Sunday 31 January 2016

Could be womanhood, could be chronic pain

I remember thinking last week that my ovulation was possibly late, since I hadn't felt anything of the usual symptoms yet. The next day said symptoms started, however. Today it seems that I'm finally on the tail end of another fresh ovulation event which left me with a swollen, painful abdomen, sharp pain and sensitive skin on my abdomen's right side, hips and a numbness in my right leg. Yesterday I mostly spent the day feeling nauseous and sick, along with an annoying headache.

Today my abdomen feels a lot better, although I can still feel that my right leg is somewhat numb, with a very different feeling when I run a finger over my left or right leg. This should hopefully clear up over the next days, until the next ovulation event, in less than a month. Not a very cheerful prospect to look forward to, I feel.

Despite the endocrinologist telling me that she would call me on Friday to discuss the results so far after I emailed her on Wednesday, I received no phone call and thus I am still left in the dark on what exactly is going on. As I wrote to her, I feel quite certain that my natural estradiol level is high enough to be accounted as 'normal female level', presumably this 33 pmol level from the first test.

This would mean that I have at least the necessary ingredients to start a normal female cycle, depending on which organs and tissues I have in my abdomen. That I have such a cycle seems to be beyond doubt, after going through it for over two decades, with the symptoms gradually becoming more severe and painful. Now that I have experienced this cycle for two months without any artificial hormones including the pill, I am simply left wondering what is going on inside my abdomen.

In how far is what I am going through 'normal', as in the normal cycle involving ovarian tissue and the uterus? In how far is what I feel due to endometriosis, the result of ovarian, uterus and other tissue types getting scattered throughout my lower abdomen as a result of the chaotic development of my reproductive organs due to my intersex condition?

The symptom of my leg going numb would definitely seem to be more like an endometriosis symptom, while the painful hips and sides would be consistent with that of regular ovulation symptoms with intact female reproductive organs without endometriosis.

In short, I do not know. Just that even though I am now going through life without the assistance or influence of artificial hormones, I am now in near-constant pain and discomfort. I really do hope that medical help isn't long now.


Maya

Wednesday 27 January 2016

The terror of sound

As a child I disliked having a clock in my room. The constant ticking noise from its mechanism would make it hard for me to fall asleep until I eventually grew used to it. What helped there was that at that point in my life, sound wasn't something I needed to fear or which might mean something negative.

A few years ago I slept again in a room with a ticking clock for the first time since I was a teenager. It disturbed me and made it very hard for me to fall asleep. Removing the clock from the room was the easy solution there. At this point in my life sound is something which for a large part implies threats and something to fear.

I have become very aware of this ever since I moved into my current apartment. Hearing the upstairs neighbours walking around during the day makes me feel uncomfortable, even fearful. During the night it makes me feel terrified, wanting to curl up and cry for no discernible reason. Hearing them use their toilet is both humiliating and a reminder that there is no escape from these sounds while I live in this place.

The heating system's pipes in this building expand and contract a lot, especially during colder days, causing varying levels of metallic ticking noise. All of it gets to me in some way. Usually it makes me feel distracted, terrified, unable to focus on anything else as I try not to think of how much I want to flee, run away from the noise.

None of those thoughts and reactions seem rational or logical in any sense. Neither seem the suicidal thoughts which develop when I cannot shut out such noises by using earplugs or headphones with loud music. I will use earplugs to sleep even when it hurts so much to put them in, because it is preferable over hearing the ticking, walking, talking, urinating and heavens know what other noises I would have to endure otherwise.

At what point in my life I became this sensitive to noise I cannot say exactly. The initial sensitivity to sounds, motions and other sensory inputs I had as a child, I also share with my mother, so I think there might be a genetic base or similar. As for the increase in sensitivity, I think it is connected to the traumatic experiences I went through over the past eleven years, ranging from rape, sexual, physical and psychological abuse, to not having a real home for most of that time, but merely just another place to stay for a while.

Hearing someone walk around triggers the expectation that I did something wrong, or that something bad is going to happen to me, and I will need to defend myself. This is amplified by a general distrust in other humans, based on too many years of experiences.

Most of my dreams and recurring memories during the day revolve around suffering such abuse and uncertainty. It's hard to think of any situations involving humans which do not remind me of something terrible or unpleasant. Even situations not involving other human beings will all too often remind me of such things, or my thoughts will drift off to such a horrible memory without me having to steer it in any fashion.

My dream, or rather what I fervently wish for is to at least live in a place where I have no or at most very few of such disturbing sounds. Somewhere where I can fully relax in the knowledge that at no point will I hear such sounds and thus that this part of my brain that seems to be always alert for exactly such noises can finally shut down. So that I can finally feel safe and relaxed, no matter what else happens to me.

