Questionable intersexuality

I just found a letter in my mailbox from the surgeon who I visited in Munich last Thursday, containing a summary of his 'findings'. Forgive my French, but despite my rather more mild views of last week as I wrote them last Sunday, I find myself now thinking that this particular surgeon is a pretty impressive a*****e.

Despite not bothering to look at any of the documents sent to him over the past months and not interesting himself in my case beyond a casual glance during the half hour that I was there at the MRI scans and a singular fax with a basic summary, he still found it fit to conclude that my intersex diagnosis is 'questionable', that there's no evidence of endometriosis (suggesting that I just made it up) and concludes that when I am 'emotionally stable' I can come to him for 'normalisation surgery'.

In other words, he simultaneously denies me having an intersex condition, but still feels that he can 'correct' said intersex condition through surgical means. He also denies that I have any serious monthly symptoms.


Basically he thinks that I'm a liar and essentially crazy.


Despite me having a body with a definite female phenotype, a natural female hormone balance, a monthly hormonal cycle and basically not a single hint of me being even partially male beyond having a penis and XY chromosomes in some tissues, that all doesn't suffice. During the appointment he also insisted that because of the use of estradiol testosterone levels drop (untrue), which would explain why I only used a quarter of the testosterone blocker a male to female transsexual would use.

Basically this surgeon is just like every other DSD-supporting, genocidal, anti-intersex 'doctor' I have encountered over the years.


I can only hope that this new specialist isn't like that. Otherwise it's a dead end. At this point I feel more dissociated of my body than I have in a couple of years. I don't know what this stupid body is. I hate that I don't know it. It hurts to not know it. Feeling pain and numbness without knowing why terrifies me. All of it makes me want to hurt it out of fear and frustration.

I guess I must continue living. I guess. I don't know why. Not when it hurts. Not when people keep hurting me like this and denying me the right to even exist.

I'd still really like to die, though. Life isn't worth it. Not for me. Not like this. Not without any perspective on a future.


Maya

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.


Maya

To combine feeling both happy and suicidal

The worst feeling in the world is that of feeling hope.

My expectation for the coming weeks is that the new surgeon will not work out either and I'll be no closer to a medical resolution for my intersex condition than I was twelve years ago, and that the court will rule not in my favour in the eviction case against me, forcing me to move into another place - any place - within a month or two.

The hope of course is that the new surgeon will work out and I will finally get that resolution for my intersex condition after twelve years, and that the court will reject the eviction demand, allowing me to find that house without the added stress of an eviction deadline.

Balancing expectation and hope against each other when they're so far removed from each other is practically torture, also because if either or both of these expectations turns out to be true, it risks triggering the suicidal urges. These past weeks I'm struggling with depression, and through bouts of suicidal thoughts. At moments like earlier today I find myself questioning the wisdom of cooking dinner while upset and crying, as I have to keep myself from really considering plunging a sharp knife into my body.


I'm managing to stay stable so far because I mostly manage to ignore what's about to happen, and otherwise try to delude myself into believing that things will turn out fine. There are also the other things in my life which do make me happy, particularly at work.

This week at work I spent working on an embedded hardware (IoT) project, developing the software for it and working out the integration of the hardware. I also disassembled the Commodore 64 we have at the office and installed some heatsinks on its main chips (SID, PLA, CPU) so that they don't run so hot any more. I'm also working on a variety of other electronics projects.

These are all happy things, which help me to hang on to sanity as everything else in my life seems to be in a rather dreadful state. As I said in an earlier blog post, I would love to just destroy that part of myself: the part which has to struggle to find a home, the part which has an intersex body. The parts which are suffering so incredibly much.


Survival through ignoring reality and using happiness as a drug to escape harsh reality. I guess that's what it comes down to, still. According to the lawyer of the apartment's owner it's however all nonsense that I have PTSD, or that I am intersex and facing surgery this year. Maybe that's true. Maybe I really did not try to find a better place to live. Didn't try to find that home. Maybe I am crazy, like some Dutch psychologists told me.

I'm pretty sure at this point that I'm not crazy. That I'm a good person and do not deserve any of this which is happening to me. Also that I truly only wish the best for everyone. Yet I'm not sure that is enough. Maybe it's where I went wrong. Maybe this world is all about being mean, vicious and taking advantage of others. Maybe that's what I'm doing wrong.

Yet I'd rather be dead than turn into such a... person. My worst fear is that in the end those are my only two options. I'd much rather find that house outside of the city to move into, and get the surgery as hoped. Away from other people and finally back in my body.


I guess I'm pretty much just rambling at this point. I haven't slept properly in weeks and had countless, barely remembered nightmares. Even the stress during the day from worrying about all that I can expect is taking its toll on me. I pretty much hate having emotions and feelings at this point. I hate that people have so much power to hurt me and gleefully do so regardless of whether I have done anything to deserve it.

