Saturday, 14 April 2018

Glimpses of a normal life

This whole intersex/medical thing is something which is like an annoying mosquito: even if you want it to just go away, it keeps coming back. Ignoring it will just let it get you in a different, nastier way. Me trying to ignore the chronic pain for a bit didn't work out so well. Since a few days it's back to the burning right side, numb and painful right leg and arm, along with the terrible abdominal pains, distended abdomen and lack of appetite.

Current suspicion is something like imperforate hymen [1] resulting in something like peritonitis [2], which would explain the distension of the abdomen and pains, along with the rest of the symptoms.

Even though I have been experiencing such pains for many years now, there has been very little interest from doctors. After the laparoscopy, two months ago, and the prompt dismissal by the gynaecologist of my problems being gynaecological in nature, there only really seems one plausible option for me to proceed, namely undergoing an examination by a proctologist.

To this end I have made an appointment for such an examination, scheduled for the end of next month. This will mostly focus on examining where the occasional bright red blood comes from, and whether signs of an anal fissure can be seen. If issues are found, then some kind of treatment will follow. It's unlikely that this will in any way detect the reasons for the abdominal bloating and pain, let alone fix it.

Despite the chronic pain and the way it drains me off the will to continue living, I have to keep believing that there is a way out of this situation.

Medically I can basically just wait for something to go wrong. If it is in fact peritonitis, then sepsis is a possible complication. Until then I am forced to continue with things as if nothing is wrong.

Currently this entails waiting for the results in the eviction case, which will likely see me being forced to find a new place to live along with a draining of my financial resources, seeking a new job and doing job interviews, writing a new reference book for Packt on embedded C++ development, along with stumbling ahead with my autobiography.

I so desperately want to believe that things can and will get better. That I will find a place to live where I am actually happy to be, that I'll find a job or occupation that will make me feel useful and appreciated.

That there'll be an end to this endless, merciless pain in my abdomen that makes my life into a literal living hell.

Along the way I keep meeting others who think that I will make it, who support me and want the best for me. It's tough for me to think about how I feel about life and existence in general. After more than thirteen years of doctors and psychologists treating me like trash, of suffering all types of physical, psychological and sexual abuses, along with incarnation and attempting suicide, I feel that I have tried just about anything that I can think of to make my life better, yet with me only getting punished for my efforts.

I also hate feeling like a victim.

I'm a victim of many uncaring, vile people. True. Yet there are other people out there. People who are so incredibly positive and supportive. People whose optimism I fear that I cannot live up to. Like this one person whom I met on Quora a while ago, and who has been doing his utmost to cheer me up, even going to the trouble of getting me better Japanese dictionaries than the ones I had, so that I have more fun doing translation work and generally using Japanese. To make my life that little bit brighter and more joyful.

There's also my best friend, who has been there for me during almost the entirety of those thirteen years. Despite his own problems, he always tries to be there for me, to cheer me up and make me see the brighter side of life. I'm not sure I could have made it this far without him and other essential people in my life, such as my mother.

I feel that I have to get out of this dark shadow of my medical issues and the horrors of living in German run-down apartments owned by vile landlords. That's all that is keeping me down and so unhappy. There is a way out of this. I just don't know how to reach it yet.

Just need to survive a little bit longer, I hope.



Monday, 19 March 2018

Depression and the expectation of pretending life isn't so bad

Years ago, my school organised a trip to the local film theatre, where my fellow students and myself would be watching a quirky Italian film called 'La Vita รจ Bella' [1]. Set at the beginning of World War II in Italy, it follows a young Italian couple and their young child. As the father is Jewish, he and his son are arrested and sent to a concentration camp. His wife - despite not being Jewish - decides to join him as well instead of staying behind.

The point where my classmates and I agreed the film took it too far was when the father began to pretend to his son that they weren't in a concentration camp, but actually there to be play a complicated game. While this could have been a heart-breaking collection of scenes, the way it was handled - with an absolutely disrespectful sense of humour - it completely ruined the mood of the film.

The jarring and forced attempts at brightening the mood with off-key humour became so grating that the most joyful moment of the film was when the father got discovered while sneaking around, and executed. After that the film reverted back to a far more fitting mood, and felt right again. Afterwards, we all felt that it was a shame that they had felt it necessary to force in those 'humorous' scenes.