I fear that such a place would have to be as far away from people as possible. Apartments are clearly out. Row-houses might work, as might free-standing houses, but both of these are very hard options for a single person in Germany, unless one is prepared to move far away from the nearest city and usually one's job.

My desire is to no longer have to feel afraid, or even terrified at the sounds around me. Together with everything else that is going on in my life it just drains what little energy I have to get through the day and strongly stimulates depression and thoughts of despair and suicide.

Many people do not seem to understand any of the above, or reject any level of sympathy. I will just have to get used to it, they say. It's exactly like telling a depressed person to stop being depressed and a suicidal person to stop being suicidal. It doesn't make any bloody sense.

Everyone has different preferences and tolerances. Some went through experiences which others can not even imagine, yet which changed them forever. It's horrible to dismiss the suffering of another person, even if it is through something seemingly as innocent as mere words or even sounds.

Words I learned to deal with quite okay after years of being bullied, harassed and stalked, also because I was able to get away from those by going home or skipping abusive comments online. Living in a place which seems to be designed exactly to maximise one's suffering through the application of harmful and unpleasant sounds seems in comparison almost... inhumane.


Maya

Thursday 21 January 2016

When the hardest thing one can think of is to hang on to life

It's hard to say exactly why, or to point at a singular thing and say that 'if only that was different...', thus indicating the source of why one feels like being alive is the single most terrible thing one can think of at that time.

I cannot say such things either. Lots of things have happened or are happening which all at least serve to make me feel upset, depressed or like I'm the most hated person on this planet.

Earlier I had to return some money to the company which owns the place I rent, because they had miscalculated how much I had paid in advance. It's half a thousand Euros I now have less, due to said miscalculation. Fair is fair, but it upset me because initially I didn't know whether they really had made a mistake, or that they suddenly want me to pay the full amount for this place again, despite countless things being broken.

Such as hearing everything from the neighbours, including their toilet activities and when they get into or out of bed, also the heating system making so much noise that I cannot use the living room, and of course the constant access to fresh air due to there literally being holes in the walls to the outside. Then there are the water pipes in my apartment busily rusting away, leading to fun situations like this one yesterday:



Living in a place that's poorly insulated, noisy, sorely behind on maintenance and still expensive wouldn't be healthy for anyone's mood, yet it's not just that. Even if through some miracle I was able to move into a great place, I still wouldn't be happy. Happier, of course, and a lot further away from the edge of giving up on life altogether, but still not in the green zone.

With week after week passing without hearing anything from the endocrinologist after the last appointment and blood samples that were taken, while I'm suffering through one episode of different physical pain after another brings back the dark expectations of the past. The rejection of reality and the insistence that everything I feel, not to mention what I see in the mirror, are all just part of my own delusions.

For weeks now my lower abdomen hurt, more so when I lightly press on it. I have also had the usual range of painful symptoms from ovulating (right side hurting like hell, right leg going numb), which subside into more mild cramps until it's quiet for a little while before worse cramps start and sitting, going to the toilet and such become painful to an agonising experience. From reading up on things it seems that estradiol gel may actually protect against depression during and after ovulation. It might just be another thing alongside the pain which gets me down so much.

In the end nothing about my life is easy, aside from probably my day job. Even if something might be positive, it'll be coloured darkly by past experiences, making that I cannot look forward or feel joy at anything any more. Even if many seem to disagree with this assessment of my life, what matters to me is my own assessment, not what those who haven't and aren't living this life of mine may think of it.

Really, what is there to look forward to? A better place to live in? Unlikely to happen with this housing market. A medical solution to my intersex condition and associated symptoms? Over a decade of experiences say it won't happen and keeping up hope is the definition of insanity. A happy life with family and friends? Starting my own family? The facts just make me seem like a complete misanthrope there.

There's just emptiness, day after day, just filled with the despair as one realises that all that keeps one alive is money and a shortage of people who demand too much from you. It makes one wonder whether things like happiness, love, joy and freedom are nothing but terrible lies none of us can truly accept for just what they are.

Who cares about another dawn when all it brings is the same painful repetition?


Maya

Tuesday 12 January 2016

One month off HRT and so much pain

Today it's been one month and a couple of days since I quit taking estradiol supplements as well as the anti-conception pill. The endocrinologist warned me at the beginning of this period that I might experience the symptoms of a woman going through menopause. The assumption being that my body produces very little estradiol by itself.

