I would say that a healthy point in the healing process while recovering from psychological trauma is when you not only feel disgusted with the thought of being a victim, but feel motivated to reclaim your life. Previously I have talked about the sensation of feeling like a victim, and how much I dislike that. Sure, I could complain all day and everywhere about how society keeps hurting me, and moan about their debt towards me, but that's not the person who I want to be.
Things happened. I can fix this, because it's what has to be done. Because I can see what has to be done. Even as it feels like parts of my brain are still slowly sliding and clicking into place after having been chopped up and reshuffled by repeated trauma over the decades, I can feel myself growing stronger. I am healing.
I still don't get what my body exactly is. Even if I'm less confused about it than doctors, for whom intersex bodies seem to be completely outside of their field of expertise. I had no choice but to make this my field of expertise, as this is the only body that I will ever have.
Chronologically, my body has a specific age. Yet when people are asked how old they think I am, the answer seems to roughly vary between 15 to 25 years old. From what I can tell, my body is still going through puberty. As the harm from the unintentional years-long starvation process fades, my body seems to enthusiastically return to wrapping up this 'puberty' thing. I had no idea that my body would end up looking this feminine. Nor did I figure it would display a kind of reverse ageing process. Or maybe I'm just looking healthier now. It's hard to tell sometimes.
I have to acknowledge the years of fruitless attempts at searching for medical help and answers, and unsatisfying or even harmful psychological help. I tried and did my best there, but it was not meant to be. I still feel unhappy with the fact that nobody seems to care about me being forced to use my abdomen as a monthly sanitary pad, and feeling the resulting ickiness squishing inside my perineum, along with other unhappy symptoms. But this is discomfort, not hazardous to my life. I think. I hope.
Looking back, it's hard not to admit that the past years have focused a lot on dealing with and coming to terms with these and other things. Yet it was necessary, I think. One cannot just move on when every thought feels like it had to crawl its way through glass shards.
Then comes the time when one feels that one can, no, wants to move on. Continue fixing up one's mind, while seeking positive interactions and accomplishments in the big world out there. Because life waits for nobody.
Maya
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Monday, 9 November 2020
Healing, growing, accepting
Tuesday, 28 July 2020
How to starve yourself to death in two easy steps
For people who do not live in regions of this planet that are regularly hit by famine, it seems almost imaginable that anyone around them or they themselves would become nutritionally deficient in any way. Despite this, incidents of scurvy (vitamin C deficiency) are becoming ever more prevalent in rich nations, seemingly due to poor dietary choices.
When I found myself struggling with what appeared to be extreme abdominal swelling over the past years, I was initially unsure what to think of it, and the different GPs and other doctors whom I consulted couldn't tell me anything useful either. Some suggestions being offered included eating less, or cutting gluten and lactose out of my diet and see what happens. At the time I suspected it to be ascites [1], based on the 'ripple' effect across my abdomen, indicating the swelling to be due to fluids. Ascites hereby is of course a symptoms, not a cause.
During last year and until earlier this year, I found myself dealing with an ever increasing swelling of the abdomen, combined with significant weight gain, a feeling of lethargy, regular diarrhoea and weird patches on my skin. When a new GP earlier this year told me to take some medication against gas in the abdomen and a second GP at the same clinic told that he couldn't see anything out of the ordinary on an ultrasound of the abdomen, I decided that it had to be something in my diet.
I tried low-salt, no gluten, no lactose. I reduced my calorific intake to a bare minimum and saw a drop in my weight. Yet I began to feel worse and worse. I got frequent headaches, my stool got all watery and pale and at some points I basically felt like I was dying.
This all continued until it hit me that I had seen this symptom of a grotesquely distended abdomen before: on photographs of starving children, with pot bellies and not a shred of fat left on their bodies. Googling this led me to the form of malnutrition called Kwashiorkor, named after the Ga language from Ghana. It describes a type of selective starvation, where a lack of protein intake among other factors result in a gradual breaking down of various of the body's systems. This includes the lymph system and the ability to regulate the water in the body.
As a result you get an excess of water collecting in the body, usually in the abdomen, between the organs, but also in the limbs. It also affects your body's ability to maintain itself. I began to notice weird muscle pains, extreme weakness, as well as chest pains after even mild exercise, presumably from my body increasingly harvesting itself to maintain critical systems. Muscles are highly optional resources of protein and such, after all.
It seems that by the time I figured out what was going on, I had been moving into Kwashiorkor territory for years. I could pinpoint my reduced protein intake to around 2015, when my personal situation led me to stop cooking proper meals at homes and my work moved to a new office without the Chinese restaurant right next door with their tofu-filled dishes. It was around that time that I had begun to notice some abdominal swelling, which would gradually worsen over the next few years.
As a result of then reducing my calorific diet in a desperate attempt to get some grip on the situation, I seem to have been coaxing my body into a marasmus [3] state of calorific deficiency. Basically I was starving myself to death.
Since realising this now about a month ago, I have begun to pay proper attention to getting every single nutrient which my body requires. While me taking multivitamins is a good start, they do not contain essential amino-acids, and not all food sources are complete sources of protein. I had been neglecting to eat significant amounts of legumes and soy, which are the two main sources for people who are vegetarians, like myself. The animal protein which I consumed via yoghurt and milk was not enough to stave off the inevitable, nor were the peanut butter sandwiches. The latter are not a complete enough source of protein, even though they are generally a good source in addition to regular intake of legumes, soy and animal protein from dairy and meat (for those who are so inclined).
Since drastically changing my diet this way, the headaches have ceased, the abdominal swelling is reducing along with my weight, while I'm still eating three full meals a day. Which is much more than I used to eat over the past years. I also have a lot more energy during the day, my thoughts aren't hazy and slow any more, and after getting a proper workout on my bicycle on a grocery shopping run through the hilly terrain around here, my chest doesn't hurt and I feel like I could go for another run.
I will have to see over the coming months whether this fully fixes the ascites, or whether there are more underlying causes that didn't get addressed yet. Nevertheless, this has been a highly educational experience for me. Through a combination of stress, depression, homelessness and other unpleasantness happening around me I neglected to get the nutrition which my body needs. Perhaps worse is that not even the doctors whom I consulted over those five years noticed what was going on.
To me it serves as a warning. To always put your body first, because it is so easy to neglect it. And much like an abused machine it can continue without proper maintenance for a long time. Until suddenly it doesn't.
Be kind to yourself.
Maya
[1] https://en.wikipedia.org/wiki/Ascites
[2] https://en.wikipedia.org/wiki/Kwashiorkor
[3] https://en.wikipedia.org/wiki/Marasmus
When I found myself struggling with what appeared to be extreme abdominal swelling over the past years, I was initially unsure what to think of it, and the different GPs and other doctors whom I consulted couldn't tell me anything useful either. Some suggestions being offered included eating less, or cutting gluten and lactose out of my diet and see what happens. At the time I suspected it to be ascites [1], based on the 'ripple' effect across my abdomen, indicating the swelling to be due to fluids. Ascites hereby is of course a symptoms, not a cause.
During last year and until earlier this year, I found myself dealing with an ever increasing swelling of the abdomen, combined with significant weight gain, a feeling of lethargy, regular diarrhoea and weird patches on my skin. When a new GP earlier this year told me to take some medication against gas in the abdomen and a second GP at the same clinic told that he couldn't see anything out of the ordinary on an ultrasound of the abdomen, I decided that it had to be something in my diet.
I tried low-salt, no gluten, no lactose. I reduced my calorific intake to a bare minimum and saw a drop in my weight. Yet I began to feel worse and worse. I got frequent headaches, my stool got all watery and pale and at some points I basically felt like I was dying.
This all continued until it hit me that I had seen this symptom of a grotesquely distended abdomen before: on photographs of starving children, with pot bellies and not a shred of fat left on their bodies. Googling this led me to the form of malnutrition called Kwashiorkor, named after the Ga language from Ghana. It describes a type of selective starvation, where a lack of protein intake among other factors result in a gradual breaking down of various of the body's systems. This includes the lymph system and the ability to regulate the water in the body.
As a result you get an excess of water collecting in the body, usually in the abdomen, between the organs, but also in the limbs. It also affects your body's ability to maintain itself. I began to notice weird muscle pains, extreme weakness, as well as chest pains after even mild exercise, presumably from my body increasingly harvesting itself to maintain critical systems. Muscles are highly optional resources of protein and such, after all.
It seems that by the time I figured out what was going on, I had been moving into Kwashiorkor territory for years. I could pinpoint my reduced protein intake to around 2015, when my personal situation led me to stop cooking proper meals at homes and my work moved to a new office without the Chinese restaurant right next door with their tofu-filled dishes. It was around that time that I had begun to notice some abdominal swelling, which would gradually worsen over the next few years.
As a result of then reducing my calorific diet in a desperate attempt to get some grip on the situation, I seem to have been coaxing my body into a marasmus [3] state of calorific deficiency. Basically I was starving myself to death.
Since realising this now about a month ago, I have begun to pay proper attention to getting every single nutrient which my body requires. While me taking multivitamins is a good start, they do not contain essential amino-acids, and not all food sources are complete sources of protein. I had been neglecting to eat significant amounts of legumes and soy, which are the two main sources for people who are vegetarians, like myself. The animal protein which I consumed via yoghurt and milk was not enough to stave off the inevitable, nor were the peanut butter sandwiches. The latter are not a complete enough source of protein, even though they are generally a good source in addition to regular intake of legumes, soy and animal protein from dairy and meat (for those who are so inclined).
Since drastically changing my diet this way, the headaches have ceased, the abdominal swelling is reducing along with my weight, while I'm still eating three full meals a day. Which is much more than I used to eat over the past years. I also have a lot more energy during the day, my thoughts aren't hazy and slow any more, and after getting a proper workout on my bicycle on a grocery shopping run through the hilly terrain around here, my chest doesn't hurt and I feel like I could go for another run.
I will have to see over the coming months whether this fully fixes the ascites, or whether there are more underlying causes that didn't get addressed yet. Nevertheless, this has been a highly educational experience for me. Through a combination of stress, depression, homelessness and other unpleasantness happening around me I neglected to get the nutrition which my body needs. Perhaps worse is that not even the doctors whom I consulted over those five years noticed what was going on.
To me it serves as a warning. To always put your body first, because it is so easy to neglect it. And much like an abused machine it can continue without proper maintenance for a long time. Until suddenly it doesn't.
Be kind to yourself.
Maya
[1] https://en.wikipedia.org/wiki/Ascites
[2] https://en.wikipedia.org/wiki/Kwashiorkor
[3] https://en.wikipedia.org/wiki/Marasmus
Thursday, 27 February 2020
Giving the despair about not qualifying for medical help a place
I recently wrote about my trip to a local German hospital [1] and the outright refusal to have the abdominal symptoms examined on account of my intersex condition, or 'rare disease', as it's apparently designated in Germany. A few days later I also recorded this video about it:
Briefly, at this point the symptoms include the swollen abdomen as its most prominent feature, accompanied by constant discomfort to pulsating pain, the latter mostly when lying in bed. The source of the pain appears to be centralised in the area where the uterus would be, just below the navel. Previously, gently pushing on this area would cause strong discomfort and the feeling of my breathing stopping for a moment. Currently the same action causes sharp waves of nauseating pain throughout my abdomen. In addition, there's constant discomfort to pain in the perineum as well.
Understandably, dealing with chronic pain like this is costing a lot of energy. The uncertainty about the underlying cause(s) and what it may develop into take most of the energy that is still left after that, and further ruins my sleep. Are these symptoms benign? Are they indicative of something horrible, like cancer? I can only speculate without medical data to clarify things.
At this point I still have my GP who is willing to help me, and I'm fairly confident that I can at least get an ultrasound with about a month. That's still a month to bridge in low-power mode, however, so it better get some results at least.
Just another month of trying to give hope [2] a place. What if it doesn't produce any results indicative of something wrong?
Life would be so much easier if I hadn't been born with an intersex, chimera body. Then I would have received medical help ages ago already.
Life would have been easier if I had given into the lie of being transsexual and had my genitals chopped up. I just wouldn't have been able to live with myself in that case.
What's more important, being able to live with yourself, or being able to live with society?
Maya
[1] https://mayaposch.blogspot.com/2020/02/so-i-got-denied-medical-care-because-of.html
[2] https://mayaposch.blogspot.com/2020/02/hope-versus-happiness.html
Briefly, at this point the symptoms include the swollen abdomen as its most prominent feature, accompanied by constant discomfort to pulsating pain, the latter mostly when lying in bed. The source of the pain appears to be centralised in the area where the uterus would be, just below the navel. Previously, gently pushing on this area would cause strong discomfort and the feeling of my breathing stopping for a moment. Currently the same action causes sharp waves of nauseating pain throughout my abdomen. In addition, there's constant discomfort to pain in the perineum as well.
Understandably, dealing with chronic pain like this is costing a lot of energy. The uncertainty about the underlying cause(s) and what it may develop into take most of the energy that is still left after that, and further ruins my sleep. Are these symptoms benign? Are they indicative of something horrible, like cancer? I can only speculate without medical data to clarify things.
At this point I still have my GP who is willing to help me, and I'm fairly confident that I can at least get an ultrasound with about a month. That's still a month to bridge in low-power mode, however, so it better get some results at least.
Just another month of trying to give hope [2] a place. What if it doesn't produce any results indicative of something wrong?
Life would be so much easier if I hadn't been born with an intersex, chimera body. Then I would have received medical help ages ago already.
Life would have been easier if I had given into the lie of being transsexual and had my genitals chopped up. I just wouldn't have been able to live with myself in that case.
What's more important, being able to live with yourself, or being able to live with society?
Maya
[1] https://mayaposch.blogspot.com/2020/02/so-i-got-denied-medical-care-because-of.html
[2] https://mayaposch.blogspot.com/2020/02/hope-versus-happiness.html
Friday, 7 February 2020
Hope versus happiness
The concept of 'hope' is usually postulated as something positive, as a driving, positive emotion or feeling that keeps one going in times of adversity. Yet, as I have on many occasions found, 'hope' is generally the prelude to disappointment, setbacks or worse. I would classify it as a primarily negative feeling, as it explicitly makes clear that things aren't right or fine, with one banking on a chance that things will somehow turn out okay.
Hope and happiness are also mutually exclusive as a consequence. If one feels hope, one is not and cannot feel happiness, at least not in any sense that conveys permanence and doesn't feel like daydreaming. Happiness implies permanence, stability and a sense of being at peace. Hope implies uncertainty, nervousness and the possibility of accepting bad news, an upheaval in one's living situation, or worse.
