Sunday, 18 February 2018

Post-surgery: the never-ending nightmare and a brief respite

I was lying in my hospital bed on Friday, slowly recovering from having been fully put under for the laparoscopy procedure when the gynaecologist and a host of other doctors came drifting into the room. Even though I hadn't expected to hear much else, to hear that they had not seen anything resembling formed ovaries or a uterus in my abdomen was still a sobering message. All that they had done was remove a number of locations where tissues had become stuck together, which might have caused at least part of the pain I was experiencing.

Unfortunately they had decided to not open the perinal side to check upon the vagina, as the skin had already become quite scarred from the first surgery in that area. Still, the gynaecologist - who had performed the surgery - found it necessary to say that he had not seen a vagina with the laparoscopy, even though it would be stuck snugly below the bladder, unreachable from the top of the lower abdomen where I am now left with the three incisions. Also the remark that it looked 'like one would expect to see by a male', or something to that extent. I was still quite dazed at that point, so I hope I just misunderstood something.

The gynaecologist had mentioned previously that he hadn't expected to find anything special, same as that he didn't expect to see anything special with the currently still on-going cycle monitoring of my hormone levels during one month. Next week the last blood will be drawn for that test, with the full results supposed to be available in two weeks time, when I have the next gynaecologist appointment. Which will likely be the last appointment, with probably just a simple dismissal and a 'nothing special found'.

In how far do I trust and believe this gynaecologist? In so far as me not having fully formed ovaries and a uterus is something which I will believe, as neither MRI scans or ultrasounds have shown anything like that so far. As far as the presence of a vagina, that has been confirmed by the first surgeon who operated on me, so I'll put that down to them aborting a full examination.  To hear the gynaecologist say that they found 'no female genitals' thus seems rather poorly formulated.

I guess I will see what happens in two weeks time. I would love to be proven wrong, but so far it appears that all that I'm going through at this point is another repetition of me losing a little bit more of my humanity, without getting any kind of useful answers in return. It becomes so hard to keep a grasp on reality, especially when I experience one thing, and doctors keep insisting  that my interpretation of reality is wrong. Like this gynaecologist essentially already insisting that I cannot be experiencing a monthly cycle before even have received the full results of the blood tests. It almost feels as if a certain reality is being forced upon me.

It's been like that for the past thirteen years, basically. And doctors have constantly proven other doctors to be wrong, and the reality which I'm experiencing incredibly more correct. Yet reality is nothing next to the opinion of specialists.

The one good thing which happened to me the past days was me meeting this woman and her father at the same hospital on Thursday during the pre-surgery work. She was also there to have a laparoscopy, in order to remove a cyst from an ovary. As it turned out, we lived pretty close to each other, so her father offered me a ride to the hospital on Friday, which I gladly accepted.

After our surgeries, this woman and I shared the same room as we recovered over the next two days. None of it was fun, but by being able to share our experiences, I think it became somewhat easier for us both. Being able to care for someone else at the same time as that I was recovering was a good thing, distracting me from my own issues. This woman also had a number of friends and family members come visit, with most of the chatting done in Spanish, which I found very interesting as well.

Through these visits, and by talking a lot with this woman and her father, I felt like I could slowly become immersed in this other world. A world of people who care so much about each other, who are doing their best to get through life, even leaving their country of birth - much as what I did - and making the best of things as they get alone. It made me feel happy that I could be a part of this, even if it was just for a few short days.

Now that I'm out of the hospital, it's back to the same old grind. Yet something has changed. It's hard to describe it, really. Maybe it's because the hopes I had before the surgery got dashed, yet without the leeway provided by the ambiguity of an MRI scan. With the images that were made of the laparoscopy, there is a lot which I cannot question about what is slowly forming into nan undeniable truth.

What maybe has changed is the realisation that after first having any possibility of me having a functional male side dashed in 2011 with the biopsy of the testicles that were removed, finding them to be essentially undeveloped, now something similar has happened for the possibility of a functional female side. Though I do appear to have something generating normal levels of female hormones, and I still have some kind of vagina, I do not have and will not ever have ovaries or a uterus. I'm nothing like a male or female. I'm something... else. Something... empty.

As if with every new revelation like this, I'm becoming something more agender, more asexual. Something of which I less understand what it is, or could be.

Together with this there is the fear that if there's indeed a monthly cycle, and uterine tissue that responds to it, then I essentially have what one could call the worst kind of endometriosis one could imagine. Something that just fills up the abdomen without nothing to guide it. Together with a closed-off vagina, that's pretty much a recipe for disaster. At this point it's just an unsubstantiated fear, however.

