Sunday, 26 February 2017

When doctors aren't certain you're even human

Last Thursday was the appointment with the surgeon in Munich. Not many words have to be dedicated to describing the experience. Essentially I arrived after a three-hour journey, talked with the surgeon who - along with the assistant - was not aware of the (previously acknowledged) collection of documents, MRI scans, faxes, etc. previously sent to them by me, my doctors and my psychotherapist.

After this initial 'who are you and why are you here' moment of utter chaos, it then quickly turned into an awkward situation where the surgeon asked me why I had even come to him, as he could do nothing for me, since it wasn't at all clear what the composition of my body is, let alone which specific surgical procedure could be applied.

On the bright side, he did give me the name of a supposed intersex specialist, and that at a cost of only sixty Euro to me for the consultation. I will now have to contact this person, starting essentially from scratch on the whole research and diagnostics thing. With this new specialist the past twelve years of diagnostics, symptoms, surgeries, MRI scans, blood tests, chromosome testing, etc. etc. will have to be reviewed to determine how a conclusive diagnosis can be reached.

In short, I'm more or less at the exact same point now as I was nearly ten years ago, shortly after the first MRI scan was made.

While I'd love nothing more than to just say 'screw this' and give up on this whole useless 'intersex' thing, I'm also painfully aware of the fact that I have no choice but to continue on this course. I cannot ignore the PTSD which I suffered as a result of the traumatic past decades of my life, nor can I ignore the monthly cyclic pains and the potentially harmful issues they may be a symptom of.

I do not wish to live the rest of my life in such absolute uncertainty and fear.

With about a week I'll meet up with the doctors who are handling my case here, in order to discuss the next steps. I am hopeful that they can at least handle some of the communications with this new specialist. After that it's waiting to see which tests and examinations I'll have to undergo. Biopsies are likely, as is genetic testing and more detailed MRI scans.

Along with all of that, I wish that I had already moved into that house in the countryside, to at least have that peaceful home to feel safe and relax at. With the eviction court case against me next month, it appears that there's going to be nothing easy or relaxing about this year either.


1 comment:

Devin Edwards said...

I appreciate your strength! Your resolve is remarkable. It seems shamefull that this Dr would neglect you in such fashion. Perhaps if he were paid to do his homework, or if he just did his job and read the files of his new patients? Anyway, it seems like it would be necessary for you to continue. Obviously, monthly cycles with-out necessary... whatevers... are probably not healthy. I am thankful that you are a part of my life, even if only through online. And I send you love and hugs!