Wednesday, 31 July 2013

The Slow, Painful Slide Back Into Dissociation

Hope is like a fly, bumping against the same window as maybe this time it will turn into a passage. Hope is like a death row convict, who knows that he is innocent but - all appeals exhausted - lies strapped down, merely awaiting the IV needle. The governor's last-minute phone call won't ever come, but there's always the possibility. There is always that little voice, that instinct, that feeling, which keeps urging you forward because maybe it will be different this time. Maybe the bullets won't mow down me like they just turned my mate into mincemeat. Keep hoping.

Opposing hope is realism. Knowing when to relent, when hope becomes obsession and insanity.  One can not tell exactly when or why this realization will hit, but it will be there one day. At that point you can only abandon hope to save yourself. So too for me. Growing up in a dissociated state with an increasing separation between mind and realization of body for over fifteen years, I was excited to learn that there was a whole world out there filled with feelings, sensations, empathy and joy. As gradually my senses of smell, hearing and others recovered I began to experience things I hadn't experienced since I was only a few years old. Now I have to abandon all of that again.

I slipped into dissociation as a child because I didn't understand my environment due to my giftedness, nor did I understand my body due to the intersex condition. With the onset of puberty all hope was lost until about a decade later when I discovered what was going on. Yet after nearly nine years of struggling through a lack of help and understanding I have to retreat, wounded and bleeding, as I realize that medical and psychological help isn't forthcoming and never will be.

With the final rejection by a Dutch surgeon earlier this month I began to feel it again: the all too familiar sensation of dissociation. Separating the matters of body and mind. Cutting and sawing at the threads connecting both. Any thought involving body is now rejected and discarded. With it most of feelings and emotions as well. During high school it was all too familiar to me, to have the emotional grasp of a 6-year old, having to compensate at every point in social interactions with my intellect. It was the only way I could do it.

The coming weeks and months I'll keep losing more and more of what I gained. Sexuality, relationships, friendships, the sensation of feeling like a grown, adult woman, the drive to care about where I am living and staying, my sense of smell and hearing, empathy... it's all fading already. It's not that I do this on purpose. It just happens. Just like how I got PTSD and DID: they're just ways the human mind protects itself against things it can not deal with.

The only positive thing I can say about this process is that it frees up the intellectual side of my brain for more serious purposes. My performance and productivity are increasing.

At what horrible cost, though... it shouldn't have been like this. This tale shouldn't have ended like this.

I guess there truly aren't happy endings.


Maya

Sunday, 28 July 2013

Menstrual Cycle And Possible Death Sentence

Many years ago, before the full onset of puberty, I had this horrible abdominal cramp which necessitated me to be carried to the local doctor. The pain had lasted for a while by then, rendering me unable to walk or move much. However, by the time I was at the doctor's office the pain had subsided and it was dismissed as anything serious with no examinations performed. The years after that I would have those severe abdominal pains on a semi-regular basis until at some point into puberty I didn't recall them being that noticeable any more.

Of my physical condition before 2005 I do not recall much, as I was disjointed from my body to the point where I lost much of my sense of smell and hearing due to severe dissociation. What I do recall of the years since then is the frequent sensation of discomfort in my abdomen. The last few years especially, with an onset of burning pain in my lower abdomen, focused primarily on the area between the torso and the beginning of the legs as well in the nether regions, around the location of the vagina. The skin in that area will be sore and painful to the touch. After a few days this will subside again only to pop up later. Whether this occurs on a monthly basis I'm not sure.

There's also the regular bouts of nausea mostly in the morning but also suddenly during the day which seem to be linked to those periods of pain. Add to that a craving for different foods (mostly sweets and snacks) and a strong sense of irritation and being on the verge of bursting out in tears. Yesterday I nearly lost it when a chocolate bar wrapper refused to relinquish its contents. Despite sleeping well I'm tired during the day. I'm quite certain that in a few days this will have passed again.

