In previous writings I have mentioned this 'second puberty' that I felt that I was experiencing, but after looking it more closely, it's more of an excessively drawn out puberty. When using the commonly used Tanner scale [1][2] and putting it alongside the symptoms which I have noticed since the age of 11, I can now clearly see the struggle my body went through over the decades.
Age 11 was when I noticed early breast development, along with my hips beginning to widen. Over time both this female and male secondary development slowed to where I was left in essentially in a Tanner III stage, with neither full breast development nor any of the typical male characteristics, aside from the development of penis. As the biopsy of the removed testicles in 2011 showed, they had never entered the spermagenesis stage of development.
At this point in time, the female side of my body appeared to be stuck in a Tanner II or III stage when it came to the breasts, but with no clear development of the vagina into the multi-layer structure yet [3], as judged by the near-dozen MRI scans that were made of that region between 2007 and 2014. These showed the vaginal structure in the lateral views, running from the perineum to the top of the bladder, but without the characteristic 'H'-shaped structure when looked at it in the top-down views.
The clear presence of a vagina indicates that the testicles while present did not produce sufficient Anti-Müllerian hormone (AMH) to have terminated development of the müllerian (paramesonephric) ducts that would go on to develop the upper part of the the vagina, the uterus and surrounding structures. Though the top one-third of the vagina appears to be present in those MRI scans, a uterus cannot be distinguished on them, nor ovaries.
Clearly, the interesting thing is that after puberty ground to a halt in my early teenage years, it seems to have resumed again in 2015, 3-4 years after the late 2011 orchiectomy that saw those undeveloped testicles removed. This may hold clues as to why the hormone replacement therapy (HRT) (with estradiol) seemed to have very little effect on my body, despite being on it from 2007 to 2014. Some triggers appear to have been missing.
This led to the sudden estradiol overdose effect when the estradiol sensitivity of my body apparently became significant, with female development akin to Tanner IV and V taking place over the course of the past four years. Most noticeable being the significant growth of the breasts, going from a small A cup to a regular B (so far), in the complete absence of HRT, with seemingly my body winding its way through the Tanner V stage towards full maturation as an adult female. It's also noticeable in my hips and overall body and skin tone.
The abdominal swelling and suspected ascites that started around 2015 appears to be linked with this as well. As part of female puberty involves the enlarging and development of the vagina, uterus and ovaries, this could provide hints as to why I am having these pains and sensations of discomfort in my abdomen and perineum. Considering my unusual physiology, any such changes to organs and randomly distributed tissues in my abdomen could easily lead to ascites as abdominal tissues respond to these changes in a negative way.
What would be interesting at this point is to have a new abdominal MRI scan made, as the first scan since before the resumption of puberty. Could one now see an adult vaginal structure, including the multi-layer mucosa, surrounded by a bright, white line? Is the uterus truly missing, or did some vestigial tissues there respond and grow? What would have happened to the ovarian tissue that's likely also present in my abdomen, as evidenced by my natural estradiol cycle (recorded in early 2018 by a gynaecologist)?
At this point I'm on a low-sodium diet in an attempt to keep the ascites-like symptoms under control, which seems to have a positive effect. Heading back into the fray of the medical system is not something which I am looking forward to, however. Though my body is very clear at this point about finishing up the development of these secondary female characteristics, the medical system and the people in it doesn't appear to have evolved to the point where a hermaphroditic intersex person doesn't simply get laughed away as 'yet another transsexual'.
That's a trauma which I'm absolutely not looking forward to facing again, and is essentially the reason why despite me feeling practically pregnant with these ascites symptoms I haven't bothered to see a doctor about it again this year.
As for my body, I do hope that it will follow a natural course here. Simply finish up this whole puberty thing after what feels like a lifetime and leave me with nothing more serious than the issue of the still closed-off vagina and the monthly discomfort and agony. Though I am on a contraception pill now to suppress most of those symptoms, I'm well aware of this not being a fix but instead merely treating the symptoms.
Maya
[1] https://en.wikipedia.org/wiki/Tanner_scale
[2] https://www.healthline.com/health/parenting/stages-of-puberty
[3] https://en.wikipedia.org/wiki/Puberty#Vagina,_uterus,_ovaries
[4] https://en.wikipedia.org/wiki/Anti-M%C3%BCllerian_hormone
Showing posts with label endometriosis. Show all posts
Showing posts with label endometriosis. Show all posts
Tuesday, 19 November 2019
Sunday, 23 September 2018
To struggle for survival
What I want my life to look like in the short to medium term: to live somewhere quiet, work a day job to make money, write books and work on my software and hardware projects in my spare time. Finally get those robotics, AI, asynchronous CPU architecture and similar projects into a usable state. Have my autobiography published and hopefully change forever life for all intersex people around the world for the better.
Instead, where I am now: being thrown out of my current apartment despite having paid all my bills and not caused trouble. Not having a job despite many months of applying and flying all over the world for on-site interviews. Struggling to finish my current reference book within the deadlines as the full-time job search and dealing with depression and bouts of suicidal thoughts make it almost impossible to be productive.
Each day my situation feels more hopeless. The hope for an easy resolution to my situation has died months ago. With each new rejection after a job application or simply a lack of response it becomes ever more clear that my existence is optional and in no way required or essential.
