Earlier this week I had what might have been the most anticipated event for me this month. I didn't expect that much to happen at the neurologist, and other than having a redo of the last MRI scan of my spinal column (this time with contrast dye), it seems that this will be the end of that course of investigation. No, the biggest wild card, medically speaking, was my appointment with the gynaecologist.
It's been about two years since I last talked with this gynaecologist, and a lot of things have happened since that time. Things such as the big physiological changes my body underwent in those years - particularly my ovaries finally kicking into gear - along with my current set of complaints (distended abdomen, regular sensations of fluid gathering and things rupturing in the vaginal area. This probably helped to get things right down to business.
An ultrasound showed that at least I do not appear to have ovaries in the expected location for a plain old woman. To gather more data on my cycle I'll have blood taken for a couple of weeks in order to see how the hormone levels fluctuate during that time. Then, at the end, the gynaecologist suggested a more extensive procedure. Namely a laparoscopy of the abdomen.
This would involve the gynaecologist making small incisions in my abdomen, to allow for a camera and tools to enter the abdomen. The goal of this would be to explore the organs and tissues present and take biopsies of relevant tissues. Ideally this would allow the gynaecologist to see exactly what is going inside my abdomen, and settle the question of which organs I have/do not have once and for all.
The coming weeks it should become clear when this procedure will take place. I fervently hope that this will definitively answer the question of whether I have a vagina which is usable for re-attachment to the perineum, while also putting to rest any fears I have about cancer and other potential issues which might be underlying my current health issues.
The procedure itself would be easy. I'd be put under completely, so after an hour or so I'd be waking up again to learn of the results and be able to leave the hospital the same day. With some luck those results would allow me to finally find that reconstructive surgeon for the final surgery. Hard to get better pre-surgery information than the video and biopsy results from a laparoscopy.
Who knows, maybe this will be the year when this 13-year old medical drama that is my current life will finally come to a (happy) end?
Maya
Saturday, 27 January 2018
Friday, 26 January 2018
On visiting the pool as a hermaphrodite
It's sometimes frightening to note just how rapidly time can slip by sometimes. Such as yesterday when I went to a nearby swimming pool with a couple of friends, with my last recollection of visiting such a place being at least 6-7 years in the past.
What prompted me to go along to the pool with the others was an urging by my therapist to 'maybe do some sports'. I always maintained over the past years that all the cycling I do around the city is enough to keep me fit. Suffice it to say that yesterday's experience (and today's sore muscles) have proven me completely wrong on that account. Seldom have I felt more out of shape and somewhat humbled.
The positive side of yesterday's pool visit was cycling back afterwards feeling all fuzzy, warm and happy. As someone who has loved swimming already as a child, it was so good to be back in the water. Even if a large part of it is the dodging of other people in the pool as one tries to gets in one's laps, it's still a positive experience. As a bonus, the water was far less chlorinated than I'm used to from Dutch pools.
Not smelling for a day like one got caught in an accident involving a truck carrying chlorine is pretty nice, indeed.
After buying an entry ticket and figuring out how to use the entry gates, I met my next challenge: dressing cubicles. Since the whole place was under construction, still, it turned out that the number of private cubicles was rather limited. I wasn't going to enter any of the communal dressing rooms. I was there to swim, after all. Not worry about what other women might think of my extended set of accessories.
What was somewhat funny is that earlier yesterday in the local hackerspace's IRC chatroom another person expressed interest in tagging along to the pool as well, but expressed concern about wearing a bikini because she is a pre-op transgender person, and 'excess bits' would show up. I'm not sure whether I'm just special, but when I'm wearing a swimsuit or bikini you wouldn't know that I'm not a Human Female Model Mark 1. I almost mentioned this fact in the chat, but figured that it's still okay if people assume me to be just a regular female.
I guess I am glad for this fact, however. Being able to just go swimming without weird looks is nice. Probably the only reason why people might gawk at me is for apparently looking like an Attractive Human Female.