Everything put together, there is the definite possibility that I have ovarian tissue and with it something resembling a menstrual cycle. The undeveloped testicles which were removed weren't ovatestes as is common with hermaphrodites. No research has been performed on variations in my hormonal levels, nor on the state or functionality of my closed-off vagina. With Dutch physicians outright denying that I am a hermaphrodite or even intersex, that's just not going to happen either.

It does put me into a pickle, however. First of all I feel bitter about not having been taken seriously as a child, secondly I feel sad and filled with despair as I realize that a) I know I'm unlikely to ever find a physician caring enough to perform the necessary research and b) I am quite aware of the risks of having a menstrual cycle if any tissue involved in creating the womb's lining is present. This can lead to Toxic Shock Syndrome (TSS) if the right (wrong) bacteria find their way into it, much like with those deaths from tampons a long time ago.

On one hand I shouldn't even think about these things, just suffer through these PMS-like symptoms every month as I'm not going to get medical help. On the other hand it turns my life into a game of Russian Roulette. Every time I feel a sudden stab of pain in my abdomen or nether regions which has me buckling over in pain it leaves me wondering how serious it is.

Feeling like crying in utter frustration now...


Maya

Thursday, 25 July 2013

End Of The Line: Giving Up On Any Further Medical Help

It's been nearly nine years, many dozens of physicians and surgeons around the world later, and time to make up the final score.

I'm probably a hermaphrodite, but some countries like the Netherlands are still denying this. In Germany diagnostics are no problem, but a surgeon for the final restorative surgery can not be found after all. I'm getting no contact any more with the Hamburg clinic where I had my surgery in 2011. For about a year I have tried to get my surgery report from there now, but without anything but a few empty promises from the surgeon. I don't think I'll ever get it.

So, that's it. I now have to learn to live with a body which can be described as 'female, but without genitals'. I can forget about sexuality or intimacy. The traumas I had to suffer to get this far will also go untreated, as dozens of psychologists and psychiatrists later I only found one who acknowledges what has happened to me, but who is incapable of treating me for it. For the long term I have no idea what the medical complications are of having a closed-off vagina and possibly other hidden issues such as ovarian tissue. I have no idea how my PTSD will develop.

Yet the medical and psychological specialists seem to think that I'm ready to head off into the world like this, without any further care or treatment.

All I can do is try, right?


Maya

Monday, 22 July 2013

Losing Sight Of Myself And Motivation

Today I bought new sandals. Really nice ones made by a Spanish brand with a minor heel and an overall very elegant design. With the current temperatures around 30 degrees Celsius during the day it's nice to feel cool and look fancy while doing so. This time I wisened up and got EU size 40 as for some reason I used to buy things size 41 which always turned out to be a tad too big. Now I'm all happy with these new sandals.

Looking at the sandals again, though, it occurred to me that I bought those because of my struggle to find myself. It's only because I figured out that I have a female physique and with it female sizes that I'm dressed the way I am now. Today I'm wearing jeans shorts and a black top with a bit of black lace around the top part. It really brings out my figure and when looking at myself in the mirror I have to admit it looks good. The looks I get in public are telling too, even if they make me feel uncomfortable more than anything else.

Yet what does it truly mean to me? I do express myself through the way I dress, just like everybody else does. I go for a rather basic style, with mostly primary colours and generally no prints, pre-destroyed clothes or accessories. I do like skin-hugging clothes, though, and dislike loose clothes. This seems to mean that I'm extroverted, but not seeking attention. I'm present, but would prefer to draw attention to me by my personality rather than my looks. I'm okay with that.

With all that I guess everything that can be said about my body and everything around it which doesn't touch upon traumas has been said. This year seems to have been the one which broke the proverbial camel's back, pushing me firmly away from sexuality, relationships and my intersex body. It also pushed me into the big wild yonder, as I am forced to grudgingly accept that there is absolutely no way I could conceivably stay in the Netherlands. Much like my body is traumas and traumas are my body, so the Netherlands in many ways stands for everything which has gone wrong the past almost nine years.