But to survive is not about feeling comfortable. It's about still dragging yourself forward through the mud and freezing rain even after you have broken both legs, had an arm crushed, running a fever and almost delirious from the pain. All in the hope that things will get better if you keep going. For how long? Until you collapse and die.
While trying to find a job and with it the relocation help I seek, I am ignoring the worsening physical pains and warning signals by my body. At this point endometriosis seems almost certain, with peritonitis (inflammation of the lining of the abdominal wall) providing a clear explanation for the generalised abdominal pain and extreme abdominal swelling at the end of each monthly cycle. This in addition to the extreme and localised pain in the perineum around the same time, which would also be triggered by the blood and/or other fluids that get released.
Of course I have tried to find help for this during the past years, but without luck. And now the symptoms just keep getting worse, possibly also due to the stress that I'm under as a result of my current situation.
What will happen next? I do not know. I may get lucky and my wish for a more quiet, predictable life may come true next week after yet another on-site job interview. Or not, and I can keep struggling to somehow find that way out of this Hell. Yet I am terrified of this dark side, this voice that keeps pushing me to admit defeat, to give up and terminate this impossible existence.
Am I meant to exist? Hermaphroditic intersex people like myself are very rare, because most times embryos merge like that, a miscarriage results.
I don't even know what I am. Who I am. I'm still in the process of trying to make sense of this body of mine. Of what has happened so far. To somehow deal with the trauma of the past years, even as I try to move forward.
What's fair?
This is survival. There's nothing fair about surviving. It's when everything has gone wrong to the point where one's existence has practically been lost already.
I want to survive this. I want to move on, to move forward, but the deck is stacked against me. With the incredible physical and psychological pain combined, this makes it seem all too tempting to give up. That's my fear.
Like seven years ago, when I also found myself in a similar situation, I didn't know what to do and everything was hurting. That was when I remembered the two boxes of sleeping tablets which I had in my room. They were the only real way forward which I could see. I was so happy that I had found a solution. Something which I could do, instead of just letting things happen to me.
I slept really well after I realised this. The next morning I got up all cheerful and feeling extremely calm and at peace with everything. The pain and agony that I had been feeling inside for what seemed like years had all vanished. There was no hesitation as I took all of the tablets out of their packaging and swallowed all of them with some water.
I still feel that things should have ended there. Me having been born still feels like a mistake. Me not dying seven years ago feels like a mistake.
Yet I still want to live. I just want... no, what I need to live is for all of this pain to be taken away by others. The pain of being unwanted and unneeded, of being the cause of problems and just a collection of unfulfilled promises and regrets. For people to trust me, instead of seeking to betray and discard me. To accept that I have a traumatic past, but that things will be fine once I'm in safety.
If not, then there is no stack of sleeping tablets available to me. Yet the temptation remains. I don't know what may happen if this dark, traumatised part takes me over again. The point where I will have lost the fight to exist in society, in this life and also the fight against the traumas from my past.
Even as I prepare for yet another attempt next week to make this future I want work out, I notice how much my attitude has shifted over the past months. From feeling hopeful and quite certain that things will work out, to pessimistic and downcast in addition to feeling exhausted as I struggle to care about the fact that I am still alive. And still surviving.
Maya
Instead, where I am now: being thrown out of my current apartment despite having paid all my bills and not caused trouble. Not having a job despite many months of applying and flying all over the world for on-site interviews. Struggling to finish my current reference book within the deadlines as the full-time job search and dealing with depression and bouts of suicidal thoughts make it almost impossible to be productive.
Each day my situation feels more hopeless. The hope for an easy resolution to my situation has died months ago. With each new rejection after a job application or simply a lack of response it becomes ever more clear that my existence is optional and in no way required or essential.
But to survive is not about feeling comfortable. It's about still dragging yourself forward through the mud and freezing rain even after you have broken both legs, had an arm crushed, running a fever and almost delirious from the pain. All in the hope that things will get better if you keep going. For how long? Until you collapse and die.
While trying to find a job and with it the relocation help I seek, I am ignoring the worsening physical pains and warning signals by my body. At this point endometriosis seems almost certain, with peritonitis (inflammation of the lining of the abdominal wall) providing a clear explanation for the generalised abdominal pain and extreme abdominal swelling at the end of each monthly cycle. This in addition to the extreme and localised pain in the perineum around the same time, which would also be triggered by the blood and/or other fluids that get released.
Of course I have tried to find help for this during the past years, but without luck. And now the symptoms just keep getting worse, possibly also due to the stress that I'm under as a result of my current situation.
What will happen next? I do not know. I may get lucky and my wish for a more quiet, predictable life may come true next week after yet another on-site job interview. Or not, and I can keep struggling to somehow find that way out of this Hell. Yet I am terrified of this dark side, this voice that keeps pushing me to admit defeat, to give up and terminate this impossible existence.
Am I meant to exist? Hermaphroditic intersex people like myself are very rare, because most times embryos merge like that, a miscarriage results.
I don't even know what I am. Who I am. I'm still in the process of trying to make sense of this body of mine. Of what has happened so far. To somehow deal with the trauma of the past years, even as I try to move forward.
What's fair?
This is survival. There's nothing fair about surviving. It's when everything has gone wrong to the point where one's existence has practically been lost already.