I find myself pondering these thoughts as I have somehow found myself back in the medical system after previously having settled on leaving the diagnosing of my intersex condition's characteristics as an unfinished project. Whether or not my current symptoms have anything to do with said condition I do not know. That's rather the point of this upcoming exercise, after all.
At my current GP's office it has quickly become clear that these symptoms of weight gain, a distended abdomen with apparent fluid inside it, along with bowel obstruction and persistent pain and discomfort in the perineum require a quick and thorough diagnosis. Which is why I have been referred to a larger hospital that has the resources and capability to handle such a case. Next week is the first appointment and the presumably first series of tests.
It's hard for me to pin down what my thoughts on this all are. On one hand I'm relieved of course that something is happening, and what's happening inside my abdomen will be diagnosed. On the other hand I'm both struggling with my too many memories of medical systems over the years, as well as a range of emotions including uncertainty and hints of fear. One never knows what will be found, after all.
What's different this time around is that I'm not at the hospital to have an intersex condition diagnosed, but for worrying medical symptoms which could have any number of underlying causes. It's in one way reassuring, because it means that it is not connected to those years of unpleasant medical experiences, yet it is very much the opposite of reassuring in the sense that something is decidedly wrong with my body, just that it hasn't been determined yet what is wrong and how to fix it.
Thus hope remains.
Depending how things go these coming weeks, it could all turn out fine, in which case I'd feel a lot happier. This is what I hope for, obviously. But hope doesn't come with guarantees. Reality is not concerned with what my wishes, hopes or dreams are. I only get to accept whatever comes my way. Whatever that may be. After over a decade of 'just taking it', it's not something that comes easily to me any more.
Between the relief of my body finally making its way through the final stages of puberty, and these worrying symptoms, I'm not sure what to think or feel. Is there a correlation? Is it a sign of something positive that just needs some surgical tweaking? One's thoughts just keep spinning in a circle. Hoping. Feeling uncertain. Trying to ignore it.
All I can do is hope and wait until next week's appointment. Meanwhile continue as normal. In so far as possible.
Admittedly it would be pretty cool if part of these symptoms are me growing that mature uterus and ovaries. First case in the medical literature, for sure.
Maya
Hope and happiness are also mutually exclusive as a consequence. If one feels hope, one is not and cannot feel happiness, at least not in any sense that conveys permanence and doesn't feel like daydreaming. Happiness implies permanence, stability and a sense of being at peace. Hope implies uncertainty, nervousness and the possibility of accepting bad news, an upheaval in one's living situation, or worse.
I find myself pondering these thoughts as I have somehow found myself back in the medical system after previously having settled on leaving the diagnosing of my intersex condition's characteristics as an unfinished project. Whether or not my current symptoms have anything to do with said condition I do not know. That's rather the point of this upcoming exercise, after all.
At my current GP's office it has quickly become clear that these symptoms of weight gain, a distended abdomen with apparent fluid inside it, along with bowel obstruction and persistent pain and discomfort in the perineum require a quick and thorough diagnosis. Which is why I have been referred to a larger hospital that has the resources and capability to handle such a case. Next week is the first appointment and the presumably first series of tests.
It's hard for me to pin down what my thoughts on this all are. On one hand I'm relieved of course that something is happening, and what's happening inside my abdomen will be diagnosed. On the other hand I'm both struggling with my too many memories of medical systems over the years, as well as a range of emotions including uncertainty and hints of fear. One never knows what will be found, after all.
What's different this time around is that I'm not at the hospital to have an intersex condition diagnosed, but for worrying medical symptoms which could have any number of underlying causes. It's in one way reassuring, because it means that it is not connected to those years of unpleasant medical experiences, yet it is very much the opposite of reassuring in the sense that something is decidedly wrong with my body, just that it hasn't been determined yet what is wrong and how to fix it.
Thus hope remains.
Depending how things go these coming weeks, it could all turn out fine, in which case I'd feel a lot happier. This is what I hope for, obviously. But hope doesn't come with guarantees. Reality is not concerned with what my wishes, hopes or dreams are. I only get to accept whatever comes my way. Whatever that may be. After over a decade of 'just taking it', it's not something that comes easily to me any more.
Between the relief of my body finally making its way through the final stages of puberty, and these worrying symptoms, I'm not sure what to think or feel. Is there a correlation? Is it a sign of something positive that just needs some surgical tweaking? One's thoughts just keep spinning in a circle. Hoping. Feeling uncertain. Trying to ignore it.
All I can do is hope and wait until next week's appointment. Meanwhile continue as normal. In so far as possible.
Admittedly it would be pretty cool if part of these symptoms are me growing that mature uterus and ovaries. First case in the medical literature, for sure.
Maya
Monday, 29 October 2018
To let oneself be carried off by the current
Working long hours, rushing to make deadlines and still not feeling like one is getting anywhere. Going through job interview after job interview only to get rejected. Dealing with the crippling psychological impact of a looming eviction and the prospect of abandoning everything once more and resorting to the charity of others. That's my day to day life for months now.
Somewhere in the background is still the constant pains and discomfort of my body, even as it keeps going through physical changes, from the gradually vanishing scars and subtle changes to my face and skin in general, to the general development of female secondary characteristics. None of it explained, none of it making sense, no clue as to what will happen in the end. Is this just a normal puberty?
I can feel my sense of self, my ego, vanishing in the midst of this. My body is in flux, nothing around me in my environment is fixed or certain. I know what person I think I am, and what I want my future to look like, but all paths have been closed off, with no way forward. There's just waiting.
It feels so pointless to keep struggling, to wish for a better future. Even after so many years I have come little closer to my goals, or found a home.
Two weeks ago I found myself taken to the local psychiatric clinic by the police because my social worker was worried about me after a few remarks in an email I sent to her. I ended up staying two nights there, because they were afraid that I might hurt myself, or worse. I was let out during the day of the second day there, however, with the promise to return by dinner time. I was let out again on the third day, with the recommendation to visit a psychiatrist at their walk-in clinic.
Honestly, I do not want to hurt myself, or even end my own life, but this sense of pointlessness and futility is making me feel ever more disjointed from this body and my perception of reality. Thus I feel torn between the fun and interesting things in my life, the future I want to work towards to, and the strong desire to just give up and let all of those who wish me to vanish get their desire.
This body feels like a hindrance. I don't want to have to think about where to house it, how to feed and clothe it. How to deal with its changes and pains. Its mortality. I cannot comprehend human society. It all feels so wrong and distant, like a tune that's ever so slightly off-key.
There's still my third book to finish, a job to find, a home to find and move to. An eviction to avoid and chronic stress, PTSD and worrying abdominal pains to ignore. The question of whether this is possible at all doesn't apply, nor whether I still have the energy to continue. There's no choice, no freedom, no pity or empathy. Just the choice between continuing this struggle and giving up.
I'm still struggling and hoping, but it's so hard.
Maya
Somewhere in the background is still the constant pains and discomfort of my body, even as it keeps going through physical changes, from the gradually vanishing scars and subtle changes to my face and skin in general, to the general development of female secondary characteristics. None of it explained, none of it making sense, no clue as to what will happen in the end. Is this just a normal puberty?
I can feel my sense of self, my ego, vanishing in the midst of this. My body is in flux, nothing around me in my environment is fixed or certain. I know what person I think I am, and what I want my future to look like, but all paths have been closed off, with no way forward. There's just waiting.
It feels so pointless to keep struggling, to wish for a better future. Even after so many years I have come little closer to my goals, or found a home.
Two weeks ago I found myself taken to the local psychiatric clinic by the police because my social worker was worried about me after a few remarks in an email I sent to her. I ended up staying two nights there, because they were afraid that I might hurt myself, or worse. I was let out during the day of the second day there, however, with the promise to return by dinner time. I was let out again on the third day, with the recommendation to visit a psychiatrist at their walk-in clinic.
Honestly, I do not want to hurt myself, or even end my own life, but this sense of pointlessness and futility is making me feel ever more disjointed from this body and my perception of reality. Thus I feel torn between the fun and interesting things in my life, the future I want to work towards to, and the strong desire to just give up and let all of those who wish me to vanish get their desire.
This body feels like a hindrance. I don't want to have to think about where to house it, how to feed and clothe it. How to deal with its changes and pains. Its mortality. I cannot comprehend human society. It all feels so wrong and distant, like a tune that's ever so slightly off-key.
There's still my third book to finish, a job to find, a home to find and move to. An eviction to avoid and chronic stress, PTSD and worrying abdominal pains to ignore. The question of whether this is possible at all doesn't apply, nor whether I still have the energy to continue. There's no choice, no freedom, no pity or empathy. Just the choice between continuing this struggle and giving up.
I'm still struggling and hoping, but it's so hard.
Maya
Saturday, 14 April 2018
Glimpses of a normal life
This whole intersex/medical thing is something which is like an annoying mosquito: even if you want it to just go away, it keeps coming back. Ignoring it will just let it get you in a different, nastier way. Me trying to ignore the chronic pain for a bit didn't work out so well. Since a few days it's back to the burning right side, numb and painful right leg and arm, along with the terrible abdominal pains, distended abdomen and lack of appetite.
Current suspicion is something like imperforate hymen [1] resulting in something like peritonitis [2], which would explain the distension of the abdomen and pains, along with the rest of the symptoms.
Even though I have been experiencing such pains for many years now, there has been very little interest from doctors. After the laparoscopy, two months ago, and the prompt dismissal by the gynaecologist of my problems being gynaecological in nature, there only really seems one plausible option for me to proceed, namely undergoing an examination by a proctologist.
To this end I have made an appointment for such an examination, scheduled for the end of next month. This will mostly focus on examining where the occasional bright red blood comes from, and whether signs of an anal fissure can be seen. If issues are found, then some kind of treatment will follow. It's unlikely that this will in any way detect the reasons for the abdominal bloating and pain, let alone fix it.
Despite the chronic pain and the way it drains me off the will to continue living, I have to keep believing that there is a way out of this situation.
Medically I can basically just wait for something to go wrong. If it is in fact peritonitis, then sepsis is a possible complication. Until then I am forced to continue with things as if nothing is wrong.
Currently this entails waiting for the results in the eviction case, which will likely see me being forced to find a new place to live along with a draining of my financial resources, seeking a new job and doing job interviews, writing a new reference book for Packt on embedded C++ development, along with stumbling ahead with my autobiography.
I so desperately want to believe that things can and will get better. That I will find a place to live where I am actually happy to be, that I'll find a job or occupation that will make me feel useful and appreciated.
That there'll be an end to this endless, merciless pain in my abdomen that makes my life into a literal living hell.
Along the way I keep meeting others who think that I will make it, who support me and want the best for me. It's tough for me to think about how I feel about life and existence in general. After more than thirteen years of doctors and psychologists treating me like trash, of suffering all types of physical, psychological and sexual abuses, along with incarnation and attempting suicide, I feel that I have tried just about anything that I can think of to make my life better, yet with me only getting punished for my efforts.
I also hate feeling like a victim.
I'm a victim of many uncaring, vile people. True. Yet there are other people out there. People who are so incredibly positive and supportive. People whose optimism I fear that I cannot live up to. Like this one person whom I met on Quora a while ago, and who has been doing his utmost to cheer me up, even going to the trouble of getting me better Japanese dictionaries than the ones I had, so that I have more fun doing translation work and generally using Japanese. To make my life that little bit brighter and more joyful.
There's also my best friend, who has been there for me during almost the entirety of those thirteen years. Despite his own problems, he always tries to be there for me, to cheer me up and make me see the brighter side of life. I'm not sure I could have made it this far without him and other essential people in my life, such as my mother.
I feel that I have to get out of this dark shadow of my medical issues and the horrors of living in German run-down apartments owned by vile landlords. That's all that is keeping me down and so unhappy. There is a way out of this. I just don't know how to reach it yet.
Just need to survive a little bit longer, I hope.
Maya
[1] https://en.wikipedia.org/wiki/Imperforate_hymen
[2] https://en.wikipedia.org/wiki/Peritonitis
Current suspicion is something like imperforate hymen [1] resulting in something like peritonitis [2], which would explain the distension of the abdomen and pains, along with the rest of the symptoms.
Even though I have been experiencing such pains for many years now, there has been very little interest from doctors. After the laparoscopy, two months ago, and the prompt dismissal by the gynaecologist of my problems being gynaecological in nature, there only really seems one plausible option for me to proceed, namely undergoing an examination by a proctologist.
To this end I have made an appointment for such an examination, scheduled for the end of next month. This will mostly focus on examining where the occasional bright red blood comes from, and whether signs of an anal fissure can be seen. If issues are found, then some kind of treatment will follow. It's unlikely that this will in any way detect the reasons for the abdominal bloating and pain, let alone fix it.
Despite the chronic pain and the way it drains me off the will to continue living, I have to keep believing that there is a way out of this situation.
Medically I can basically just wait for something to go wrong. If it is in fact peritonitis, then sepsis is a possible complication. Until then I am forced to continue with things as if nothing is wrong.
Currently this entails waiting for the results in the eviction case, which will likely see me being forced to find a new place to live along with a draining of my financial resources, seeking a new job and doing job interviews, writing a new reference book for Packt on embedded C++ development, along with stumbling ahead with my autobiography.
I so desperately want to believe that things can and will get better. That I will find a place to live where I am actually happy to be, that I'll find a job or occupation that will make me feel useful and appreciated.
That there'll be an end to this endless, merciless pain in my abdomen that makes my life into a literal living hell.
Along the way I keep meeting others who think that I will make it, who support me and want the best for me. It's tough for me to think about how I feel about life and existence in general. After more than thirteen years of doctors and psychologists treating me like trash, of suffering all types of physical, psychological and sexual abuses, along with incarnation and attempting suicide, I feel that I have tried just about anything that I can think of to make my life better, yet with me only getting punished for my efforts.
I also hate feeling like a victim.
I'm a victim of many uncaring, vile people. True. Yet there are other people out there. People who are so incredibly positive and supportive. People whose optimism I fear that I cannot live up to. Like this one person whom I met on Quora a while ago, and who has been doing his utmost to cheer me up, even going to the trouble of getting me better Japanese dictionaries than the ones I had, so that I have more fun doing translation work and generally using Japanese. To make my life that little bit brighter and more joyful.
There's also my best friend, who has been there for me during almost the entirety of those thirteen years. Despite his own problems, he always tries to be there for me, to cheer me up and make me see the brighter side of life. I'm not sure I could have made it this far without him and other essential people in my life, such as my mother.
I feel that I have to get out of this dark shadow of my medical issues and the horrors of living in German run-down apartments owned by vile landlords. That's all that is keeping me down and so unhappy. There is a way out of this. I just don't know how to reach it yet.