Amsterdam to me means the VUmc, AMC and OLVG hospitals and the terrors and humiliations I had to suffer there. Same for Utrecht, Rotterdam, Groningen and Breda. The Hague with its politicians means the gross violation of human rights to me. The public transport systems, other places... everything seems to hold a piece of the trauma which is just called 'the Netherlands'. If I stay in this country I'll forever be surrounded by the reminders, causes and ruins of my traumas. I have to escape. Break free. Even if it hurts and forces me to leave part of myself in this country.

The Netherlands is the place where I was born and grew up. I learned its language and customs from a young age. I was a good student at school, breezing through everything and generally considered exceedingly polite, intelligent and well-spoken. Somehow, somewhere along the way this country changed, like how a gentle, caring husband changes into a violent, gambling drunk. This made the other transformation I had to deal with even harder, namely that of my psyche and self-image. In a way what happened to this country and its treatment of me was the inverse of me learning the truth about my body and the joy at learning the truth, hard as it was at times.

So now I'm left with again the rejection of free will and choice. There is no future, no existence for me in the Netherlands. For all eternity the physicians, psychologists and politicians will keep denying that I'm intersex and refuse to provide me with the medical and psychological care I require. At this point there is nothing else for me to concern myself with but pure survival. Staying in this country will mean having to hide in crevices like some small critter, terrified of the next predator to swoop or run past. It would be not something compatible with a humane existence. Thus I have to move, which won't be easy either.

Germany seems to be the obvious country for me to move to. I work for a German company after all, the German physicians have been very helpful and honest and in socio-economic perspectives Germany is a very attractive choice as well. It won't be easy of course, because I'm not familiar with all systems in Germany and do not speak very good German yet. I have given myself a few months to work on the latter through reading books and the like. Unless after the public hearing against the VUmc in September something changes, I will finalize my arrangements to move myself and my company to Germany. Just a matter of which area and city then.

It is my hope that in Germany I can finally find myself again. At this point I'm feeling so worn out and emotionally numb that I barely respond to triggers any more. It's nice because it allows me to focus on my work more, but also disturbing because I know that I'll have to pay the bill for it soon enough.

All I hope for at this point is to find myself in a place where I do not have to fight for my life and existence any more, but where I can be an actual human being. Maybe even the woman I keep dreaming of, with the final restorative surgery finished and never having to worry about MRI scans, physical examinations and hospitals again. As usual hope is dangerous for me as it triggers depressing, suicidal thoughts directly opposing any hopeful thought.

It's easy for me to know when I'm happy and in the right place. That will be when I do no longer feel this pain inside and the thought of ending my life doesn't fill me with an intense longing any more. If only...


Maya

Thursday, 18 July 2013

Negating The Dissociation And (In)justice

Walking on the sunny streets yesterday I found myself contemplating an interesting thought: that this body I seem to be becoming more and more aware of via the sensory input my brain receives, is that of an attractive human female. It's not a thought I seem to have entertained in any significant amount of detail in the past, but which seems to have pushed itself to the foreground due to recent events. Combined with this realisation is the bitter realisation accompanying it that it's basically more or less for show, as I do not have any currently usable female genitals.

The former realisation is both disturbing and pleasant, the second the first few steps on a dark path leading to my inevitable suicide. Throughout it all it pervades me with the uncomfortable truth about just how far-reaching the dissociation between my mind and body has become. Of having essentially nothing more than a vague concept of what a 'body' is or may mean. It explains why my search for the truth about my body the past eight and a half years was crucial to my survival, and why the treatment by Dutch physicians, psychologists and politicians caused me such an incredible amount of grief. I wasn't obsessively trying to prove something of which I knew I had to be right, I was fighting for my very survival and existence.

This all leads to the current lawsuit against me for something which happened over two and a half years ago now [1], at what had to close to the height of the madness I was going through. Just having botched a suicide attempt and feeling horrible about still being alive, I nevertheless managed to prop myself up enough to decide to give things another try. This involved getting a referral to a urologist at a nearby hospital. The first GP office in the city of Rijssen had already rejected me as a patient due to being intersex, and the one I found myself at felt pretty uneasy about it as well. This may have been the reason why they were so hesitant about not providing one.