I want to survive this. I want to move on, to move forward, but the deck is stacked against me. With the incredible physical and psychological pain combined, this makes it seem all too tempting to give up. That's my fear.
Like seven years ago, when I also found myself in a similar situation, I didn't know what to do and everything was hurting. That was when I remembered the two boxes of sleeping tablets which I had in my room. They were the only real way forward which I could see. I was so happy that I had found a solution. Something which I could do, instead of just letting things happen to me.
I slept really well after I realised this. The next morning I got up all cheerful and feeling extremely calm and at peace with everything. The pain and agony that I had been feeling inside for what seemed like years had all vanished. There was no hesitation as I took all of the tablets out of their packaging and swallowed all of them with some water.
I still feel that things should have ended there. Me having been born still feels like a mistake. Me not dying seven years ago feels like a mistake.
Yet I still want to live. I just want... no, what I need to live is for all of this pain to be taken away by others. The pain of being unwanted and unneeded, of being the cause of problems and just a collection of unfulfilled promises and regrets. For people to trust me, instead of seeking to betray and discard me. To accept that I have a traumatic past, but that things will be fine once I'm in safety.
If not, then there is no stack of sleeping tablets available to me. Yet the temptation remains. I don't know what may happen if this dark, traumatised part takes me over again. The point where I will have lost the fight to exist in society, in this life and also the fight against the traumas from my past.
Even as I prepare for yet another attempt next week to make this future I want work out, I notice how much my attitude has shifted over the past months. From feeling hopeful and quite certain that things will work out, to pessimistic and downcast in addition to feeling exhausted as I struggle to care about the fact that I am still alive. And still surviving.
Maya
Monday, 25 December 2017
Everything begins and ends with one's body
The moment that one is born and becomes conscious, the world begins.
The moment that one's body falters and dies, the world ends.
Everything in between is coloured by the health of one's body.
I remember how there was a time when I could walk without pain. I remember how I wasn't concerned every few minutes with new, interesting pains or the general state of my body. That seems all so long ago now. Part of a past in which there was still sunshine, a home and happiness. Not this bleak dystopian present with a faltering health and more hospital and ER visits than I care to remember.
Next month another three doctor visits have been scheduled, with my GP, neurologist and gynaecologist. My endocrinologist also asked to remain informed, along with a second gynaecologist. Next month is also planned full with psychotherapist appointments, with my second psychotherapist (and neurologist) likely wanting updates or maybe getting me some updates. I don't want to harbour hope that this time something will change. Yet it must.
After giving up on the contraceptive pill, ibuprofen and mostly on diclofenac, I have now found a temporary pain reprieve in CBD - cannabidiol, a cannabinoid extracted from cannabis. I'm slowly beginning to understand why medical marijuana is a thing. CBD manages to knock down the daily pains and numbness a few notches to where I can somewhat function and focus again. Yet it's not a solution.
The pain, sensitivity and numbness that used to just plague my right side has been gradually spreading to my left side as well. It doesn't go away in between monthly cycles any more either. I still don't know what causes it and how much internal damage I'm possibly suffering each day that it is not being treated.
Today is Christmas. Yet I'm not feeling very cheerful. Not when one has to confront such comforting thoughts such as this possibly being my last Christmas. With the enthusiasm doctors have shown for my case so far, I am not hopeful that they'll get to the right conclusion in time if what is happening to me turns out to be fatal. And even if it's not, I might end up paralysed or incapable of functioning any more without extreme painkillers, judging by how my situation has progressed so far.
Being in this much pain and discomfort, along with frequent nausea, dizziness, headaches and a near-complete lack of appetite make that just maintaining my body to keep to the status quo as much as possible is taking nearly all of my attention and energy.
Sure, I'm also supposed to find a new job, and I might get kicked out of this apartment soon, but first things first. If my body isn't doing well, then that makes everything else seem rather minor. It's amazing how intense pain refocuses one's priorities, I guess. If survival takes becoming homeless, then that's a price worth paying. I think. Yet being dead because one didn't prioritise one's body over everything else is also such a bummer.
For the coming months I pray that things somehow work out. That the doctors do take my condition seriously and that the cause of these pains and numbness is found and treated. That the new job thing works out and that I may even find a real home again in the process. That my daily life will no longer be darkened by having a faltering body.
Hoping for the kindness and understanding of others, I guess.
May the gods have mercy on my soul.
Maya
The moment that one's body falters and dies, the world ends.
Everything in between is coloured by the health of one's body.
I remember how there was a time when I could walk without pain. I remember how I wasn't concerned every few minutes with new, interesting pains or the general state of my body. That seems all so long ago now. Part of a past in which there was still sunshine, a home and happiness. Not this bleak dystopian present with a faltering health and more hospital and ER visits than I care to remember.
Next month another three doctor visits have been scheduled, with my GP, neurologist and gynaecologist. My endocrinologist also asked to remain informed, along with a second gynaecologist. Next month is also planned full with psychotherapist appointments, with my second psychotherapist (and neurologist) likely wanting updates or maybe getting me some updates. I don't want to harbour hope that this time something will change. Yet it must.
