Friday, 19 February 2016

A sobering, sane reality

Yesterday was the long-awaited, and very much exhausting appointment with the endocrinologist and intersex specialist (a retired gynaecologist). As those who have read the previous blog posts may have noticed, most of the exhaustion started long before yesterday, so I'm at least grateful that this appointment is done and over with. How I feel about its results I'm not entirely certain yet.

There are certainly many positive aspects to yesterday's meeting, not the least of which is the total and complete acknowledgement that I am a hermaphrodite without any reservations or doubts. This evidenced by the presence of not only a penis, but also a basic vagina and semi-functional ovaries. The biopsy was also confirmed by them as showing not fully formed testicles, with no chance of them ever having produced sperm.

With the third blood test's results taken into account as well, everything looks pretty normal there, with only my estradiol levels being on the lower end of the scale for a woman, ranging between 25-33 picomol (scale from 27 - 100). Everything else looks normal for a regular woman. The upshot of this is that my monthly cycle is at least partially explained due to these functioning ovaries, but also that I have to keep taking extra estradiol as a precaution to keep healthy bones, with a recommended estradiol value of 50 pmol.

With four weeks I will have more blood drawn to see how things are holding up hormonally. The intersex specialist will meanwhile look into surgeons for me, though both cautioned me that reconstructive surgery may not be possible with the vaginal tissue I currently have. They also pointed out the major risks of surgery in that area. To this I merely said that I want to talk with surgeons about what options they see using the available MRI scans before I will make any decision there.

As far as the monthly pains go, I think that that will be the main sticking point, as life without a functional, accessible vagina is far easier to imagine than one with constant, chronic pain, it draining much of the joy one could have straight out of life. As I'm typing this I find it to be horribly uncomfortable to even sit on a chair at moment, as down below it feels like everything chafes, burns and itches. I found myself cursing my poor German vocabulary yesterday a lot while I tried to describe these sensations.

To recap, I feel grateful that things are at long last moving forward, with real medical solutions in sight. Yet I am not without doubt and questions plaguing me at this point, still.

The uncertainty about surgical options. The perceived lack of understanding of or care for these monthly pains, even though it's what literally pains me the most every month. Also this big, wide-open world I am suddenly cast into, which is forcing me to look at everything with new eyes. What is important, and what isn't? What would make me truly happy and what can I live without?

The thought that I'd just be sent away with the same hormone therapy as before, with surgery off the table as realistic option, admittedly makes me feel a bit bitter and disappointed. Even though no such thing has happened yet, it is a possibility which I must consider at this point. For more than eleven years I have literally fought almost to the bitter end to get answers and help. It is however a story which could have a very anti-climactic end.

It's a sobering reality, indeed. And yet I feel grateful at least that while the three of us sat there, it felt casual and at no point did I really have to defend myself. Both of them asked after my contacts with surgeons so far, unable to believe that they'd really just put me away as a transsexual, if that, and leave things at that. It all felt so... sane and normal. A far cry from the madness which the medical world has filled much of my waking hours with over the past years.

I guess what makes me feel so bitter and disappointed for the largest part is that I am now forced to make up the balance, assuming that this year will be when this medical story of mine will reach some kind of conclusion. It's hard to say that it was all worth it. Being a highly unique, possibly singular medical case hasn't helped my life in the slightest, from what I can tell.

A case which essentially started when I was eleven years old and got to experience doubt from doctors as well as from others around me for the first time. All thanks to me having my first period as a 'boy'.

I think it's normal to feel this way at this point. Maybe if things work out more positively than the bleak image I'm sketching here, I probably could only describe my feelings at that point as something far exceeding 'joy', past 'jubilant' and straight into hitherto unexplored regions of relief and joy for which no human language has words. That, however, is sadly mere speculation at this point.

What I have at this point is very little, when it comes down to it. Basically just the acknowledgement that I am intersex and a hermaphrodite, which is something I first learned back in 2007, nearly nine years ago now. It's great that I don't have to fight that battle any more, and that I seem to have medical professionals here in Germany who genuinely wish to help me.

What will happen from here is I think what will determine most strongly how I'll feel about yesterday's appointment, life-changing as it was and still is.



ron said...

Stay focused the hand you have been dealt to the best of your ability ...don't be discouraged by ignorant people. Easier to say than do.

Rebecca Farquharson said...

I glad they have again recognised you as a Hermaphrodite. Lets hope they do not go back on it again.

RW said...

I am so happy for you! Finally some real answers that fit your lived experience and validate your truth. Figuring out what choices are available to you and choosing your own path will be difficult and perhaps disappointing but you are finally working with specialists who have your best interests in mind as you go through the process.