One thing which I found interesting at this pool compared to all the Dutch pools I have frequented, is that here they have a section for men and one for women which has the toilets and showers. With Dutch pools there's usually an open shower section in the entrance to the pool itself, meaning that you get a quick rinse before entering the pool and after leaving it.
At the pool I visited yesterday, this meant that as a result it was common practice to strip down fully after swimming, much as one would do when at home. Though they also have two private showers, most women I saw there seemed to have no issues with slipping out of their swimsuit or bikini. To be honest, I kind of like this. There's nothing to be ashamed of, after all.
Except for me, maybe. While I had no qualms about stripping down the top part of my swimsuit, I figured I'd not slip out of it fully. Even if I already had had the reconstructive surgery for the vagina, the presence of bonus parts would at the very least lead to uncomfortable looks and, worst case, upset people. No use in chancing it.
In some ways a pool visit is a rather intimate experience, as it requires one to expose oneself and one's body in ways which we're not generally used to in daily life, and all of that in public. Suddenly everybody can see what you have kept hidden underneath layers of clothing. Be it scars, an old tattoo, that tummy that just won't shrink, or the fact that you're not technically male or female.
For that reason I have avoided saunas like the plague, for one. Even though I am not ashamed of being a hermaphrodite (hermaphroditic intersex person), it's especially at places such as pools and saunas where one can no longer just coast along on the assumption by others that one is simply female. I'm not sure what the solution there is. If there even is one.
I guess yesterday's experience once more made me understand other hermaphrodites who choose to just have one side chopped off and removed from their body a little bit more. Though I do not feel nearly as uncomfortable with my body today as I used to only a few years ago, it is hard to shake off this feeling of loneliness that comes with being different enough to fall outside of society.
Thinking back to how I could just have gone along with all those attempts by dozens of doctors and psychologists to convince me that I was transgender. If I had pulled it off, I might now have had genital surgery, removing the male bits (and likely any female bits they found...) and be a normal human female. Kinda. Sorta. It would feel horribly fake to me. I would not be 'me'.
Yet the mental struggle to keep rejecting the seductive lure of 'just getting all the strife over with' remains. At least so long as there is not truly a place for us hermaphrodites. Being ourselves is a tough job, every day again. To be something which you know exists, but others do not, or dismiss it as little more than a myth.
This must be exactly what a unicorn would feel like, I guess.
Maya
What prompted me to go along to the pool with the others was an urging by my therapist to 'maybe do some sports'. I always maintained over the past years that all the cycling I do around the city is enough to keep me fit. Suffice it to say that yesterday's experience (and today's sore muscles) have proven me completely wrong on that account. Seldom have I felt more out of shape and somewhat humbled.
The positive side of yesterday's pool visit was cycling back afterwards feeling all fuzzy, warm and happy. As someone who has loved swimming already as a child, it was so good to be back in the water. Even if a large part of it is the dodging of other people in the pool as one tries to gets in one's laps, it's still a positive experience. As a bonus, the water was far less chlorinated than I'm used to from Dutch pools.
Not smelling for a day like one got caught in an accident involving a truck carrying chlorine is pretty nice, indeed.
After buying an entry ticket and figuring out how to use the entry gates, I met my next challenge: dressing cubicles. Since the whole place was under construction, still, it turned out that the number of private cubicles was rather limited. I wasn't going to enter any of the communal dressing rooms. I was there to swim, after all. Not worry about what other women might think of my extended set of accessories.
What was somewhat funny is that earlier yesterday in the local hackerspace's IRC chatroom another person expressed interest in tagging along to the pool as well, but expressed concern about wearing a bikini because she is a pre-op transgender person, and 'excess bits' would show up. I'm not sure whether I'm just special, but when I'm wearing a swimsuit or bikini you wouldn't know that I'm not a Human Female Model Mark 1. I almost mentioned this fact in the chat, but figured that it's still okay if people assume me to be just a regular female.
I guess I am glad for this fact, however. Being able to just go swimming without weird looks is nice. Probably the only reason why people might gawk at me is for apparently looking like an Attractive Human Female.