That film raises the question of how far one can take hiding reality from a person, even if it's done with the best of intentions. As someone who suffers from severe post-traumatic stress disorder, my general outlook on life is rather bleak. Surviving and still living through more traumas tends to do that to a person. Regardless, it is standard procedure to tell someone like me that 'life isn't so bad', and 'just cheer up'. Or the worst one of all: 'things will get better'.

While some types of depression are due to the neurotransmitter balance in the brain having gone off-centre, many of those affected will be so due to external factors. When one has become fully aware of the situation which one is in, the very act of survival may lead to one becoming depressed. As the situation drags on, and survival appears to be all that is left, one's outlook on life becomes one of indifference, fatalism and worse. As one sees others live plain, boring lives, it makes one wonder what the point of being alive even is.

I do not think that my own problem is my outlook on life, or anything really to do with myself. Most likely I'm just really unlucky, with having been born intersex and gifted, suffering sexual and psychological abuse both as a child and again as an adult. Struggling through thirteen years of trying to find medical help for my intersex condition. Dealing with worsening chronic pain.

Then losing my job and facing an eviction, so that I'm losing both a place to live and my body itself. The situation seems hopeless.

As I then look around this world, I can see that Germany itself is a complete mess, both politically and socially. I don't really care to keep living here in this country. Yet where to move? So many countries with massive problems. Nowhere to just work a fun job and have a proper, quiet home. I'm still supposed to pretend that things aren't this bad, of course.

Germany has been an intense disappointment after the hope I felt when I first moved here, without real medical help, acceptance, yet with plenty of divisive and wrongful politics, people living on each other's lip and no real interest in changing things. The Netherlands I cannot move back to after all that doctors and psychologists did to me there. I won't find medical help or acceptance there either.

Within a matter of weeks I'll hear what the outcome of the eviction case against me will be. I expect having to pay lots of money in addition to what I have already paid so far, and be forced to leave the place with a couple of months. I don't care what others tell me to believe, I have years of experience to fall back on, and they tell me that I'll always get the raw end of any deal.

My therapist still expects that we can work on some old traumas and have me feel better. I'm not even sure I can trust anyone. I want to, of course.

I have a few friends whom I trust and where I hope that one day I can work up the energy to invest more time in them. Always 'later'. Survival comes first. Meeting people online can be a positive experience, though I have scared plenty of people away as they tried to befriend me and help me. I try not to be bitter, but I cannot help myself. Not with everything that is going on.

Am I supposed to bop myself upside the head and tell myself that I'm just being a silly ol' goose? That all I had to do all this time was smile and feel cheerful and optimistic. That life is all about your attitude towards it.

I actually remember feeling like that, about a decade ago, when I still had the hope that things would somehow work out. Yet things just worked out for the worst over and over. Every reprieve I seemed to get just led to another dead-end. I cannot bring myself to smile any more. Not at life at least. There are small moments which reminds me of the good times that were. Yet they will never come back.

I don't know where I'm headed with my life. I am too tired to try and steer it any more. I'm okay if it hurtles off the road and into a ravine or whatever. I did my best. I even tried to pretend that life wasn't so bad for a while. And I almost believed it. Yet life doesn't work like that. Life is ugly and deadly. Unless you were born in a lucky way, possibly even in a rich family.  Then you really have to try to screw it up.

I'm expected to smile and lie at the jobs office this week again. Promise the world, even though I know that I am incapable of doing anything more than what I'm currently doing, and got no real interest in just another job.

I don't know what I'm doing, or where I'm going.

Life isn't beautiful.

I cannot pretend otherwise.



Monday, 5 March 2018

The worst part about dying is when you still want to live

After last month's surgery I found myself struggling with thoughts regarding the futility of what I'm trying to do, with getting answers about and a resolution to my intersex condition. This along with the sense of emptiness after the last hope of getting an easy resolution got squashed. Nothing about my body is easy to explain or understand. Nothing seems to match up with standard physiology.

I spent so many hours just staring aimlessly at the ceiling while lying in bed, or looking at people around me, feeling even more distance between them and myself as ever before. The sensation was of losing myself even further. Naturally the gynaecologist saw fit to dismiss me as well when I next saw him, without so many as a referral or helpful advice.