Just need to survive a little bit longer, I hope.
Maya
[1] https://en.wikipedia.org/wiki/Imperforate_hymen
[2] https://en.wikipedia.org/wiki/Peritonitis
Monday, 19 March 2018
Depression and the expectation of pretending life isn't so bad
Years ago, my school organised a trip to the local film theatre, where my fellow students and myself would be watching a quirky Italian film called 'La Vita รจ Bella' [1]. Set at the beginning of World War II in Italy, it follows a young Italian couple and their young child. As the father is Jewish, he and his son are arrested and sent to a concentration camp. His wife - despite not being Jewish - decides to join him as well instead of staying behind.
The point where my classmates and I agreed the film took it too far was when the father began to pretend to his son that they weren't in a concentration camp, but actually there to be play a complicated game. While this could have been a heart-breaking collection of scenes, the way it was handled - with an absolutely disrespectful sense of humour - it completely ruined the mood of the film.
The jarring and forced attempts at brightening the mood with off-key humour became so grating that the most joyful moment of the film was when the father got discovered while sneaking around, and executed. After that the film reverted back to a far more fitting mood, and felt right again. Afterwards, we all felt that it was a shame that they had felt it necessary to force in those 'humorous' scenes.
That film raises the question of how far one can take hiding reality from a person, even if it's done with the best of intentions. As someone who suffers from severe post-traumatic stress disorder, my general outlook on life is rather bleak. Surviving and still living through more traumas tends to do that to a person. Regardless, it is standard procedure to tell someone like me that 'life isn't so bad', and 'just cheer up'. Or the worst one of all: 'things will get better'.
While some types of depression are due to the neurotransmitter balance in the brain having gone off-centre, many of those affected will be so due to external factors. When one has become fully aware of the situation which one is in, the very act of survival may lead to one becoming depressed. As the situation drags on, and survival appears to be all that is left, one's outlook on life becomes one of indifference, fatalism and worse. As one sees others live plain, boring lives, it makes one wonder what the point of being alive even is.
I do not think that my own problem is my outlook on life, or anything really to do with myself. Most likely I'm just really unlucky, with having been born intersex and gifted, suffering sexual and psychological abuse both as a child and again as an adult. Struggling through thirteen years of trying to find medical help for my intersex condition. Dealing with worsening chronic pain.
Then losing my job and facing an eviction, so that I'm losing both a place to live and my body itself. The situation seems hopeless.
As I then look around this world, I can see that Germany itself is a complete mess, both politically and socially. I don't really care to keep living here in this country. Yet where to move? So many countries with massive problems. Nowhere to just work a fun job and have a proper, quiet home. I'm still supposed to pretend that things aren't this bad, of course.
Germany has been an intense disappointment after the hope I felt when I first moved here, without real medical help, acceptance, yet with plenty of divisive and wrongful politics, people living on each other's lip and no real interest in changing things. The Netherlands I cannot move back to after all that doctors and psychologists did to me there. I won't find medical help or acceptance there either.
Within a matter of weeks I'll hear what the outcome of the eviction case against me will be. I expect having to pay lots of money in addition to what I have already paid so far, and be forced to leave the place with a couple of months. I don't care what others tell me to believe, I have years of experience to fall back on, and they tell me that I'll always get the raw end of any deal.
My therapist still expects that we can work on some old traumas and have me feel better. I'm not even sure I can trust anyone. I want to, of course.
I have a few friends whom I trust and where I hope that one day I can work up the energy to invest more time in them. Always 'later'. Survival comes first. Meeting people online can be a positive experience, though I have scared plenty of people away as they tried to befriend me and help me. I try not to be bitter, but I cannot help myself. Not with everything that is going on.
Am I supposed to bop myself upside the head and tell myself that I'm just being a silly ol' goose? That all I had to do all this time was smile and feel cheerful and optimistic. That life is all about your attitude towards it.
I actually remember feeling like that, about a decade ago, when I still had the hope that things would somehow work out. Yet things just worked out for the worst over and over. Every reprieve I seemed to get just led to another dead-end. I cannot bring myself to smile any more. Not at life at least. There are small moments which reminds me of the good times that were. Yet they will never come back.
I don't know where I'm headed with my life. I am too tired to try and steer it any more. I'm okay if it hurtles off the road and into a ravine or whatever. I did my best. I even tried to pretend that life wasn't so bad for a while. And I almost believed it. Yet life doesn't work like that. Life is ugly and deadly. Unless you were born in a lucky way, possibly even in a rich family. Then you really have to try to screw it up.
I'm expected to smile and lie at the jobs office this week again. Promise the world, even though I know that I am incapable of doing anything more than what I'm currently doing, and got no real interest in just another job.
I don't know what I'm doing, or where I'm going.
Life isn't beautiful.
I cannot pretend otherwise.
Maya
[1] https://en.wikipedia.org/wiki/Life_Is_Beautiful
The point where my classmates and I agreed the film took it too far was when the father began to pretend to his son that they weren't in a concentration camp, but actually there to be play a complicated game. While this could have been a heart-breaking collection of scenes, the way it was handled - with an absolutely disrespectful sense of humour - it completely ruined the mood of the film.
The jarring and forced attempts at brightening the mood with off-key humour became so grating that the most joyful moment of the film was when the father got discovered while sneaking around, and executed. After that the film reverted back to a far more fitting mood, and felt right again. Afterwards, we all felt that it was a shame that they had felt it necessary to force in those 'humorous' scenes.
That film raises the question of how far one can take hiding reality from a person, even if it's done with the best of intentions. As someone who suffers from severe post-traumatic stress disorder, my general outlook on life is rather bleak. Surviving and still living through more traumas tends to do that to a person. Regardless, it is standard procedure to tell someone like me that 'life isn't so bad', and 'just cheer up'. Or the worst one of all: 'things will get better'.
While some types of depression are due to the neurotransmitter balance in the brain having gone off-centre, many of those affected will be so due to external factors. When one has become fully aware of the situation which one is in, the very act of survival may lead to one becoming depressed. As the situation drags on, and survival appears to be all that is left, one's outlook on life becomes one of indifference, fatalism and worse. As one sees others live plain, boring lives, it makes one wonder what the point of being alive even is.
I do not think that my own problem is my outlook on life, or anything really to do with myself. Most likely I'm just really unlucky, with having been born intersex and gifted, suffering sexual and psychological abuse both as a child and again as an adult. Struggling through thirteen years of trying to find medical help for my intersex condition. Dealing with worsening chronic pain.
Then losing my job and facing an eviction, so that I'm losing both a place to live and my body itself. The situation seems hopeless.
As I then look around this world, I can see that Germany itself is a complete mess, both politically and socially. I don't really care to keep living here in this country. Yet where to move? So many countries with massive problems. Nowhere to just work a fun job and have a proper, quiet home. I'm still supposed to pretend that things aren't this bad, of course.
Germany has been an intense disappointment after the hope I felt when I first moved here, without real medical help, acceptance, yet with plenty of divisive and wrongful politics, people living on each other's lip and no real interest in changing things. The Netherlands I cannot move back to after all that doctors and psychologists did to me there. I won't find medical help or acceptance there either.
Within a matter of weeks I'll hear what the outcome of the eviction case against me will be. I expect having to pay lots of money in addition to what I have already paid so far, and be forced to leave the place with a couple of months. I don't care what others tell me to believe, I have years of experience to fall back on, and they tell me that I'll always get the raw end of any deal.
My therapist still expects that we can work on some old traumas and have me feel better. I'm not even sure I can trust anyone. I want to, of course.
I have a few friends whom I trust and where I hope that one day I can work up the energy to invest more time in them. Always 'later'. Survival comes first. Meeting people online can be a positive experience, though I have scared plenty of people away as they tried to befriend me and help me. I try not to be bitter, but I cannot help myself. Not with everything that is going on.
Am I supposed to bop myself upside the head and tell myself that I'm just being a silly ol' goose? That all I had to do all this time was smile and feel cheerful and optimistic. That life is all about your attitude towards it.
I actually remember feeling like that, about a decade ago, when I still had the hope that things would somehow work out. Yet things just worked out for the worst over and over. Every reprieve I seemed to get just led to another dead-end. I cannot bring myself to smile any more. Not at life at least. There are small moments which reminds me of the good times that were. Yet they will never come back.
I don't know where I'm headed with my life. I am too tired to try and steer it any more. I'm okay if it hurtles off the road and into a ravine or whatever. I did my best. I even tried to pretend that life wasn't so bad for a while. And I almost believed it. Yet life doesn't work like that. Life is ugly and deadly. Unless you were born in a lucky way, possibly even in a rich family. Then you really have to try to screw it up.
I'm expected to smile and lie at the jobs office this week again. Promise the world, even though I know that I am incapable of doing anything more than what I'm currently doing, and got no real interest in just another job.
I don't know what I'm doing, or where I'm going.
Life isn't beautiful.
I cannot pretend otherwise.
Maya
[1] https://en.wikipedia.org/wiki/Life_Is_Beautiful
Thursday, 1 March 2018
Where to go from here
When I first started this blog, I did not moderate comments on my posts. Before long, spam and later hateful messages forced me to start moderating each posted comment to filter out such junk messages before they'd be made public.
Such hateful comments on my blog and elsewhere used to hurt me quite a bit. The focus of these stalkers and kin appeared to be to make me feel as miserable as possible, usually by feeding the fears and doubts I was harbouring. Expressing those fears openly on my blog made this quite easy, naturally.
Yet when I got another one of such comments in the moderation queue this morning after a bit of a quiet period, it was interesting to note how little it evoked in terms of feelings. This was the comment, by some anonymous poster:
"When the docs themselves didn't find any female reproduction organs in your body, it means that you're just hallucinating about being an intersexual. And whole world already swayed and believed into your story without actually see a proof of your intersexuality. So stop making up story and doing something stupid to your body, before you share an ultimate proof we can't deny that you're an actual intersex."
Even ignoring the horrendous grammar and botched last sentence, the intention of this comment was clear: to hurt and confuse, to make me question everything that I am and so on. Yet instead it merely made me shake my head at how little such pitiful people understand of the situation. Too little to even properly hurt me.
The surgery back in 2011 and the biopsy performed on the removed testicles already showed that I never was a male, with virtually no testosterone and complete male infertility (no sperm-producing cells). My phenotype is also that of a female, including the shape of my pelvis and so on. This surgery also confirmed the presence of a closed-off vagina, which was the reason why I got my official sex changed so easily.
Last month's surgery further added to this that I do not have a developed uterus or ovaries, something which was already known from MRI scans and ultrasounds. It did not examine the vaginal area and nearby, which is where I am currently still experiencing severe chronic pain. What this surgery basically told me is that like I thought quite a few years ago already is that I was essentially born with just a penis and a vagina, but little else.
I also got the results this week of the cycle monitoring, for which I had blood drawn over a month, to see how my estradiol values fluctuate. The interesting thing here is that although the values are pretty low for a female (~18 - 31 pmol/L, relative to normal minimum range of ~98 - 176 pmol/L), it was with these natural values that my body exhibited the extreme PMS symptoms and formation of linea nigra when I was still taking estradiol as part of hormone therapy. This would indicate that my body is far more sensitive to estradiol than a regular woman.
I remember quite well how at the second gender team in the Netherlands which I visited I got prescribed hormones, with the estradiol in the form of these plastic patches. The dose for this was set by a doctor from this gender team, using the normal values for a male to female transgender person. Right after I started using those patches I began to suffer from intense motion sickness, severe aura-based migraines and so on. Likely this dose was many times higher than what I had determined worked for me using oral estradiol pills and regular blood tests.
I got this last batch of info at the gynaecologist this week, and now have photos of my insides to add to my collection. Unfortunately the gynaecologist does not want to look at the issues in the vaginal area, and did not wish to refer me to anyone else, insisting that it's not a gynaecological issue.
I am now yet again without any medical assistance and despite having learned a bit more about my body, the chronic pain and other symptoms are not letting up. As I type this, the inside of my upper left leg along with the groin area is super-sensitive, even painful to the touch. First on last week Wednesday did I suddenly feel something twist and shift in my lower left abdomen, causing intense pain.
Things seem to have settled a bit more now, but as my body works its way through its usual monthly cycle, there is again the sensation of fluids gathering in the vaginal area, accompanied by sharp pains, itching and general discomfort.
Honestly, I would love for all of this to be just an illusion. Sadly, reality isn't that kind to me. I would have picked being a regular male or female over being a hermaphrodite if it means being in this much pain and discomfort all the time, with doctors trying to be rid of one as quickly as possible.
What will I do next? I don't know. The most effective approach does not appear to be to seek out medical help, but to wait for something to go catastrophically wrong with my body. That way doctors are obligated to help, since they won't do anything out of the kindness of their heart, or because it is the right thing to do. Liability insurance is expensive, after all.
Maya
Such hateful comments on my blog and elsewhere used to hurt me quite a bit. The focus of these stalkers and kin appeared to be to make me feel as miserable as possible, usually by feeding the fears and doubts I was harbouring. Expressing those fears openly on my blog made this quite easy, naturally.
Yet when I got another one of such comments in the moderation queue this morning after a bit of a quiet period, it was interesting to note how little it evoked in terms of feelings. This was the comment, by some anonymous poster:
"When the docs themselves didn't find any female reproduction organs in your body, it means that you're just hallucinating about being an intersexual. And whole world already swayed and believed into your story without actually see a proof of your intersexuality. So stop making up story and doing something stupid to your body, before you share an ultimate proof we can't deny that you're an actual intersex."
Even ignoring the horrendous grammar and botched last sentence, the intention of this comment was clear: to hurt and confuse, to make me question everything that I am and so on. Yet instead it merely made me shake my head at how little such pitiful people understand of the situation. Too little to even properly hurt me.
The surgery back in 2011 and the biopsy performed on the removed testicles already showed that I never was a male, with virtually no testosterone and complete male infertility (no sperm-producing cells). My phenotype is also that of a female, including the shape of my pelvis and so on. This surgery also confirmed the presence of a closed-off vagina, which was the reason why I got my official sex changed so easily.
Last month's surgery further added to this that I do not have a developed uterus or ovaries, something which was already known from MRI scans and ultrasounds. It did not examine the vaginal area and nearby, which is where I am currently still experiencing severe chronic pain. What this surgery basically told me is that like I thought quite a few years ago already is that I was essentially born with just a penis and a vagina, but little else.
I also got the results this week of the cycle monitoring, for which I had blood drawn over a month, to see how my estradiol values fluctuate. The interesting thing here is that although the values are pretty low for a female (~18 - 31 pmol/L, relative to normal minimum range of ~98 - 176 pmol/L), it was with these natural values that my body exhibited the extreme PMS symptoms and formation of linea nigra when I was still taking estradiol as part of hormone therapy. This would indicate that my body is far more sensitive to estradiol than a regular woman.
