Wednesday, 23 July 2014

In The End Everybody Lies And Is Wrong

I just received a letter from the clinic I recently had the MRI scan at containing the results for the MRI scan and the genetics results on my blood. After the earlier surgery cancellation by another hospital in Erding this letter went even further. Basically I'm not a hermaphrodite. They found no indications that I'm intersex at all. Genotype and SRY look normal, MRI scan shows male reproductive organs including a prostate. I should be a normal biological male as far as this hospital is concerned. And yet I'm not.

Whether this hospital is trying to deceive me or not isn't even that relevant any more. Or that they're the first German hospital to not conclude I'm a hermaphrodite. They did consult a Dutch physician from the VUmc gender team in the Netherlands, but that shouldn't affect their judgement so much, should it? In the end the point seems to be that there won't be any answers to what this body is, which genitals I do or don't have, why I have these monthly cramps and pains and what the hell has been happening in general that I have a body which from a young age has decided to be decidedly not male.


For over a decade now I have been going from hospital to hospital, always getting contradicting conclusions without any real answers. Germany was supposed to be the end point of my medical search as they had up till now always concluded that I'm a hermaphrodite, which is what led me to get vaginal reconstruction based on their findings. Now it appears that a decade wasn't long enough to find answers. At this point I'm throwing in the towel, releasing all five sets of MRI scan images in the idle hope that something good will come from it. I'm all out of ideas and losing what little bit of myself I thought I knew to ever increasing dissociation.

So, here are the MRI scans. I don't know what's on them any more. I never looked at the fifth set, even. I don't really care any more. I'm just a brain without a body at this point. Medical secrecy never did me any good, so feel free to share, I guess.

2007-12-21: MRI, Germany:
2008-11-06: Erasmus MC, Netherlands:
2009-12-??: OLVG, Netherlands:
2013-06-28: MST, Netherlands:
2014-07-08: Uni Tübingen, Germany:

Will there be further updates on this blog? Doubtful. I started this blog seven years ago to document my search for answers about this frustratingly confusing body of mine. Unless there's anything to write about which doesn't involve me feeling sorry for myself, there's no point to ever adding to this blog again.


Friday, 18 July 2014

Not Knowing Why, Yet It Hurts So Much

Some days I just feel beset by severe melancholy; a heavy mood which I just can not shake off, but which fills me with an intense sadness and feeling of something being fundamentally wrong with me, my environment, the world, the universe. Everything. Earlier today as I sat on my balcony, trying to focus on the book I was reading, the same sensation which I had been feeling for a few days now made its way to my mind's surface and burst there like a noxious bubble of gas in a swamp, releasing its toxic contents.

Suppressing memories of a traumatic event is easy. The difficulty lies in keeping it up, day after day, month after month, as countless triggers every day stir these memories, further draining one's mental reserves in the effort of shackling these unwelcome recollections once more. For me things like calendars and photographs in and around the office of (half-)naked women are strong triggers, causing me to avoid these rooms or mentally block out their presence as much as possible.

At this point triggers for my traumatic memories essentially involve people. All people. Any people. Everything which reminds me of sexuality, having a normal body, being able to not feel like a freak. And so on. Yet at the same time I also have to struggle with something I have loathed from the beginning of puberty: the genetic programming virtually every human being is cursed with. To feel both strongly drawn towards sexuality and relationships while at the same time feeling strongly repulsed and disgusted by the same is an impossible struggle.

I also know what underlies these traumas as horrific memories regularly torture my thoughts involving the events which led to become this emotional wreck I am today. Central to all of it is the one question which causes me untold agony: why did they do it? 'They' referring to the physicians, psychologists, politicians, bureaucrats, health insurance officials, lawyers and the like in the Netherlands who felt it necessary to essentially punish me for having this body I was born with. As other, lesser traumas fade, this one central trauma merely gains in strength and intensity.

Even fleeing to Germany to escape the Dutch persecution hasn't provided the desired salvation yet. I blogged before about having reconstructive surgery this month, but the surgery date passed without having received any kind of confirmation from the German clinic. The contact with the other two hospitals I contacted has so far been confusing to say the least and traumatizing in some ways. Though I did undergo that MRI scan recently, I have no idea when I'll hear something from them again, or whether anything will happen surgery-wise this year.

