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  • The last psychologist appointment, all of these promises are withdrawn and Maya is told to follow the usual protocol of half a year of talks before any decision can be made.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.

2 comments:

Zeta Syanthis said...

Oh man, this is just brutal. >.< There's no way you should have ever had to fight this hard. >.<

Unknown said...

I hope you are okay right now in this very moment.