Wednesday, 14 May 2014

Second Opinion On Surgery And DSD Makes Me Into A Freak

Yesterday I went to yet another hospital, again for my intersex condition, specifically to get a second opinion on the reconstructive surgery. To get the most pressing questions out of the way: the surgeon there thinks that she can likely not perform the requested surgery, but she is most definitely prepared to run all of the tests and perform all the examinations to get as much data and options as possible. This means that I'll be coming back to this hospital on the 12th next month for my first MRI scan with contrast dye. She'll also request the surgery report for my earlier surgery in 2011. They're doing all of the usual blood work and running some genetic testing on said blood as well, probably confirm the Dutch results of XY chromosomes and intact SRY gene.

The journey itself to and from the hospital was fine, with a single transfer in Stuttgart. The weather was partially sunny with some showers and at times a stiff, cold wind. By the time I arrived at the clinic it was sunny, however. I took this as a good sign, in which I was largely proven right. Naturally I was completely exhausted by the time I got back home in Karlsruhe.

It was not too hard to find where I had to go at the hospital. I had to ask at the front desk where to go initially - which I managed to do in German - but otherwise I quickly found myself in the right location. There I met the physician with whom I had had email contact. After a chat in which she asked me a lot of questions she took some blood and led me to the surgeon whom I met after waiting for about half an hour in a waiting room. Said half hour passed rather quickly as I started chatting with an older woman there who probably had heard me talk English with the physician. She enjoyed speaking English with me as she had grown up near the American airbase of Ramstein where she grew up amongst native English speakers. This was a pleasant interlude.

The meeting with the surgeon was brief and to the point. After some questions from her side I underwent a physical examination during which the surgeon concluded that I did indeed not have a prostate and also that the urethra followed a route more like what one would expect to find in a male. According to her this would make an incision in the perineum quite risky as it would put the urethra near the incision. The surgery report from Hamburg should help clear up how things look there exactly and how they dodged this risk. At the very least my request to not remove the penis was met by mostly nonchalance. Though unusual, it would not form an issue during surgery but instead make things a lot easier due to having to relocate fewer structures.

One thing which I found to be quite enlightening as well was that the skin of the scrotum can most definitely be used to make labia without having to destroy the penis in the process. At least the surgeon was quite certain of this.  This is definitely something which should be discussed with the surgeon in Erding if I do decide to have surgery there. There's one more surgeon I am waiting on to hear his opinion. Hopefully before the end of next month it will become clear what my choices are.

The only thing about yesterday which I can truly call negative was that they actually used the term 'DSD' at the hospital. For those who don't know, this stands for Disorders of Sex Development and is the term used by anti-intersex individuals to stigmatize a generally benign medical condition. When I told the first physician that I really didn't like them using it, she said that they 'had to use something'. Today I actually wrote her an email with some information and questions in which I also requested that she didn't use this term any more to refer to my condition, but 'intersex' or 'hermaphrodite' instead. As reasons I indicated that it triggers my PTSD and that it's neither well-accepted as term in the intersex community nor medically accurate. One can only designate a vanishingly small number of intersex conditions as disorders, after all, such as the one muscle-degenerative type of AIS.

To be honest I'm still very upset about this use of a term which to me essentially represents everything bad I have encountered related to my intersex condition. From brainwashing attempts so that I'd consent to a 'normalization' therapy to other assorted attempts to make me believe or see things differently from how they truly are. This surgeon also has regular contact with the gynaecologist at the VUmc gender team in Amsterdam, the same place where I suffered the worst of my PTSD. Now, I know this gynaecologist in a more or less personal manner and I don't think he's bad - not like the rest of this team - but I find it hard not to feel terror at the thought that maybe he'll convince the surgeon that I'm just a nutcase and that a normalization surgery to make me into a regular male/female is what I really need/want.