As many have remarked so far in real life and in comments, I don't seem to be able to see myself and my situation as they truly are at times. I am the first one to admit this and agree that it's a result of the brainwashing forced upon me in the Netherlands. With it being virtually impossible that I'll ever learn the answer to my central question related to how I got mistreated and persecuted in the Netherlands, all I can do at this point is that I'll get other important answers here in Germany or elsewhere.

At this point I do not believe in psychologists and the like any more. After sending out a few requests to local psychologists and not receiving any response I realized that they cannot help me either way. My situation and case is too unique, too unusual for any of them to be capable of dealing with it. I'm the only one who understands my situation, the only one who can truly support and help myself. All others can do is support me in the day to day things so that I have more time to spend on counselling and dragging myself along from medical appointment to medical appointment until the long-awaited salvation arrives.

To sit here at home, crying and feeling so horrible and upset as thoughts of destroying this body I inhabit for indirectly causing all of this pain I feel, I wish I could end it all right here and now. In the sense that I would like to be able to tell myself exactly how this body is put together and what it all means to me. At this point I can only stare at myself in the mirror and ask myself frustratedly what the hell I am, what is that I am looking at. A boy, a man, a girl, a woman, something else.

That I need to know the answer to this question is because of what could be called my youth trauma, as for fifteen years of my life - including my entire puberty - I didn't know what I was. Sure, people told me that I was a male, but as I heard many years later after I found out about my medical condition, my grandmother, mother, many of her friends and countless others had always harboured doubts about this. Undoubtedly this also reflected in their treatment towards me.

To once and for all silence these thoughts of self-destruction, I need to get down to the whole, complete truth. All it takes is a single honest and capable medical team. Genetics, reproductive physiology, general physiology and the truth about what my reconstructive surgery options are. I'm not afraid of the truth. All that terrorizes my thoughts is the fear of a repeat of the horrors I went through in the Netherlands. I would rather kill myself than to go through that ever again.

Right now it's time to reset my thoughts once more. Switch off emotions and any thoughts about me having a biological sex or gender. I'm just a floating brain. I like science and technology. I have cool projects to work on. Nothing of it has anything to do with humans. Neither do I. No more superfluous thoughts.


Sunday, 13 July 2014

My Sixth MRI Scan

Some backstory: when I first went to this German hospital about two months ago it was to get a second opinion on the reconstructive surgery for which I had previously contacted another German surgeon and got a date scheduled. At this new hospital they were quite interested in my case, started genetic testing on my blood and scheduled an MRI scan with contrast dye. Then, after informing them about a third surgeon I had contacted and that surgeon's desire to get the genetic testing done first to figure out which form of intersex I have exactly, this MRI appointment got cancelled and I was left waiting with no appointment or concrete date.

Then, a few weeks ago I suddenly got a message from the surgeon's assistant in which she expressed a kind of apology for me missing the first MRI appointment and offering to schedule a new appointment. Agreeing to this, I then had another road trip to a hospital to look forward to on the 8th of July, which was this week Tuesday. I must honestly say that this message caught me by surprise and I had trouble shaking off the feeling that I was being set up somehow. Regardless, I had to go to the appointment and see what happened.

That Tuesday the journey itself was quite uneventful, with Deutsche Bahn giving me no grief. The entire journey I was filled with apprehension about what would happen at the hospital, though, in the sense that I had no idea whether there really would be an appointment in the system or that it was just a ruse and I would have to return home again after such a shameful discovery. Regardless, I had arrived at the final train station and had to catch a bus. There I found that the bus company's workers were striking. After a few confusing minutes for me and my fellow travellers we found that a bus would still go to the hospital every half hour.

Once at the hospital I finally got to execute the scenario I had been practicing for weeks at that point: asking at the front desk where I had to be for my MRI appointment. In German. While I was waiting for the guy in front of me at the front desk, a woman behind the desk who was not helping the guy in front of me quickly helped me. I told her that I had an MRI ('MRT' in German) appointment at 12 o'clock and to my surprise she pulled out a big sheet of paper and asked me for my (last) name, confirming my first name and telling me where I had to go for the radiology department.

So I really did have an MRI appointment, then. This was going far better than I had hoped. Walking down the hallways I quickly found the right department and got helped by a friendly lady at the desk there. I had to fill in a form with the standard MRI-related questions and she also asked me for the referral from my GP and the blood test results (contrast dye precaution, for liver-function), both of which I had with me. I wasn't just surprised by how well-organized everything went so far, but also by how easily things went considering that I was still doing all communication in German at that point.

