Thursday, 4 February 2016

Progress, and so many more questions

After not hearing from the endocrinologist for a week, I decided to write another email, asking what the status was. Within two hours I got called by her, and currently I'm sitting here typing this, while feeling more than just a little bit overwhelmed and torn between so many emotions and sensations that I have no words to even begin to describe them.

On the main point, that of the 33 picomol level of estradiol found with the first blood test, the second result was pretty clear: it wasn't the natural hormone level, but that of natural plus the artificial estradiol. With the second test's results the estradiol levels were significantly lower.

That wasn't the confounding part, though. That was that a seemingly unrelated hormone along with a few others had spiked in this second result set, for which they cannot find an explanation. I am now to come in for another blood test next week, the appointment for which I'll be contacted about tomorrow. Then on the 18th I'll have my next appointment with the endocrinologist, but accompanied by the intersex specialist she has been consulting as well.

The past weeks that I have been waiting for these results, I have harboured thoughts being whispered to me from the dark, traumatised sections of my mind, insisting that I was going to find disappointment with this current attempt at trying to find medical help. It was no surprise therefore that I was feeling apprehensive about this phone call earlier, half-expecting to find another dismissal of my case and me being sent away to find 'proper' (transsexual) help or some such.

Thus when the endocrinologist was talking about how this intersex expert recalled hearing my name before, and found that I had been in contact with many doctors over the years, I felt myself bracing for that swift kick to the head and the shattering of the few dreams I still had.

Instead she just mentioned that they wanted to talk things through together to make sure that they didn't try contacting the same doctors I had contacted before already. She also mentioned that together with this specialist they had looked at the MRI scans they had of me, and could see the ovarian tissue on it. Not as fully grown ovaries, but more as strings of tissue, only partially developed, much like the testicles were.

With this sudden overload of information I'm not entirely sure how I am supposed to feel about things. Happy that things are still progressing, I guess. Relieved that nothing bad happened so far. Frustrated and disappointed that my hormonal situation is still so incredibly unclear, and offers no explanation for the physical symptoms and pains.

I don't think that my hormonal situation has ever been clear. When I was about eleven years old and got my first menstruation-like symptoms, I wasn't using hormones. During more than a decade afterwards I didn't either, yet I still had regular pains which I simply ignored, figuring I had just eaten too much, or the skin had become irritated somewhere for some reason.

Now it appears that I cannot take these extra hormones any more, and that the rest of my hormone levels are completely out of whack, so that even an endocrinologist and intersex specialist combined can make heads nor tails out of it. There's no explanation for the linea nigra stripe I have on my abdomen either, this way.

At this point I realise so well why I have kept looking for answers about my body during the past eleven years; even just with these initial findings I'm already so aware of how darn little I know about this body of mine. So little that just this initial investigation is already throwing up so many mystifying questions.

I hope that this year the mystery will finally be fully revealed.


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