Then, as I found ways to deal with this somewhat - along with the new chronic pain symptoms - I got an update from my lawyer for the eviction case against me. This in the form of a big pack of paper containing the summary of evidence in the case, which the court will use to decide on a ruling. First I thought it was the actual ruling already, then noticed what it was about. The request from my lawyer was to look through it and send in suggestions and corrections before the deadline in less than two weeks.

I cannot do that. I cannot open the document and read through it. I physically cannot do this. Merely holding this document had my heart pounding and me feeling like I was going to be sick. For the rest of that day I felt absolutely terrible. The past days little changed. The feeling was one of impending doom. The certainty that the game was up, and these past years of relative peace and quiet were about to come to an end, with forceful eviction and again the loss of all my belongings and money. Just like before.

Then, today I didn't feel as bad about it any more. I seem to have mostly stopped worrying. I still cannot look at the legal document, but the panicked feeling and feelings of terror have mostly subsided, to be replaced with something like acceptance.

Yet what it reminds me of is the similar sense of dread and terror the days before I was forced to leave a room which I was renting in 2010. These were the days leading up to my suicide attempt. Yet I wasn't feeling those panicked sensations when I decided to kill myself. Instead this decision was made when I calmed down. Stopped clinging onto the hope that somehow I could get out of the situation which I was in.

Stopped clinging onto the idea of continuing to live.

What is interesting is that if I ask myself right now whether I would be okay with dying right now, I could totally accept it. I don't really care either way any more. What happens will happen. I'm powerless to stop it anyway. My dreams and aspirations are useless. I can accept this now.

In some ways that's a tell-tale sign of an impending suicide: when someone goes from being depressed to suddenly seeming much happier and cheerful. That's the point where they have accepted that things won't get better, and that it is okay to let go of life. Of existing. Where one has made peace with one's inescapable circumstances. In some ways it's a really positive thing. To end life on a high note.

I have lost my body. Again. I will soon lose even more. Again. No matter what I do or try, I'll always slide back and have all my efforts nullified.

But that's okay. I don't care either way. I can accept this now.

I would like to stop fighting. I want my body to stop being a battlefield. I don't want to keep searching for a home that doesn't exist. I don't care if I'm giving up and surrendering. At least I'll be at peace.


Thursday, 1 March 2018

Where to go from here

When I first started this blog, I did not moderate comments on my posts. Before long, spam and later hateful messages forced me to start moderating each posted comment to filter out such junk messages before they'd be made public.

Such hateful comments on my blog and elsewhere used to hurt me quite a bit. The focus of these stalkers and kin appeared to be to make me feel as miserable as possible, usually by feeding the fears and doubts I was harbouring. Expressing those fears openly on my blog made this quite easy, naturally.

Yet when I got another one of such comments in the moderation queue this morning after a bit of a quiet period, it was interesting to note how little it evoked in terms of feelings. This was the comment, by some anonymous poster:

"When the docs themselves didn't find any female reproduction organs in your body, it means that you're just hallucinating about being an intersexual. And whole world already swayed and believed into your story without actually see a proof of your intersexuality. So stop making up story and doing something stupid to your body, before you share an ultimate proof we can't deny that you're an actual intersex."

Even ignoring the horrendous grammar and botched last sentence, the intention of this comment was clear: to hurt and confuse, to make me question everything that I am and so on. Yet instead it merely made me shake my head at how little such pitiful people understand of the situation. Too little to even properly hurt me.

The surgery back in 2011 and the biopsy performed on the removed testicles already showed that I never was a male, with virtually no testosterone and complete male infertility (no sperm-producing cells). My phenotype is also that of a female, including the shape of my pelvis and so on. This surgery also confirmed the presence of a closed-off vagina, which was the reason why I got my official sex changed so easily.

Last month's surgery further added to this that I do not have a developed uterus or ovaries, something which was already known from MRI scans and ultrasounds. It did not examine the vaginal area and nearby, which is where I am currently still experiencing severe chronic pain. What this surgery basically told me is that like I thought quite a few years ago already is that I was essentially born with just a penis and a vagina, but little else.

I also got the results this week of the cycle monitoring, for which I had blood drawn over a month, to see how my estradiol values fluctuate. The interesting thing here is that although the values are pretty low for a female (~18 - 31 pmol/L, relative to normal minimum range of ~98 - 176 pmol/L), it was with these natural values that my body exhibited the extreme PMS symptoms and formation of linea nigra when I was still taking estradiol as part of hormone therapy. This would indicate that my body is far more sensitive to estradiol than a regular woman.