I remember quite well how at the second gender team in the Netherlands which I visited I got prescribed hormones, with the estradiol in the form of these plastic patches. The dose for this was set by a doctor from this gender team, using the normal values for a male to female transgender person. Right after I started using those patches I began to suffer from intense motion sickness, severe aura-based migraines and so on. Likely this dose was many times higher than what I had determined worked for me using oral estradiol pills and regular blood tests.
I got this last batch of info at the gynaecologist this week, and now have photos of my insides to add to my collection. Unfortunately the gynaecologist does not want to look at the issues in the vaginal area, and did not wish to refer me to anyone else, insisting that it's not a gynaecological issue.
I am now yet again without any medical assistance and despite having learned a bit more about my body, the chronic pain and other symptoms are not letting up. As I type this, the inside of my upper left leg along with the groin area is super-sensitive, even painful to the touch. First on last week Wednesday did I suddenly feel something twist and shift in my lower left abdomen, causing intense pain.
Things seem to have settled a bit more now, but as my body works its way through its usual monthly cycle, there is again the sensation of fluids gathering in the vaginal area, accompanied by sharp pains, itching and general discomfort.
Honestly, I would love for all of this to be just an illusion. Sadly, reality isn't that kind to me. I would have picked being a regular male or female over being a hermaphrodite if it means being in this much pain and discomfort all the time, with doctors trying to be rid of one as quickly as possible.
What will I do next? I don't know. The most effective approach does not appear to be to seek out medical help, but to wait for something to go catastrophically wrong with my body. That way doctors are obligated to help, since they won't do anything out of the kindness of their heart, or because it is the right thing to do. Liability insurance is expensive, after all.
Maya
Sunday, 18 February 2018
Post-surgery: the never-ending nightmare and a brief respite
I was lying in my hospital bed on Friday, slowly recovering from having been fully put under for the laparoscopy procedure when the gynaecologist and a host of other doctors came drifting into the room. Even though I hadn't expected to hear much else, to hear that they had not seen anything resembling formed ovaries or a uterus in my abdomen was still a sobering message. All that they had done was remove a number of locations where tissues had become stuck together, which might have caused at least part of the pain I was experiencing.
Unfortunately they had decided to not open the perinal side to check upon the vagina, as the skin had already become quite scarred from the first surgery in that area. Still, the gynaecologist - who had performed the surgery - found it necessary to say that he had not seen a vagina with the laparoscopy, even though it would be stuck snugly below the bladder, unreachable from the top of the lower abdomen where I am now left with the three incisions. Also the remark that it looked 'like one would expect to see by a male', or something to that extent. I was still quite dazed at that point, so I hope I just misunderstood something.
The gynaecologist had mentioned previously that he hadn't expected to find anything special, same as that he didn't expect to see anything special with the currently still on-going cycle monitoring of my hormone levels during one month. Next week the last blood will be drawn for that test, with the full results supposed to be available in two weeks time, when I have the next gynaecologist appointment. Which will likely be the last appointment, with probably just a simple dismissal and a 'nothing special found'.
In how far do I trust and believe this gynaecologist? In so far as me not having fully formed ovaries and a uterus is something which I will believe, as neither MRI scans or ultrasounds have shown anything like that so far. As far as the presence of a vagina, that has been confirmed by the first surgeon who operated on me, so I'll put that down to them aborting a full examination. To hear the gynaecologist say that they found 'no female genitals' thus seems rather poorly formulated.
I guess I will see what happens in two weeks time. I would love to be proven wrong, but so far it appears that all that I'm going through at this point is another repetition of me losing a little bit more of my humanity, without getting any kind of useful answers in return. It becomes so hard to keep a grasp on reality, especially when I experience one thing, and doctors keep insisting that my interpretation of reality is wrong. Like this gynaecologist essentially already insisting that I cannot be experiencing a monthly cycle before even have received the full results of the blood tests. It almost feels as if a certain reality is being forced upon me.
It's been like that for the past thirteen years, basically. And doctors have constantly proven other doctors to be wrong, and the reality which I'm experiencing incredibly more correct. Yet reality is nothing next to the opinion of specialists.
The one good thing which happened to me the past days was me meeting this woman and her father at the same hospital on Thursday during the pre-surgery work. She was also there to have a laparoscopy, in order to remove a cyst from an ovary. As it turned out, we lived pretty close to each other, so her father offered me a ride to the hospital on Friday, which I gladly accepted.
After our surgeries, this woman and I shared the same room as we recovered over the next two days. None of it was fun, but by being able to share our experiences, I think it became somewhat easier for us both. Being able to care for someone else at the same time as that I was recovering was a good thing, distracting me from my own issues. This woman also had a number of friends and family members come visit, with most of the chatting done in Spanish, which I found very interesting as well.
Through these visits, and by talking a lot with this woman and her father, I felt like I could slowly become immersed in this other world. A world of people who care so much about each other, who are doing their best to get through life, even leaving their country of birth - much as what I did - and making the best of things as they get alone. It made me feel happy that I could be a part of this, even if it was just for a few short days.
Now that I'm out of the hospital, it's back to the same old grind. Yet something has changed. It's hard to describe it, really. Maybe it's because the hopes I had before the surgery got dashed, yet without the leeway provided by the ambiguity of an MRI scan. With the images that were made of the laparoscopy, there is a lot which I cannot question about what is slowly forming into nan undeniable truth.
What maybe has changed is the realisation that after first having any possibility of me having a functional male side dashed in 2011 with the biopsy of the testicles that were removed, finding them to be essentially undeveloped, now something similar has happened for the possibility of a functional female side. Though I do appear to have something generating normal levels of female hormones, and I still have some kind of vagina, I do not have and will not ever have ovaries or a uterus. I'm nothing like a male or female. I'm something... else. Something... empty.
As if with every new revelation like this, I'm becoming something more agender, more asexual. Something of which I less understand what it is, or could be.
Together with this there is the fear that if there's indeed a monthly cycle, and uterine tissue that responds to it, then I essentially have what one could call the worst kind of endometriosis one could imagine. Something that just fills up the abdomen without nothing to guide it. Together with a closed-off vagina, that's pretty much a recipe for disaster. At this point it's just an unsubstantiated fear, however.
I wish I had a doctor who understood these fears, doing their best to investigate and alleviate such fears to get an outcome that made me somehow at peace with things. Not this constant battling and doubting of those who are supposed to be providing me with this help. I don't know what to believe, or who to trust any more.
Not just doctors, but people in general. The past days the contrast between me and this woman with whom I shared a few days of our lives couldn't have been more stark. I felt so weak and fearful, with her taking the initiative on a number of occasions, to ask something of the nurses and the like. Things which would have made me freeze up in terror just thinking of doing something wrong or improper.
I guess I felt somewhat jealous, as well. The idea of having a regular female body and just a common issue like a cyst. Not a host of questions, worries and maybe another batch of big surgeries. If I'm lucky.
Maybe I'm just too tired of trying to make sense of things any more at this point. It's gone far beyond merely trying to live my life, finding a job and a place to live. This goes to the very fundamentals of who and what I am. How I fit in with the whole. Once I thought I was just a male, which delusion got destroyed, to be replaced with the thought that I might be more female. Even though I will always look more like a woman, I guess I have to find a way to deal with this emptiness I feel inside now.
I need to figure this out. I need to make sense of this. I need help with this. Not people trying to force things on me. People who wish to help me feel better. Regain some of what I have lost.
The past days I have felt myself struggling with my emotions more and more strongly. Since returning to this apartment that I'm currently inhabiting and what somewhat feels like my old life, it's become even harder. I cannot seem to focus on anything but this emotional and psychological struggle now. It may destroy me if I fail to figure this out. What happens at the appointment in two weeks may make things much better, or much worse.
I don't think that anyone who wishes to help me can do so. I don't believe that anyone who can help me wishes to do so.
I cannot tell what may happen next. I will just have to live through this hell one day at a time. Trying to keep my sanity intact. Trying to stay myself. Whatever the heck that may be.
Is there hope for me? I'm doing my best, but I'm falling apart. Worse than before. Unable to define myself, unable to provide answers to questions, I remain stuck dealing with the same issues. Issues which I cannot resolve on my own. Issues which may require that my body first breaks down further before I get the required help and answers. By which time it may already be too late for the easy and best solutions.
I don't know. I don't know anything. I cannot deal with this. I don't know how I can keep living like this. I don't know whether I'm truly alive at this point. Do I even exist? Am I crazy? Maybe that's the only reasonable answer.
Maya
Unfortunately they had decided to not open the perinal side to check upon the vagina, as the skin had already become quite scarred from the first surgery in that area. Still, the gynaecologist - who had performed the surgery - found it necessary to say that he had not seen a vagina with the laparoscopy, even though it would be stuck snugly below the bladder, unreachable from the top of the lower abdomen where I am now left with the three incisions. Also the remark that it looked 'like one would expect to see by a male', or something to that extent. I was still quite dazed at that point, so I hope I just misunderstood something.
The gynaecologist had mentioned previously that he hadn't expected to find anything special, same as that he didn't expect to see anything special with the currently still on-going cycle monitoring of my hormone levels during one month. Next week the last blood will be drawn for that test, with the full results supposed to be available in two weeks time, when I have the next gynaecologist appointment. Which will likely be the last appointment, with probably just a simple dismissal and a 'nothing special found'.
In how far do I trust and believe this gynaecologist? In so far as me not having fully formed ovaries and a uterus is something which I will believe, as neither MRI scans or ultrasounds have shown anything like that so far. As far as the presence of a vagina, that has been confirmed by the first surgeon who operated on me, so I'll put that down to them aborting a full examination. To hear the gynaecologist say that they found 'no female genitals' thus seems rather poorly formulated.
I guess I will see what happens in two weeks time. I would love to be proven wrong, but so far it appears that all that I'm going through at this point is another repetition of me losing a little bit more of my humanity, without getting any kind of useful answers in return. It becomes so hard to keep a grasp on reality, especially when I experience one thing, and doctors keep insisting that my interpretation of reality is wrong. Like this gynaecologist essentially already insisting that I cannot be experiencing a monthly cycle before even have received the full results of the blood tests. It almost feels as if a certain reality is being forced upon me.
It's been like that for the past thirteen years, basically. And doctors have constantly proven other doctors to be wrong, and the reality which I'm experiencing incredibly more correct. Yet reality is nothing next to the opinion of specialists.
The one good thing which happened to me the past days was me meeting this woman and her father at the same hospital on Thursday during the pre-surgery work. She was also there to have a laparoscopy, in order to remove a cyst from an ovary. As it turned out, we lived pretty close to each other, so her father offered me a ride to the hospital on Friday, which I gladly accepted.
After our surgeries, this woman and I shared the same room as we recovered over the next two days. None of it was fun, but by being able to share our experiences, I think it became somewhat easier for us both. Being able to care for someone else at the same time as that I was recovering was a good thing, distracting me from my own issues. This woman also had a number of friends and family members come visit, with most of the chatting done in Spanish, which I found very interesting as well.
Through these visits, and by talking a lot with this woman and her father, I felt like I could slowly become immersed in this other world. A world of people who care so much about each other, who are doing their best to get through life, even leaving their country of birth - much as what I did - and making the best of things as they get alone. It made me feel happy that I could be a part of this, even if it was just for a few short days.
Now that I'm out of the hospital, it's back to the same old grind. Yet something has changed. It's hard to describe it, really. Maybe it's because the hopes I had before the surgery got dashed, yet without the leeway provided by the ambiguity of an MRI scan. With the images that were made of the laparoscopy, there is a lot which I cannot question about what is slowly forming into nan undeniable truth.
What maybe has changed is the realisation that after first having any possibility of me having a functional male side dashed in 2011 with the biopsy of the testicles that were removed, finding them to be essentially undeveloped, now something similar has happened for the possibility of a functional female side. Though I do appear to have something generating normal levels of female hormones, and I still have some kind of vagina, I do not have and will not ever have ovaries or a uterus. I'm nothing like a male or female. I'm something... else. Something... empty.
As if with every new revelation like this, I'm becoming something more agender, more asexual. Something of which I less understand what it is, or could be.
Together with this there is the fear that if there's indeed a monthly cycle, and uterine tissue that responds to it, then I essentially have what one could call the worst kind of endometriosis one could imagine. Something that just fills up the abdomen without nothing to guide it. Together with a closed-off vagina, that's pretty much a recipe for disaster. At this point it's just an unsubstantiated fear, however.
I wish I had a doctor who understood these fears, doing their best to investigate and alleviate such fears to get an outcome that made me somehow at peace with things. Not this constant battling and doubting of those who are supposed to be providing me with this help. I don't know what to believe, or who to trust any more.
Not just doctors, but people in general. The past days the contrast between me and this woman with whom I shared a few days of our lives couldn't have been more stark. I felt so weak and fearful, with her taking the initiative on a number of occasions, to ask something of the nurses and the like. Things which would have made me freeze up in terror just thinking of doing something wrong or improper.
I guess I felt somewhat jealous, as well. The idea of having a regular female body and just a common issue like a cyst. Not a host of questions, worries and maybe another batch of big surgeries. If I'm lucky.
Maybe I'm just too tired of trying to make sense of things any more at this point. It's gone far beyond merely trying to live my life, finding a job and a place to live. This goes to the very fundamentals of who and what I am. How I fit in with the whole. Once I thought I was just a male, which delusion got destroyed, to be replaced with the thought that I might be more female. Even though I will always look more like a woman, I guess I have to find a way to deal with this emptiness I feel inside now.
I need to figure this out. I need to make sense of this. I need help with this. Not people trying to force things on me. People who wish to help me feel better. Regain some of what I have lost.
The past days I have felt myself struggling with my emotions more and more strongly. Since returning to this apartment that I'm currently inhabiting and what somewhat feels like my old life, it's become even harder. I cannot seem to focus on anything but this emotional and psychological struggle now. It may destroy me if I fail to figure this out. What happens at the appointment in two weeks may make things much better, or much worse.
I don't think that anyone who wishes to help me can do so. I don't believe that anyone who can help me wishes to do so.
I cannot tell what may happen next. I will just have to live through this hell one day at a time. Trying to keep my sanity intact. Trying to stay myself. Whatever the heck that may be.
Is there hope for me? I'm doing my best, but I'm falling apart. Worse than before. Unable to define myself, unable to provide answers to questions, I remain stuck dealing with the same issues. Issues which I cannot resolve on my own. Issues which may require that my body first breaks down further before I get the required help and answers. By which time it may already be too late for the easy and best solutions.