Promising to provide the referral, but not calling me when they said they would and not having it ready when they had promised led to a situation in which then over six years of humiliation, frustration and anger combined in multiple stress-related disorders including PTSD finally exploded. I remember little of the event, beyond me clutching a bloody, injured hand while surrounded by blood and getting violently bashed into walls, street tiles and car doors by what must have been the police, as well as the unbearable pain of the hand cuffs as they began the horrible damage of the compression nerve damage which tortures me up till today.

Only afterwards did I hear that I had caused damage to a number of mostly glass items. All of it had apparently been enough reason for the police to hold me overnight in a constantly lit cell as my traumas began to further eat away at me. I don't remember much from those horrific hours beyond me tearing an entire roll of toilet paper to really tiny bits in an attempt to stay somewhat sane. Leaving me alone in that cell with no idea of when I would be let out again was worse than a death sentence. I would gladly have embraced death if I had the choice at that point. I still can not write or speak about this event without bursting out in tears.

Yesterday I went to an appointment with my new lawyer for this case after the previous lawyer I had didn't seem to have any interest in the case to the point of not knowing any details moments before the first hearing. My new lawyer, however, is quite different. I have probably mentioned him before, also that I met him before early last year at a talk show and that even back then he was quite interested in my story. It bears no surprise that after talking through things yesterday we both agreed that the only proper outcome would be a dismissal of the case based upon the fact that what happened could not be attributed to me due to all the preceding events.

In early 2007 at the VUmc gender team I lost my temper for the first time, when I threw my own bag on the floor and had to leave the room after yet another reversal and downtalk by a psychologist. That was after about two years of dealing with the situation. Fast forward four more years and not only did I have the uncaring attitude of the VUmc gender team to deal with, I also had two German reports proclaiming me to be intersex and yet finding myself unable to get even the slightest admission from Dutch physicians that I was indeed intersex. Looking back I should have quit dealing with Dutch physicians at that point, but what makes sense afterwards isn't obvious when you're in the midst of the madness.

Even now, eight and a half years after I first started looking for medical help with my issue, and despite scoring some minor successes I can not with any words describe how much sadness, bitterness, rage, frustration, anger and other intense emotions I feel just thinking about how I was treated and how I am still being treated. I now know that I have to leave the Netherlands and never return as it's the most unhealthy place for me to be. Yet two and a half years ago I wasn't that far yet. By taking that overdose of sleeping pills I had already given up on that what should be most precious to oneself: one's own body and with it life and existence itself. I had absolutely nothing to lose any more.

Now, I have to prove to the judge that what happened at the GP's office can not be considered to be my responsibility. Yes, I did do it, but not consciously and only as a result of many years of what can only be described as intense psychological and physical torture, resulting in PTSD and DID, conditions I informed and warned the GP's office about beforehand as was my responsibility. That they then decided not to act upon it and have no consideration for my condition is wholy their choice. That they then also decided to breach the doctor-patient confidentiality by sharing my address and other personal data with the artist whose works also had been damaged, resulting in me getting a letter from said artist demanding a large sum of money, this too doesn't display a leaning towards being responsible and mature. Worse, such a breach is quite illegal.

The defence will therefore hinge mostly on my back story and diagnosis with PTSD and DID as the existing situation and my clear warnings as me being the responsible party. The treatment by the GP's office in addition to the previous rejection at the other GP's office in the same building would be an agitating factor with the difficulty in the last week before the event to get the referral ready as the final trigger. It should paint a picture of me as the obvious victim in a much larger game where I am pretty much powerless to control the flow. I feel pretty confident about the case, as does my lawyer.

I simply have to be left off the hook in such a complete manner for there to be justice in this case. Anything else would basically mean that losing yourself after years of torture is meaningless and any back story deemed irrelevant. I didn't mean to do anyone harm, or cause any damage. My completely spotless criminal record is evidence of this. I'm about the dullest person you can encounter when it comes to obeying the law. For me to be pushed so far that I'd damage someone else's property takes a lot. In this case about six years of near-constant agony for me to finally break. If anything this should be considered commendable.