One thing which I found interesting at this pool compared to all the Dutch pools I have frequented, is that here they have a section for men and one for women which has the toilets and showers. With Dutch pools there's usually an open shower section in the entrance to the pool itself, meaning that you get a quick rinse before entering the pool and after leaving it.
At the pool I visited yesterday, this meant that as a result it was common practice to strip down fully after swimming, much as one would do when at home. Though they also have two private showers, most women I saw there seemed to have no issues with slipping out of their swimsuit or bikini. To be honest, I kind of like this. There's nothing to be ashamed of, after all.
Except for me, maybe. While I had no qualms about stripping down the top part of my swimsuit, I figured I'd not slip out of it fully. Even if I already had had the reconstructive surgery for the vagina, the presence of bonus parts would at the very least lead to uncomfortable looks and, worst case, upset people. No use in chancing it.
In some ways a pool visit is a rather intimate experience, as it requires one to expose oneself and one's body in ways which we're not generally used to in daily life, and all of that in public. Suddenly everybody can see what you have kept hidden underneath layers of clothing. Be it scars, an old tattoo, that tummy that just won't shrink, or the fact that you're not technically male or female.
For that reason I have avoided saunas like the plague, for one. Even though I am not ashamed of being a hermaphrodite (hermaphroditic intersex person), it's especially at places such as pools and saunas where one can no longer just coast along on the assumption by others that one is simply female. I'm not sure what the solution there is. If there even is one.
I guess yesterday's experience once more made me understand other hermaphrodites who choose to just have one side chopped off and removed from their body a little bit more. Though I do not feel nearly as uncomfortable with my body today as I used to only a few years ago, it is hard to shake off this feeling of loneliness that comes with being different enough to fall outside of society.
Thinking back to how I could just have gone along with all those attempts by dozens of doctors and psychologists to convince me that I was transgender. If I had pulled it off, I might now have had genital surgery, removing the male bits (and likely any female bits they found...) and be a normal human female. Kinda. Sorta. It would feel horribly fake to me. I would not be 'me'.
Yet the mental struggle to keep rejecting the seductive lure of 'just getting all the strife over with' remains. At least so long as there is not truly a place for us hermaphrodites. Being ourselves is a tough job, every day again. To be something which you know exists, but others do not, or dismiss it as little more than a myth.
This must be exactly what a unicorn would feel like, I guess.
Maya
Monday, 15 January 2018
Hanging around while feeling unneeded
It is normal for any human being to want to feel wanted, needed and possibly even loved. To remove or blunt that desire means to strip a person of their empathy, of any shred of love for themselves and ultimately the will to live.
For the past decades I have struggled with being 'different' in a variety of ways. First there was me being gifted, and a purely visual-spatial thinker. This was what first got me isolated during primary school and severely bullied and beaten up on a number of occasions. My only friends during my school period were the other outcasts and misfits.
Then there was the intersex thing. To discover that I never was a male. That my body wasn't at all what I had been told what it was supposed to be. To society I merely changed from a male into a female role, but underneath my skin things are infinitely more complex. Organs, or at least functional tissues, have kicked into action and forced my body to become definitely more feminine along with repairing old scars and the like. Yet I will never be a woman. Once a hermaphrodite, always a hermaphrodite.
Thirteen years. That's the current count for how long I have been trying to figure out what this body of mine is about, and more recently why I'm suffering chronic pain, abdominal distension, etc. Last month I finally figured out that what has been causing a lot of pain and discomfort since I was 11 years old are fissures, at least in the rectum judging by the blood. Possibly in the vagina as well. What causes those constant fissures, however?
The most reasonable theory which I have so far discussed with my GP is that there's a build-up of fluids inside the vagina and/or around that area, which causes the rectal wall to bulge inwards, at which point regular toilet visits would shred this wall, causing constant fissures. Those fissures and discomfort experienced each month also only occur on the side between the rectal and vaginal walls.