I remember quite well how at the second gender team in the Netherlands which I visited I got prescribed hormones, with the estradiol in the form of these plastic patches. The dose for this was set by a doctor from this gender team, using the normal values for a male to female transgender person. Right after I started using those patches I began to suffer from intense motion sickness, severe aura-based migraines and so on. Likely this dose was many times higher than what I had determined worked for me using oral estradiol pills and regular blood tests.

I got this last batch of info at the gynaecologist this week, and now have photos of my insides to add to my collection. Unfortunately the gynaecologist does not want to look at the issues in the vaginal area, and did not wish to refer me to anyone else, insisting that it's not a gynaecological issue.

I am now yet again without any medical assistance and despite having learned a bit more about my body, the chronic pain and other symptoms are not letting up. As I type this, the inside of my upper left leg along with the groin area is super-sensitive, even painful to the touch. First on last week Wednesday did I suddenly feel something twist and shift in my lower left abdomen, causing intense pain.

Things seem to have settled a bit more now, but as my body works its way through its usual monthly cycle, there is again the sensation of fluids gathering in the vaginal area, accompanied by sharp pains, itching and general discomfort.

Honestly, I would love for all of this to be just an illusion. Sadly, reality isn't that kind to me. I would have picked being a regular male or female over being a hermaphrodite if it means being in this much pain and discomfort all the time, with doctors trying to be rid of one as quickly as possible.

What will I do next? I don't know. The most effective approach does not appear to be to seek out medical help, but to wait for something to go catastrophically wrong with my body. That way doctors are obligated to help, since they won't do anything out of the kindness of their heart, or because it is the right thing to do. Liability insurance is expensive, after all.


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.


Saturday, 10 February 2018

Living one's life at the mercy of others

On Thursday this week I had my 12th MRI scan. This one was a repetition of the 11th scan, in order to get a better look at a presumed site of inflammation in my spinal cord. For this contrast dye was required, which was a second time for me. After an hour-long wait in the waiting room of the clinic, I was allowed to go through the scanning routine.

Take of all clothing items, boots and the like which contain metal, change into a shift and walk to the MRI scanner. Lie down and get 'comfortable'. Get the needle for the contrast dye jammed into the large vein in my right arm. Nod as the use of the emergency signalling bulb thingy is explained. Get the sound-dampening headphones put on. Sensor-enhancing cage is placed around the head. Personnel leaves the room. One slides into the scanner and spends the next twenty or thirty minutes kind of dazing as the noisy MRI scanner does its thing.

With the contrast dye there's the warm sensation in one's abdomen and sometimes chest. Other than that it's all the same as every other time. Once the scan is done, one is slid out of the scanner, the sensor cage is removed from around one's head, and one is further extracted from the scanner bed. One walks back to the dressing cubicle, gets dressed again and waits in the waiting room until called by the radiologist.

The good news? With the enhanced resolution courtesy of the contrast dye there was no sign of any inflammation in my spinal cord. This means that next month I should get the all-clear from the neurologist. After three MRI scans, one lumbar puncture, a nerve conductivity and a visual stimulation test, any of the symptoms of pain and numbness which I'm experiencing are most likely not due to anything neurological.

This then shifts the weight of the medical investigation to my gynaecologist. During next week's appointment I hope to discuss the laparoscopy which he proposed, and hopefully plan it for this or next month. At this point the cause of my chronic pain and discomfort has to lie in my abdomen. The main question is what is happening.

That fluid is being produced every month seems certain. That I have a regular monthly cycle is clear to me, and the cycle monitoring using my blood hormone levels should provide further data on this. The questions then seem to revolve around what tissue is present in my abdomen that is responding to these varying hormone levels, where this fluid is being produced and where it goes to afterwards.

One of the possibilities the gynaecologist mentioned was a fistula (rectovaginal fistula [1] ), which basically means a hole formed between the vagina and rectum. This would allow fluids to pass from the vagina to the rectum, and vice versa. That there is regular damage occurring to the inside of the rectum since I was a teenager has been established at this point. This might be an underlying cause.