At this point I can state with certainty that that assumption has been proven false beyond any shade of doubt. I went through the same range of ovulation symptoms during the last week of last month, and one week later I began to experience the  usual abdominal cramps, culminating around the tenth of the month. Today was the worst day of all so far in this month's cycle.

While at work today I nearly experienced a fainting spell, with me momentarily feeling dizzy and nearly blacking out. Twice today that I had to go to the toilet to defecate it felt as if something got torn apart down there, which I assume is the vagina's lining which has become irritated and possibly inflamed, with pressure from the rectum right next to it causing the incredible pain. As usual I'm also experiencing diarrhoea again, apparently due to some intestinal disruptions during my menstrual cycle.

Through this pain I have also recalled many periods in my past as a teenager and before I started on hormone replacement therapy that I had such pains as well, albeit less severe. What seems to be different this time is that something around the beginning of 2015 seems to have triggered the ovarian tissue, which I apparently possess, to start producing significantly more estradiol.

Reading up on estradiol more, it is well-known that an overdose of estradiol in one's body can cause linea nigra to appear, as well as kick FSH/LH levels into overdrive, since estradiol has a positive feedback loop with FSH/LH, as part of the hypothalamic-pituitary events [1]. This seems to explain all of the weird things of the first blood test's results.

The one confirmation I am waiting for is with the second blood test, which I assume to show even higher estradiol levels than the first one, despite me being off HRT, due to it being natural estradiol levels in both cases and with the latter test being performed from blood drawn on the 29th, which should have still been during the ovulation period with the expected higher estradiol level.

It all fits very well, though. Obviously I have something which pretty much has to be a normal menstruation cycle, regardless of whether I am on HRT or not. The estradiol overdose which would occur by taking estradiol on top of the natural level I seem to possess would cause the migraines, the linea nigra and a number of other symptoms. Depending on confirmation from the second test's results, it could conclude that I'm quite a normal woman in that regard at least.

Hopefully reconstructive surgery can reconstruct the vagina so that I can menstruate normally, evacuating the produced fluids and thus avoid this incredibly painful last stage of my menstruation. How everything else is configured internally with respect to female reproductive organs beyond the vagina I do not know. I assume the ovarian tissue is just that, a relatively unformed mass of tissue, with no discernible uterus to speak off either. Apparently it does function well enough that fluids seem to end up in the vagina at least.

On the positive side, I do not seem to have any need for HRT any more, and that I am slowly beginning to feel more and more like a normal woman. On the negative side, even with proper medical help at this stage it's still going to be a highly painful time. I really hope that a lot of progress can be made on this over the coming months.


Maya


[1] https://en.wikipedia.org/wiki/Estradiol#Female_reproduction

Monday 11 January 2016

Dreams to highlight all that is wrong

For the past months I have had lots of dreams, usually without me being able to remember much more than just a few fragments or a sensation when I wake up. Those I do remember are vivid and stay with me for a while, such as the dream I had last night. As seems to be common, it was yet another nightmare.

In this particular nightmare I was being haunted and finally chased by these two men who somehow got me to sign some kind arrest warrant or confession document, which I then realised and tried to desperately escape. This all in the setting of the house where I grew up. By the time I woke up I was drenched in sweat and feeling rather uncomfortable.

After waking up like that, my thoughts continued pretty straight into a similar train of thought which has been playing in my mind over the past weeks or months, namely the temptation of not giving in to the humiliation of financial punishment by the Dutch state and instead continuing my decade-long resistance by just having them imprison me for a number of months.

It may sound stupid, but just thinking about paying up after more than four years and with it basically confessing that I was guilty of purposefully destroying those works of art which were on display at that doctor's office, even after years of physical and psychological torture, a suicide attempt, being diagnosed with PTSD and DID, and suffering a blackout while at said office. Things which the judges say they agree with and officially I wasn't punished. I just have to pay a large sum of money, thereby admitting my guilt and the wilful destruction of said items. It's a disgusting, back-handed way of hurting me even more through a so-called 'justice system'.

When I put up that crowdfunding campaign in order to allow others to pitch in and share the financial and with it the psychological burden, I knew I was setting myself up for judgement by the general public as well. Now that after weeks have passed and a handful of people have donated I do not feel better about things. Sure, it is great that a large sum has been donated, and I do draw comfort and strength from this fact. Those who wanted to donate, but lack the means have shared the campaign and provided kind words.

Yet the fact remains that I feel that an even larger group of people have chosen to either ignore said campaign because they do not care either way, or worse, feel that I was at fault and wilfully chose to vandalise said items, despite all of the circumstances and background. The latter is perhaps the worst feeling of all. Whether it's true or not I do not know, but it is one of the reasons which underlie this urge to just submit myself to even worse punishment than just to surrender a large part of my savings for no good reason aside from supporting a corrupt system and hateful people who do not care in the slightest about those who are unfortunate enough to be 'different'.