I don't know. I don't know anything. I cannot deal with this. I don't know how I can keep living like this. I don't know whether I'm truly alive at this point. Do I even exist? Am I crazy? Maybe that's the only reasonable answer.
Maya
Saturday, 10 February 2018
Living one's life at the mercy of others
On Thursday this week I had my 12th MRI scan. This one was a repetition of the 11th scan, in order to get a better look at a presumed site of inflammation in my spinal cord. For this contrast dye was required, which was a second time for me. After an hour-long wait in the waiting room of the clinic, I was allowed to go through the scanning routine.
Take of all clothing items, boots and the like which contain metal, change into a shift and walk to the MRI scanner. Lie down and get 'comfortable'. Get the needle for the contrast dye jammed into the large vein in my right arm. Nod as the use of the emergency signalling bulb thingy is explained. Get the sound-dampening headphones put on. Sensor-enhancing cage is placed around the head. Personnel leaves the room. One slides into the scanner and spends the next twenty or thirty minutes kind of dazing as the noisy MRI scanner does its thing.
With the contrast dye there's the warm sensation in one's abdomen and sometimes chest. Other than that it's all the same as every other time. Once the scan is done, one is slid out of the scanner, the sensor cage is removed from around one's head, and one is further extracted from the scanner bed. One walks back to the dressing cubicle, gets dressed again and waits in the waiting room until called by the radiologist.
The good news? With the enhanced resolution courtesy of the contrast dye there was no sign of any inflammation in my spinal cord. This means that next month I should get the all-clear from the neurologist. After three MRI scans, one lumbar puncture, a nerve conductivity and a visual stimulation test, any of the symptoms of pain and numbness which I'm experiencing are most likely not due to anything neurological.
This then shifts the weight of the medical investigation to my gynaecologist. During next week's appointment I hope to discuss the laparoscopy which he proposed, and hopefully plan it for this or next month. At this point the cause of my chronic pain and discomfort has to lie in my abdomen. The main question is what is happening.
That fluid is being produced every month seems certain. That I have a regular monthly cycle is clear to me, and the cycle monitoring using my blood hormone levels should provide further data on this. The questions then seem to revolve around what tissue is present in my abdomen that is responding to these varying hormone levels, where this fluid is being produced and where it goes to afterwards.
One of the possibilities the gynaecologist mentioned was a fistula (rectovaginal fistula [1] ), which basically means a hole formed between the vagina and rectum. This would allow fluids to pass from the vagina to the rectum, and vice versa. That there is regular damage occurring to the inside of the rectum since I was a teenager has been established at this point. This might be an underlying cause.
If what underlies the symptoms of pain and distension in my abdomen - as well as the numbness and pain in my arms and legs - is the formation of such a fistula, caused by the trauma from fluid gathering in the (closed-off) vagina, then this should be easy enough to spot with the laparoscopy. The solution then would be to create an exit for the fluids, meaning creating an exit for the vagina by attaching it to the perineum, creating a regular vagina, even with fanciful labia and everything.
That way the fistula could heal up, I would just have to mess around with tampons and such wonderful things, but I would be free of pain and numbness. Beyond what's deemed acceptable for a regular woman, naturally.
I just hope that this laparoscopy thing works out. That it gets good results and any required follow-up surgery will be readily available. That it'll hopefully be the end of over thirteen years of looking for answers and medical help. That after the surgeries all I have to deal with is healing up and start processing the pain and traumas of about two decades worth of experiences related to this body and society's response to it.
I'm looking forward to telling my medical coach that I won't need any more 'help' from those 'intersex specialists'. Yet the anger and frustration I feel towards intersex 'specialists' and intersex organisations is something that will take a lot of time and energy to process and give a place. The realisation that all of those were utterly useless and a complete waste of time, that all I needed to do was to wait for my body to start suffering symptoms so that I could go to proper doctors and specialists who actually do have a clue.
My body is no different from that of a regular woman. They too suffer development issues of the vagina, fistulas, fissures and so much more. I should never have needed 'special' doctors. That's the take-away message for me here. I'm sick of what ultimately comes down to discrimination.
What stresses me even more than all of the above is the realisation that in addition to all of that, I also have to somehow manage getting a new job, find a new home to move into, deal with the job office in the meantime, and wait to hear what the court will decide in the matter of the eviction case against me.
Honestly, I don't really have the energy to care about any of it at this point. The medical stuff and constant pain management is more than enough already. I regularly communicate with headhunters about potential new jobs, of course, but it is so hard to commit myself to anything when I don't even know how my health will hold up over the coming months, or what will come out of any surgeries.
What'll be the right choice to make? When will I be available for a new job? I don't know. At this point I cannot function any more without constant painkillers. The hoped-for surgery should resolve this, but at this point that's nothing but wishful thinking, more born out of desperation than out of cold reality.
Not to mention the possibility of surgical complications. I just cannot tell. Yet it's not easy to communicate this to others, even if it are those others who will decide over my life the coming months.
It feels so incredibly lonely and terrifying.
Maya
[1] https://en.wikipedia.org/wiki/Rectovaginal_fistula
Take of all clothing items, boots and the like which contain metal, change into a shift and walk to the MRI scanner. Lie down and get 'comfortable'. Get the needle for the contrast dye jammed into the large vein in my right arm. Nod as the use of the emergency signalling bulb thingy is explained. Get the sound-dampening headphones put on. Sensor-enhancing cage is placed around the head. Personnel leaves the room. One slides into the scanner and spends the next twenty or thirty minutes kind of dazing as the noisy MRI scanner does its thing.
With the contrast dye there's the warm sensation in one's abdomen and sometimes chest. Other than that it's all the same as every other time. Once the scan is done, one is slid out of the scanner, the sensor cage is removed from around one's head, and one is further extracted from the scanner bed. One walks back to the dressing cubicle, gets dressed again and waits in the waiting room until called by the radiologist.
The good news? With the enhanced resolution courtesy of the contrast dye there was no sign of any inflammation in my spinal cord. This means that next month I should get the all-clear from the neurologist. After three MRI scans, one lumbar puncture, a nerve conductivity and a visual stimulation test, any of the symptoms of pain and numbness which I'm experiencing are most likely not due to anything neurological.
This then shifts the weight of the medical investigation to my gynaecologist. During next week's appointment I hope to discuss the laparoscopy which he proposed, and hopefully plan it for this or next month. At this point the cause of my chronic pain and discomfort has to lie in my abdomen. The main question is what is happening.
That fluid is being produced every month seems certain. That I have a regular monthly cycle is clear to me, and the cycle monitoring using my blood hormone levels should provide further data on this. The questions then seem to revolve around what tissue is present in my abdomen that is responding to these varying hormone levels, where this fluid is being produced and where it goes to afterwards.
One of the possibilities the gynaecologist mentioned was a fistula (rectovaginal fistula [1] ), which basically means a hole formed between the vagina and rectum. This would allow fluids to pass from the vagina to the rectum, and vice versa. That there is regular damage occurring to the inside of the rectum since I was a teenager has been established at this point. This might be an underlying cause.
If what underlies the symptoms of pain and distension in my abdomen - as well as the numbness and pain in my arms and legs - is the formation of such a fistula, caused by the trauma from fluid gathering in the (closed-off) vagina, then this should be easy enough to spot with the laparoscopy. The solution then would be to create an exit for the fluids, meaning creating an exit for the vagina by attaching it to the perineum, creating a regular vagina, even with fanciful labia and everything.
That way the fistula could heal up, I would just have to mess around with tampons and such wonderful things, but I would be free of pain and numbness. Beyond what's deemed acceptable for a regular woman, naturally.
I just hope that this laparoscopy thing works out. That it gets good results and any required follow-up surgery will be readily available. That it'll hopefully be the end of over thirteen years of looking for answers and medical help. That after the surgeries all I have to deal with is healing up and start processing the pain and traumas of about two decades worth of experiences related to this body and society's response to it.
I'm looking forward to telling my medical coach that I won't need any more 'help' from those 'intersex specialists'. Yet the anger and frustration I feel towards intersex 'specialists' and intersex organisations is something that will take a lot of time and energy to process and give a place. The realisation that all of those were utterly useless and a complete waste of time, that all I needed to do was to wait for my body to start suffering symptoms so that I could go to proper doctors and specialists who actually do have a clue.
My body is no different from that of a regular woman. They too suffer development issues of the vagina, fistulas, fissures and so much more. I should never have needed 'special' doctors. That's the take-away message for me here. I'm sick of what ultimately comes down to discrimination.
What stresses me even more than all of the above is the realisation that in addition to all of that, I also have to somehow manage getting a new job, find a new home to move into, deal with the job office in the meantime, and wait to hear what the court will decide in the matter of the eviction case against me.
Honestly, I don't really have the energy to care about any of it at this point. The medical stuff and constant pain management is more than enough already. I regularly communicate with headhunters about potential new jobs, of course, but it is so hard to commit myself to anything when I don't even know how my health will hold up over the coming months, or what will come out of any surgeries.
What'll be the right choice to make? When will I be available for a new job? I don't know. At this point I cannot function any more without constant painkillers. The hoped-for surgery should resolve this, but at this point that's nothing but wishful thinking, more born out of desperation than out of cold reality.
Not to mention the possibility of surgical complications. I just cannot tell. Yet it's not easy to communicate this to others, even if it are those others who will decide over my life the coming months.
It feels so incredibly lonely and terrifying.
Maya
[1] https://en.wikipedia.org/wiki/Rectovaginal_fistula
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
Monday, 25 December 2017
Everything begins and ends with one's body
The moment that one is born and becomes conscious, the world begins.
The moment that one's body falters and dies, the world ends.
Everything in between is coloured by the health of one's body.
I remember how there was a time when I could walk without pain. I remember how I wasn't concerned every few minutes with new, interesting pains or the general state of my body. That seems all so long ago now. Part of a past in which there was still sunshine, a home and happiness. Not this bleak dystopian present with a faltering health and more hospital and ER visits than I care to remember.
Next month another three doctor visits have been scheduled, with my GP, neurologist and gynaecologist. My endocrinologist also asked to remain informed, along with a second gynaecologist. Next month is also planned full with psychotherapist appointments, with my second psychotherapist (and neurologist) likely wanting updates or maybe getting me some updates. I don't want to harbour hope that this time something will change. Yet it must.
After giving up on the contraceptive pill, ibuprofen and mostly on diclofenac, I have now found a temporary pain reprieve in CBD - cannabidiol, a cannabinoid extracted from cannabis. I'm slowly beginning to understand why medical marijuana is a thing. CBD manages to knock down the daily pains and numbness a few notches to where I can somewhat function and focus again. Yet it's not a solution.
The pain, sensitivity and numbness that used to just plague my right side has been gradually spreading to my left side as well. It doesn't go away in between monthly cycles any more either. I still don't know what causes it and how much internal damage I'm possibly suffering each day that it is not being treated.
Today is Christmas. Yet I'm not feeling very cheerful. Not when one has to confront such comforting thoughts such as this possibly being my last Christmas. With the enthusiasm doctors have shown for my case so far, I am not hopeful that they'll get to the right conclusion in time if what is happening to me turns out to be fatal. And even if it's not, I might end up paralysed or incapable of functioning any more without extreme painkillers, judging by how my situation has progressed so far.
Being in this much pain and discomfort, along with frequent nausea, dizziness, headaches and a near-complete lack of appetite make that just maintaining my body to keep to the status quo as much as possible is taking nearly all of my attention and energy.
Sure, I'm also supposed to find a new job, and I might get kicked out of this apartment soon, but first things first. If my body isn't doing well, then that makes everything else seem rather minor. It's amazing how intense pain refocuses one's priorities, I guess. If survival takes becoming homeless, then that's a price worth paying. I think. Yet being dead because one didn't prioritise one's body over everything else is also such a bummer.
For the coming months I pray that things somehow work out. That the doctors do take my condition seriously and that the cause of these pains and numbness is found and treated. That the new job thing works out and that I may even find a real home again in the process. That my daily life will no longer be darkened by having a faltering body.
Hoping for the kindness and understanding of others, I guess.
May the gods have mercy on my soul.
Maya
The moment that one's body falters and dies, the world ends.
Everything in between is coloured by the health of one's body.
I remember how there was a time when I could walk without pain. I remember how I wasn't concerned every few minutes with new, interesting pains or the general state of my body. That seems all so long ago now. Part of a past in which there was still sunshine, a home and happiness. Not this bleak dystopian present with a faltering health and more hospital and ER visits than I care to remember.
Next month another three doctor visits have been scheduled, with my GP, neurologist and gynaecologist. My endocrinologist also asked to remain informed, along with a second gynaecologist. Next month is also planned full with psychotherapist appointments, with my second psychotherapist (and neurologist) likely wanting updates or maybe getting me some updates. I don't want to harbour hope that this time something will change. Yet it must.
After giving up on the contraceptive pill, ibuprofen and mostly on diclofenac, I have now found a temporary pain reprieve in CBD - cannabidiol, a cannabinoid extracted from cannabis. I'm slowly beginning to understand why medical marijuana is a thing. CBD manages to knock down the daily pains and numbness a few notches to where I can somewhat function and focus again. Yet it's not a solution.
The pain, sensitivity and numbness that used to just plague my right side has been gradually spreading to my left side as well. It doesn't go away in between monthly cycles any more either. I still don't know what causes it and how much internal damage I'm possibly suffering each day that it is not being treated.
Today is Christmas. Yet I'm not feeling very cheerful. Not when one has to confront such comforting thoughts such as this possibly being my last Christmas. With the enthusiasm doctors have shown for my case so far, I am not hopeful that they'll get to the right conclusion in time if what is happening to me turns out to be fatal. And even if it's not, I might end up paralysed or incapable of functioning any more without extreme painkillers, judging by how my situation has progressed so far.
Being in this much pain and discomfort, along with frequent nausea, dizziness, headaches and a near-complete lack of appetite make that just maintaining my body to keep to the status quo as much as possible is taking nearly all of my attention and energy.
Sure, I'm also supposed to find a new job, and I might get kicked out of this apartment soon, but first things first. If my body isn't doing well, then that makes everything else seem rather minor. It's amazing how intense pain refocuses one's priorities, I guess. If survival takes becoming homeless, then that's a price worth paying. I think. Yet being dead because one didn't prioritise one's body over everything else is also such a bummer.
For the coming months I pray that things somehow work out. That the doctors do take my condition seriously and that the cause of these pains and numbness is found and treated. That the new job thing works out and that I may even find a real home again in the process. That my daily life will no longer be darkened by having a faltering body.
