Musing about chronic (urinary) pain
May. 14th, 2019 06:17 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
extrynI'm not officially diagnosed, but I'm very certain that I have interstitial cystitis. Every now and then, especially during stressful times and after certain triggers, I get what looks and feels like a terrible UTI. Except antibiotics don't help, and almost every urine culture I do comes back clear. At my worst, I was getting episodes of this every...hmm, 1-2 months, and the pain was absolutely disabling.
It didn't start that way, though. When it first began to happen to me - yes, it was painful - but I could continue doing what I wanted to do around that pain. The pain was easy to shove aside and get on with my day. That part changed over the years, and I grew to dread even the faintest stinging sensation, because I knew it was going to end up in blood and hours bent-double on the toilet.
For a long time, I've thought about this process. I know objectively that the pain begins somewhere around a 3-4, a niggle, but it feels like a 9. I know that it often gets up to a level of pain that I find impossible to talk, move, or function around. I think I could tolerate that, if it wasn't for the fact that when this pain starts, I have no way to relieve it and no idea how long it will last. It can be anywhere from 30 mins to 6 hours of me being trapped on the loo by the sensation of a rusty screwdriver being jabbed up my peehole, an overpowering urgency to urinate, and more pain whenever I do so. It's this strange, unrelenting pain which does not ease, and is only broken up by other pains - like the ache in my lower abdomen, or the glass-shards pain of passing blood clots. And then, all of a sudden, for no good reason at all? It ramps down within minutes and stops. I'll have a few hours pain-free, and then it'll happen again, and this cycle will repeat through all hours of the day or night until it doesn't.
Disclaimer #1: Apart from those flares, which now only occur a couple times a year, I'm absolutely pain-free. So I'm really only able to talk about my own limited experience, and I don't expect that it generalises well to anybody else.
There's a lot about this process that fascinates me. The fact once it was only painful and annoying, and now I find it genuinely crippling. The fact that the pain can be so severe it wakes me from sleep, when I frequently sleep (like a baby!) through all manner of consensually-inflicted injuries. Seriously. Some of them can be bad enough that I can't even roll over in bed, and I still sleep well! (And wake up in exactly the same position I fell asleep in, glued to the sheets by half-dry wounds.) I like pain. I have no issues with tolerating and functioning in tandem with pain.
Except this particular pain. Huh.
We know, medically, that chronic pain is a process of central sensitisation. The brain and nervous system become used to, and expectant of the pain, and create new circuits and connections devoted to experiencing that pain. Even once the stimulus has been switched off, those connections remain on. The power of the nervous system to perpetuate pain cannot be underestimated: this process alone can cause dystonia, swelling, changes in blood flow, and affect other involuntary functions even when the target tissue has no injury whatsoever.
Interstitial cystitis is particularly fascinating, because it's one of the few chronic pain syndromes where we can often physically see the damage that the brain is essentially inflicting upon itself. IC suffers have bladder ulcers which bleed, and there have been all sorts of studies into whether this has a structural or genetic basis, etc etc. But we also know that a much more powerful predictor of IC is that neurogenic, chronic pain process - which itself is heavily tied with psychological processes such as anxiety and depression.
Double fascinating is feline interstitial cystitis - an incredibly well-described phenomenon in cats which is an almost perfect analogue of the human disease. What's the prevention and primary treatment of feline IC? Stress reduction. We know this process is starting in the brain, not the bladder. But it is in no way limited to the mind alone.
I think that what makes the bladder pain particularly difficult for me is the unpredictability and the lack of an off switch. There is no way to control it, ease it, or avoid it - it may strike at any time, and when it does, I don't know how long I'll have to wait it out for. I suspect that the lack of control builds fear and an anxious sort of anticipation, and I really do get so adrenaline-y when I feel it come on!
If I compare that to the types of pain I frequently enjoy or tolerate well: I know that they will go away within a few days, I know of many ways to ease or relieve them, I know what's causing them and how to fix it. I know that those pains cannot harm me. And they remind me of a good time, rather than signalling an awful one about to arrive.
I imagine that some of these factors hugely drive chronic pain. Lack of control, of any sort. No control over intensity or way to ease the pain, no ability to predict or influence the length of time the pain occurs for. The promise of further pain or continuing injury. I can't help wonder if these qualities could possibly predict chronic pain.
Disclaimer #2: Okay - this is the TMI part. It's about sounding. Click away here.
The craziest part of all this, is that I've found I can tolerate and enjoy sounding. As in, "putting big steel rods inside the urethra". It causes the exact same quality of pain (at much lower intensity) as my bladder pain. Sometimes that pain even persists for a brief amount of time.
This doesn't set off an IC flare, nor does it set off a runaway train of fear that I'll be curled up in a ball for the next 4 hours, nor does it end in a feedback loop of pain and inflammation.
I gave this a whirl a few hours agoand quite honestly I'm frightened by the sorts of diameters that comfortably want to go up there. Unsurprisingly, it stung a little when I went to pee. But I knew it would stop, I knew that this was expected and temporary, and I knew that if I took care of myself it wouldn't turn into an infection or a flare. The pain stopped 30 seconds later, and it wasn't an aversive experience. Things still feel a little raw, and that's perfectly tolerable.
It is so, so crazy how a different context, a different perspective, was able to change my experience of that pain. Pain which objectively feels the same as the awful, life-ruining pain I described above.
I don't have a way to transform these thoughts into a cure for pain. But if it's taught me one thing - giving a patient back the control over their own pain is perhaps the best treatment for chronic pain we can provide. Don't just give them painkillers, but give them the tools to change their circumstances and the context within which the pain exists. Just being able to take a day off and sit in pain makes my IC flares pass quicker than if I work through them, and allow that feedback loop of pain and anticipation to ramp up.
