Thursday, 1 March 2018

Where to go from here

When I first started this blog, I did not moderate comments on my posts. Before long, spam and later hateful messages forced me to start moderating each posted comment to filter out such junk messages before they'd be made public.

Such hateful comments on my blog and elsewhere used to hurt me quite a bit. The focus of these stalkers and kin appeared to be to make me feel as miserable as possible, usually by feeding the fears and doubts I was harbouring. Expressing those fears openly on my blog made this quite easy, naturally.

Yet when I got another one of such comments in the moderation queue this morning after a bit of a quiet period, it was interesting to note how little it evoked in terms of feelings. This was the comment, by some anonymous poster:

"When the docs themselves didn't find any female reproduction organs in your body, it means that you're just hallucinating about being an intersexual. And whole world already swayed and believed into your story without actually see a proof of your intersexuality. So stop making up story and doing something stupid to your body, before you share an ultimate proof we can't deny that you're an actual intersex."

Even ignoring the horrendous grammar and botched last sentence, the intention of this comment was clear: to hurt and confuse, to make me question everything that I am and so on. Yet instead it merely made me shake my head at how little such pitiful people understand of the situation. Too little to even properly hurt me.

The surgery back in 2011 and the biopsy performed on the removed testicles already showed that I never was a male, with virtually no testosterone and complete male infertility (no sperm-producing cells). My phenotype is also that of a female, including the shape of my pelvis and so on. This surgery also confirmed the presence of a closed-off vagina, which was the reason why I got my official sex changed so easily.

Last month's surgery further added to this that I do not have a developed uterus or ovaries, something which was already known from MRI scans and ultrasounds. It did not examine the vaginal area and nearby, which is where I am currently still experiencing severe chronic pain. What this surgery basically told me is that like I thought quite a few years ago already is that I was essentially born with just a penis and a vagina, but little else.

I also got the results this week of the cycle monitoring, for which I had blood drawn over a month, to see how my estradiol values fluctuate. The interesting thing here is that although the values are pretty low for a female (~18 - 31 pmol/L, relative to normal minimum range of ~98 - 176 pmol/L), it was with these natural values that my body exhibited the extreme PMS symptoms and formation of linea nigra when I was still taking estradiol as part of hormone therapy. This would indicate that my body is far more sensitive to estradiol than a regular woman.

I remember quite well how at the second gender team in the Netherlands which I visited I got prescribed hormones, with the estradiol in the form of these plastic patches. The dose for this was set by a doctor from this gender team, using the normal values for a male to female transgender person. Right after I started using those patches I began to suffer from intense motion sickness, severe aura-based migraines and so on. Likely this dose was many times higher than what I had determined worked for me using oral estradiol pills and regular blood tests.

I got this last batch of info at the gynaecologist this week, and now have photos of my insides to add to my collection. Unfortunately the gynaecologist does not want to look at the issues in the vaginal area, and did not wish to refer me to anyone else, insisting that it's not a gynaecological issue.

I am now yet again without any medical assistance and despite having learned a bit more about my body, the chronic pain and other symptoms are not letting up. As I type this, the inside of my upper left leg along with the groin area is super-sensitive, even painful to the touch. First on last week Wednesday did I suddenly feel something twist and shift in my lower left abdomen, causing intense pain.

Things seem to have settled a bit more now, but as my body works its way through its usual monthly cycle, there is again the sensation of fluids gathering in the vaginal area, accompanied by sharp pains, itching and general discomfort.

Honestly, I would love for all of this to be just an illusion. Sadly, reality isn't that kind to me. I would have picked being a regular male or female over being a hermaphrodite if it means being in this much pain and discomfort all the time, with doctors trying to be rid of one as quickly as possible.

What will I do next? I don't know. The most effective approach does not appear to be to seek out medical help, but to wait for something to go catastrophically wrong with my body. That way doctors are obligated to help, since they won't do anything out of the kindness of their heart, or because it is the right thing to do. Liability insurance is expensive, after all.



K.L. P said...

I love the way you handled this Maya. I too am intersex, and didn't discover it or knew what it meant until late in life. I discovered I had a female pelvis when I was in my mid 30's but didn't understand then what it would mean until later on. On that note of the proof I deal with, bone structure, breasts and the memories of bi weekly testosterone injections are enough now for me to know. My physician is helping me take back what little I have left and I intend on living! I am so glad I found your page here and facebook. You are a hero and a blessing to me and so many others.

Your friend forever,

Venture said...

Good luck with your search!

Tom Farrier said...

1. Mean people suck. Pay them no mind.
2. I don't know what kind of "proof" any of these clowns are looking for. You've made available a great deal of (non-prurient) images on line over time, and you've been open, thoughtful and informative in documenting what you go through on a regular basis.

3. Perhaps a swift kick in binary soft parts would be satisfactorily convincing. Otherwise, to hell with the weirdos.