After giving up on the contraceptive pill, ibuprofen and mostly on diclofenac, I have now found a temporary pain reprieve in CBD - cannabidiol, a cannabinoid extracted from cannabis. I'm slowly beginning to understand why medical marijuana is a thing. CBD manages to knock down the daily pains and numbness a few notches to where I can somewhat function and focus again. Yet it's not a solution.
The pain, sensitivity and numbness that used to just plague my right side has been gradually spreading to my left side as well. It doesn't go away in between monthly cycles any more either. I still don't know what causes it and how much internal damage I'm possibly suffering each day that it is not being treated.
Today is Christmas. Yet I'm not feeling very cheerful. Not when one has to confront such comforting thoughts such as this possibly being my last Christmas. With the enthusiasm doctors have shown for my case so far, I am not hopeful that they'll get to the right conclusion in time if what is happening to me turns out to be fatal. And even if it's not, I might end up paralysed or incapable of functioning any more without extreme painkillers, judging by how my situation has progressed so far.
Being in this much pain and discomfort, along with frequent nausea, dizziness, headaches and a near-complete lack of appetite make that just maintaining my body to keep to the status quo as much as possible is taking nearly all of my attention and energy.
Sure, I'm also supposed to find a new job, and I might get kicked out of this apartment soon, but first things first. If my body isn't doing well, then that makes everything else seem rather minor. It's amazing how intense pain refocuses one's priorities, I guess. If survival takes becoming homeless, then that's a price worth paying. I think. Yet being dead because one didn't prioritise one's body over everything else is also such a bummer.
For the coming months I pray that things somehow work out. That the doctors do take my condition seriously and that the cause of these pains and numbness is found and treated. That the new job thing works out and that I may even find a real home again in the process. That my daily life will no longer be darkened by having a faltering body.
Hoping for the kindness and understanding of others, I guess.
May the gods have mercy on my soul.
Maya
Sunday, 17 December 2017
I must find that exceptionally challenging and rewarding job
I must. That's pretty much the summary of everything that is going on for me at this point.
For the chronic pains for which I must find medical help. For the worrying appearance of blood in my stool accompanied by the sensation of something rupturing inside my abdomen, for which I must also seek medical help. For the flaring up of my post-traumatic stress disorder and dissociative identity disorder-like symptoms as a result of the increasing stress I also must find more help and support.
For having been laid off from my job I must find a new job. For being jobless I will have to deal with the job centre starting next month and have to apply to at least so many jobs each month, or lose the welfare money. For being jobless I must find a job within a year or face deportation back to the Netherlands.
For fixing the apartment and eviction situation I must at least find a new place, for which I must first find a job. To rent or buy a new place, I must have a job.
All of this leaves me jobless, with chronic pain and psychological disorders which prevent me from functioning 'normally'.
I must fix it somehow. By myself. Even if it's impossible. Again I feel angry at myself for having wasted so many years on my intersex condition and backwards doctors without a shred of sympathy. I should have ignored it. Made a much more successful career. Then died in my 30s from sepsis anyway. Bugger.
It often doesn't feel as if there's any point to me fighting for myself any longer. It's just the same pattern every time. Few steps forward, then get kicked back to a worse position than before.
I realise that I could just settle for working a menial job at a dull company, but in that case I would have made it at my current employer as well, writing JavaScript or Java code until my brain started dribbling out of my ears from sheer boredom. I know that this won't ever work.
Ideally I would get a job in a more R&D position involving low-level software and hardware development. Working on interesting new technologies which will make the lives of everyone better. Something that can actually hold my attention. I already had to thank for a potential job offer this week because it'd just involve writing casual games (albeit in C++) all the time. I could do it, but would get distracted over time. That's what I learned about how my mind works.
My curse always seems to have been that I could never be 'just like others'. Not with my biological sex (hermaphroditic intersex), not with being just left- or right-handed (ambidextrous), not with my perception of taste (super-taster), or the way that I learn (100% visual-spatial learner, gifted & auto-didactic). None of this is my fault, all of this I was simply born with. Yet to then fit in regular society? Forget it. Been there, tried it, failed miserably, tried again and again until I finally learned that lesson.
I don't think that I would be happy in any other job than one which would challenge me intellectually and which appreciates me for being different. I guess I must keep looking... but I also hope that such a company is also looking for someone like me, and may stumble over my profile somewhere.
Can't hurt to hope, just to have that hope crushed, I guess.
Here's to that never-ending source of hope.
Maya
For the chronic pains for which I must find medical help. For the worrying appearance of blood in my stool accompanied by the sensation of something rupturing inside my abdomen, for which I must also seek medical help. For the flaring up of my post-traumatic stress disorder and dissociative identity disorder-like symptoms as a result of the increasing stress I also must find more help and support.
For having been laid off from my job I must find a new job. For being jobless I will have to deal with the job centre starting next month and have to apply to at least so many jobs each month, or lose the welfare money. For being jobless I must find a job within a year or face deportation back to the Netherlands.
For fixing the apartment and eviction situation I must at least find a new place, for which I must first find a job. To rent or buy a new place, I must have a job.
All of this leaves me jobless, with chronic pain and psychological disorders which prevent me from functioning 'normally'.