Maya


[1] http://mayaposch.blogspot.nl/2011/05/taking-nightmare-notch-further.html

Saturday, 13 July 2013

Realizing The Hidden Torment

Even before I got the rejection from the last surgeon I found myself wondering how I would respond emotionally to such an event. I know that rationally I can not get terribly upset about it, even if I do find myself shocked by the casual attitude with which physicians - not just in the Netherlands - treat their patients. I was however worried that I would collapse emotionally at any further bad news. That's why I was surprised when I didn't notice much from my emotional side the day I got that feared phone call. I felt clear-headed without much emotional interference. I did fear that the backlash would come later, as I wrote in my previous post.

Yesterday things were pretty calm for me as well. I was quite productive, the work for my German employer went well and I felt okay. Only after dinner did I begin to feel less great. I began to feel terribly sad and upset, inching towards a depression until around 9 PM I figured it was time I got some sleep and just went to bed. This morning things felt alright again. I went off to be very productive on this one company project, completing a large section of it. Around noon I began to feel strangely tired, though, and decided to take a nap. That's when things went south.

Once in bed, I read a bit in my current book, then tried to sleep. At first I drifted off alright, maybe even slept a bit, but gradually I became aware of an increase in dark thoughts. Trying to determine the source of them, I thought I could feel hands and... other things touching and prodding me with voices proclaiming things which cut deep into my soul. Terrified, memories and reality blended together and I could only curl up helplessly while I cried in shame and humiliation. How could I have allowed them to have done such horrible things to me? Why have they done such horrible things to me?

When I say 'they', I am referring to a large group of people. The dozens of medical specialists who have performed examination after examination on my naked body, doing things with their fingers and instruments I do not care to recall but which eagerly feature in my nightmares. The acquaintance who introduced me to sexuality years ago by raping me. The many others who used my body for their own carnal pleasures.

My recent experiences with this last surgeon must have made those memories surface so brilliantly that I can not conceivably ignore them any more. It does lead to a good understand at least to me of why I'm absolutely done with any further medical examinations, relationships and sexuality. For years I have tried to ignore the traumas and mental injuries I was inflicting upon myself by pushing myself past any reasonable objections, allowing anyone to just use my body, from rapists to physicians alike.

My body is the trauma. The trauma is my body. I can not separate them. Few can even understand how this would feel, or how to provide help. Referring me to yet another physician shows a fundamental lack of understanding. I must concede that asking for help isn't going to work, that any offered help is only the beginning of additional trauma.

Not that I'm completely giving up on getting medical help, but I do know much better where my limits are now. No touching of my body. No undressing. No more examinations. No more random consults. Only hard guarantees. If this does mean that I'll never get medical help, so be it. After literally dozens of physicians abusing me in such a fashion I simply have to refuse. It's telling that the memories of those examinations and me getting raped blend in so seamlessly. The similarities are just too striking. It also offers me an insight in the mind of a cousin of mine who committed suicide after getting raped by family for years on end as a young child, with the justice system and her environment then completely abandoning her. I do not want to follow into her footsteps, but life seems to be pushing me down the same path.

I'm tired of being raped, physically and emotionally. This is my body. Here is the line. Only cross if you have the proper respect.

That's how it should be, at least...


Maya

Thursday, 11 July 2013

Call From Surgeon; Back To Square One

I just got the long-expected phone call from the surgeon regarding how he wants to proceed with me. Short version is that he doesn't. His exact reason was unclear, but seemed to hinge on that he was too uncertain about what he'd find there. This of course no doubt influenced by the massively conflicting Dutch and German reports, with one side proclaiming me to be a generic male and the other side a full-blown hermaphrodite.

He figured that any kind of surgery should take place at a large, academic hospital, and not a private clinic. To that end he suggested that one of the urologists he consulted today about my case could mediate between me and the VUmc gender team. I really had to contain my amazement at that suggestion, as I had clearly explained to the surgeon what hell I had gone through at that place the past years. When I said that was no option for that reason, also due to the disciplinary case I have running against the VUmc gender team, he suggested that I should just go back to Germany. See that surgeon again I went to the first time.