Hoping for the kindness and understanding of others, I guess.
May the gods have mercy on my soul.
Maya
Tuesday, 19 December 2017
I should focus on my health first, if I can
Last night I woke up a few times again with terrible pains in my abdomen, yet I was able to fall asleep again after the pain subsided. This morning I noticed that my abdomen is horribly distended again, making it look as if I'm quite a few months pregnant. Pulling in my stomach makes it look more or less normal, but the pain remains throughout my abdomen and lower back.
The entire day I'm feeling somewhat feverish and out of it. My left leg is also beginning to feel numb, with the typical pain in my left knee which I used to feel only in my right knee before. My left side is beginning to hurt more and more, the same way that my right side started hurting, years ago. I'm still trying to get through the day without painkillers, beyond the occasional ibuprofen or bit of diclofenac gel on my abdomen for when things get really bad.
Even then I feel completely drained at the end of the day from having to suffer through the frequent surges of pain, and the sensation of being ripped apart below whenever I go to the toilet.
I am so tired. I don't want this any more. I'm so sick of everything.
That's what I found myself proclaiming earlier as I got back from work. It's hard for me to properly realise when I'm tired, as I have been suffering through so much physical and psychological pain for over a decade now. It's become 'normal'. Yet there's still only so much pain my body and mind can take. And I'm completely through. Drained. Exhausted. Unable to give or take any more.
Earlier I found a letter in the mailbox about an appointment at the local job office to talk about my efforts to get a new job. It's hard not to start laughing hysterically at such a phrasing. I could easily accept one of the potential couple of job offers from headhunters. Finding a job I also want is harder, but not impossible given a bit of time. Yet more pressing is my current health.
Next month I also have an appointment scheduled with my GP, neurologist and gynaecologist, along with weekly appointments with my therapist. My hope is to get them to realise the seriousness of what is happening to my body at this point, along with the psychological pressure this creates.
When I can barely walk normally and increasingly find myself considering the possibility of needing a wheelchair at some point to get around, that's simply depressing. Makes one want to get up to one of those learned types and yell at them to finally help me. That kind of pressure.
Why should I even care about a job if my body isn't healthy? When I'm suffering every single day, both physically and mentally? Why could anyone demand such a thing of me?
I need to rest. To find stability in my life. Not to find myself chased from one more thing to muster the energy for to another one. To find myself risking embracing that dark part of myself which doesn't care about things like happiness, others or even life. That part which just wants to destroy and annihilate. Which rejoices in me hurting myself. Which enjoys watching me suffer, as it brings me closer every day to once again try to find that sense of incredible peace.
When I attempt to take my own life again after giving up on it. The intense, wonderful feeling of serenity.
...
I really want it so badly.
...
When I feel relaxed and at ease that dark voice subsides once more. I try to hold onto that feeling of hope and peace which involves me living a happy life and not taking my own life. Yet there's only so much which I can do. I need to avoid stress, but I can only do so much there.
Me getting laid off is horrible. Me having to face more of the eviction case is horrible. Me finding a new place to live is horrible. Me finding a new job is horrible. Me losing more and more things which I thought i wouldn't have to give up is horrible. So much stress. So much pain I have to shield myself from. To numb myself and pretend it really doesn't hurt so much.
Until it does and I find myself helpless again against the intense pain and suffering. To feel tempted to embrace that sensation of being powerless. To accept the inevitability of me failing to pull through this one.
I need help. Badly. Lots of help.
Else I will die.
I still don't want to die.
Yet I'm so tired... and everything hurts so much...
Maya
The entire day I'm feeling somewhat feverish and out of it. My left leg is also beginning to feel numb, with the typical pain in my left knee which I used to feel only in my right knee before. My left side is beginning to hurt more and more, the same way that my right side started hurting, years ago. I'm still trying to get through the day without painkillers, beyond the occasional ibuprofen or bit of diclofenac gel on my abdomen for when things get really bad.
Even then I feel completely drained at the end of the day from having to suffer through the frequent surges of pain, and the sensation of being ripped apart below whenever I go to the toilet.
I am so tired. I don't want this any more. I'm so sick of everything.
That's what I found myself proclaiming earlier as I got back from work. It's hard for me to properly realise when I'm tired, as I have been suffering through so much physical and psychological pain for over a decade now. It's become 'normal'. Yet there's still only so much pain my body and mind can take. And I'm completely through. Drained. Exhausted. Unable to give or take any more.
Earlier I found a letter in the mailbox about an appointment at the local job office to talk about my efforts to get a new job. It's hard not to start laughing hysterically at such a phrasing. I could easily accept one of the potential couple of job offers from headhunters. Finding a job I also want is harder, but not impossible given a bit of time. Yet more pressing is my current health.
Next month I also have an appointment scheduled with my GP, neurologist and gynaecologist, along with weekly appointments with my therapist. My hope is to get them to realise the seriousness of what is happening to my body at this point, along with the psychological pressure this creates.
When I can barely walk normally and increasingly find myself considering the possibility of needing a wheelchair at some point to get around, that's simply depressing. Makes one want to get up to one of those learned types and yell at them to finally help me. That kind of pressure.
Why should I even care about a job if my body isn't healthy? When I'm suffering every single day, both physically and mentally? Why could anyone demand such a thing of me?
I need to rest. To find stability in my life. Not to find myself chased from one more thing to muster the energy for to another one. To find myself risking embracing that dark part of myself which doesn't care about things like happiness, others or even life. That part which just wants to destroy and annihilate. Which rejoices in me hurting myself. Which enjoys watching me suffer, as it brings me closer every day to once again try to find that sense of incredible peace.
When I attempt to take my own life again after giving up on it. The intense, wonderful feeling of serenity.
...
I really want it so badly.
...
When I feel relaxed and at ease that dark voice subsides once more. I try to hold onto that feeling of hope and peace which involves me living a happy life and not taking my own life. Yet there's only so much which I can do. I need to avoid stress, but I can only do so much there.
Me getting laid off is horrible. Me having to face more of the eviction case is horrible. Me finding a new place to live is horrible. Me finding a new job is horrible. Me losing more and more things which I thought i wouldn't have to give up is horrible. So much stress. So much pain I have to shield myself from. To numb myself and pretend it really doesn't hurt so much.
Until it does and I find myself helpless again against the intense pain and suffering. To feel tempted to embrace that sensation of being powerless. To accept the inevitability of me failing to pull through this one.
I need help. Badly. Lots of help.
Else I will die.
I still don't want to die.
Yet I'm so tired... and everything hurts so much...
Maya
Sunday, 17 December 2017
I must find that exceptionally challenging and rewarding job
I must. That's pretty much the summary of everything that is going on for me at this point.
For the chronic pains for which I must find medical help. For the worrying appearance of blood in my stool accompanied by the sensation of something rupturing inside my abdomen, for which I must also seek medical help. For the flaring up of my post-traumatic stress disorder and dissociative identity disorder-like symptoms as a result of the increasing stress I also must find more help and support.
For having been laid off from my job I must find a new job. For being jobless I will have to deal with the job centre starting next month and have to apply to at least so many jobs each month, or lose the welfare money. For being jobless I must find a job within a year or face deportation back to the Netherlands.
For fixing the apartment and eviction situation I must at least find a new place, for which I must first find a job. To rent or buy a new place, I must have a job.
All of this leaves me jobless, with chronic pain and psychological disorders which prevent me from functioning 'normally'.
I must fix it somehow. By myself. Even if it's impossible. Again I feel angry at myself for having wasted so many years on my intersex condition and backwards doctors without a shred of sympathy. I should have ignored it. Made a much more successful career. Then died in my 30s from sepsis anyway. Bugger.
It often doesn't feel as if there's any point to me fighting for myself any longer. It's just the same pattern every time. Few steps forward, then get kicked back to a worse position than before.
I realise that I could just settle for working a menial job at a dull company, but in that case I would have made it at my current employer as well, writing JavaScript or Java code until my brain started dribbling out of my ears from sheer boredom. I know that this won't ever work.
Ideally I would get a job in a more R&D position involving low-level software and hardware development. Working on interesting new technologies which will make the lives of everyone better. Something that can actually hold my attention. I already had to thank for a potential job offer this week because it'd just involve writing casual games (albeit in C++) all the time. I could do it, but would get distracted over time. That's what I learned about how my mind works.
My curse always seems to have been that I could never be 'just like others'. Not with my biological sex (hermaphroditic intersex), not with being just left- or right-handed (ambidextrous), not with my perception of taste (super-taster), or the way that I learn (100% visual-spatial learner, gifted & auto-didactic). None of this is my fault, all of this I was simply born with. Yet to then fit in regular society? Forget it. Been there, tried it, failed miserably, tried again and again until I finally learned that lesson.
I don't think that I would be happy in any other job than one which would challenge me intellectually and which appreciates me for being different. I guess I must keep looking... but I also hope that such a company is also looking for someone like me, and may stumble over my profile somewhere.
Can't hurt to hope, just to have that hope crushed, I guess.
Here's to that never-ending source of hope.
Maya
For the chronic pains for which I must find medical help. For the worrying appearance of blood in my stool accompanied by the sensation of something rupturing inside my abdomen, for which I must also seek medical help. For the flaring up of my post-traumatic stress disorder and dissociative identity disorder-like symptoms as a result of the increasing stress I also must find more help and support.
For having been laid off from my job I must find a new job. For being jobless I will have to deal with the job centre starting next month and have to apply to at least so many jobs each month, or lose the welfare money. For being jobless I must find a job within a year or face deportation back to the Netherlands.
For fixing the apartment and eviction situation I must at least find a new place, for which I must first find a job. To rent or buy a new place, I must have a job.
All of this leaves me jobless, with chronic pain and psychological disorders which prevent me from functioning 'normally'.
I must fix it somehow. By myself. Even if it's impossible. Again I feel angry at myself for having wasted so many years on my intersex condition and backwards doctors without a shred of sympathy. I should have ignored it. Made a much more successful career. Then died in my 30s from sepsis anyway. Bugger.
It often doesn't feel as if there's any point to me fighting for myself any longer. It's just the same pattern every time. Few steps forward, then get kicked back to a worse position than before.
I realise that I could just settle for working a menial job at a dull company, but in that case I would have made it at my current employer as well, writing JavaScript or Java code until my brain started dribbling out of my ears from sheer boredom. I know that this won't ever work.
Ideally I would get a job in a more R&D position involving low-level software and hardware development. Working on interesting new technologies which will make the lives of everyone better. Something that can actually hold my attention. I already had to thank for a potential job offer this week because it'd just involve writing casual games (albeit in C++) all the time. I could do it, but would get distracted over time. That's what I learned about how my mind works.
My curse always seems to have been that I could never be 'just like others'. Not with my biological sex (hermaphroditic intersex), not with being just left- or right-handed (ambidextrous), not with my perception of taste (super-taster), or the way that I learn (100% visual-spatial learner, gifted & auto-didactic). None of this is my fault, all of this I was simply born with. Yet to then fit in regular society? Forget it. Been there, tried it, failed miserably, tried again and again until I finally learned that lesson.
I don't think that I would be happy in any other job than one which would challenge me intellectually and which appreciates me for being different. I guess I must keep looking... but I also hope that such a company is also looking for someone like me, and may stumble over my profile somewhere.
Can't hurt to hope, just to have that hope crushed, I guess.
Here's to that never-ending source of hope.
Maya
Thursday, 30 November 2017
Not a man. Not a woman. Always someone else's problem
The past weeks my therapist and I have been playing a little game, involving him suggesting gynaecologists and other places to contact for possible help with my increasing monthly pains, numbness and general discomfort. I then contact those places to get told that they cannot help me, but wishing me good luck. Or not responding at all. Or like earlier that they don't have room for more non-privately insured patients, but please try again next year or so.
That's basically the past thirteen years in a nutshell: me trying new places, following suggestions and getting disappointed over and over. With only super-rare exceptions. At this point I am not convinced that there is any point to me continuing to play this game. At least not trying to keep up the pretence that I will ever be treated like a biological woman - despite mostly being one - and that the only 'help' there exists for intersex people is the utter brutality of 'normalisation surgery', the euphemistic term for genital mutilation.
I actually managed to lie to myself this time, actually convincing myself that this time it might be different. Yet nothing again. Maybe there will be an open spot for me next year. But what are the chances that I won't just be served a 'sorry, I can't help you' from the gynaecologist with the very first appointment? Won't be the first time. I am convinced that trying this 'solution' over and over again is insane and pointless.
What I have left at this point is to wait and see what the neurologist says regarding the worsening numbness and pain in the right side of my body, with the extreme use of painkillers in order for me to live a somewhat normal life. Kind of. Not really. Maybe the neurologist will order more tests and they will finally get down to the cause. At least at the neurologist it's not nearly as important as what one's biological sex is. We're all wired mostly the same, and causes of pain and numbness tend to be similar.
I can move without too much pain most of the time after taking an ibuprofen, or dosing up on diclofenac gel, yet I have to use both practically without pause at this point. Without either I cannot get through most days, or not wake up from the pain. I absolutely do not like using painkillers, but increasingly I am faced without any other option.
Yesterday for example I was doing okay, up till the point where suddenly the right side of my abdomen started hurting severely, along with a burning sensation in the vaginal area. What happened? I don't know. It didn't go away on its own after suffering through it for a while, but did when I took an ibuprofen. Today much the same.
I don't know what's happening, and am powerless to find out answers, let alone do anything about it.
At this point I am trying to manage a new job, worrying about my health and facing the prospect of finding a new place to live. Which is more important? How much time can I afford to spend on either? A home is irrelevant until I get a job first and know where I'll be moving to. Is my health more important than an income? I would say it is. Yet if one isn't healthy, one cannot hold a job, or even get one.
It appears that there is no right answer. Just an impossible balancing act.
Maya
That's basically the past thirteen years in a nutshell: me trying new places, following suggestions and getting disappointed over and over. With only super-rare exceptions. At this point I am not convinced that there is any point to me continuing to play this game. At least not trying to keep up the pretence that I will ever be treated like a biological woman - despite mostly being one - and that the only 'help' there exists for intersex people is the utter brutality of 'normalisation surgery', the euphemistic term for genital mutilation.
I actually managed to lie to myself this time, actually convincing myself that this time it might be different. Yet nothing again. Maybe there will be an open spot for me next year. But what are the chances that I won't just be served a 'sorry, I can't help you' from the gynaecologist with the very first appointment? Won't be the first time. I am convinced that trying this 'solution' over and over again is insane and pointless.