I must fix it somehow. By myself. Even if it's impossible. Again I feel angry at myself for having wasted so many years on my intersex condition and backwards doctors without a shred of sympathy. I should have ignored it. Made a much more successful career. Then died in my 30s from sepsis anyway. Bugger.
It often doesn't feel as if there's any point to me fighting for myself any longer. It's just the same pattern every time. Few steps forward, then get kicked back to a worse position than before.
I realise that I could just settle for working a menial job at a dull company, but in that case I would have made it at my current employer as well, writing JavaScript or Java code until my brain started dribbling out of my ears from sheer boredom. I know that this won't ever work.
Ideally I would get a job in a more R&D position involving low-level software and hardware development. Working on interesting new technologies which will make the lives of everyone better. Something that can actually hold my attention. I already had to thank for a potential job offer this week because it'd just involve writing casual games (albeit in C++) all the time. I could do it, but would get distracted over time. That's what I learned about how my mind works.
My curse always seems to have been that I could never be 'just like others'. Not with my biological sex (hermaphroditic intersex), not with being just left- or right-handed (ambidextrous), not with my perception of taste (super-taster), or the way that I learn (100% visual-spatial learner, gifted & auto-didactic). None of this is my fault, all of this I was simply born with. Yet to then fit in regular society? Forget it. Been there, tried it, failed miserably, tried again and again until I finally learned that lesson.
I don't think that I would be happy in any other job than one which would challenge me intellectually and which appreciates me for being different. I guess I must keep looking... but I also hope that such a company is also looking for someone like me, and may stumble over my profile somewhere.
Can't hurt to hope, just to have that hope crushed, I guess.
Here's to that never-ending source of hope.
Maya
Thursday, 30 November 2017
Not a man. Not a woman. Always someone else's problem
The past weeks my therapist and I have been playing a little game, involving him suggesting gynaecologists and other places to contact for possible help with my increasing monthly pains, numbness and general discomfort. I then contact those places to get told that they cannot help me, but wishing me good luck. Or not responding at all. Or like earlier that they don't have room for more non-privately insured patients, but please try again next year or so.
That's basically the past thirteen years in a nutshell: me trying new places, following suggestions and getting disappointed over and over. With only super-rare exceptions. At this point I am not convinced that there is any point to me continuing to play this game. At least not trying to keep up the pretence that I will ever be treated like a biological woman - despite mostly being one - and that the only 'help' there exists for intersex people is the utter brutality of 'normalisation surgery', the euphemistic term for genital mutilation.
I actually managed to lie to myself this time, actually convincing myself that this time it might be different. Yet nothing again. Maybe there will be an open spot for me next year. But what are the chances that I won't just be served a 'sorry, I can't help you' from the gynaecologist with the very first appointment? Won't be the first time. I am convinced that trying this 'solution' over and over again is insane and pointless.
What I have left at this point is to wait and see what the neurologist says regarding the worsening numbness and pain in the right side of my body, with the extreme use of painkillers in order for me to live a somewhat normal life. Kind of. Not really. Maybe the neurologist will order more tests and they will finally get down to the cause. At least at the neurologist it's not nearly as important as what one's biological sex is. We're all wired mostly the same, and causes of pain and numbness tend to be similar.
I can move without too much pain most of the time after taking an ibuprofen, or dosing up on diclofenac gel, yet I have to use both practically without pause at this point. Without either I cannot get through most days, or not wake up from the pain. I absolutely do not like using painkillers, but increasingly I am faced without any other option.
Yesterday for example I was doing okay, up till the point where suddenly the right side of my abdomen started hurting severely, along with a burning sensation in the vaginal area. What happened? I don't know. It didn't go away on its own after suffering through it for a while, but did when I took an ibuprofen. Today much the same.
I don't know what's happening, and am powerless to find out answers, let alone do anything about it.
At this point I am trying to manage a new job, worrying about my health and facing the prospect of finding a new place to live. Which is more important? How much time can I afford to spend on either? A home is irrelevant until I get a job first and know where I'll be moving to. Is my health more important than an income? I would say it is. Yet if one isn't healthy, one cannot hold a job, or even get one.
It appears that there is no right answer. Just an impossible balancing act.
Maya
That's basically the past thirteen years in a nutshell: me trying new places, following suggestions and getting disappointed over and over. With only super-rare exceptions. At this point I am not convinced that there is any point to me continuing to play this game. At least not trying to keep up the pretence that I will ever be treated like a biological woman - despite mostly being one - and that the only 'help' there exists for intersex people is the utter brutality of 'normalisation surgery', the euphemistic term for genital mutilation.
I actually managed to lie to myself this time, actually convincing myself that this time it might be different. Yet nothing again. Maybe there will be an open spot for me next year. But what are the chances that I won't just be served a 'sorry, I can't help you' from the gynaecologist with the very first appointment? Won't be the first time. I am convinced that trying this 'solution' over and over again is insane and pointless.
What I have left at this point is to wait and see what the neurologist says regarding the worsening numbness and pain in the right side of my body, with the extreme use of painkillers in order for me to live a somewhat normal life. Kind of. Not really. Maybe the neurologist will order more tests and they will finally get down to the cause. At least at the neurologist it's not nearly as important as what one's biological sex is. We're all wired mostly the same, and causes of pain and numbness tend to be similar.
