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.
Maya
[1] https://en.wikipedia.org/wiki/Imperforate_hymen
[2] https://en.wikipedia.org/wiki/Peritonitis
Showing posts with label sciatica. Show all posts
Showing posts with label sciatica. Show all posts
Saturday, 14 April 2018
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
Wednesday, 11 October 2017
Continuing towards my 20th MRI scan
This morning I made an appointment for what will be my 11th MRI scan so far. During yesterday's neurologist appointment the neurologist confirmed that I am indeed still experiencing the numbness and pain in my right leg. With the tests on the cerebrospinal fluid (CSF) - drawn from my body during a lumbar puncture a while ago - showing up all clear, the neurologist wanted to check for the next few items to investigate.
Specifically myelitis (infection/inflammation of the white or grey matter of the spinal cord) [1], and a spinal disc herniation [2]. Ergo another MRI is needed, this time of the lower part of the body, since the first scan just covered the part up to and including part of the chest area.
With the upper part of my body seemingly fine, even with the many white spots (lesions) seen in my brain, the focus now shifts to the rest of my spinal column and the nerves inside it. Things will be interested if neither of these two presumptions turn out to be true and there's neither a herniation, nor any indications of inflammation. What will the next step be, if any?
Based on the observation that the numbness in my right leg seems to be linked to my monthly cycle (discomfort and pain starting some time into the first week, worsening until tapering off over the next two weeks), it would be reasonable to presume that something is swelling up or expanding in mass so as to press on the sciatic nerve that innervates the leg.
Along with the pain, numbness and discomfort in my right leg and hip, I also experience pains and discomfort in the lower abdomen and genital area which would suggest that something is inflamed or at the very least overly sensitive and irritated. This to the point that toilet visits around this period can have me literally in tears afterwards from the pain due to the pressure on what feels like a severely painful vagina.
On Monday I contacted the endocrinologist who I last saw in 2016 and who was also responsible for getting me a bit of medical help and some answers about my body. She had mentioned something about a gynaecologist who might be able to help someone in my situation, which seems like the kind of person I could use right now. So far I haven't received a response yet, however.
It will be interesting to see how this big puzzle that is my body and its issues continues. Will it be the detour via the neurologist which ultimately will lead to the discovery of what is really going on inside my abdomen? At this point I at least really appreciate how this neurologist continues with this investigation until all reasonable causes have been looked at and dismissed. The first MRI scan surprised me, because I had expected to be dismissed for a symptom as vague as 'numbness in my leg'.
The lumbar puncture was a surprise, too, and I honestly had expected yesterday's appointment to be the last one. Just an 'everything looked fine in the test, nothing else we can do now.'. Instead the neurologist surprised me again by looking briefly whether a scan of the lower part of my spine had been made already and ordering a new MRI scan when he didn't.
My feelings about this 11th MRI scan and second scan for neurological purposes are a bit mixed. I don't really expect them to see anything, yet if they do it could be something bad, possibly requiring surgery. On the other hand, if they find the cause of this numbness and such, that would be nice.
There is also the consideration of just how far down the torso the scan will reach. If they'll go just for the spinal column, then the coccyx is roughly at the level of the bladder, which would miss a big section of the lower abdomen. If they do however scan the lower abdomen or a large section of it, the results could be even more interesting.
It's been a few years now since the last MRI scans were made of my abdomen. Before my body starts its true puberty back in 2015. With my body presumably having matured significantly inside as well, it might be that one can see distinct changes on an MRI scan, including the presence of a proper lining inside the vagina, which was previously mostly absent.
There I really hope on one hand that they cover that area, as even with imperfect MRI settings for soft tissues it could still show a lot. On the other hand, I would be a tad nervous after the scan to face the radiologist if they went low enough and I have to explain my intersex condition. Would be worth it, though.
With general medical help for my intersex condition and its complications still being practically absent, this specific investigation into just this numb leg might be my best bet to get some answers. I truly hope that this neurologist will continue to surprise me.
Some surprises are really quite pleasant :)
Maya
[1] https://en.wikipedia.org/wiki/Myelitis
[2] https://en.wikipedia.org/wiki/Spinal_disc_herniation
Specifically myelitis (infection/inflammation of the white or grey matter of the spinal cord) [1], and a spinal disc herniation [2]. Ergo another MRI is needed, this time of the lower part of the body, since the first scan just covered the part up to and including part of the chest area.
With the upper part of my body seemingly fine, even with the many white spots (lesions) seen in my brain, the focus now shifts to the rest of my spinal column and the nerves inside it. Things will be interested if neither of these two presumptions turn out to be true and there's neither a herniation, nor any indications of inflammation. What will the next step be, if any?
Based on the observation that the numbness in my right leg seems to be linked to my monthly cycle (discomfort and pain starting some time into the first week, worsening until tapering off over the next two weeks), it would be reasonable to presume that something is swelling up or expanding in mass so as to press on the sciatic nerve that innervates the leg.
Along with the pain, numbness and discomfort in my right leg and hip, I also experience pains and discomfort in the lower abdomen and genital area which would suggest that something is inflamed or at the very least overly sensitive and irritated. This to the point that toilet visits around this period can have me literally in tears afterwards from the pain due to the pressure on what feels like a severely painful vagina.
On Monday I contacted the endocrinologist who I last saw in 2016 and who was also responsible for getting me a bit of medical help and some answers about my body. She had mentioned something about a gynaecologist who might be able to help someone in my situation, which seems like the kind of person I could use right now. So far I haven't received a response yet, however.
