Thursday, 25 May 2017

Summary of my medical history

Since I now have an official medical coach, I needed to summarise my medical history so far, to help her make sense of all that has happened, been concluded and done so far. I must say that it's definitely an impressive list, if only in all the wrong ways.

Have a look, if you want:


2005

  • Realisation of being intersex.
  • First appointment at gender team at the VUmc in Amsterdam.
  • Second appointment after half a year (with psychologist).
  • Blood test supposedly shows normal testosterone levels (results not found in VUmc file).
  • External examination by gynaecologist, who claims to see ‘no signs of intersex’.
  • Last talk with psychologist before being dismissed.
  • Letter is sent to GP describing Maya as showing ‘unusual behaviour for a transsexual’.
  • Start of therapy at psychologist in Zutphen. First appointment psychologist describes Maya’s thoughts about being intersex as ‘delusional’.

2006

  • Psychologist keeps trying to convince Maya that she cannot be intersex, but should just go back to the VUmc and follow the transsexual protocol.
  • Maya relents and returns to the VUmc gender team.
  • Multiple appointments with psychologists follow. The one before last appointment, the psychologist promises that Maya can already start on hormone therapy and that the number of psychologist sessions can be drastically reduced because of the many sessions Maya has already had with a psychologist.

2007

  • The last psychologist appointment, all of these promises are withdrawn and Maya is told to follow the usual protocol of half a year of talks before any decision can be made. Maya gets angry, throws her belongings on the floor and leaves the room.
  • The members of the VUmc gender team talk with Maya’s mother, asking her whether Maya is violent towards her, or even physically abuses her.
  • After hearing of this, Maya cancels all outstanding appointments at the gender team.
  • Maya orders testosterone blockers and estradiol via the internet and starts hormone therapy on her own, supported by hormone level tests provided by her GP.
  • After a period of experimenting, Maya settles on 25 mg Androcur/day and 4 mg Progynova/day.
  • On December 21, Maya has her first MRI scan in a private clinic in Germany. This shows her to have both male and female genitals (closed-off vagina, no prostate).

2008

  • Maya’s GP sends MRI scan results to VUmc gender team. They immediately want to make an appointment.
  • Results of the first chromosome test on Maya’s white blood cells: show XY pattern.
  • At the VUmc, Maya is told that they didn’t see anything unusual on the MRI scans. They insist that she’s just a regular male.
  • Official first name is changed to ‘Maya’ from the male first name by a Dutch court on the basis of her clearly female appearance.
  • Appointment at the Erasmus hospital in Rotterdam. Leads to two MRI scans (September 11, November 6th). Both radiologist reports insist Maya is a normal male. Note is made of two testicles inside the scrotum, even though only one testicle ever fully descended.
  • Multiple appointments at AMC hospital in Amsterdam with endocrinologist and finally with a gynaecologist. The latter talks with members from the VUmc gender team and concludes that Maya suffers from autoparagynaecophilia, a term indicating that Maya thinks that she looks physically female, even though she is not.

2009

  • Start of appointments at second Dutch gender team in Groningen:
  • Denial of any intersex condition.
  • Insistence that Maya is physically fully male.
  • Refusal to communicate with the German doctors who first diagnosed Maya with an intersex condition.
  • Basic chromosomal testing (white blood cells, cells from inside of cheek) show 46,XY pattern.
  • Insistence that Maya suffers from gender dysphoria.
  • MRI scan at Onze Lieve Vrouwen Gasthuis hospital in Amsterdam (December). Radiologist report indicates no sign of an intersex condition.
  • Diagnosed with Post-Traumatic Stress Disorder by psychotherapist.

2010

  • More appointments at the second gender team, mostly with psychologist.
  • Examination by urologist of the gender team, including a painful examination of the urinary tract and bladder. Conclusion is that there’s no sign of intersex. Entire day filmed by Dutch documentary team.
  • Appointments at VUmc gender team, who offer to ‘turn her into beautiful woman’, but no physical examinations, just the transgender course.

2011

  • Suicide attempt using sleeping pills after a forced eviction. Maya wakes up in the ER and is taken care of by her mother.
  • Rejected by (Christian) GP due to her intersex condition.
  • Poor treatment by new GP leads to a black-out event (triggered by PTSD, possible DID), during which Maya is subjected to severe violence by police who were called onto the scene. Maya suffers bruised bone in her right leg, severe bruising and peripheral neuropathy.
  • Attempts to get help at John Hopkins Medical in the US, is rejected because ‘they don’t do sex-reassignment surgery’.
  • Appointment with urologist at hospital in Almelo, gets told to seek help in Germany, forget about The Netherlands.
  • Decision to focus on getting her legal gender changed, as her legal (male) gender does not match up with her appearance, which causes a lot of confusion.
  • Has surgery in Hamburg, Germany, whereby the testicles are removed via an incision on the lower abdomen. An exploratory incision is made in the perineum whereby the entrance of a vagina is found.
  • The biopsy of the removed testicles shows that they are underdeveloped, explaining the low testosterone levels and making clear that they never produced sperm.
  • The use of Androcur is no longer needed and is dropped.

