Random leaks while sitting/gaming? Going from sitting to standing?
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I am not sure what might be causing this in your situation. For most of us it is caused in a round about way by a weakened pelvic floor. I seem to remember from your previous posts that kegels make you worse, which is what most recommend to rehabilitate the floor muscles and strengthen the function of the sphincter. If this is true in your case there may be another cause.
However there are additional exercises that strengthen the core and pelvic muscles although maybe not as effectively as kegels for supporting incontinence. A web search should provide examples.
Once you get insurance maybe you can get to the underlying cause. Best of luck.
However there are additional exercises that strengthen the core and pelvic muscles although maybe not as effectively as kegels for supporting incontinence. A web search should provide examples.
Once you get insurance maybe you can get to the underlying cause. Best of luck.
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I might be stereotyping here. Gamers have a tendency to hold there bladders until its to late. Holding for to long can put stress on the sphincter muscle. With in time can cause leakage and can lead to other issues. I used to be a gamer and would hold in my needing to visit the restroom. I always think that part of my incontinence has something to do with that. I would sit and game to the point it would hurt from hold it in. By the time I stood up, it was to late.
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@Koigal In my case, all of my bladder issues - including leaking when shifting from sitting to standing - are from the pinched and severed bladder nerves that happened when I fell 20 feet down a cliff while snowboarding in super steep terrain, on my butt, slamming on rocks the entire way, BAM BAM BAM! According to my altitude watch, I was going 25mph. Even though I didn’t hit my head, I hit my spine so hard on my ass that the energy traveled through my spine up to my brain and gave me a Traumatic Brain Injury (TBI). My life changed forever in an instant with that fall. I was 39 (now I’m 45). I severed and destroyed every disc in my L1 through S1 vertebrae. The discs were previously already bulging/herniated from prior snowboarding injuries, specifically one significant “scorpion” fall. My insurance company dubbed my injuries from the fall as “catastrophic.” There was talk of putting a metal rod down my spine to fuse the vertebrae, which would have terrified me, but my back doctors decided to give it a year or two to see if my lumbar spine would fuse itself - a better solution than metal - which it did. But it fused with a 17’ curve to my left, so now I have scoliosis.
I am in major, constant, chronic back pain and take at least 2000mg of Aleve every day - sometimes more - and sometimes Tylenol on top of that, every day since 2009, going back to my scorpion fall. I am worried that my kidneys and/or bowels are being destroyed by the NSAIDs - very likely - but I try to focus on living as full of a life as I can while I can. I may also have significant complications with my spine as I age. I’ve shifted my thinking to try to accept that I probably won’t live past 65 because of my health problems and the medications I have to take to be able to move my body.
I’m also five years past due for knee replacements, ugh. I’ve had two surgeries on each knee already - including total meniscectomies - and they’ve only helped temporarily. My knee problems are from 1) skiing and snowboarding - think 100-120 days per year, for years, 2) shitty genetics, 3) dancing with a professional ballet company from ages 4-15, and 4) years and years of doing stairmaster for 1-2 hours a days so I could do major backpacking trips at high altitude. All the hiking, ballet, and snowsports were well worth it - I’ve lived 10 lifetimes already - even though I’m incredibly young to be needing knee replacements. If I get them now, I’ll have to get them again at age 65. I’ll probably get my right knee done within the next year. I’m terrified about the 2-year-long rehab and recovery. I can’t stand the idea of having metal in my body! Gross!
The way my ass fall has impacted me the worst (so far) is that the nerve(s) that should be telling my bladder to settle down and shut up when I’m horizontal, no longer exist. So I wake up every 5-40 minutes to piss (it doesn’t deserve a nicer term like “pee”), all night long, no matter what I eat or drink during the day. I definitely do restrict fluid intake (not good for the rest of the body) and caffeine. About every fifth night, I get the pleasure of waking up to a wet diaper, which I’ve grown to love, because it means I got the privilege of sleeping through bladder spasms long enough to actually wet the diaper.
Words cannot express how damaging the longterm sleep deprivation has been. I had chronic insomnia already, since age four, because I’m super hyper and my brain won’t shut up. So every time I wake up to pee, it’s very hard for me to get back to sleep. The end result is that while four hours of sleep used to work great for me and my overachieving lifestyle, now it’s nowhere near enough because I’m rarely sleeping much in four hours. Now I have to be in bed 8-10 hours, to get four hours of sleep. I absolutely hate spending - wasting - that much of my life laying down. But it’s also necessary because I’m in so much pain. Pain needs sleep.