I can move without too much pain most of the time after taking an ibuprofen, or dosing up on diclofenac gel, yet I have to use both practically without pause at this point. Without either I cannot get through most days, or not wake up from the pain. I absolutely do not like using painkillers, but increasingly I am faced without any other option.
Yesterday for example I was doing okay, up till the point where suddenly the right side of my abdomen started hurting severely, along with a burning sensation in the vaginal area. What happened? I don't know. It didn't go away on its own after suffering through it for a while, but did when I took an ibuprofen. Today much the same.
I don't know what's happening, and am powerless to find out answers, let alone do anything about it.
At this point I am trying to manage a new job, worrying about my health and facing the prospect of finding a new place to live. Which is more important? How much time can I afford to spend on either? A home is irrelevant until I get a job first and know where I'll be moving to. Is my health more important than an income? I would say it is. Yet if one isn't healthy, one cannot hold a job, or even get one.
It appears that there is no right answer. Just an impossible balancing act.
Maya
Tuesday, 21 November 2017
A biological woman who can find no gynaecologist to help her
Years ago I thought that I would never need a gynaecologist. That was back when I still assumed that I did not have ovaries and such, figuring that I had the luxury of stable hormone levels courtesy of hormone therapy. In that regard I was not much different from a transgender person. My assumption was that I would have to take those hormones for the rest of my life.
Then 2015 started off and with it my body began to undergo physical changes. From the appearance of linea nigra on my abdomen to increasing monthly pains and more. That's when I learned that I do in fact have ovaries. Since that time I have found myself increasingly struggling with the negative symptoms that these changes brought with them.
The past days I found myself waking up basically to pain. As the monthly cycle kicks in anew, the pain in the middle of my abdomen - just below the navel - can be felt, adding to the pain in the right side of my body that doesn't seem to go away any more. My right hip and side are a constant source of pain. I haven't been able to sleep on my right side without liberal application of painkillers for months now. My right leg feels numb, and all the time my right ankle and feet feel as if they are actually broken or injured.
As at this point I have given up on the ridiculous thought that there might actually be a medical specialist with a clue about intersex, let alone who is interested in anything more than eradicating intersex from the face of the earth through forced surgery. That just leaves me with trying to find a gynaecologist willing to take me on as a patient.
Since my problems seem to be caused by the female parts of my anatomy, that would seem like a reasonable course of action. Yet after years of trying it seems that it's irrelevant that I'm essentially biologically female. Me being in increasingly more pain seems to be of no real concern either. I seem to be facing the prospect of more severe abdominal pain and the gradual loss of sensation and increase of pain in at least my right leg and arm. My last attempt last week to contact a gynaecologist also ended with me getting rebuffed but offered 'good luck'. I'm sure that'll help.
What am I to do? Is there anything that I can do?
I'm regularly maxing out the daily allowed amounts of ibuprofen and diclofenac painkillers, just so that I can get through the day, and even then I often find myself flinching in sudden flashes of pain, or only realise how bad the pain still is when I allow myself to relax a bit and I notice how incredibly worn out I am of tolerating the constant pain.
At this point I cannot even afford to do anything but fight this pain with painkillers, as my physical health is basically irrelevant next to the current issues of finding a new job, finding and moving into a new place, and also dealing with the eviction case. This week the latter continues with an official inspection. Next week I have an appointment at the Dutch embassy in Bern to have my passport renewed. Neither of which allow me to be sick.
Thus with my current schedule I can but ignore the pain and pray that nothing disastrous is going to happen that will make it impossible for me to walk and otherwise attend to those priorities. I would be eternally grateful if someone could help me out with finding that gynaecologist who isn't afraid of a more unusual case like mine, but I'm not very hopeful there.
It's one of those areas where society makes it abundantly clear that I'm not a proper woman and also not really a proper human. It feels like society tolerates me more than anything, just like how I tolerate these physical pains because I have no other choice.
I wish things could be different.
Maya
Then 2015 started off and with it my body began to undergo physical changes. From the appearance of linea nigra on my abdomen to increasing monthly pains and more. That's when I learned that I do in fact have ovaries. Since that time I have found myself increasingly struggling with the negative symptoms that these changes brought with them.
The past days I found myself waking up basically to pain. As the monthly cycle kicks in anew, the pain in the middle of my abdomen - just below the navel - can be felt, adding to the pain in the right side of my body that doesn't seem to go away any more. My right hip and side are a constant source of pain. I haven't been able to sleep on my right side without liberal application of painkillers for months now. My right leg feels numb, and all the time my right ankle and feet feel as if they are actually broken or injured.
As at this point I have given up on the ridiculous thought that there might actually be a medical specialist with a clue about intersex, let alone who is interested in anything more than eradicating intersex from the face of the earth through forced surgery. That just leaves me with trying to find a gynaecologist willing to take me on as a patient.
Since my problems seem to be caused by the female parts of my anatomy, that would seem like a reasonable course of action. Yet after years of trying it seems that it's irrelevant that I'm essentially biologically female. Me being in increasingly more pain seems to be of no real concern either. I seem to be facing the prospect of more severe abdominal pain and the gradual loss of sensation and increase of pain in at least my right leg and arm. My last attempt last week to contact a gynaecologist also ended with me getting rebuffed but offered 'good luck'. I'm sure that'll help.