As for the actual cause behind all of this, and possible outcomes, there are many possibilities. Everything from rectal wall spasms to ovarian cancer and lots of secondary causes. The coming months I hope to learn more.
Yet it's been thirteen years. Thirteen years during which everything rapidly became clear to me what had to be done and examined. It still feels as if doctors are only just catching up on the need to actually examine a hermaphroditic body for possible complications due to the irregular formation of certain tissues and organs on account of having two distinct sets of DNA try to steer the same mechanisms.
It feels as if the only reason why I'm being taken more seriously now is because all of those issues which I was worried about for over a decade already are now finally beginning to appear. Finally something which they can understand and act upon, maybe. It's too easy to feel bitter at this.
Apparently certain types of cancer are more prevalent among hermaphrodites, specifically those of the reproductive organs. Sepsis is also much more common, for when fluids get trapped and become infected. I have read up on this and tried to convince doctors of the urgency to determine which organs I have in my abdomen for this reason. Instead all I got was one side telling me that I had a normal male body, and the other side that I have a hermaphroditic body. Attempts to focus on the latter did not pay off.
What might save or still end up killing me is time. Simply wait long enough until things start going wrong and you can present concrete symptoms to doctors. From numbness and pain in one's limbs to abdominal distension (from 70 to 82 cm), the aforementioned fissures accompanied with bright red blood and the sensation of a lot of fluid being trapped underneath the skin in the vaginal area. They have their work cut out for them.
Yet nobody still cares about me being intersex.
I guess that the gifted thing keeps haunting me. I was always the one to question everything. The child who preferred to hang out with adults instead of with those their own age. The one who couldn't stop learning, questioning and dreaming. I cannot just 'be'. For me 'Hell' is a life lived without meaning.
You know what lies at the end of every single 'why'?' question? Nothing. Because the universe just is. There's no reason for its existence, just like there is no reason for our own existence. We exist because along a line of ancestors there were always those who had to mate and produce offspring. Why? Because.
Yet the universe is not without meaning. Through its existence it produces stars, galaxies and much, much more. Life is the same. A life lived well produces its own meaning. I guess this is the primary reason why I feel as if I'm being suffocated when I consider a reduction of being able to live. To do a menial, meaningless job working on something which in the end nobody really cares about, for example.
In some ways I am a thrill-seeker, I guess. Just not by risking my own life and health, but by seeking new intellectual challenges. By challenging certainties in science and technology. To me that is what gives life meaning. Any other existence is too terrifying for me to consider.
This, too, makes me a poor fit for society.
What more is there that makes me truly unfit to function in society and prevents me from feeling like I belong or am needed anywhere? Nobody needs my traumatic experiences recounted to them, I'm sure. What happened to me when I was five years old is my own problem. It's my responsibility to make sure it doesn't interfere with me pretending to be a Normal Human.
Many things which are 'different' about me are mostly just quaint, though, I guess. From being ambidextrous, to being a super-taster and so on. They just make me 'slightly odd', I reckon.
I guess that in the end the question with which I am left is a simple: where to from here?
Without a job or anything else to keep me tied down to this country of Germany, I am free to go and work and live anywhere in the world. Assuming someone needs me. Something exciting. Something hard and challenging. Something that can keep my interest.
The simple trick is to find the right employer.
Or just go into academics and forget about the 'real' world :)
Maya
For the past decades I have struggled with being 'different' in a variety of ways. First there was me being gifted, and a purely visual-spatial thinker. This was what first got me isolated during primary school and severely bullied and beaten up on a number of occasions. My only friends during my school period were the other outcasts and misfits.
Then there was the intersex thing. To discover that I never was a male. That my body wasn't at all what I had been told what it was supposed to be. To society I merely changed from a male into a female role, but underneath my skin things are infinitely more complex. Organs, or at least functional tissues, have kicked into action and forced my body to become definitely more feminine along with repairing old scars and the like. Yet I will never be a woman. Once a hermaphrodite, always a hermaphrodite.