Unlike some others on the forum, I don’t often talk about how much pain I’m in, because it’s not going to change. It is what it is. I’ve taken several classes on how to handle living with chronic pain and chronic conditions. Fortunately, sort of, I don’t get much relief from narcotic painkillers, so I’m not tempted to delve into those - not are doctors willing to prescribe them anymore. The last thing I need in my life is drug addiction - though I’m definitely heavily dependent on Aleve. I couldn’t get out of bed without Aleve for my back. But I’m not addicted to it.
The sleep deprivation because of my bladder and pain affects every aspect of my life negatively. I haven’t gone back to full-time work yet because I can’t predict how reliable I’ll be in the mornings (or any day, as I’m so often totally exhausted when I wake up). Drives me crazy. Makes planning hard. They say chronic sleep deprivation is as bad for you as smoking a pack of cigarettes a day. I agree, that’s how it feels (not that I’ve ever smoked cigarettes).
As for leakage when getting in and out of a car or a bed or a chair, or walking more than a hundred steps, Kegels and PT *did* help me, but not completely. At night, for instance, I’m out of it when I stand up to get to the bathroom, and I often leak while on the edge of the bed, because I’m groggy and not thinking about Kegels. During the day, I have fewer leaks, but I still have some.
I have most of the bladder issues one can have: spasms, pain, OAB. Several women in my family experienced prolapse, and as I had a hysterectomy because of cancer, I experienced premature menopause, and am now at a high risk for prolapse, which really grosses me out. I can’t stand the thought of organs hanging out of my vagina. Menopause didn’t do me any favors for my bladder. The one thing that helps me the most, day and night, are Botox injections, though I have a high deductible and out-of-pocket max, so I often can’t afford them. If I could, I would absolutely get them quarterly as recommended. They are amazing. I’ve tried all the types of oral medications for bladder control, and none help much. They all significantly rot your teeth with dry mouth. I do still take Oxybutynin here and there.
One more thing: after the cliff fall, it took my bladder nerves six weeks to start showing signs of failing. It began with a bedwetting episode every couple of weeks; totally shocking. Then over the next nine months, all the bladder problems progressively got worse and worse as the nerves died - it takes them a while to die out. But since then, my symptoms have been stable, thankfully.
Ugh, those first few years of dealing with this were such a depressing nightmare. I was in bed for 2-3 years, because of my bladder and my pain. But after finding this forum, I gradually improved my acceptance of this and am now close to living a more normal life.
But I doubt that I’ll ever date again. When the cliff fall happened, my ex-husband and I had divorced two weeks prior. I haven’t dated significantly since then. I can’t imagine ever telling a guy that I wear a diaper. They need the visual stimulation of skimpy panties. And nobody wants to be peed on in the middle of the night when diapers fail, which they do at least four times a month for me, sometimes 15.
In closing, I want to re-emphasize that you *absolutely can* have bladder problems after a tailbone fall, which you have had. It’s a very simple explanation. There’s no cure. But at least it’s an explanation for which I’m grateful, because I’d really go crazy if I had no idea why I experience incontinence. I’ll be curious to hear what you doctor(s) say when you tell them about your tailbone injury. There are a few other people on the forum who are incontinent also because of spinal damage.
One last thing: have you been tested for MS? Incontinence can be one of the first symptoms of MS. MS damages your spinal cord and therefore bladder and bowel nerves. There are several people on the forum who have incontinence from MS.
Hugs, and I promise, slow-going though it may be, eventually you *will* get used to it. Hang in there!
I am in major, constant, chronic back pain and take at least 2000mg of Aleve every day - sometimes more - and sometimes Tylenol on top of that, every day since 2009, going back to my scorpion fall. I am worried that my kidneys and/or bowels are being destroyed by the NSAIDs - very likely - but I try to focus on living as full of a life as I can while I can. I may also have significant complications with my spine as I age. I’ve shifted my thinking to try to accept that I probably won’t live past 65 because of my health problems and the medications I have to take to be able to move my body.
I’m also five years past due for knee replacements, ugh. I’ve had two surgeries on each knee already - including total meniscectomies - and they’ve only helped temporarily. My knee problems are from 1) skiing and snowboarding - think 100-120 days per year, for years, 2) shitty genetics, 3) dancing with a professional ballet company from ages 4-15, and 4) years and years of doing stairmaster for 1-2 hours a days so I could do major backpacking trips at high altitude. All the hiking, ballet, and snowsports were well worth it - I’ve lived 10 lifetimes already - even though I’m incredibly young to be needing knee replacements. If I get them now, I’ll have to get them again at age 65. I’ll probably get my right knee done within the next year. I’m terrified about the 2-year-long rehab and recovery. I can’t stand the idea of having metal in my body! Gross!