2012

  • Maya’s legal gender is changed to ‘female’ based on the surgery’s findings of her having been born with both male and female genitals, using a never before used (1980s) Dutch law.
  • Beginning of pain and numbness sensations on right side of the body.

2013

  • Multiple appointments with a Dutch surgeon who specialises in reconstructive surgery, to determine the possibility of reconstructing the (closed-off) vagina.
  • MRI scan at the MST hospital in Enschede. Radiologist concludes that there’s no sign of intersex.
  • The surgeon refers Maya back to the VUmc gender team.
  • Maya moves to Germany.

2014

  • A reconstructive surgery is agreed upon with a German surgeon, but the surgery confirmation never comes and calls to the clinic go unanswered.
  • Multiple appointments at the university hospital of Tubingen. Physical examination by surgeon. Blood test: shows 46,XY pattern for white blood cells, normal SRY.
  • Another MRI scan is made, radiologist report indicates no signs of intersex.

2015

  • Appearance of linea nigra on Maya’s abdomen. Multiple appointments with gynaecologist.
  • Two MRI scans. The same radiologist first sees a healthy vagina, the second time no vagina or signs of intersex are seen.
  • Appointment at new endocrinologist. Multiple hormone level tests, with and without taking artificial estradiol. Maya’s estradiol levels without hormone therapy are found to be normal female levels.
  • Presence of at least one functional ovary is presumed, along with a monthly cycle since the age of 11.
  • Maya no longer takes any form of hormone therapy.

2016

  • Linea nigra vanishes.
  • Maya awaits updates on a possible surgeon contact.
  • Monthly pains are becoming very significant, along with increasing numbness in right leg.

2017

  • Surgeon appointment, with Maya referred to an intersex specialist. Surgeon is uncertain about Maya’s intersex condition.
  • Monthly numbness and pain spreads to the entire right side of Maya’s body.

Saturday, 20 May 2017

Accepting help also means accepting that one has a problem

The past days has seen the numbness and pain in the right side of my body virtually disappear again, as my body goes through the motions of its monthly cycle again. It's a nice week or so of respite from having to worry about me turning into a permanently crippled person. Because of this variation in the symptoms, I do not expect that the MRI scan in two weeks will show anything to be wrong with my brain or spinal column. Best to be safe, of course. Plus it's nice to have that tenth MRI scan achievement unlocked, I guess.

As the scope of the medical and psychological help which I'm receiving slowly expands, I now find myself with a psychotherapist for regular therapy for my PTSD and other traumas, another psychotherapist who acts as a medical coach to handle contact with clinics, doctors and so on. Getting proper communication out of this intersex clinic - my next target - is slow, frustrating and thus I'm glad that I now have someone who is doing all of that for me, after twelve years of me dealing with it directly.


All of this means a large number of appointments and both help, but also the constant confrontation with my problems. From PTSD, various traumas and other psychological issues which have build up over decades, to the twelve years of horrible frustration and maltreatment of my intersex condition which may now be causing these physical issues that are causing me chronic pain. Even without an active eviction case against me this would be a lot to deal with. Add that to the mixture, realise that a negative outcome in that case may push me to try my luck at suicide again, and the need for intensive therapy and other forms of support becomes very obvious.

Without the stabilising influence of my day job and my friends, I would most likely already have been put on suicide watch. As things stand, I'm already skirting pretty close to the point where my therapists would feel obligated to interfere.


Here again I am confronted with the stigma of mental illness: you cannot see it, so it cannot be there. Me feeling suicidal must therefore be a conscious choice, ergo I can just stop thinking that way. The reality of the matter of course being that I am not actually a person suffering from depression, but merely someone who has felt so threatened and has been repeatedly attacked by others for over a decade, that it has made the thought of continuing to live... unpleasant.

I just want people to leave me alone. I didn't do anything wrong. People should just do their job and act like decent human beings. The past twelve years have shown to me beyond a shade of doubt that most people are (unknowingly) evil or just don't care. This is not the world I'd want to live in. Thus I focus on the decent human beings in the world, but one can only ignore the former nightmare world for so long.


Maybe I just have terrible luck and have come across every single terrible excuse for a doctor, psychologist, landlord, 'friend' and what not. While going through therapy, I have to go back to parts of my life which I do not care to remember, as well as some parts which I would love to go back to.