After waiting for a few minutes it was my turn for the MRI scan. The assistant gave the usual instructions on where to change clothes and also advised me to take off everything but my underwear before I slipped into the hospital gown, as it would get very warm during the scan. Having done so, a doctor entered the room to insert the contraption used for the contrast dye into the usual vein on the opposite side of the elbow. That done, I was guided into the MRI scanner by the first assistant and a second woman. The latter at one point asked me where I was from, but I could barely hear her since they had put on the headphones already. Taking these off she repeated her question in English, to which I replied in English that I had moved to Germany recently from the Netherlands. I figured that something about my accent when I speak German must have tipped her off that I'm not native German born :)

The MRI scan itself took about fourty-five minutes. The first half hour or so wasn't so bad. I did the usual stuff as with my previous five scans: just blank out and doze a bit while stuff goes on around one. I got the instruction via the headphones to hold my breath for a bit while they did one scan series, then they told me that it would take another ten minutes or so at that point. That's when they apparently also added the contrast dye or more of it, because I got really, really warm around that point. It's never very cold inside an MRI scanner because it's quite a narrow space, but this time it turned into a sauna. It wasn't external warmth either, but my body which was warming up. As someone told me later, the contrast dye is at or above body temperature, so that would make sense.

I was very glad at this point that I had taken the assistant's advice to take off all my clothes, as I could feel everything getting drenched with sweat. When the MRI scan finally ended and the assistant helped me get off the bed I felt both very sweaty and my body protesting against having had to lie motionless for so long. The lower back pains I keep having definitely didn't help there either. She also asked me whether I was staying at the hospital, to which I replied negatively. The reason she asked was because of whether the tube into my vein would have to stay or not. Taking it out  I felt relieved to be without body modifications again, albeit with yet another big hole left to heal.

I had been informed beforehand that the contrast dye tends to make people want to go to the toilet a lot, and although it wasn't quite so bad for me, I did make a toilet break after the scan before slipping back into my clothes. I talked with the assistant who told me that the scans would be sent to my doctor at the hospital. I told her that I had also agreed with this doctor that I would receive a copy of the MRI scan. This turned out to be very easy, I would just have to ask at the department's desk for a CD with the images and wait twenty minutes. Thanking her, I got dressed and went to the department's desk. Everything pretty much turned out as described and I did indeed have to wait about twenty minutes.

After I got handed the CD in the waiting room, an older woman sitting in the waiting room inquired about the examination I had received earlier. I told her about the MRI scan with contrast dye, pointing to the bandage around my left elbow. She was curious as to what the scan was for, to which I just responded that it was for reconstructive surgery, for something which had been 'off' by my birth. Something 'down there'. While I could have told more, it was already stretching the limits of my German vocabulary and there really wasn't any need to go into detail. The woman seemed quite understanding regardless and wished me a lot of luck before I left.

Leaving the hospital with the CD in my possession, I soon found myself back at the train station where I had some time to kill as I had booked my journey back in the expectation of delays of which there were none. As a result I loitered at the small book store at this station where a particular book caught my eye: 'Hilfe, wir sind umsingelt' ('Help, we are surrounded') by Helene Wolf. It's about the strange separation of humanity into two species: singles and couples. The word joke in the title should be obvious: umSINGELt. Essentially it describes how both species work, how they can learn to live with each other and deal with each other's oddities while also giving a lot of relationship advice. All in a humorous fashion. It seemed oddly appropriate for someone like me.

On the way back home and especially once home I had trouble not falling asleep. With the adrenaline and apprehension about the MRI scan gone, I was left a sleep-deprived, energy-less wreck. Eating dinner (pizza) first and then forcing myself to stay awake until a more acceptable time to go to bed than 7 PM, I went to sleep in the knowledge that the next day I would be back in the Other World, without hospitals and medical examinations. A strange feeling indeed.