I only want to find that safe place, where people will finally leave me alone. Where I can do things which are actually interesting and useful. Not just survive in a dysfunctional human society.


Maya

A stable bad condition

All too often it feels to me as if having psychological and mental traumas and problems does not count in 'the real world'. As if none of it is actually real, or relevant. It makes me feel both frustrated and like a big crybaby when I have to do something others have no problems with, but which to me feels as fun as volunteering to be gang-raped.

It's for such reasons that it heartens me to get some kind of acknowledgement that I am not just imagining all of this and don't just try to guilt-trip other people into doing things for me. Still, when I read the official diagnosis my psychotherapist sent to my lawyer for the upcoming eviction court case, it's at the same time also horribly depressing.

Severe depression with latent suicidal tendencies. Post-traumatic disorder with flashbacks, nightmares and other severe symptoms. Also an intersex condition, which is of course linked into all of the previous. The hope of a reconstructive surgery after over a decade of working towards finding proper medical help and ending a quest which has taken up most of my life so far.


During my psychotherapy sessions I still have the same problems with really saying what I feel and think, the same as in daily life. I'm not supposed to make people aware of the fact that I'm not like them, that I have suffered traumas. That I have seen, lived through and barely survived things most people will never experience. No worries, I'm just a normal human, just like everybody else. Just look at my plastic smile :)

With the latest session I managed to finally channel some of the real, raw feelings that keep churning inside of my psyche. Primarily the disbelief, frustration and anger I feel at what happened back in 2005 and continued afterwards, when the gender team at the VUmc hospital in Amsterdam claimed that my blood contained normal male levels of testosterone, with their gynaecologist insisting that he had found no traces of me being intersex, and finally the head of the team - part of an international group of so-called intersex experts who drew up some protocols on handling intersex cases - concluding that I could not possibly be intersex.

It took just over a year after that last conclusion to get the German MRI results proving that I'm a hermaphrodite. The biopsy in 2011 proved that I could not ever have had normal male testosterone levels on account of having undeveloped testicles. Despite this the insistence by mostly Dutch doctors and psychologists that I was merely confused, crazy, delusional and/or transsexual.


I still cannot understand what they wanted from me. What they still want from me. To give into their fantasies and delusions and pretend to be transsexual? To follow their demands? To agree to be locked into a comfy, white, padded room? To die? Just what? I will never understand why they did what they did, and it hurts me so much. It made me realise just how little I mean, or my opinion. That truth is irrelevant and that there's no point in persisting.

Losing a place to live and facing homelessness was then the final trigger which made me decide to commit suicide. I'm still trying to come to terms with not succeeding at what seemed and at times still seems like the perfect solution. Being at a point where a hateful landlady tries to make me homeless at the same time when I'm struggling to stay hopeful about an impending surgeon appointment puts me practically in the exact same place where I was back then when I was on the verge of committing suicide.

It's hard to say what it'll take. The surgeon appointment being disappointing. A lack of cooperation. The court case working out poorly and me having to settle for whatever alternative place I can find on short notice, or something else negative. It's not that I want to die, or that I savour the thought of committing suicide. It terrifies me. Yet at the same time I know all too well that when such negative things happen, the pain will get so bad that I cannot simply suffer through it, or so it feels.


That last time I had access to sleeping pills, which in hindsight were a great choice as committing suicide with those is pretty hard and are unlikely to cause permanent damage. Without access to those I might opt for something more dramatic, like a knife. If I succeed, it'll be horribly painful and messy. If not, I might end up crippled in some fashion, which would feed my depression and latent suicidal tendencies even further.

At this point I'm more or less stable, in the same sense that one can balance oneself on a tightrope positioned over a canyon. That's not to say that this is a good or healthy place to be. I'd want nothing more than to continue on to the other side of said canyon, to solid ground and safety, yet whether that works out is down to what other people will decide over the coming weeks and months.


It's also depressing to consider that all which triggered this mess was me being born intersex and asking questions.


Well done, world. Well done.


Maya

Why I'll never take anti-depressants again

Two weeks of intense, near-constant headaches, followed by a complete flattening of emotions. That was my experience with the anti-depressant (citalopram) which I was on for a while, a number of years ago. If I have to detail why I decided to stop using it after about two months, I'd say that it was because it made everything in the world seem grey, dull and somewhat out of focus. It basically made me not care about anything.

When I say 'not care', I mean it exactly in that way: no ups or downs in one's mood, just a neutral 'meh' with as base point a definite 'whatever'. It was reminiscent of a dissociative state, where an emotional shock numbs one's emotional side for a while, with one's fight or flight mechanism kicking in. Incidentally that's also a highly unpleasant state to be in.


Recently the matter has come up again of whether it wouldn't be better for me if I was on anti-depressants, just so that I will not end up harming/killing myself, and not suffer so much emotionally and psychologically. To be quite frank, I think that's fully the wrong approach.