It will be interesting to see how this big puzzle that is my body and its issues continues. Will it be the detour via the neurologist which ultimately will lead to the discovery of what is really going on inside my abdomen? At this point I at least really appreciate how this neurologist continues with this investigation until all reasonable causes have been looked at and dismissed. The first MRI scan surprised me, because I had expected to be dismissed for a symptom as vague as 'numbness in my leg'.
The lumbar puncture was a surprise, too, and I honestly had expected yesterday's appointment to be the last one. Just an 'everything looked fine in the test, nothing else we can do now.'. Instead the neurologist surprised me again by looking briefly whether a scan of the lower part of my spine had been made already and ordering a new MRI scan when he didn't.
My feelings about this 11th MRI scan and second scan for neurological purposes are a bit mixed. I don't really expect them to see anything, yet if they do it could be something bad, possibly requiring surgery. On the other hand, if they find the cause of this numbness and such, that would be nice.
There is also the consideration of just how far down the torso the scan will reach. If they'll go just for the spinal column, then the coccyx is roughly at the level of the bladder, which would miss a big section of the lower abdomen. If they do however scan the lower abdomen or a large section of it, the results could be even more interesting.
It's been a few years now since the last MRI scans were made of my abdomen. Before my body starts its true puberty back in 2015. With my body presumably having matured significantly inside as well, it might be that one can see distinct changes on an MRI scan, including the presence of a proper lining inside the vagina, which was previously mostly absent.
There I really hope on one hand that they cover that area, as even with imperfect MRI settings for soft tissues it could still show a lot. On the other hand, I would be a tad nervous after the scan to face the radiologist if they went low enough and I have to explain my intersex condition. Would be worth it, though.
With general medical help for my intersex condition and its complications still being practically absent, this specific investigation into just this numb leg might be my best bet to get some answers. I truly hope that this neurologist will continue to surprise me.
Some surprises are really quite pleasant :)
Maya
[1] https://en.wikipedia.org/wiki/Myelitis
[2] https://en.wikipedia.org/wiki/Spinal_disc_herniation
Tuesday, 4 April 2017
Sciatica, or: welcome to another personal hell
Today while at work I had my right leg suddenly go numb again. It's the same thing as the previous times, basically: the leg turning wooden, being unable to move it voluntarily and only being able to wobble around on said leg as if it's a prosthetic limb, pretty much. Sensation is reduced to a numbness, with occasional sharp pains and tingling.
Earlier someone on Twitter recognised the symptoms as I described them and asked me whether it could be sciatica [1]. Unsurprisingly it's a good match. Essentially it occurs when the root of the lower lumbar and/or lumbosacral spine become irritated. This can happen for a variety of reasons, including pregnancy [2].
This diagnosis also gives an explanation for the pain in my hips, which is how this all started, about 5 years ago now. Back then it was mostly the pain in my hip, with occasional pain in my right leg. Over time this has become worse, to the point where there are now days when I simply cannot walk properly, and am in pain the entire time.
Another constant which I have noticed over the past months is that whenever I have these sciatica symptoms, I also experience pain in the lower abdominal and vaginal area, including the at times excruciating pain during a toilet visit. This is all indicative of there being something in the lower abdomen which is irritated, swollen, inflamed, or a combination thereof.
I have already contacted my GP about this and hope that I can get some kind of diagnosis now of the underlying cause for these symptoms. Most likely it's due to my period, the associated hormonal changes and my unique physiology as a hermaphrodite. Most worrying about it is that the symptoms are becoming more severe, which warrants immediate medical attention. Hopefully that will work out for once, and I won't be still writing about it in ten years, while crippled and bed-bound, or something.
Can my life please get boring yet? :(
Maya
[1] http://www.mayoclinic.org/diseases-conditions/sciatica/basics/definition/con-20026478
[2] http://www.webmd.com/back-pain/guide/sciatica-symptoms
Earlier someone on Twitter recognised the symptoms as I described them and asked me whether it could be sciatica [1]. Unsurprisingly it's a good match. Essentially it occurs when the root of the lower lumbar and/or lumbosacral spine become irritated. This can happen for a variety of reasons, including pregnancy [2].
This diagnosis also gives an explanation for the pain in my hips, which is how this all started, about 5 years ago now. Back then it was mostly the pain in my hip, with occasional pain in my right leg. Over time this has become worse, to the point where there are now days when I simply cannot walk properly, and am in pain the entire time.
Another constant which I have noticed over the past months is that whenever I have these sciatica symptoms, I also experience pain in the lower abdominal and vaginal area, including the at times excruciating pain during a toilet visit. This is all indicative of there being something in the lower abdomen which is irritated, swollen, inflamed, or a combination thereof.
I have already contacted my GP about this and hope that I can get some kind of diagnosis now of the underlying cause for these symptoms. Most likely it's due to my period, the associated hormonal changes and my unique physiology as a hermaphrodite. Most worrying about it is that the symptoms are becoming more severe, which warrants immediate medical attention. Hopefully that will work out for once, and I won't be still writing about it in ten years, while crippled and bed-bound, or something.
Can my life please get boring yet? :(
Maya
[1] http://www.mayoclinic.org/diseases-conditions/sciatica/basics/definition/con-20026478
[2] http://www.webmd.com/back-pain/guide/sciatica-symptoms
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