What am I to do? Is there anything that I can do?
I'm regularly maxing out the daily allowed amounts of ibuprofen and diclofenac painkillers, just so that I can get through the day, and even then I often find myself flinching in sudden flashes of pain, or only realise how bad the pain still is when I allow myself to relax a bit and I notice how incredibly worn out I am of tolerating the constant pain.
At this point I cannot even afford to do anything but fight this pain with painkillers, as my physical health is basically irrelevant next to the current issues of finding a new job, finding and moving into a new place, and also dealing with the eviction case. This week the latter continues with an official inspection. Next week I have an appointment at the Dutch embassy in Bern to have my passport renewed. Neither of which allow me to be sick.
Thus with my current schedule I can but ignore the pain and pray that nothing disastrous is going to happen that will make it impossible for me to walk and otherwise attend to those priorities. I would be eternally grateful if someone could help me out with finding that gynaecologist who isn't afraid of a more unusual case like mine, but I'm not very hopeful there.
It's one of those areas where society makes it abundantly clear that I'm not a proper woman and also not really a proper human. It feels like society tolerates me more than anything, just like how I tolerate these physical pains because I have no other choice.
I wish things could be different.
Maya
Wednesday, 1 November 2017
Not wanting to keep living in the face of everything one stands to lose
Homelessness. Again the loss of all my possessions. Losing large sums of money. Becoming paralysed. Suffering increasingly severe chronic pain. The further loss of any remaining sense of freedom and happiness.
This month the eviction case against me continues, as the pain in my abdomen, appendages and neck becomes nearly unbearable as well. I don't know what will happen with either situation. I do not expect anything but continuing injustice. I also do not expect a doctor to care as my physical condition keeps degrading ever more rapidly.
Sleeping poorly is standard for me at this point, with usually a collective 4-5 hours of interrupted sleep, usually from physical pain. I'm worn out from feeling pain every single moment. The ibuprofen and diclofenac together just manage to get the pain in my abdomen and neck down to a dull roar from an unbearable agony. This morning I awoke after another restless night feeling exhausted, but the diclofenac couldn't reduce the pain sufficiently to allow me to sleep a few more hours.
I must continue to fight. Fight against... everything, I guess. My body is dying. I don't have a home. There's no medical help forthcoming. I can see no future for myself.
There's so much that I can lose this month and the next few. No rest. Just more fighting, more physical and emotional pain as well as likely more loss.
I wish someone could tell me why I'm still fighting. There doesn't seem to be any real point to it. I don't have the energy any more to really fight. I cannot trust others. I cannot escape this place. I'm trapped. All I can do is wait and see whether I'll live, or die.
Maybe it's not so bad to die. I think I would enjoy live if I wasn't forced to suffer through all this stress and pain. But that isn't changing, or going away. I cannot take any more of this. It'll just continue like this, forever. That's not a depression speaking, but many years of bitter experience.
Doctors don't care about me. Others would rejoice at my death. Yet others wouldn't care. Some would be sad.
I cannot change my fate. I can just give up and await whatever will happen to me. Accept it. I'm not an adult. Still a child awaiting to be punished for not obeying. Even if I know obeying would have been the wrong choice. I must obey authority. I must kill all emotions. I must keep fighting. Surviving. Maybe all of it. Maybe by giving up on fighting back will I survive. Stop thinking.
I don't want to keep thinking. I want this all to be over. All the pain and suffering.
I can't stop crying.
Tonight another sleepless, pain-filled night awaits.
Maya
This month the eviction case against me continues, as the pain in my abdomen, appendages and neck becomes nearly unbearable as well. I don't know what will happen with either situation. I do not expect anything but continuing injustice. I also do not expect a doctor to care as my physical condition keeps degrading ever more rapidly.
Sleeping poorly is standard for me at this point, with usually a collective 4-5 hours of interrupted sleep, usually from physical pain. I'm worn out from feeling pain every single moment. The ibuprofen and diclofenac together just manage to get the pain in my abdomen and neck down to a dull roar from an unbearable agony. This morning I awoke after another restless night feeling exhausted, but the diclofenac couldn't reduce the pain sufficiently to allow me to sleep a few more hours.
I must continue to fight. Fight against... everything, I guess. My body is dying. I don't have a home. There's no medical help forthcoming. I can see no future for myself.
There's so much that I can lose this month and the next few. No rest. Just more fighting, more physical and emotional pain as well as likely more loss.
I wish someone could tell me why I'm still fighting. There doesn't seem to be any real point to it. I don't have the energy any more to really fight. I cannot trust others. I cannot escape this place. I'm trapped. All I can do is wait and see whether I'll live, or die.
Maybe it's not so bad to die. I think I would enjoy live if I wasn't forced to suffer through all this stress and pain. But that isn't changing, or going away. I cannot take any more of this. It'll just continue like this, forever. That's not a depression speaking, but many years of bitter experience.
Doctors don't care about me. Others would rejoice at my death. Yet others wouldn't care. Some would be sad.
I cannot change my fate. I can just give up and await whatever will happen to me. Accept it. I'm not an adult. Still a child awaiting to be punished for not obeying. Even if I know obeying would have been the wrong choice. I must obey authority. I must kill all emotions. I must keep fighting. Surviving. Maybe all of it. Maybe by giving up on fighting back will I survive. Stop thinking.