Saturday, 12 July 2014

On Priorities And Possibilities

In early 2012 I was sitting in the studio of the local Dutch broadcaster TV Oost to partake in a talk show to talk about my experiences as an intersex person in the Netherlands. After the live broadcast we got offered dinner which offered me and the other guests an opportunity to talk about a number of topics in more detail. One of them which I remember quite well and which I blogged about at the time as well revolved around whether I as a person have the right to decide whether another person can or cannot love me and start a relationship with me. The point I offered initially was that I think it wouldn't be fair for me to start a relationship with someone as I know how much it would be burden that person with my troubles.

The counter-point from the other female guest at the show was that such a decision would not be up to me, that it would be their own responsibility to make that decision. I still agree with this notion, though I have since begun to entertain a possible counter-counter-point. Namely in the sense that one can never know everything in advance about a situation. In my dealings with other people over the past years I have noticed that all too often I had figured that I had made everything clear to them, only to be surprised by questions from their side. As a counter to this argument one could then say that it would just come down to personal responsibility in that case.

A few nights ago I had once again a dream in which I did in fact have a relationship. My dream partners are invariably female and often with East-Asian features, as was the case in this dream. My girlfriend was lying against me with me in a semi-sitting position and we talked about things. Even though I was feeling fairly relaxed in the dream, I still could feel the nagging voice in the back of my mind asking questions along the lines of 'what if?'. What if something changed? What if I found out something unpleasant? What if some situation drove us apart? What if my traumas would drive a wedge between us? And so on.

The standard response to such questions seems to be to just embrace the unpredictability of the future and take things as they come. While I have been accused in the past of being rigid and uncompromising to the point of seeming autistic (by so-called mental health professionals as well, no less), my main attitude to life is more one of finding a proper path and continuing on it until something better comes up. The way others keep switching lanes without any apparent reason or rhyme is frankly astounding to me. To me this makes me more laid back and my future more predictable in some ways. The issue which I thus have with starting a relationship - something I have never done so far - would then be to gain a sufficiently optimistic outlook to give the go-ahead. This year I had to refuse such a relationship for this exact reason. While it hurt me to say 'no', I knew in my mind that it was the right choice.

How important is a relationship, though? When I regard my current situation I know that it doesn't even appear on my list of priorities. The only reason I seem to spend time thinking about it is because I have been genetically programmed to do so. To long for the gentle touch of someone else, and have one's senses lulled into the false sense of complacency that everything is fine now due to the brain's reward centre being stimulated like crazy. Knowing how the relationship thing works on a neurological and biochemical level doesn't make things easier, nor does having countless traumas associated with it. If at all possible I would prefer to kick it forever off my TODO list. Since this is not possible I need to figure out some way to give it a place in my life.

I practically fled from the Netherlands to Germany to escape the horrors I had witnessed and experienced. Now, after more than half a year I can feel that I'm finally dealing with the resulting traumas somewhat. While it's hardly a picnic here in Germany, at least I am getting some proper medical attention, including frustrated responses from physicians who cannot comprehend that nobody has bothered to properly examine me in all these years. I had an MRI scan this week as a result of this, the first time with contrast dye. Now I'm waiting for the results of this scan and the genetic tests which were started two months ago. The other hospital I went to to discuss surgery turned out to be a bust. While a surgery date was set for next Monday, the promised details were never sent to me, ergo it cannot go ahead.

Not that I mind too terribly. As I blogged about before, it would have been a half-finished job, with at least one more surgery to go after it. The hospital I went to for a second opinion and also where I had the MRI scan this week seems to offer much better prospects, with everything finished in one surgery in addition to a barrage of examinations and tests beforehand. To me this definitely takes the number one priority spot, to get it all sorted this year. Fortunately one thing hasn't happened to me so far, something which was standard in the Netherlands, namely the accusations of me being a liar, of me being just a regular male and having all kinds of psychological delusions and illusions. To be freed from that is already one blessing. Now I just need to prove to myself and others that I wasn't blabbering like a fool about me also having female genitals. It's been nearly seven years now that this was first confirmed by a German radiologist, but without the definite certainty one can only gain via a reconstructive surgery.

Hopefully this medical mess will resolve itself the coming months so that I can fully focus on my professional career. At this point I'm actually a professional author of technical reference books in addition to being asked to write columns and articles on technical subjects. It's exceedingly hard for me to keep my professional career separated from my personal traumas. When I have a bad day because my PTSD got triggered and all I can do is feel miserable, cry and self-mutilate, that cuts into the time I should have been spending on this career. There's no future in the pathetic being part of this individual which I am.