I had to cut off the phone conversation there. I just couldn't take it any more. No matter what I had explained, about how I and others for me had searched around the globe already for a capable and willing surgeon, but that none had been found so far. It all didn't matter.

Is this the end of the medical efforts? Nothing has changed for me in terms of knowledge about my body. As far as I know Germany's conclusions are still the one to go for, with me having an existing, closed-off vagina. No need for me to go all asexual just yet, I can just stay my traumatized, shell-shocked, crippled sexual self for now. As the surgeon mentioned, he and those he consulted have never encountered a medical case like mine. I guess I could curse being so bloody unique now. I very much doubt that there's medical help in my future.

I'm quite ready to move to a country now which does treat people like me humanely. It's clear to me that The Netherlands isn't going to do anything positive for me, ever.

Feeling relatively calm right now, which is why I'm typing this now. The emotional backlash and pain is coming up soon, though. Thanks for confirming that I'm an unwanted anomaly and freak, yet again. My traumas are going to have a field day with this one.


Maya

Tuesday, 9 July 2013

The Dawning Realization Of Asexuality

This afternoon I got a phone call, causing me to almost leap up from my chair as I tried to take the call. Shaken, with both my hands and voice trembling, it turned out to be not my surgeon calling me, but instead one of my lawyers. A new date has been set for a hearing in the legal case against me for an incident which occurred over two and a half years ago [1]. That incident in me getting beaten up by the police from which I still suffer permanent nerve damage in my hands as well as in my right knee. I now have a different lawyer for this, as the previous one was incompetent enough to only focus on settling without even bothering to read up on the case.

I really couldn't believe how shaken I felt even before taking that call. It really makes it clear how agonizing the wait is for me while I await the surgeon's judgement on how to proceed and whether there will be a surgery at all. I have had a lot of time to reflect on why this surgery is so important to me, and what it would mean to me if it turned out that I really do not have anything resembling a properly developed vagina.

The fact of the matter is that if that turned out to be true, I'd be quite literally physically asexual. Taking stock of which reproductive organs and/or genitals I do not have in that case we can count the following: womb, ovaries, testicles, prostate, vagina. Add 'penis' to that list as well, as what I do have in that area would not make a man happy in terms of functionality. So I'd be genital-less. The past years I gradually went from the realization that I am infertile, to still having genitals to realizing that I'm now on the verge of two possible branches: having a moderately functional penis and at least a moderately functional vagina, or having only the former.

I know that the former would make me really quite happy and would make me feel... normal in a way I can not fully explain. The latter would push me towards an uncomfortable realization: that I have been destined to be asexual. Looking back at how much I disliked my developing sexuality during puberty, my attempts to extinguish it, then followed by sexual experiences driven only by a sense to 'fit in'. I can not honestly claim that sexuality has ever been a part of me, nor has it ever developed into something I could regard as anything but an overrated source of mostly pain, inconvenience and suffering.

Maybe I have always been asexual, if only to some extent. Possibly due to the body I have and the subconscious realization that something was 'off'. I don't know. It is possible. The most uncomfortable realization I'd have to face if the lack of genitals turns out to be true is that in the end both the Dutch and German physicians turned out to have it wrong. It'd also mean that my body is quite an interesting form of intersex, with an almost complete lack of any development of any genitals and reproductive organs whatsoever. Me being assigned a female identity depended on the German surgeon being right. This would then not be right any more either. It all unravels.

What identity do I have? What identity does an asexual being with no discernible genitals have? How would it live in a society which is based around sexuality in all forms possible? I don't know.

This is all quite too much to take in all at once. These two diverging paths ahead of me make me feel split myself, as though I am living in two realities at the same time like some kind of quantum super position. Something needs to collapse this wave function or I'll probably go nuts. Which side is it going to be? Which door will you take, my dear contestant? What outcome will the roll of the dice bring us? Did mom make vanilla or chocolate pudding for dessert?