That I fled the Netherlands isn't just because of some disagreements and/or financial reasons. This last lawsuit is the third one. The first two were started by me, to sue the doctors at the first, Amsterdam hospital who mistreated my intersex case, and to address the discriminating behaviour of my insurance company towards intersex people with myself in particular. Both of those two cases were rejected or manipulated such that I stood no chance of winning. I lost. Intersex people in the Netherlands lost. Human rights in the Netherlands got dealt a big setback.

And nobody cared.

The feeling that all of this that I do to fight for my own rights and of everyone like me who isn't 'standard' and doesn't fit into these neat little boxes society likes to puzzle together, that all of this is for naught troubles me a lot. Why is it that we have the same ridiculous idiocy as with homosexuality and transsexuality, where one seeks to 'fix' something which isn't a problem? Why is the existence and acceptance of something that is perfectly natural and not harmful in the slightest treated as something shameful, to be 'fixed' with surgery and the medical files hidden or destroyed?

I spend a fair bit of my time on interviews on intersex with a wide variety of people, from journalists to students and even authors who wish to include intersex in an upcoming book. My website and blog with a wide variety of information on intersex is at the top of search results related to intersex. I like to think that what I do matters.

Maybe that's why I also feel so strongly about the lukewarm response I have received over the past four years since the event happened. I only had to suffer severe PTSD, DID, get beaten up by the Dutch police, suffer through one hateful, accusing court case after another, and feel utterly alone throughout the whole ordeal.

People have often said to me that they admire me for being such a strong person, but I am not. I already gave in once and tried to escape from this life. Hit the 'abort' button. The thought of ceasing my struggle, of just surrendering to the inevitability of doctors, psychologists, politicians and even regular people hating me, wanting people like me to cease existing through whatever means necessary. It's a tempting thought, indeed.

What has defined my life over the past decades is not wanting to find answers about my body. It has been about being regarded as a freak, as a disorder. As something that is wrong and cannot or should not be. As a result I have pretty much always been unhappy and alone. Never understanding, never feeling understood or cared for. Even as a child and teenager this feeling was ever-present. I am not alive today because I wish to be a human, or part of human society. I care nothing for either, because neither mean anything positive to me.

All that I receive is the judgement from others. I cannot simply be or exist. I cannot live my life. I cannot be not 'different'. I cannot ignore the reality of my situation. I cannot change things to simply be possible.

There is only the heaviness of the burden of being alive and the numbing pain of dissociation at the realisation of the preceding.

At this point in time I await this dreaded moment where I will have to pay up or face jail time. I also await further medical results which can make my life either very easy, or very difficult, or just add to the string of utter disappointments that has been the sum of my experiences with medical professionals so far. Suffice it to say that the resulting stress levels are high. Far too high to be healthy.

Yet I cannot do anything but wait. Just push it away. Just wait. Ignore it. Maybe it will be fine. Please wait. There's nothing else to be done.

Those moments when you realise that you would be so much happier trading one's body for an artificial one, because there is nothing to be gained by trying to live with a body which doesn't make one happy and will die and rot away before long anyway. Utter disappointment.


Maya

Friday 8 January 2016

Dreaming an imaginary reality into existence

Reality is an interesting word. With it we mean to say that something is real and tangible, meaning that it has real, physical effects upon the world around us. Yet not all of reality is real. Large parts of it are fully imaginary, existing only within the minds of those who are alive.

Imagine yourself and all of your goals for this life. What did you want to become when you were a child, then a teenager, then when you graduated university? How did life's hardships change you? How did you learn about all of those options in life, and how did all of those bad things happen to you?

The simple answer is: people.

More elaborately put, despite having no tangible form or proof of their existence beyond a temporary series of bursts of neuronal activity within a person's brain, thoughts are something which aren't real, yet can make things become reality.

That thoughts aren't real in the sense that they have no definite existence - let alone any reason or explanation for existing beyond being a curious characteristic of certain collections of specialised cells - should be fairly obvious. Thoughts aren't matter. They aren't energy. Matter and energy are what allows them to exist and gives them shape, but beyond that they are as immaterial as anything can be.

Thoughts are essentially a reality beyond reality. It is very reminiscent of an aspect of Hinduism, where a force - Maya - exists which allows the souls of people to dream into being their own section of reality, thus forming the reality of the world we see around us.