What I have left at this point is to wait and see what the neurologist says regarding the worsening numbness and pain in the right side of my body, with the extreme use of painkillers in order for me to live a somewhat normal life. Kind of. Not really. Maybe the neurologist will order more tests and they will finally get down to the cause. At least at the neurologist it's not nearly as important as what one's biological sex is. We're all wired mostly the same, and causes of pain and numbness tend to be similar.
I can move without too much pain most of the time after taking an ibuprofen, or dosing up on diclofenac gel, yet I have to use both practically without pause at this point. Without either I cannot get through most days, or not wake up from the pain. I absolutely do not like using painkillers, but increasingly I am faced without any other option.
Yesterday for example I was doing okay, up till the point where suddenly the right side of my abdomen started hurting severely, along with a burning sensation in the vaginal area. What happened? I don't know. It didn't go away on its own after suffering through it for a while, but did when I took an ibuprofen. Today much the same.
I don't know what's happening, and am powerless to find out answers, let alone do anything about it.
At this point I am trying to manage a new job, worrying about my health and facing the prospect of finding a new place to live. Which is more important? How much time can I afford to spend on either? A home is irrelevant until I get a job first and know where I'll be moving to. Is my health more important than an income? I would say it is. Yet if one isn't healthy, one cannot hold a job, or even get one.
It appears that there is no right answer. Just an impossible balancing act.
Maya
Tuesday, 21 November 2017
A biological woman who can find no gynaecologist to help her
Years ago I thought that I would never need a gynaecologist. That was back when I still assumed that I did not have ovaries and such, figuring that I had the luxury of stable hormone levels courtesy of hormone therapy. In that regard I was not much different from a transgender person. My assumption was that I would have to take those hormones for the rest of my life.
Then 2015 started off and with it my body began to undergo physical changes. From the appearance of linea nigra on my abdomen to increasing monthly pains and more. That's when I learned that I do in fact have ovaries. Since that time I have found myself increasingly struggling with the negative symptoms that these changes brought with them.
The past days I found myself waking up basically to pain. As the monthly cycle kicks in anew, the pain in the middle of my abdomen - just below the navel - can be felt, adding to the pain in the right side of my body that doesn't seem to go away any more. My right hip and side are a constant source of pain. I haven't been able to sleep on my right side without liberal application of painkillers for months now. My right leg feels numb, and all the time my right ankle and feet feel as if they are actually broken or injured.
As at this point I have given up on the ridiculous thought that there might actually be a medical specialist with a clue about intersex, let alone who is interested in anything more than eradicating intersex from the face of the earth through forced surgery. That just leaves me with trying to find a gynaecologist willing to take me on as a patient.
Since my problems seem to be caused by the female parts of my anatomy, that would seem like a reasonable course of action. Yet after years of trying it seems that it's irrelevant that I'm essentially biologically female. Me being in increasingly more pain seems to be of no real concern either. I seem to be facing the prospect of more severe abdominal pain and the gradual loss of sensation and increase of pain in at least my right leg and arm. My last attempt last week to contact a gynaecologist also ended with me getting rebuffed but offered 'good luck'. I'm sure that'll help.
What am I to do? Is there anything that I can do?
I'm regularly maxing out the daily allowed amounts of ibuprofen and diclofenac painkillers, just so that I can get through the day, and even then I often find myself flinching in sudden flashes of pain, or only realise how bad the pain still is when I allow myself to relax a bit and I notice how incredibly worn out I am of tolerating the constant pain.
At this point I cannot even afford to do anything but fight this pain with painkillers, as my physical health is basically irrelevant next to the current issues of finding a new job, finding and moving into a new place, and also dealing with the eviction case. This week the latter continues with an official inspection. Next week I have an appointment at the Dutch embassy in Bern to have my passport renewed. Neither of which allow me to be sick.
Thus with my current schedule I can but ignore the pain and pray that nothing disastrous is going to happen that will make it impossible for me to walk and otherwise attend to those priorities. I would be eternally grateful if someone could help me out with finding that gynaecologist who isn't afraid of a more unusual case like mine, but I'm not very hopeful there.
It's one of those areas where society makes it abundantly clear that I'm not a proper woman and also not really a proper human. It feels like society tolerates me more than anything, just like how I tolerate these physical pains because I have no other choice.
I wish things could be different.
Maya
Then 2015 started off and with it my body began to undergo physical changes. From the appearance of linea nigra on my abdomen to increasing monthly pains and more. That's when I learned that I do in fact have ovaries. Since that time I have found myself increasingly struggling with the negative symptoms that these changes brought with them.
The past days I found myself waking up basically to pain. As the monthly cycle kicks in anew, the pain in the middle of my abdomen - just below the navel - can be felt, adding to the pain in the right side of my body that doesn't seem to go away any more. My right hip and side are a constant source of pain. I haven't been able to sleep on my right side without liberal application of painkillers for months now. My right leg feels numb, and all the time my right ankle and feet feel as if they are actually broken or injured.
As at this point I have given up on the ridiculous thought that there might actually be a medical specialist with a clue about intersex, let alone who is interested in anything more than eradicating intersex from the face of the earth through forced surgery. That just leaves me with trying to find a gynaecologist willing to take me on as a patient.
Since my problems seem to be caused by the female parts of my anatomy, that would seem like a reasonable course of action. Yet after years of trying it seems that it's irrelevant that I'm essentially biologically female. Me being in increasingly more pain seems to be of no real concern either. I seem to be facing the prospect of more severe abdominal pain and the gradual loss of sensation and increase of pain in at least my right leg and arm. My last attempt last week to contact a gynaecologist also ended with me getting rebuffed but offered 'good luck'. I'm sure that'll help.
What am I to do? Is there anything that I can do?
I'm regularly maxing out the daily allowed amounts of ibuprofen and diclofenac painkillers, just so that I can get through the day, and even then I often find myself flinching in sudden flashes of pain, or only realise how bad the pain still is when I allow myself to relax a bit and I notice how incredibly worn out I am of tolerating the constant pain.
At this point I cannot even afford to do anything but fight this pain with painkillers, as my physical health is basically irrelevant next to the current issues of finding a new job, finding and moving into a new place, and also dealing with the eviction case. This week the latter continues with an official inspection. Next week I have an appointment at the Dutch embassy in Bern to have my passport renewed. Neither of which allow me to be sick.
Thus with my current schedule I can but ignore the pain and pray that nothing disastrous is going to happen that will make it impossible for me to walk and otherwise attend to those priorities. I would be eternally grateful if someone could help me out with finding that gynaecologist who isn't afraid of a more unusual case like mine, but I'm not very hopeful there.
It's one of those areas where society makes it abundantly clear that I'm not a proper woman and also not really a proper human. It feels like society tolerates me more than anything, just like how I tolerate these physical pains because I have no other choice.
I wish things could be different.
Maya
Saturday, 11 November 2017
A dream or being awake: same difference
I was on my way to my family doctor to make an appointment. Making my way through the hallways of what looked like those of a sci-fi-looking space station, I could see the GP office's entrance when I made the discovery that I could feel something weird in my groin. A quick check revealed that my testicles had regrown. This made me feel both unsettled and happy, as though unexpected, it would help me make the point towards the doctor that my body was doing weird stuff and that I would need help, stat.
Sitting myself down at a nearby table with the laptop which I was carrying with me, a waitress commented how great it was that one can look up information everywhere these days. I was readying to investigate what Google et al. would have to say about this phenomenon of organs which had been removed before suddenly regrowing by themselves. Then the scene shifted.
I was in a similar location as before, but with more large windows, with light pouring in. Some other people were there. I talked with one of them about a package that was lying in front of him on the table. It turned out to contain a brand-new Commodore 64, which he didn't want any more because it used the newer type of power plug. I said that I would gladly have it.
I was lying in my bed, suppressing feelings of terror and general fear and discomfort at the thought of all that is coming my way the coming weeks. Whether I'll be okay. Also the realisation of needing to sleep more. That sleep is essential if I want to get through those weeks at all.
I was walking through this shopping mall, admiring the fruit and vegetables that was put out. After a bit of walking I came to what seemed like a real-life demo for a video game. It had me walking into this room that had like a hill in it, everything with a slightly purple tint to it. Walking up the steps carved into the side of the hill, I got to a section with a wall that I could walk in front of. Walking to the right side, there was a section of the wall that I could take off, with a carving of a goat.
Next to this carving was a bit of netting stuck across the opening of a cave, inside of which I could hear a goat. Tearing the netting away allowed the goat and another animal that was inside to get out.
I was lying in my bed, nursing bad pains and numbness on the right side of my body. Getting out of the bed, I got some diclofenac gel to put on the worst part the pain, namely on my right hip. I noticed that I could barely walk from the pain, and was on the verge of crying because the pain was so bad.
After making breakfast and taking an ibuprofen I began to feel better. Donning headphones to block out any environmental noises helped even more. I'm assuming that I am awake at this point. Not because I'm typing this, but because I'm feeling cold and uncomfortable. I cannot recall ever having felt that in a dream.
Dreams are better, I think.
Maya
Sitting myself down at a nearby table with the laptop which I was carrying with me, a waitress commented how great it was that one can look up information everywhere these days. I was readying to investigate what Google et al. would have to say about this phenomenon of organs which had been removed before suddenly regrowing by themselves. Then the scene shifted.
I was in a similar location as before, but with more large windows, with light pouring in. Some other people were there. I talked with one of them about a package that was lying in front of him on the table. It turned out to contain a brand-new Commodore 64, which he didn't want any more because it used the newer type of power plug. I said that I would gladly have it.
I was lying in my bed, suppressing feelings of terror and general fear and discomfort at the thought of all that is coming my way the coming weeks. Whether I'll be okay. Also the realisation of needing to sleep more. That sleep is essential if I want to get through those weeks at all.
I was walking through this shopping mall, admiring the fruit and vegetables that was put out. After a bit of walking I came to what seemed like a real-life demo for a video game. It had me walking into this room that had like a hill in it, everything with a slightly purple tint to it. Walking up the steps carved into the side of the hill, I got to a section with a wall that I could walk in front of. Walking to the right side, there was a section of the wall that I could take off, with a carving of a goat.
Next to this carving was a bit of netting stuck across the opening of a cave, inside of which I could hear a goat. Tearing the netting away allowed the goat and another animal that was inside to get out.
I was lying in my bed, nursing bad pains and numbness on the right side of my body. Getting out of the bed, I got some diclofenac gel to put on the worst part the pain, namely on my right hip. I noticed that I could barely walk from the pain, and was on the verge of crying because the pain was so bad.
After making breakfast and taking an ibuprofen I began to feel better. Donning headphones to block out any environmental noises helped even more. I'm assuming that I am awake at this point. Not because I'm typing this, but because I'm feeling cold and uncomfortable. I cannot recall ever having felt that in a dream.
Dreams are better, I think.
Maya
Saturday, 21 October 2017
When medication is all that keeps one going
Earlier this year I started taking the contraceptive pill again to deal with the monthly symptoms of the numbness and pain in the right side of my body. This seemed to work great until last month, when I began to lose sensation in my right leg again. As a result, I figured if it was only going to be a temporary solution, I might as well see what these monthly symptoms are like without being kept in check by the pill.
Suffice it to say, it's pretty darn bad. Much worse than before, really. The past few days I tried to suffer through the pain and everything else without resorting to painkillers, but as yesterday I practically lost all sensation and mobility in the right side of my body, I figured some painkillers are in order.
The amazing thing which I learned as a result is that diclofenac [1] applied as a gel directly on the right side of my abdomen (as that's where the sharp pains originate) seems to almost immediately very effectively deal not only with the pain in that area, but also removes much of the numbness and weakness in both my right leg and arm. Adding ibuprofen (another NSAID) improves things even more.
Although the pain isn't fully gone (I can still feel it burn in the right side of my abdomen as I type this), it reduces the effective impact from the pain, numbness and other symptoms to a point where I can walk almost normally again, use my right arm without it tiring almost instantly, and perhaps most importantly, where I can feel my head clear from the fog of pain and headache.
That NSAID medication appears to be so highly effective against these symptoms argues again for endometriosis [2] or similar to be behind them. Endometriosis is something which generally also worsens over time, and which is strictly tied to one's monthly cycle. Two characteristics which sadly hold true in my case.
Unfortunately, endometriosis is generally tricky to diagnose. Whether or not next week's MRI scan will be in any way or form revealing if the underlying problem is in fact endometriosis has to be seen. Each case of this condition is different, making it hard to say with certainty what is going on. All I do know is that when the last MRI scans were made of my abdomen back in 2014, I did not yet have symptoms like these of this severity and magnitude.
At this point I could gamble that I do in fact have endometriosis and try to self-manage the symptoms with the contraceptive pill along with plentiful use of NSAID painkillers. Yet experience has taught me that this would help to cover things up for a bit longer without really addressing the underlying issue. Considering that my female reproductive organs seem to be an utter mess as a result of my intersex condition, there do not appear to be any existing cases or data in the medical records which would preclude the possibility of endometriosis in my case turning fatal.
Living a life that's only made bearable through plentiful medication does not seem like a great prospect to me, either. I would much rather get a diagnosis and possibly surgery that would both give me some concrete answers and conceivably a life free from constant painkiller use and the necessity of taking the contraceptive pill or similar.
Next week better get me some answers, really.
Maya
[1] https://en.wikipedia.org/wiki/Diclofenac
[2] https://en.wikipedia.org/wiki/Endometriosis
Suffice it to say, it's pretty darn bad. Much worse than before, really. The past few days I tried to suffer through the pain and everything else without resorting to painkillers, but as yesterday I practically lost all sensation and mobility in the right side of my body, I figured some painkillers are in order.
The amazing thing which I learned as a result is that diclofenac [1] applied as a gel directly on the right side of my abdomen (as that's where the sharp pains originate) seems to almost immediately very effectively deal not only with the pain in that area, but also removes much of the numbness and weakness in both my right leg and arm. Adding ibuprofen (another NSAID) improves things even more.
Although the pain isn't fully gone (I can still feel it burn in the right side of my abdomen as I type this), it reduces the effective impact from the pain, numbness and other symptoms to a point where I can walk almost normally again, use my right arm without it tiring almost instantly, and perhaps most importantly, where I can feel my head clear from the fog of pain and headache.
That NSAID medication appears to be so highly effective against these symptoms argues again for endometriosis [2] or similar to be behind them. Endometriosis is something which generally also worsens over time, and which is strictly tied to one's monthly cycle. Two characteristics which sadly hold true in my case.
Unfortunately, endometriosis is generally tricky to diagnose. Whether or not next week's MRI scan will be in any way or form revealing if the underlying problem is in fact endometriosis has to be seen. Each case of this condition is different, making it hard to say with certainty what is going on. All I do know is that when the last MRI scans were made of my abdomen back in 2014, I did not yet have symptoms like these of this severity and magnitude.