I'll gladly take the future with the least uncertainty and the most calm and peace. That is, if you don't mind.


Maya


[1] http://mayaposch.blogspot.nl/2011/05/taking-nightmare-notch-further.html

Thursday, 4 July 2013

How Dutch Physicians Keep Sabotaging My Life

The MRI scan made last Friday was a mistake. It has only served to further the medical madness. Or maybe it was going to happen anyway. It all comes down to what I pointed out in my previous blog post, about how the German and Dutch results are completely opposing in their conclusions about how my body is put together. Allow me to detail today's events at the clinic.

The first thing the surgeon said after we sat down in his office was: "We have a problem. I think you know what it is."

To this I responded that it was the MRI report by the Dutch hospital. He said it was, further telling me that he had talked with the radiologist who did the report, who had told him that he had not found any indication of the presence of a vagina. Feeling cornered, I could only point out again that this was the typical pattern when an MRI scan of me was analyzed by either a Dutch or German radiologist or physician. When the surgeon asked me why they (specifically referring to the VUmc gender team here) would incorrectly diagnose a scan and do no further testing, I had to answer truthfully that I had no idea, but that the case against them at the medical disciplinary commission should provide some answers.

Asking me what I was looking for out of all this, I replied that I just wanted a restorative surgery, based on the medical evidence from Germany, including the exploratory surgery. I was able to detail to the surgeon what the German surgeon had told me after the surgery, when the restorative attachment of the vagina to the perineum hadn't worked out. The way I remember it (and which I blogged about the same day, back in 2011) is that the surgeon said that he wasn't able to do that procedure due to the tissue being 'too stuck together', which I think means that he had trouble separating the vaginal tissue from the surrounding tissues.

After this he asked me which team at the VUmc I had contact with (I named De Ronde, van Trotsenburg and Cohen-Kettenis specifically) and whether they had bothered to perform a mosaic test, to which I answered 'no'. Writing down the names of three expert urologists he knows he told me that he'd be contacting them in order to figure out what to do next. Based on what I had told him earlier that appointment about how I experienced the presence of 'something' from outside, he wanted to do another physical examination. This was the fun finisher of the day. He left after telling me again that he'd be contacting these three people and would call me some time next week.

Heading home by train for a good three hours I found myself feeling beset by many strong emotions. In the first place I guess I feel angry and humiliated by these Dutch physicians. What makes them want to actively sabotage my life and health to the point that they'd even seemingly falsify reports? And in the case they aren't doing that, how is it possible that seemingly most Dutch physicians are so mind-bogglingly incompetent that they can not spot something which is that obvious? What is their issue with me? I haven't done anything wrong; I just came to them for help with some fundamental questions about my body.

Sure, you could call me a looney and refusing to accept the evidence that is right in front of me. If it had only been Dutch hospitals who had looked at my case, yes. If there had been no German involvement. If the balance on who can/can't see the vagina wasn't split a perfect 50/50 between these two countries. As things stand I can make heads nor tails of this situation. I feel angry, outraged, disappointed, frustrated and furious at the Netherlands, both at its medical system and its politicians. Today's events have made me decide to definitely migrate by next year, most likely to Germany. The problem isn't me, but is the Netherlands, ergo I should leave lest it further poisons or destroys me.

I also feel very conflicted on these three urologists the surgeon wants to contact. Precisely for the reasons outlined above. While I believe that this surgeon is a good person who really wants to help me because he finds my case interesting, very unique and really wants to make me feel happy, I'm afraid that these urologists will be just like all the other Dutch physicians and just spew the same lies, further sabotaging my chances of ever getting that restorative surgery. It makes me feel very apprehensive about that phone call next week.

It would so much easier if I had not gone to Germany; if I had just believed what the Dutch physicians told me. Why did I had to have this overwhelming feeling that the Dutch hospitals were wrong? Why did the German specialists have to give me the exactly opposite answer to what I had been smacked silly with in the Netherlands? Why did both sides have to be so maddeningly consistent in their diagnosis? Why does it feel like I'm just a toy of Dutch physicians? Why do they seemingly despise me enough to want to ruin my life? What the hell is going on?