The way my ass fall has impacted me the worst (so far) is that the nerve(s) that should be telling my bladder to settle down and shut up when I’m horizontal, no longer exist. So I wake up every 5-40 minutes to piss (it doesn’t deserve a nicer term like “pee”), all night long, no matter what I eat or drink during the day. I definitely do restrict fluid intake (not good for the rest of the body) and caffeine. About every fifth night, I get the pleasure of waking up to a wet diaper, which I’ve grown to love, because it means I got the privilege of sleeping through bladder spasms long enough to actually wet the diaper.
Words cannot express how damaging the longterm sleep deprivation has been. I had chronic insomnia already, since age four, because I’m super hyper and my brain won’t shut up. So every time I wake up to pee, it’s very hard for me to get back to sleep. The end result is that while four hours of sleep used to work great for me and my overachieving lifestyle, now it’s nowhere near enough because I’m rarely sleeping much in four hours. Now I have to be in bed 8-10 hours, to get four hours of sleep. I absolutely hate spending - wasting - that much of my life laying down. But it’s also necessary because I’m in so much pain. Pain needs sleep.
Unlike some others on the forum, I don’t often talk about how much pain I’m in, because it’s not going to change. It is what it is. I’ve taken several classes on how to handle living with chronic pain and chronic conditions. Fortunately, sort of, I don’t get much relief from narcotic painkillers, so I’m not tempted to delve into those - not are doctors willing to prescribe them anymore. The last thing I need in my life is drug addiction - though I’m definitely heavily dependent on Aleve. I couldn’t get out of bed without Aleve for my back. But I’m not addicted to it.
The sleep deprivation because of my bladder and pain affects every aspect of my life negatively. I haven’t gone back to full-time work yet because I can’t predict how reliable I’ll be in the mornings (or any day, as I’m so often totally exhausted when I wake up). Drives me crazy. Makes planning hard. They say chronic sleep deprivation is as bad for you as smoking a pack of cigarettes a day. I agree, that’s how it feels (not that I’ve ever smoked cigarettes).
As for leakage when getting in and out of a car or a bed or a chair, or walking more than a hundred steps, Kegels and PT *did* help me, but not completely. At night, for instance, I’m out of it when I stand up to get to the bathroom, and I often leak while on the edge of the bed, because I’m groggy and not thinking about Kegels. During the day, I have fewer leaks, but I still have some.
I have most of the bladder issues one can have: spasms, pain, OAB. Several women in my family experienced prolapse, and as I had a hysterectomy because of cancer, I experienced premature menopause, and am now at a high risk for prolapse, which really grosses me out. I can’t stand the thought of organs hanging out of my vagina. Menopause didn’t do me any favors for my bladder. The one thing that helps me the most, day and night, are Botox injections, though I have a high deductible and out-of-pocket max, so I often can’t afford them. If I could, I would absolutely get them quarterly as recommended. They are amazing. I’ve tried all the types of oral medications for bladder control, and none help much. They all significantly rot your teeth with dry mouth. I do still take Oxybutynin here and there.
One more thing: after the cliff fall, it took my bladder nerves six weeks to start showing signs of failing. It began with a bedwetting episode every couple of weeks; totally shocking. Then over the next nine months, all the bladder problems progressively got worse and worse as the nerves died - it takes them a while to die out. But since then, my symptoms have been stable, thankfully.
Ugh, those first few years of dealing with this were such a depressing nightmare. I was in bed for 2-3 years, because of my bladder and my pain. But after finding this forum, I gradually improved my acceptance of this and am now close to living a more normal life.
But I doubt that I’ll ever date again. When the cliff fall happened, my ex-husband and I had divorced two weeks prior. I haven’t dated significantly since then. I can’t imagine ever telling a guy that I wear a diaper. They need the visual stimulation of skimpy panties. And nobody wants to be peed on in the middle of the night when diapers fail, which they do at least four times a month for me, sometimes 15.
In closing, I want to re-emphasize that you *absolutely can* have bladder problems after a tailbone fall, which you have had. It’s a very simple explanation. There’s no cure. But at least it’s an explanation for which I’m grateful, because I’d really go crazy if I had no idea why I experience incontinence. I’ll be curious to hear what you doctor(s) say when you tell them about your tailbone injury. There are a few other people on the forum who are incontinent also because of spinal damage.
One last thing: have you been tested for MS? Incontinence can be one of the first symptoms of MS. MS damages your spinal cord and therefore bladder and bowel nerves. There are several people on the forum who have incontinence from MS.