As I described earlier, being on SSRI anti-depressants is anything but pleasant for me. While on it I cannot feel anything, especially not positive feelings. When looking at what causes me to feel depressed, it's also clear that there are direct causes which can be fixed without a lot of effort. I just need a little bit of help.

The two main issues at this point are the medical help, including the surgery. Within two weeks I should have proper help there from a surgeon, which would hugely relieve the stress there.

The other issue is that of living in a run-down apartment and being sued by its owner for having the nerve to complain about this. Hopefully the court will soon rule that I'm in the right and give me the time I need to find something better. Here I am strongly considering looking to buy a house somewhere outside the city.

My main issues at this point are all caused and resolvable by other humans. Having to deal less with other humans and taking control back into my own hands should help a lot. I'm not convinced that deadening my feelings and emotions is useful here, and not simply a friendlier alternative to taking up a drugs or alcohol habit.


Yes, the coming months and maybe years will still cause me incredible emotional and psychological pain and suffering, but I will suffer through them somehow. As long as there's something positive which I can find joy in and which gives me that ray of hope and sunshine to get up again and give it all another shot. That's something which I feel I cannot do when stuffing those chemicals down my throat.

To me the solution is found in people simply being decent, responsible adults towards each other, with maybe a dash of childish fun thrown in for good measure. If people stop hurting me, I'll stop hurting, basically.

Life can be so incredibly simple.


Maya

Endometriosis and coming to terms with being a woman

For the past few days I have been suffering through the same chronic pain and related issues as basically every month. This mostly involves a bloated abdomen, lower back pains, stabbing pains in my side and abdomen, very painful hips and a loss of sensation in my right leg and arm. Of these symptoms, some (including a short temper) can at least be partially attributed to a regular period. The rest, especially the pain and numbness in the arm is most probably due to endometriosis.

Endometriosis is a condition whereby the cells which normally line the inside of the uterus end up elsewhere in the abdomen, attach to the diaphragm, or even travel through one's arteries to other parts of the body. There they still respond to the changes in hormone levels, growing and shedding material as usual. This can create pressure on other tissues, negatively affecting their functioning and causing pain and numbness by pressing on nerves.

Pain on one's chest, as well as pain and numbness in limbs are all possible symptoms. Treatment can consist out of hormone and other therapies, as well as surgery in order to remove the patches of tissue. It appears that this will be the next step for me after the upcoming reconstructive surgery.


At this point there's absolutely zero doubt remaining that I am a hermaphrodite and a woman. Yet my troubles are absolutely not over with just yet. Even assuming that the reconstructive surgery takes place and is successful, that still leaves me to deal with the diagnosis and treatment of the suspected endometriosis. Even as I type this, my right arm and leg feel numb, with a tingling sensation in the arm, along with painfully sensitive skin in some areas. Waking up with an arm which hurts like hell and which cannot be moved without severe effort is terrifying. Obviously I cannot just let this be.

I guess all of this wasn't quite what I had in mind, all those years ago, when I thought of my future. Yet what I feel most strongly at this point is a bitterness and anger towards all of those doctors and psychologists who just had to pretend to know better than me, and deny me the medical help which I so clearly need at this point. All of this should have been resolved a decade ago already.


Some day I'd like to just be done with this all, not having to keep begging doctors to please take me seriously for just once. For now all I can do is pray that the upcoming appointment with the new surgeon goes well, that he is interested and can help me with the surgery. Once that's over with, doing the endometriosis testing will suddenly become so much easier. That's the one small hope I have at this point.

Here's to a future without chronic pain.


Maya

Would you like to die?

Ever since I attempted to commit suicide in early 2011 and failed, that's the question which I have learned to ask myself to assess my state of mind. Sometimes the response to this question is a definite sense of revulsion, sometimes one of indifference. Sometimes of painful longing. Sometimes mixed.

Today I can feel the heavy feeling again, this sensation of weariness and exhaustion far beyond what the average person will ever feel in their entire life, or what can be captured using mere words. It's a weariness that's simply a weariness of life, when even one's primal sense of survival can no longer be felt. It's the acceptance of death when one is still physically healthy.


It's not a feeling I care for in the slightest. Six years ago I was able to find a way out through an overdose, or so I thought. This year I'm hoping to find a way out by finding a home and by closing the medical chapter on my body after a few decades of suffering. I hope that this attempt will be more successful than me trying to take my own life.

I guess the worst feeling that accompanies this quiet longing for the cessation of one's existence is that of being a failure, of having failed as a human being, as an individual and something even more fundamental.

It's not that one wants to die. It's merely the acceptance that for some people even merely existing is simply no longer an option.


Yes, I would want to cease existing right now. No, I do not want to die. I just want the pain of existing to cease.


Then I would want to resume doing all the fun things in life. All the things which do not hurt.


To continue living in a world where people do not hurt each other.


The world which I failed to find.


Maya