Even though no real bullets and grenades are involved, I am inside a war. Have been for at least eight and a half years now. The battle field is my body, the invading army the Dutch physicians. Everything I ask is denied. Everything I try is blocked. Everything I know to be right is denounced as a lie. I have to watch every word, every movement. Everything can mean victory or defeat, even if just in a single battle. There's no freedom, no peace, no safety. I can only run from cover to cover as I try not to get taken out. This is medical warfare at its worst.

Throughout all the current events I can only ask myself whether this is truly the end of this particular war, or just another lost battle with victory snatched away by the jaws of defeat.

On my journey back I saw so many happy heterosexual couples cling to each other, hold each other's hands and exchange kisses. Shutting them out with my music and staring at the world outside the train window, I could only cry.


Maya

Tuesday, 2 July 2013

Sick Of Being A Chewing Toy Of Physicians

Yesterday I picked up the DVD with the MRI scan images and the radiologist's report of the scan which was made last Friday. Looking at the report it turned out to be the first Dutch MRI report which actually indicated that I do not have anything resembling a regular prostate, as previous reports did. It did however not explicitly mention the presence of a vagina, indicating that it could see something, but that it wasn't clear whether this was a uterus or not. It dismissed the presence of 'internal female genitals'. While not as outright dismissive as earlier Dutch radiological reports, it is still a far cry from the three sets of earlier German MRI reports which were very clear on the presence of a vagina, or the report of the exploratory surgery which found said vagina as well.

Talking with others about this yesterday, some pointed out that there is a lot of terminology confusion and dissonance, such as what is meant with 'genitals', and which part is the vagina. Such dissonance makes it very hard to properly interpret this report, leading to yesterday's PTSD attack. After reading the report I first had this horrible sensation, slowly developing into a certainty that the surgeon will dismiss my case now or at least discard the possibility that I have an existing, closed-off vagina. This feeling then developed into a complete lack of self-worth, of being alone and miserable.

Even today I'm feeling not entirely stable, still. I just read the report again before I started typing this blog post and I could see things and nuances which I had missed or not properly interpreted before, yet it still leaves me with a very uncertain feeling. Putting reference books and images next to this most recent MRI scan I can yet again see that my internal anatomy doesn't match up with a male anatomy still, with where the vaginal canal is being quite visible, running between the bladder and rectum. The reference books I use refer to this section as the 'vagina', but I'm not sure what Dutch radiologists were taught during anatomy classes. I have no explanation for why German radiologists seem to be far more clear on what they can and can't see. Maybe it's that Dutch radiologists are afraid to get sued, so they try to go for the most generic analysis possible? I don't know.

I do know that I'm sick of being caught between those two sides for years now. Germany has been a constant and unmoving factor, with the exact same diagnosis from three different, independent teams, whereas the Dutch interpretations have moved and shifted a lot, sometimes seeing things where they were not (both testicles in scrotum, when one wasn't descended), or giving two different explanations for the supposed vagina on two different occasions (air in/outside the rectum).

I'm not trying to prove that I am right about something or not. I came first to Dutch and then German hospitals for a medical diagnosis of how my body is put together. During this process these two countries have given me two diametrically opposed conclusions, with the German conclusion becoming ever more likely based on physical examinations, general sensations in that area, as well as the exploratory surgery.

In short, I just want to know the answer. I think I know the answer, as summarized by the German teams, but the only way that will ever be fully proven is through a successful restorative surgery.

On Thursday I'm having another consult with my surgeon about said surgery. He'll have this MRI scan as well as the German surgery report in his possession if everything went right and he'll be able to give me his opinion on what he thinks is possible with the surgery. Hopefully the answers will come with this surgery. Else I'll just have to remain a helpless chewing toy of medical systems here and around the world. I'd rather not have that happen, though. I can not have peace with myself or my body in any fashion while that situation persists.

As I mentioned in my previous vlog video, I want this nightmare to end already so that I can finally start living my life. Nobody can live forever in a nightmare. Either you escape or you perish...


Maya