Friday, 8 January 2010

Connectedness And Disconnectedness

First of all some bad, or rather not very useful news. I have received the result from the second genetic test, the chromosome test performed on cells from the inside of the cheeks. This result was also XY, meaning that as far as the geneticist at the UMCG is concerned there is genetically no explanation with current tests for my intersexuality.

I have also had another MRI scan performed a few weeks ago at the Onze Lieve Vrouw Gasthuis (OLVG) hospital in Amsterdam, this time using an additional, rectal RF probe for increased resolution of the soft tissues of the abdomen. According to the report from the OLVG I received yesterday via my GP, they didn't see a blind vagina on it, but did see a prostate. The report was exceedingly brief though, barely more than 3 sentences, so I'm not sure what exactly they did look at and specifics of what they saw. I will be requesting the images from this scan at any rate.

Today I sent an email to professor Weijmar Schultz at the UMCG, asking him about a few things. First point was whether or not he was aware of any contact by the urologist Meijer from the Flevo hospital here with the UMCG's urologist Van Driel. I then listed the points I'd like to have that urologist address, being the lack of a foreskin, the thin and fragile skin, the weird ejaculatory fluid prior to the hormone therapy and the complete lack of ejaculation after beginning the hormone therapy where there should be some at least.

I also addressed the low natural testosterone production of my body (25% of average male levels), an explanation for the cavity I feel where a woman would have a vagina, such as a proto-vagina, and finally why my libido has not decreased at all despite the use of testosterone-blocker, which is common with transsexual men.

Further I asked whether the radiologist had been looking for examples of other MRI scans on which a similar collection of air inside the rectum is visible. In a previous email Weijmar Schultz wrote that he'll take my suggestion for removal of the testicles to the next meeting. I made this request because it'd allow me to quit taking the testosterone-blocker, which would spare my liver and reduce the chance of thrombosis.

How do I feel about all this news? Mostly annoyed. At this point there is still a huge disconnect between external, clinical data plus own observations and the test results, with one group not offering any explanations for the other. In other words I'm still stuck at the same position. Go directly to jail, do not pass Start, do not receive $200. Sigh.

Where things do seem to be brightening up is with the media, with an interview and photoshoot for the largest Dutch newspaper 'De Telegraaf' next week (publication date early March or sooner), and interest from a large public TV channel for one of their medical shows. This may actually be my breakthrough, as it's hard to imagine getting more media attention than this in this small country.

What I feel as a huge disconnect is how the medical community in this country seems to be totally disinterested in a remarkable, exceptional and not understood case, even though medical science has been completely founded upon the research into the exceptions to what's 'normal'.

I truly hope that more media attention will give this topic the attention it deserves. It's beyond ridiculous that intersexual people are ignored and denied by society much like the existence of homosexual people and others was denied for the longest time. Even if I'm neither male nor female, I'm still a person with my own identity. Even if I don't know what it is exactly yet.


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dance said...
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