much like the testicles were.
With this sudden overload of information I'm not entirely sure how I am supposed to feel about things. Happy that things are still progressing, I guess. Relieved that nothing bad happened so far. Frustrated and disappointed that my hormonal situation is still so incredibly unclear, and offers no explanation for the physical symptoms and pains.
I don't think that my hormonal situation has ever been clear. When I was about eleven years old and got my first menstruation-like symptoms, I wasn't using hormones. During more than a decade afterwards I didn't either, yet I still had regular pains which I simply ignored, figuring I had just eaten too much, or the skin had become irritated somewhere for some reason.
Now it appears that I cannot take these extra hormones any more, and that the rest of my hormone levels are completely out of whack, so that even an endocrinologist and intersex specialist combined can make heads nor tails out of it. There's no explanation for the linea nigra stripe I have on my abdomen either, this way.
At this point I realise so well why I have kept looking for answers about my body during the past eleven years; even just with these initial findings I'm already so aware of how darn little I know about this body of mine. So little that just this initial investigation is already throwing up so many mystifying questions.
I hope that this year the mystery will finally be fully revealed.
Maya
On the main point, that of the 33 picomol level of estradiol found with the first blood test, the second result was pretty clear: it wasn't the natural hormone level, but that of natural plus the artificial estradiol. With the second test's results the estradiol levels were significantly lower.
That wasn't the confounding part, though. That was that a seemingly unrelated hormone along with a few others had spiked in this second result set, for which they cannot find an explanation. I am now to come in for another blood test next week, the appointment for which I'll be contacted about tomorrow. Then on the 18th I'll have my next appointment with the endocrinologist, but accompanied by the intersex specialist she has been consulting as well.
The past weeks that I have been waiting for these results, I have harboured thoughts being whispered to me from the dark, traumatised sections of my mind, insisting that I was going to find disappointment with this current attempt at trying to find medical help. It was no surprise therefore that I was feeling apprehensive about this phone call earlier, half-expecting to find another dismissal of my case and me being sent away to find 'proper' (transsexual) help or some such.
Thus when the endocrinologist was talking about how this intersex expert recalled hearing my name before, and found that I had been in contact with many doctors over the years, I felt myself bracing for that swift kick to the head and the shattering of the few dreams I still had.
Instead she just mentioned that they wanted to talk things through together to make sure that they didn't try contacting the same doctors I had contacted before already. She also mentioned that together with this specialist they had looked at the MRI scans they had of me, and could see the ovarian tissue on it. Not as fully grown ovaries, but more as strings of tissue, only partially developed, much like the testicles were.
With this sudden overload of information I'm not entirely sure how I am supposed to feel about things. Happy that things are still progressing, I guess. Relieved that nothing bad happened so far. Frustrated and disappointed that my hormonal situation is still so incredibly unclear, and offers no explanation for the physical symptoms and pains.
I don't think that my hormonal situation has ever been clear. When I was about eleven years old and got my first menstruation-like symptoms, I wasn't using hormones. During more than a decade afterwards I didn't either, yet I still had regular pains which I simply ignored, figuring I had just eaten too much, or the skin had become irritated somewhere for some reason.
Now it appears that I cannot take these extra hormones any more, and that the rest of my hormone levels are completely out of whack, so that even an endocrinologist and intersex specialist combined can make heads nor tails out of it. There's no explanation for the linea nigra stripe I have on my abdomen either, this way.
At this point I realise so well why I have kept looking for answers about my body during the past eleven years; even just with these initial findings I'm already so aware of how darn little I know about this body of mine. So little that just this initial investigation is already throwing up so many mystifying questions.
I hope that this year the mystery will finally be fully revealed.
Maya
Monday, 1 February 2016
That empty pillow
I remember well that moment, now a few years ago, when you asked me to become your girlfriend. I also remember in painful detail my refusal. Regardless of my motivations and no matter that I still feel that it was the right decision for both of us, it still hurts inside.
For some reason when I moved into my new place and had to buy a bed - together with all other furniture, I decided to get a queen-sized bed. A regular twin-sized bed would have sufficed, but something made me buy the larger bed, along with everything else to get two matching sides.
Now, I often find myself looking at this empty side of the bed, staring at the empty pillow and imagining a reality in which this setup didn't seem like some twisted way to torture myself. Then again, having only a twin-sized bed taking up a fraction of the bedroom might have just the same effect.
In the end I just have to admit that the problem appears to be inside of me. A desire to be loved, and to love back, but no way to express this or expectations of it ever becoming a reality. Above all an inability to love myself.
Maybe some day I'll learn to know myself and discover that I'm actually a really cool person to hang out with. Or maybe it'll turn into the worst date of my life. Worse than all those times I was taken on a date without being aware of it in my horrible nativity until the sudden attempt to kiss me.
I hope I'll be gentle.
Maya
P.S.: this short story I wrote last year, called 'In Between - A love story' might be of interest, too: https://www.scribd.com/doc/246517504/In-Between-A-Love-Story
For some reason when I moved into my new place and had to buy a bed - together with all other furniture, I decided to get a queen-sized bed. A regular twin-sized bed would have sufficed, but something made me buy the larger bed, along with everything else to get two matching sides.
Now, I often find myself looking at this empty side of the bed, staring at the empty pillow and imagining a reality in which this setup didn't seem like some twisted way to torture myself. Then again, having only a twin-sized bed taking up a fraction of the bedroom might have just the same effect.
In the end I just have to admit that the problem appears to be inside of me. A desire to be loved, and to love back, but no way to express this or expectations of it ever becoming a reality. Above all an inability to love myself.
Maybe some day I'll learn to know myself and discover that I'm actually a really cool person to hang out with. Or maybe it'll turn into the worst date of my life. Worse than all those times I was taken on a date without being aware of it in my horrible nativity until the sudden attempt to kiss me.
I hope I'll be gentle.
Maya
P.S.: this short story I wrote last year, called 'In Between - A love story' might be of interest, too: https://www.scribd.com/doc/246517504/In-Between-A-Love-Story
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