And that's it, really. I'll stop monologuing about my urogenital function, now.
(Just in case it isn't clear: please don't stick things up your peehole. Especially if you have bladder issues. I'm just a cowboy and should not at all be trusted when it comes to adventurous masochism.)
It didn't start that way, though. When it first began to happen to me - yes, it was painful - but I could continue doing what I wanted to do around that pain. The pain was easy to shove aside and get on with my day. That part changed over the years, and I grew to dread even the faintest stinging sensation, because I knew it was going to end up in blood and hours bent-double on the toilet.
For a long time, I've thought about this process. I know objectively that the pain begins somewhere around a 3-4, a niggle, but it feels like a 9. I know that it often gets up to a level of pain that I find impossible to talk, move, or function around. I think I could tolerate that, if it wasn't for the fact that when this pain starts, I have no way to relieve it and no idea how long it will last. It can be anywhere from 30 mins to 6 hours of me being trapped on the loo by the sensation of a rusty screwdriver being jabbed up my peehole, an overpowering urgency to urinate, and more pain whenever I do so. It's this strange, unrelenting pain which does not ease, and is only broken up by other pains - like the ache in my lower abdomen, or the glass-shards pain of passing blood clots. And then, all of a sudden, for no good reason at all? It ramps down within minutes and stops. I'll have a few hours pain-free, and then it'll happen again, and this cycle will repeat through all hours of the day or night until it doesn't.
Disclaimer #1: Apart from those flares, which now only occur a couple times a year, I'm absolutely pain-free. So I'm really only able to talk about my own limited experience, and I don't expect that it generalises well to anybody else.
There's a lot about this process that fascinates me. The fact once it was only painful and annoying, and now I find it genuinely crippling. The fact that the pain can be so severe it wakes me from sleep, when I frequently sleep (like a baby!) through all manner of consensually-inflicted injuries. Seriously. Some of them can be bad enough that I can't even roll over in bed, and I still sleep well! (And wake up in exactly the same position I fell asleep in, glued to the sheets by half-dry wounds.) I like pain. I have no issues with tolerating and functioning in tandem with pain.
Except this particular pain. Huh.
We know, medically, that chronic pain is a process of central sensitisation. The brain and nervous system become used to, and expectant of the pain, and create new circuits and connections devoted to experiencing that pain. Even once the stimulus has been switched off, those connections remain on. The power of the nervous system to perpetuate pain cannot be underestimated: this process alone can cause dystonia, swelling, changes in blood flow, and affect other involuntary functions even when the target tissue has no injury whatsoever.
Interstitial cystitis is particularly fascinating, because it's one of the few chronic pain syndromes where we can often physically see the damage that the brain is essentially inflicting upon itself. IC suffers have bladder ulcers which bleed, and there have been all sorts of studies into whether this has a structural or genetic basis, etc etc. But we also know that a much more powerful predictor of IC is that neurogenic, chronic pain process - which itself is heavily tied with psychological processes such as anxiety and depression.
Double fascinating is feline interstitial cystitis - an incredibly well-described phenomenon in cats which is an almost perfect analogue of the human disease. What's the prevention and primary treatment of feline IC? Stress reduction. We know this process is starting in the brain, not the bladder. But it is in no way limited to the mind alone.
I think that what makes the bladder pain particularly difficult for me is the unpredictability and the lack of an off switch. There is no way to control it, ease it, or avoid it - it may strike at any time, and when it does, I don't know how long I'll have to wait it out for. I suspect that the lack of control builds fear and an anxious sort of anticipation, and I really do get so adrenaline-y when I feel it come on!
If I compare that to the types of pain I frequently enjoy or tolerate well: I know that they will go away within a few days, I know of many ways to ease or relieve them, I know what's causing them and how to fix it. I know that those pains cannot harm me. And they remind me of a good time, rather than signalling an awful one about to arrive.
I imagine that some of these factors hugely drive chronic pain. Lack of control, of any sort. No control over intensity or way to ease the pain, no ability to predict or influence the length of time the pain occurs for. The promise of further pain or continuing injury. I can't help wonder if these qualities could possibly predict chronic pain.
Disclaimer #2: Okay - this is the TMI part. It's about sounding. Click away here.
The craziest part of all this, is that I've found I can tolerate and enjoy sounding. As in, "putting big steel rods inside the urethra". It causes the exact same quality of pain (at much lower intensity) as my bladder pain. Sometimes that pain even persists for a brief amount of time.
This doesn't set off an IC flare, nor does it set off a runaway train of fear that I'll be curled up in a ball for the next 4 hours, nor does it end in a feedback loop of pain and inflammation.
I gave this a whirl a few hours ago
It is so, so crazy how a different context, a different perspective, was able to change my experience of that pain. Pain which objectively feels the same as the awful, life-ruining pain I described above.
I don't have a way to transform these thoughts into a cure for pain. But if it's taught me one thing - giving a patient back the control over their own pain is perhaps the best treatment for chronic pain we can provide. Don't just give them painkillers, but give them the tools to change their circumstances and the context within which the pain exists. Just being able to take a day off and sit in pain makes my IC flares pass quicker than if I work through them, and allow that feedback loop of pain and anticipation to ramp up.
And that's it, really. I'll stop monologuing about my urogenital function, now.
(Just in case it isn't clear: please don't stick things up your peehole. Especially if you have bladder issues. I'm just a cowboy and should not at all be trusted when it comes to adventurous masochism.)
no subject
Date: 2019-05-15 06:44 am (UTC)Not sure about L-tryptophan under your circumstances, but there's not reason not to self-dose with the alleged bladder-supporting component and see if it can stop you getting to the point of needing major adventurous masochism just in order to pee!
Now, if only someone would invent Feliway for humans...