It's the persecution syndrome which I just cannot shake of. Not after ten years of actual persecution, brainwashing and harassment by the Dutch medical system. The DSD designation just confirms for me that I'm being seen as physically ill. Crippled. In need of medical care to 'fix' me. All my efforts every single day to feel healthy and normal get wiped away like that. I'm not normal. I'm not healthy. I'm sick and handicapped. I cannot live without a normalization surgery to 'cure' me of my intersex 'disorder'. It's a horribly pervasive thought which I simply can not fight against. Not when the whole system is set up against me. I can fight and resist, but in the end they will naturally win and I'll meekly undergo a normalization surgery to make me 'normal'. Because I'm so obviously a sick freak of nature with severe medical issues, I just refuse to acknowledge it.

It's so tempting to think that if things do not work the coming months I can take back control of my life and simply terminate it. I'm so sick of others playing with my life, manipulating it to fit their own sick, twisted ideas of how the world is supposed to look. I'm just a toy to them.



Russell McCarten said...

As always, my thoughts are with you. I think you trust your instincts. Continue to do so. You make all the calls, nobody else. Be well!

progkix said...

My thoughts are with you Maya. I truly hope you find what you are seeking.

I am trying to understand more of your situation as I have not yet read all your blog posts.

You are attempting to become "female" - that part I understand.

What I do not understand is why do you want to keep the penis. If your desire is to be female, why keep any reminder of the "male"?

I certainly hope you don't think I'm insensitive to your situation. I'm just trying to understand it better.

Maya Posch said...

@progkix: Thank you :)

The reason that I do not want to get rid of the 'male' genital is that I see it as a part of myself and I do not dislike it. I regard myself as a woman, yes, but also as a hermaphrodite. This means that to me it's perfectly normal to have both male and female genitals and I do not wish to compromise this identity.

I also do not seek any kind of sex-reassignment surgery for this reason and have only sought to find the best balance for the body I was born in. I never had the feeling that I was living in the wrong body, just that something was a little 'off' with it. This was the hidden female genital and the fact that I have a primarily female body. The former I'm trying to have reconstructed now.

Anonymous said...

Hi Maya-

I watched a documentary tonight that raised my awareness of intersex condition. Although I was somewhat aware that the condition existed, I didn't previously know much about it.

I did a quick internet search to learn more and found a lot of information you've posted. I want to let you know that I appreciate your story. The grace and authenticity with which you share it is impressive.

Reading the last paragraph of this post made me sad. Losing someone that has such a strong ability to communicate so well would be a loss. You're needed.


OTaylor said...

I'm glad to see that you are receiving support both here and on facebook during what must be a very difficult time for you. I actually came here via a blog post on Qt that I was referred to by a friend. To say that upon reading your personal blog I was overwhelmed by the courage you've shown in facing and overcoming the challenges life has thrown at you would be understating things. I haven't read the full extent of your blog, but I hope you are proud of all the things you've accomplished in your personal and professional life and never forget all that you've accomplished.

I was deeply moved by reading your experience at the hospital. I'm rather ashamed our fellow human beings would demonstrate such a lack of compassion - especially when it must have been clear that it was causing you discomfort. I can only hope that in time we come to learn that we are all differently formed and no one is better or worse than another.

I'm sure others would agree with me that you should have no cause to concern about medical professionals in Germany subverting your wishes. The idea of anyone being forced to undertake any kind of gender normalisation or re-assignment surgery is an attack on the identity so grotesque that I have no doubt that there would be a thousand lawyers who would defend your right for self-determination until the constitutional court -- a place that has demonstrated that in Germany the rights of the individual far outstrip any agenda of the state.

You're an amazing person who in spite of everything you've been through you have an undeniable sense of self and identity. Whatever happens in the next few months I hope you remember that there's a muscle in your chest that has been working every second of your life since the day it began. _Literally_ fighting to keep you alive, it hasn't and will not give up on you and I hope you won't either.


(Sorry about the double post last time. I thought google failed to log me in and I got confused.)