Thirteen years. That's the current count for how long I have been trying to figure out what this body of mine is about, and more recently why I'm suffering chronic pain, abdominal distension, etc. Last month I finally figured out that what has been causing a lot of pain and discomfort since I was 11 years old are fissures, at least in the rectum judging by the blood. Possibly in the vagina as well. What causes those constant fissures, however?
The most reasonable theory which I have so far discussed with my GP is that there's a build-up of fluids inside the vagina and/or around that area, which causes the rectal wall to bulge inwards, at which point regular toilet visits would shred this wall, causing constant fissures. Those fissures and discomfort experienced each month also only occur on the side between the rectal and vaginal walls.
As for the actual cause behind all of this, and possible outcomes, there are many possibilities. Everything from rectal wall spasms to ovarian cancer and lots of secondary causes. The coming months I hope to learn more.
Yet it's been thirteen years. Thirteen years during which everything rapidly became clear to me what had to be done and examined. It still feels as if doctors are only just catching up on the need to actually examine a hermaphroditic body for possible complications due to the irregular formation of certain tissues and organs on account of having two distinct sets of DNA try to steer the same mechanisms.
It feels as if the only reason why I'm being taken more seriously now is because all of those issues which I was worried about for over a decade already are now finally beginning to appear. Finally something which they can understand and act upon, maybe. It's too easy to feel bitter at this.
Apparently certain types of cancer are more prevalent among hermaphrodites, specifically those of the reproductive organs. Sepsis is also much more common, for when fluids get trapped and become infected. I have read up on this and tried to convince doctors of the urgency to determine which organs I have in my abdomen for this reason. Instead all I got was one side telling me that I had a normal male body, and the other side that I have a hermaphroditic body. Attempts to focus on the latter did not pay off.
What might save or still end up killing me is time. Simply wait long enough until things start going wrong and you can present concrete symptoms to doctors. From numbness and pain in one's limbs to abdominal distension (from 70 to 82 cm), the aforementioned fissures accompanied with bright red blood and the sensation of a lot of fluid being trapped underneath the skin in the vaginal area. They have their work cut out for them.
Yet nobody still cares about me being intersex.
I guess that the gifted thing keeps haunting me. I was always the one to question everything. The child who preferred to hang out with adults instead of with those their own age. The one who couldn't stop learning, questioning and dreaming. I cannot just 'be'. For me 'Hell' is a life lived without meaning.
You know what lies at the end of every single 'why'?' question? Nothing. Because the universe just is. There's no reason for its existence, just like there is no reason for our own existence. We exist because along a line of ancestors there were always those who had to mate and produce offspring. Why? Because.
Yet the universe is not without meaning. Through its existence it produces stars, galaxies and much, much more. Life is the same. A life lived well produces its own meaning. I guess this is the primary reason why I feel as if I'm being suffocated when I consider a reduction of being able to live. To do a menial, meaningless job working on something which in the end nobody really cares about, for example.
In some ways I am a thrill-seeker, I guess. Just not by risking my own life and health, but by seeking new intellectual challenges. By challenging certainties in science and technology. To me that is what gives life meaning. Any other existence is too terrifying for me to consider.
This, too, makes me a poor fit for society.
What more is there that makes me truly unfit to function in society and prevents me from feeling like I belong or am needed anywhere? Nobody needs my traumatic experiences recounted to them, I'm sure. What happened to me when I was five years old is my own problem. It's my responsibility to make sure it doesn't interfere with me pretending to be a Normal Human.
Many things which are 'different' about me are mostly just quaint, though, I guess. From being ambidextrous, to being a super-taster and so on. They just make me 'slightly odd', I reckon.
I guess that in the end the question with which I am left is a simple: where to from here?
Without a job or anything else to keep me tied down to this country of Germany, I am free to go and work and live anywhere in the world. Assuming someone needs me. Something exciting. Something hard and challenging. Something that can keep my interest.
The simple trick is to find the right employer.
Or just go into academics and forget about the 'real' world :)
Maya
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