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
1 comment:
Training.
It's about the medical training they receive, not a conspiracy, though it would appear like that.
At one set of medical schools they get taught what to look for, what it looks like - at the other they don't. So they don't recognise it, as the situation is so rare, they've never seen it before.
In a country of 60M people, there's a good chance that 3-4 cases will be seen by the same physician. They might not recognise it the first time, but by the third, they know what it is and what to look for.
In a country of 12M, they might see 1 in their entire lives, but probably won't.
Good luck. It sounds as if your current physician is doing the right thing.
At least it's not the 1970's. Then there were no ultrasounds, and anything like this was kept secret from the patient, the records "lost".
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