I wish I had a doctor who understood these fears, doing their best to investigate and alleviate such fears to get an outcome that made me somehow at peace with things. Not this constant battling and doubting of those who are supposed to be providing me with this help. I don't know what to believe, or who to trust any more.

Not just doctors, but people in general. The past days the contrast between me and this woman with whom I shared a few days of our lives couldn't have been more stark. I felt so weak and fearful, with her taking the initiative on a number of occasions, to ask something of the nurses and the like. Things which would have made me freeze up in terror just thinking of doing something wrong or improper.

I guess I felt somewhat jealous, as well. The idea of having a regular female body and just a common issue like a cyst. Not a host of questions, worries and maybe another batch of big surgeries. If I'm lucky.

Maybe I'm just too tired of trying to make sense of things any more at this point. It's gone far beyond merely trying to live my life, finding a job and a place to live. This goes to the very fundamentals of who and what I am. How I fit in with the whole. Once I thought I was just a male, which delusion got destroyed, to be replaced with the thought that I might be more female. Even though I will always look more like a woman, I guess I have to find a way to deal with this emptiness I feel inside now.

I need to figure this out. I need to make sense of this. I need help with this. Not people trying to force things on me. People who wish to help me feel better. Regain some of what I have lost.

The past days I have felt myself struggling with my emotions more and more strongly. Since returning to this apartment that I'm currently inhabiting and what somewhat feels like my old life, it's become even harder. I cannot seem to focus on anything but this emotional and psychological struggle now. It may destroy me if I fail to figure this out. What happens at the appointment in two weeks may make things much better, or much worse.

I don't think that anyone who wishes to help me can do so. I don't believe that anyone who can help me wishes to do so.

I cannot tell what may happen next. I will just have to live through this hell one day at a time. Trying to keep my sanity intact. Trying to stay myself. Whatever the heck that may be.

Is there hope for me? I'm doing my best, but I'm falling apart. Worse than before. Unable to define myself, unable to provide answers to questions, I remain stuck dealing with the same issues. Issues which I cannot resolve on my own. Issues which may require that my body first breaks down further before I get the required help and answers. By which time it may already be too late for the easy and best solutions.

I don't know. I don't know anything. I cannot deal with this. I don't know how I can keep living like this. I don't know whether I'm truly alive at this point. Do I even exist? Am I crazy? Maybe that's the only reasonable answer.



Tom Farrier said...

You strike me as one of the sanest and most "human" people I have ever encountered. So much of society is bound up in being male, being female, and how things should be between the two. You go past that.

How should people treat each other, beyond the external? You started life as a male, then trusted your feelings and subsequent medical observations to choose to live as a woman. The latter suits you well. Pictures you have posted over time show you becoming more comfortable and happier in that box, at least as far as the box itself is relevant. You are living proof that gender isn't the sum total of human existence.

You are attractive for being smart, funny, playful and kind, not just for being "pretty." Those traits should be equally attractive to whoever you want to be attractive to -- male, female or other.

So, you are not less. You are more. I read something interesting a few weeks ago that suggested that people on the autism spectrum may be the next step in human evolution for their cognitive gifts and heightened attention to details of the world around them. Maybe you are part of the same movement forward... something more or better than Human 1.0.

Think about it. Then smile, Squirrel Girl! I'd be proud to have you as my child for your gifts, and I'm always ready to read about -- and talk to you about -- your struggles and doubts. They're very human, too.

Conan said...

Just have some rest and don't do stupid things to yourself.

Your doctors are probably just preparing you for the worst. It's better than pep you up and then disappoint you.
(I guess if you have a rectovaginal fistula, and you had periods, with a closed vagina, then the blood would have flowed out of your anus periodically.)

Look at the brighter side. Probably the chronic pain will be alleviated.

And still, it's you or your body that decides. Now at least you have a chance to decide who you want to be. If you want to keep living as a woman, then with no ovary or uterus doesn't change it. There are a lot of trans women or women with cancer who removed their ovaries and uteri. If you want to live as genderless, then I guess in Europe it won't be a problem either. Isn't it EU standard that it's illegal to discriminate people due to their genders or gender choices? If you want to go back to live as a man, it appears that you don't need any surgery but simply HRT.
Not so many people are presented with such an opportunity to make a free choice.

Keep warm!