I don't want to keep thinking. I want this all to be over. All the pain and suffering.
I can't stop crying.
Tonight another sleepless, pain-filled night awaits.
Maya
Saturday, 21 October 2017
When medication is all that keeps one going
Earlier this year I started taking the contraceptive pill again to deal with the monthly symptoms of the numbness and pain in the right side of my body. This seemed to work great until last month, when I began to lose sensation in my right leg again. As a result, I figured if it was only going to be a temporary solution, I might as well see what these monthly symptoms are like without being kept in check by the pill.
Suffice it to say, it's pretty darn bad. Much worse than before, really. The past few days I tried to suffer through the pain and everything else without resorting to painkillers, but as yesterday I practically lost all sensation and mobility in the right side of my body, I figured some painkillers are in order.
The amazing thing which I learned as a result is that diclofenac [1] applied as a gel directly on the right side of my abdomen (as that's where the sharp pains originate) seems to almost immediately very effectively deal not only with the pain in that area, but also removes much of the numbness and weakness in both my right leg and arm. Adding ibuprofen (another NSAID) improves things even more.
Although the pain isn't fully gone (I can still feel it burn in the right side of my abdomen as I type this), it reduces the effective impact from the pain, numbness and other symptoms to a point where I can walk almost normally again, use my right arm without it tiring almost instantly, and perhaps most importantly, where I can feel my head clear from the fog of pain and headache.
That NSAID medication appears to be so highly effective against these symptoms argues again for endometriosis [2] or similar to be behind them. Endometriosis is something which generally also worsens over time, and which is strictly tied to one's monthly cycle. Two characteristics which sadly hold true in my case.
Unfortunately, endometriosis is generally tricky to diagnose. Whether or not next week's MRI scan will be in any way or form revealing if the underlying problem is in fact endometriosis has to be seen. Each case of this condition is different, making it hard to say with certainty what is going on. All I do know is that when the last MRI scans were made of my abdomen back in 2014, I did not yet have symptoms like these of this severity and magnitude.
At this point I could gamble that I do in fact have endometriosis and try to self-manage the symptoms with the contraceptive pill along with plentiful use of NSAID painkillers. Yet experience has taught me that this would help to cover things up for a bit longer without really addressing the underlying issue. Considering that my female reproductive organs seem to be an utter mess as a result of my intersex condition, there do not appear to be any existing cases or data in the medical records which would preclude the possibility of endometriosis in my case turning fatal.
Living a life that's only made bearable through plentiful medication does not seem like a great prospect to me, either. I would much rather get a diagnosis and possibly surgery that would both give me some concrete answers and conceivably a life free from constant painkiller use and the necessity of taking the contraceptive pill or similar.
Next week better get me some answers, really.
Maya
[1] https://en.wikipedia.org/wiki/Diclofenac
[2] https://en.wikipedia.org/wiki/Endometriosis
Suffice it to say, it's pretty darn bad. Much worse than before, really. The past few days I tried to suffer through the pain and everything else without resorting to painkillers, but as yesterday I practically lost all sensation and mobility in the right side of my body, I figured some painkillers are in order.
The amazing thing which I learned as a result is that diclofenac [1] applied as a gel directly on the right side of my abdomen (as that's where the sharp pains originate) seems to almost immediately very effectively deal not only with the pain in that area, but also removes much of the numbness and weakness in both my right leg and arm. Adding ibuprofen (another NSAID) improves things even more.
Although the pain isn't fully gone (I can still feel it burn in the right side of my abdomen as I type this), it reduces the effective impact from the pain, numbness and other symptoms to a point where I can walk almost normally again, use my right arm without it tiring almost instantly, and perhaps most importantly, where I can feel my head clear from the fog of pain and headache.
That NSAID medication appears to be so highly effective against these symptoms argues again for endometriosis [2] or similar to be behind them. Endometriosis is something which generally also worsens over time, and which is strictly tied to one's monthly cycle. Two characteristics which sadly hold true in my case.
Unfortunately, endometriosis is generally tricky to diagnose. Whether or not next week's MRI scan will be in any way or form revealing if the underlying problem is in fact endometriosis has to be seen. Each case of this condition is different, making it hard to say with certainty what is going on. All I do know is that when the last MRI scans were made of my abdomen back in 2014, I did not yet have symptoms like these of this severity and magnitude.
At this point I could gamble that I do in fact have endometriosis and try to self-manage the symptoms with the contraceptive pill along with plentiful use of NSAID painkillers. Yet experience has taught me that this would help to cover things up for a bit longer without really addressing the underlying issue. Considering that my female reproductive organs seem to be an utter mess as a result of my intersex condition, there do not appear to be any existing cases or data in the medical records which would preclude the possibility of endometriosis in my case turning fatal.
Living a life that's only made bearable through plentiful medication does not seem like a great prospect to me, either. I would much rather get a diagnosis and possibly surgery that would both give me some concrete answers and conceivably a life free from constant painkiller use and the necessity of taking the contraceptive pill or similar.
Next week better get me some answers, really.
Maya
[1] https://en.wikipedia.org/wiki/Diclofenac
[2] https://en.wikipedia.org/wiki/Endometriosis
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