In such a world everyone's interpretation of reality would thus also affect other dreamers, transferring onto them impressions and thoughts of alternate realities. This is something we see all around us. From the moment we are born, we are being assaulted with such impressions, suggestions and, at times, more forceful coercion. Sometimes we are even forced to partake in another person's reality, which may traumatically alter our own reality.

A theory exists which describes this transferring of such impressions between individuals as the transferring of 'memes', basically ideas or suggestions which may or may not take hold in the receiving ('infected') person's mind. This theory closely mirrors viral theory, in that the effectiveness of a meme is directly related to how infectious it is, i.e. how many individuals it can infect and how long it can persist in a population.

Examples of successful meme viruses mostly pertain to themes such as 'spirituality' and 'greed', both of which have an easy time due to these being fundamental, neurological weaknesses of the human mind. Upon a successful meme infection, the subject may recover after some time, or not at all. The practice of brainwashing is an example of the forceful application of memes until the natural resistance of the victim breaks down and infection can occur.

All of this comes down to the transient nature of reality once one moves beyond the basics of physical matter and energy. In the past I have referred to the human mind as being 'its own reality', and I think that this statement is more true than I had assumed. Within humanity, with so many minds interacting with each other through primitive means, each respective interpretation and formation of reality meshes with those of the people around it.

Within the philosophy of Buddhism, an individual being is not perceived as a static, unchanging entity, but as an ever-changing, ever-shifting entity, shedding every part of itself over time. Change is what will drive an entity to perfection, until the moment of the full realisation of reality, known as enlightenment.

Yet change is also full of danger. With each individual, each entity out there subject to constant meme infection which can drive it to harm itself as well as others, it is reminiscent of basic evolutionary survival theory, as if observing generations of bacteria trying to survive in a hostile environment.

To be successful one has to learn to separate memes from reality. Fact from fiction. Those who cannot do so will fall into the same traps and meet either a violent or exceedingly dull end. Those who do survive will find that it is still a long way to enlightenment, for the difference between dreaming reality and living reality is larger than the universe itself.


Maya

Saturday 2 January 2016

Got to prioritise one's traumas

With the agonising and feeling terrible about doctors not wanting to help me with my intersex condition suddenly not taking up 99% of my thoughts any more since a few days now, it seems that other traumas are more than happy to take up the slack, judging by the recent dreams, thoughts and recalled events I had to wade through.

The one I found myself unexpectedly dealing with today was due to an incident last night during the crossing into the new year. I was outside, watching the fireworks with a group of people, some of whom I knew, when one of the guys unknown to me decided to get... touchy at some point. He'd stand behind me and... touch me. Both times I'd abruptly turn and walk away, pushing back the second time as well.

To be honest I still feel terribly upset at the mere thought of this, even I feel I should just be able to shake it off, especially since nothing much happened. Yet something about having a guy standing behind me like that and touching me without my permission triggers a lot of really bad and deeply hidden memories. Memories which are accompanied by a lot of anger.

It's been nearly ten years now since I got raped by a guy. After that experience I have long tried to find a way to deal with sexuality and related topics in a neutral and unbiased fashion, but it has long since become clear to me that this is not going to happen. Even though I got a lot of help from someone who helped me deal with my rape trauma using her own experiences, which at least allows me to not feel like it's all my fault, it's still not something that is even remotely easy to deal with.

Anger. That's pretty much the central emotion here. The anger of having been violated, of having been taken advantage of. Of having one's body... used like a common object. I am fairly certain that the inarticulate rage I feel at seeing heterosexual couples is related to this as well, linked into the general hatred I seem to have developed against anything 'male'.

It's not just the fact of having been raped and otherwise been taken advantage of over the past years, but also the recollection of having been physically violated by one male doctor after another, as they prodded and poked every part of my naked body. The shame and embarrassment of going through that experience over and over again, more times than I care to remember. The loathing for myself that I did not find a different way and just submitted to these physical examinations.

The only positive thing I can say about dealing with these traumatic recollections is that it doesn't make me feel depressed or suicidal in the slightest, like what the 'no intersex help' trauma does with me. These other traumas are merely about inarticulate rage, anger and boundless hatred. It's still something which I will have to learn to deal with and process the associated events in some fashion, but at least it just makes me want to curl up and cry a lot so that I'll feel slightly better afterwards.

In some way it almost makes me feel like I am more... human again when I feel like this. With the intersex issue settled for now, I actually have a human body to which these other traumas can apply. It's practically a joyful thing to me that I can feel this way again, weird as it may seem. Maybe it's just the joy at being able to feel real emotions again, instead of the numbing pain of dissociation.


Maya