I still don't know what happened when I was a young child that was traumatic enough that it completely changed my behaviour. All I know is that my traumas likely started back when I was almost too young to remember anything. Likely someone did something to me, just like with what happened to my cousin when her uncle and grandfather couldn't keep their filthy hands off her body and those of other young girls like her.

It may very well have been that I grew up basically from the age of five with the knowledge and expectation that people are horrible monsters, who will always seek to take advantage of you. It would explain why I have seemingly always felt so apprehensive of others since the age of six. Even though I have been consciously trying to change this since I found out about being intersex in 2005 - pushing myself to return to that extroverted personality that I had as a child - along the way I come across the same traumas which pushed me into becoming introverted in the first place.


All I can hope for at this point is that I can at least win the eviction case so that I do not have to deal with that any more. I feel my life is complicated enough already at this point without others making it more difficult simply because they're greedy and care not about their fellow humans.


Maya

Sunday, 14 May 2017

Who'll catch me when I fall?

Last Friday I noticed that after a meeting at work, my right arm had begun hurting quite a lot, along with numbness and strong discomfort in the entirety of my body's right side. Including the right side of my face. Even though I had been dealing with numbness and pain in my right leg and arm in some form for the past months (and years in a milder form), this was a disconcerting new development.

I didn't tell anyone about this issue, just went back to my place and took one, then another ibuprofen (800 mg total). After about half an hour the pain had decreased significantly and with an hour I was almost feeling normal again. Before the pain started decreasing, I feared that it might worsen to the point where I'd collapse and find myself in the ER again.


The numbness and pain in my body's right side just keeps increasing. The past months far quicker than before, progressing from just the numbness in the leg for a few hours and occasional pain in my right arm to a full week of an unusable leg and currently near-constant numbness and pain in the entire right side of my body.

On Tuesday I had a neurologist appointment for this issue, after my GP reserved an emergency slot for me. I now have an MRI scan scheduled of my head and neck region (tenth MRI scan, yay), to rule out any possible issues in that area. The neurologist does however think that something like endometriosis is more likely as cause, considering the cyclic nature of the symptoms. My hope now lies with this intersex clinic with which my psychotherapist and myself have been trying to get into contact with for the past months now, without much success.

Maybe the MRI scan will show something, but most likely not. Meanwhile I'm taking ibuprofen like candy as it's the only thing which actually seems to do anything about the symptoms. Exercise seems to make the symptoms worse, but sometimes lying in bed as well, which makes it hard to find an approach which always works. I have started again on the anti-conception pill in the hope that if it's indeed hormonal, it will reduce the symptoms. I should know soon whether this theory is correct.

Meanwhile it practically feels as if my body is splitting into two halves, with the right side slowly shutting itself down.


I have to wonder what the impact of excessive stress on this all is, as I'm still facing getting evicted out of this apartment despite not having done anything wrong. Except maybe not complain enough, apparently. The thought that there are people out there who quite literally would be fine with me dying on the spot (which would be cheaper than an eviction), and that there's no home for me out there is more than one can humanly bear.

What'll happen when everything goes wrong? I already know that if I am forced to find another apartment, or even pay a large sum of money, it'll destabilise me emotionally in ways which are more than just frightening. There'd be a real chance of me committing suicide. I know from experience that all it takes is to have access to an easy and acceptable method.

After months of excessive stress I don't really care that much about whether I survive or not. Between getting evicted, my body slowly failing and the intersex clinic between completely unhelpful so far, I don't have anything to live for. Not really.


I love my work and my hobbies, but it cannot stand against the incredible pain of being alive if all it means getting punished over and over again. Punished for being born intersex. Punished for following the rules. Punished for being an abject failure.

I expect to be evicted. I expect my body to fail me probably this year, rendering me a cripple or killing me. I don't expect there to be any help. I do not have the energy to fight to survive any more. I cannot deal with an eviction. I'd just give up. Live on the streets until I die. Because giving into fatalism is the only thing which I can do, along with punishing this horrible body of mine by hurting it for hurting me.

I need others to give me hope again. To make me see that life isn't only about suffering and death. That this body of mine is okay. That there's nothing wrong with me. That I do not have to fear landlords randomly kicking me out of rundown apartments for daring to complain about issues. That I do have a future.


I want to believe, but I cannot. All that I know, all that I understand, and all that I long for is this incredible sense of peace which I felt during those moments before I tried to commit suicide. I wish I hadn't failed. I so wish it all had ended already, six years ago. I regret failing at that more than anything. Next time I'll succeed at committing suicide. I promise.

So that I may finally find peace.


Maya