At this point I could gamble that I do in fact have endometriosis and try to self-manage the symptoms with the contraceptive pill along with plentiful use of NSAID painkillers. Yet experience has taught me that this would help to cover things up for a bit longer without really addressing the underlying issue. Considering that my female reproductive organs seem to be an utter mess as a result of my intersex condition, there do not appear to be any existing cases or data in the medical records which would preclude the possibility of endometriosis in my case turning fatal.
Living a life that's only made bearable through plentiful medication does not seem like a great prospect to me, either. I would much rather get a diagnosis and possibly surgery that would both give me some concrete answers and conceivably a life free from constant painkiller use and the necessity of taking the contraceptive pill or similar.
Next week better get me some answers, really.
Maya
[1] https://en.wikipedia.org/wiki/Diclofenac
[2] https://en.wikipedia.org/wiki/Endometriosis
Saturday, 14 October 2017
On being intersex and never being a part of humanity
For the past months I have been slowly digging up the memories of the childhood abuse I seem to have suffered as a young child. Most recently there's the horrific memory of lying down, naked, with hands touching me everywhere in a forceful fashion. I recall resisting, and may have fought back at one point, startling them and allowing me to escape into that room which I remembered first, with this man yelling at me that it was all my fault before slamming the door close.
I think I do understand quite well now why I suddenly didn't allow anyone to touch or hug me any more back then, even though according to my mother I used to be very open and friendly to everyone. Suddenly I became quiet and withdrawn, not allowing anyone to get close to me in any form or fashion. Not even if that person was my own mother who I am pretty sure has never harmed or hurt me in any way.
The strange thing about recalling all of this is that it fosters an understanding of myself which I never had before. Suddenly those weird quirks and fears which in hindsight controlled my life start making sense, allowing me to slowly deconstruct those behaviours. In a way it's making me more... normal, I guess. My feelings of terror when someone tried to touch me without my explicit permission, or even just get close. My distrust and hatred of sexuality. I can give much of it a place now, so that it no longer has to control me, changing me into a person who I am not.
Suffering childhood abuse is something that's sadly so common that there's widespread understanding and acceptance for the victims of such a tragedy. It almost feels like a rite of passage to remember and accept all the horrors one had to survive as a child to make it this far. I feel more part of humanity now as a result, oddly enough.
The sharp contrast here is with my intersex condition. Even though admitting to having such a condition and coming out for it in public, I do not feel that it is anything other than a hindrance to me in society. From medical obstruction and downright abuse, to the generally accepted notion that it is fine for intersex conditions to be eradicated. That they do not have a place, with all of us intersex people just being part of some freak show.
Even as my body suffers many curious as well as exceedingly painful symptoms as a result of my hermaphroditic condition, the response from doctors remains one of dismissal and refusal to even look at my case. Worse, many keep calling it a 'disorder', strengthening the notion that intersex is something that should be eradicated.
As was proposed by Dutch doctors on multiple occasions, I should just follow the transgender process and have the 'male' parts ripped out and 'female' parts sculpted from the remains. Never mind that my body has functioning ovaries producing female levels of hormones. Never mind that I have a monthly cycle. Never mind that during each menstruation I suffer greatly from symptoms akin to those of a massive inflammation in my lower abdomen.
Nobody cares.
Even as my childhood abuse trauma makes me feel closer to my fellow human beings, being intersex just keeps pushing me away. I do not even care to talk with other intersex people at this point, or look for help myself. The former just reminds me of my own hopeless situation and isolation, and the latter is simply futile. I won't ever get medical help for my intersex condition. Hasn't happened in over twelve years of actively seeking. Won't happen now.
I won't ever be human. I'm a disorder. Not a human being. Humanity has decided to eradicate Disorders of Sex Development by stripping them of the more humane term of 'intersex', making them feel less bad about cutting up intersex infants' genitals and denying desperately needed medical help to adult intersex people, or even brainwashing them into believe that they are in fact transgender.
What am I supposed to do? What can I possibly do? Just ignore the pains ripping through my abdomen, numbing my leg and causing agonising pains in my hips, without ever knowing what is happening inside my body? If I was a regular woman, they'd likely get away with that. But if they first tell me that I do not have any female reproductive organs, or just some, or actually still a few more than assumed, then I would at least expect some kind of explanation.
Instead I'm being stone-walled. I'm not supposed to exist. I get it.
That's after all what it means to be intersex. We're all just mistakes.
Maya
I think I do understand quite well now why I suddenly didn't allow anyone to touch or hug me any more back then, even though according to my mother I used to be very open and friendly to everyone. Suddenly I became quiet and withdrawn, not allowing anyone to get close to me in any form or fashion. Not even if that person was my own mother who I am pretty sure has never harmed or hurt me in any way.
The strange thing about recalling all of this is that it fosters an understanding of myself which I never had before. Suddenly those weird quirks and fears which in hindsight controlled my life start making sense, allowing me to slowly deconstruct those behaviours. In a way it's making me more... normal, I guess. My feelings of terror when someone tried to touch me without my explicit permission, or even just get close. My distrust and hatred of sexuality. I can give much of it a place now, so that it no longer has to control me, changing me into a person who I am not.
Suffering childhood abuse is something that's sadly so common that there's widespread understanding and acceptance for the victims of such a tragedy. It almost feels like a rite of passage to remember and accept all the horrors one had to survive as a child to make it this far. I feel more part of humanity now as a result, oddly enough.
The sharp contrast here is with my intersex condition. Even though admitting to having such a condition and coming out for it in public, I do not feel that it is anything other than a hindrance to me in society. From medical obstruction and downright abuse, to the generally accepted notion that it is fine for intersex conditions to be eradicated. That they do not have a place, with all of us intersex people just being part of some freak show.
Even as my body suffers many curious as well as exceedingly painful symptoms as a result of my hermaphroditic condition, the response from doctors remains one of dismissal and refusal to even look at my case. Worse, many keep calling it a 'disorder', strengthening the notion that intersex is something that should be eradicated.
As was proposed by Dutch doctors on multiple occasions, I should just follow the transgender process and have the 'male' parts ripped out and 'female' parts sculpted from the remains. Never mind that my body has functioning ovaries producing female levels of hormones. Never mind that I have a monthly cycle. Never mind that during each menstruation I suffer greatly from symptoms akin to those of a massive inflammation in my lower abdomen.
Nobody cares.
Even as my childhood abuse trauma makes me feel closer to my fellow human beings, being intersex just keeps pushing me away. I do not even care to talk with other intersex people at this point, or look for help myself. The former just reminds me of my own hopeless situation and isolation, and the latter is simply futile. I won't ever get medical help for my intersex condition. Hasn't happened in over twelve years of actively seeking. Won't happen now.
I won't ever be human. I'm a disorder. Not a human being. Humanity has decided to eradicate Disorders of Sex Development by stripping them of the more humane term of 'intersex', making them feel less bad about cutting up intersex infants' genitals and denying desperately needed medical help to adult intersex people, or even brainwashing them into believe that they are in fact transgender.
What am I supposed to do? What can I possibly do? Just ignore the pains ripping through my abdomen, numbing my leg and causing agonising pains in my hips, without ever knowing what is happening inside my body? If I was a regular woman, they'd likely get away with that. But if they first tell me that I do not have any female reproductive organs, or just some, or actually still a few more than assumed, then I would at least expect some kind of explanation.
Instead I'm being stone-walled. I'm not supposed to exist. I get it.
That's after all what it means to be intersex. We're all just mistakes.
Maya
Wednesday, 11 October 2017
Continuing towards my 20th MRI scan
This morning I made an appointment for what will be my 11th MRI scan so far. During yesterday's neurologist appointment the neurologist confirmed that I am indeed still experiencing the numbness and pain in my right leg. With the tests on the cerebrospinal fluid (CSF) - drawn from my body during a lumbar puncture a while ago - showing up all clear, the neurologist wanted to check for the next few items to investigate.
Specifically myelitis (infection/inflammation of the white or grey matter of the spinal cord) [1], and a spinal disc herniation [2]. Ergo another MRI is needed, this time of the lower part of the body, since the first scan just covered the part up to and including part of the chest area.
With the upper part of my body seemingly fine, even with the many white spots (lesions) seen in my brain, the focus now shifts to the rest of my spinal column and the nerves inside it. Things will be interested if neither of these two presumptions turn out to be true and there's neither a herniation, nor any indications of inflammation. What will the next step be, if any?
Based on the observation that the numbness in my right leg seems to be linked to my monthly cycle (discomfort and pain starting some time into the first week, worsening until tapering off over the next two weeks), it would be reasonable to presume that something is swelling up or expanding in mass so as to press on the sciatic nerve that innervates the leg.
Along with the pain, numbness and discomfort in my right leg and hip, I also experience pains and discomfort in the lower abdomen and genital area which would suggest that something is inflamed or at the very least overly sensitive and irritated. This to the point that toilet visits around this period can have me literally in tears afterwards from the pain due to the pressure on what feels like a severely painful vagina.
On Monday I contacted the endocrinologist who I last saw in 2016 and who was also responsible for getting me a bit of medical help and some answers about my body. She had mentioned something about a gynaecologist who might be able to help someone in my situation, which seems like the kind of person I could use right now. So far I haven't received a response yet, however.
It will be interesting to see how this big puzzle that is my body and its issues continues. Will it be the detour via the neurologist which ultimately will lead to the discovery of what is really going on inside my abdomen? At this point I at least really appreciate how this neurologist continues with this investigation until all reasonable causes have been looked at and dismissed. The first MRI scan surprised me, because I had expected to be dismissed for a symptom as vague as 'numbness in my leg'.
The lumbar puncture was a surprise, too, and I honestly had expected yesterday's appointment to be the last one. Just an 'everything looked fine in the test, nothing else we can do now.'. Instead the neurologist surprised me again by looking briefly whether a scan of the lower part of my spine had been made already and ordering a new MRI scan when he didn't.
My feelings about this 11th MRI scan and second scan for neurological purposes are a bit mixed. I don't really expect them to see anything, yet if they do it could be something bad, possibly requiring surgery. On the other hand, if they find the cause of this numbness and such, that would be nice.
There is also the consideration of just how far down the torso the scan will reach. If they'll go just for the spinal column, then the coccyx is roughly at the level of the bladder, which would miss a big section of the lower abdomen. If they do however scan the lower abdomen or a large section of it, the results could be even more interesting.
It's been a few years now since the last MRI scans were made of my abdomen. Before my body starts its true puberty back in 2015. With my body presumably having matured significantly inside as well, it might be that one can see distinct changes on an MRI scan, including the presence of a proper lining inside the vagina, which was previously mostly absent.
There I really hope on one hand that they cover that area, as even with imperfect MRI settings for soft tissues it could still show a lot. On the other hand, I would be a tad nervous after the scan to face the radiologist if they went low enough and I have to explain my intersex condition. Would be worth it, though.
With general medical help for my intersex condition and its complications still being practically absent, this specific investigation into just this numb leg might be my best bet to get some answers. I truly hope that this neurologist will continue to surprise me.
Some surprises are really quite pleasant :)
Maya
[1] https://en.wikipedia.org/wiki/Myelitis
[2] https://en.wikipedia.org/wiki/Spinal_disc_herniation
Specifically myelitis (infection/inflammation of the white or grey matter of the spinal cord) [1], and a spinal disc herniation [2]. Ergo another MRI is needed, this time of the lower part of the body, since the first scan just covered the part up to and including part of the chest area.
With the upper part of my body seemingly fine, even with the many white spots (lesions) seen in my brain, the focus now shifts to the rest of my spinal column and the nerves inside it. Things will be interested if neither of these two presumptions turn out to be true and there's neither a herniation, nor any indications of inflammation. What will the next step be, if any?
Based on the observation that the numbness in my right leg seems to be linked to my monthly cycle (discomfort and pain starting some time into the first week, worsening until tapering off over the next two weeks), it would be reasonable to presume that something is swelling up or expanding in mass so as to press on the sciatic nerve that innervates the leg.
Along with the pain, numbness and discomfort in my right leg and hip, I also experience pains and discomfort in the lower abdomen and genital area which would suggest that something is inflamed or at the very least overly sensitive and irritated. This to the point that toilet visits around this period can have me literally in tears afterwards from the pain due to the pressure on what feels like a severely painful vagina.
On Monday I contacted the endocrinologist who I last saw in 2016 and who was also responsible for getting me a bit of medical help and some answers about my body. She had mentioned something about a gynaecologist who might be able to help someone in my situation, which seems like the kind of person I could use right now. So far I haven't received a response yet, however.
It will be interesting to see how this big puzzle that is my body and its issues continues. Will it be the detour via the neurologist which ultimately will lead to the discovery of what is really going on inside my abdomen? At this point I at least really appreciate how this neurologist continues with this investigation until all reasonable causes have been looked at and dismissed. The first MRI scan surprised me, because I had expected to be dismissed for a symptom as vague as 'numbness in my leg'.
The lumbar puncture was a surprise, too, and I honestly had expected yesterday's appointment to be the last one. Just an 'everything looked fine in the test, nothing else we can do now.'. Instead the neurologist surprised me again by looking briefly whether a scan of the lower part of my spine had been made already and ordering a new MRI scan when he didn't.
My feelings about this 11th MRI scan and second scan for neurological purposes are a bit mixed. I don't really expect them to see anything, yet if they do it could be something bad, possibly requiring surgery. On the other hand, if they find the cause of this numbness and such, that would be nice.
There is also the consideration of just how far down the torso the scan will reach. If they'll go just for the spinal column, then the coccyx is roughly at the level of the bladder, which would miss a big section of the lower abdomen. If they do however scan the lower abdomen or a large section of it, the results could be even more interesting.
It's been a few years now since the last MRI scans were made of my abdomen. Before my body starts its true puberty back in 2015. With my body presumably having matured significantly inside as well, it might be that one can see distinct changes on an MRI scan, including the presence of a proper lining inside the vagina, which was previously mostly absent.
There I really hope on one hand that they cover that area, as even with imperfect MRI settings for soft tissues it could still show a lot. On the other hand, I would be a tad nervous after the scan to face the radiologist if they went low enough and I have to explain my intersex condition. Would be worth it, though.
With general medical help for my intersex condition and its complications still being practically absent, this specific investigation into just this numb leg might be my best bet to get some answers. I truly hope that this neurologist will continue to surprise me.
Some surprises are really quite pleasant :)
Maya
[1] https://en.wikipedia.org/wiki/Myelitis
[2] https://en.wikipedia.org/wiki/Spinal_disc_herniation
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