If what underlies the symptoms of pain and distension in my abdomen - as well as the numbness and pain in my arms and legs - is the formation of such a fistula, caused by the trauma from fluid gathering in the (closed-off) vagina, then this should be easy enough to spot with the laparoscopy. The solution then would be to create an exit for the fluids, meaning creating an exit for the vagina by attaching it to the perineum, creating a regular vagina, even with fanciful labia and everything.

That way the fistula could heal up, I would just have to mess around with tampons and such wonderful things, but I would be free of pain and numbness. Beyond what's deemed acceptable for a regular woman, naturally.

I just hope that this laparoscopy thing works out. That it gets good results and any required follow-up surgery will be readily available. That it'll hopefully be the end of over thirteen years of looking for answers and medical help. That after the surgeries all I have to deal with is healing up and start processing the pain and traumas of about two decades worth of experiences related to this body and society's response to it.

I'm looking forward to telling my medical coach that I won't need any more 'help' from those 'intersex specialists'. Yet the anger and frustration I feel towards intersex 'specialists' and intersex organisations is something that will take a lot of time and energy to process and give a place. The realisation that all of those were utterly useless and a complete waste of time, that all I needed to do was to wait for my body to start suffering symptoms so that I could go to proper doctors and specialists who actually do have a clue.

My body is no different from that of a regular woman. They too suffer development issues of the vagina, fistulas, fissures and so much more. I should never have needed 'special' doctors. That's the take-away message for me here. I'm sick of what ultimately comes down to discrimination.

What stresses me even more than all of the above is the realisation that in addition to all of that, I also have to somehow manage getting a new job, find a new home to move into, deal with the job office in the meantime, and wait to hear what the court will decide in the matter of the eviction case against me.

Honestly, I don't really have the energy to care about any of it at this point. The medical stuff and constant pain management is more than enough already. I regularly communicate with headhunters about potential new jobs, of course, but it is so hard to commit myself to anything when I don't even know how my health will hold up over the coming months, or what will come out of any surgeries.

What'll be the right choice to make? When will I be available for a new job? I don't know. At this point I cannot function any more without constant painkillers. The hoped-for surgery should resolve this, but at this point that's nothing but wishful thinking, more born out of desperation than out of cold reality.

Not to mention the possibility of surgical complications. I just cannot tell. Yet it's not easy to communicate this to others, even if it are those others who will decide over my life the coming months.

It feels so incredibly lonely and terrifying.



Saturday, 27 January 2018

Preparing for my next surgery

Earlier this week I had what might have been the most anticipated event for me this month. I didn't expect that much to happen at the neurologist, and other than having a redo of the last MRI scan of my spinal column (this time with contrast dye), it seems that this will be the end of that course of investigation. No, the biggest wild card, medically speaking, was my appointment with the gynaecologist.

It's been about two years since I last talked with this gynaecologist, and a lot of things have happened since that time. Things such as the big physiological changes my body underwent in those years - particularly my ovaries finally kicking into gear - along with my current set of complaints (distended abdomen, regular sensations of fluid gathering and things rupturing in the vaginal area. This probably helped to get things right down to business.

An ultrasound showed that at least I do not appear to have ovaries in the expected location for a plain old woman. To gather more data on my cycle I'll have blood taken for a couple of weeks in order to see how the hormone levels fluctuate during that time. Then, at the end, the gynaecologist suggested a more extensive procedure. Namely a laparoscopy of the abdomen.

This would involve the gynaecologist making small incisions in my abdomen, to allow for a camera and tools to enter the abdomen. The goal of this would be to explore the organs and tissues present and take biopsies of relevant tissues. Ideally this would allow the gynaecologist to see exactly what is going inside my abdomen, and settle the question of which organs I have/do not have once and for all.

The coming weeks it should become clear when this procedure will take place. I fervently hope that this will definitively answer the question of whether I have a vagina which is usable for re-attachment to the perineum, while also putting to rest any fears I have about cancer and other potential issues which might be underlying my current health issues.

The procedure itself would be easy. I'd be put under completely, so after an hour or so I'd be waking up again to learn of the results and be able to leave the hospital the same day. With some luck those results would allow me to finally find that reconstructive surgeon for the final surgery. Hard to get better pre-surgery information than the video and biopsy results from a laparoscopy.

Who knows, maybe this will be the year when this 13-year old medical drama that is my current life will finally come to a (happy) end?