Hugs, and I promise, slow-going though it may be, eventually you *will* get used to it. Hang in there!
Archives1
Staff member
@Koigal I don’t game, so I don’t know what to tell you about that, except that it’s important to become more aware of your bladder sensations. I’ve developed routines that help me avoid leaks, like peeing every time I enter and leave a store, before driving home. I always pee right before I leave home and as soon as I arrive somewhere. Some people here - mostly men who have had prostatectomies - have been told not to go when the urge strikes, or they’ll decrease their bladder capacity. No doctor has ever told me that, maybe because my incontinence is due to spinal injury.
So during the day I just get up to go when I first begin to get any sensation of a full bladder. That really helps me avoid leaking or losing control. Maybe you can set a 30-minute timer when you game, to remind you to go pee proactively. As I’m sure you’re aware, while you’re absorbed in gaming, real life is happening all around you, including your bladder filling. It’s more important to pay attention to real life than a game, so stay conscious of your bladder while you game. It will take a while to develop that new habit, but it sounds like you need to do so.
So during the day I just get up to go when I first begin to get any sensation of a full bladder. That really helps me avoid leaking or losing control. Maybe you can set a 30-minute timer when you game, to remind you to go pee proactively. As I’m sure you’re aware, while you’re absorbed in gaming, real life is happening all around you, including your bladder filling. It’s more important to pay attention to real life than a game, so stay conscious of your bladder while you game. It will take a while to develop that new habit, but it sounds like you need to do so.
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I dont play tons of games altho i do play some but i do sit and work at my home desk as a computer engineer. Sit to stand is always a problem. I either limit my fluid intake or hit the restroom every 45 min. If im gonna be in meetings fof a while and am particularly thirsty, well, you know, i wear something. Lol
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snow said:
@snow I did want to ask you, if you are ok sharing, if you had any other tips you use?
I couldn't agree more, the leaks can happen at any given time without warning, its 50/50 whether or not I will get a warning. This morning per example I was just reading in my bedroom and had a smaller to moderate leak, wasn't really gaming or doing anything distracting.It literally seems random sometimes. I have been following your tips of when entering a store, going first to the bathroom, beginning of shift etc. The trick now is learning these better habits. I need to shift my brain from focusing on the why, to focusing on how to deal with this.
I was diagnosed with a neurological disorder a few months ago, and have noticed the signal can come and go. I should be more focused on how to deal with the issues now, rather than the why *which doesn't matter, the answer can be multiple things.* I did want to ask you, if you are ok sharing, if you had any other tips you use?
I also did want to chime in and say I think there are people who would be interested in dating you. Your accident is not your fault, and while some people may not want to date, that doesn't mean you are shut out from dating. It all comes down to your choice though, because I understand the difficulty. I find it hard to make friends IRL, so I can't fully imagine dating either.
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I have similar movement-problem, know to expect it, and still forget to clench those muscles, sometimes. Mine include swinging leg to get into vehicle. Not a lot, but it is sure annoying/discouraging.
It is so weird to live with it when didn't have the problem for first 68 years.
Anyway, try to at least clench muscles before expected movement, anyway, see if helps.
It is so weird to live with it when didn't have the problem for first 68 years.
Anyway, try to at least clench muscles before expected movement, anyway, see if helps.
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Concerning the pelvic floor squeeze while standing up from sitting, seems to cause spasms. I recall during PFT this also happened and hypertonic pelvic floor might be a piece of the puzzle.
@snow I have a neurological illness which is linked to MS or Fibromyalgia. It is indeed possible that I have 1 of the 2 and it wasn't fully diagnosed yet. I think you are onto something but as I am waiting for insurance I should be more focused on prevention or making life easier.
I wanted to also say I am sorry to hear about your health issues. Living with chronic pain does sap the life out of you and similarly I am lucky to get 5 hours a night honestly. I am going to suggest it's a neuro issue when they look into my bladder but it's possible since I need a neuro dr anyway they can kill 2 birds with one stone. It also looks like I have anhydrosis/ can't sweat which makes me chug water more. The body is wonderful when it works well, but when it doesn't it can be a puzzle.
@snow I have a neurological illness which is linked to MS or Fibromyalgia. It is indeed possible that I have 1 of the 2 and it wasn't fully diagnosed yet. I think you are onto something but as I am waiting for insurance I should be more focused on prevention or making life easier.
I wanted to also say I am sorry to hear about your health issues. Living with chronic pain does sap the life out of you and similarly I am lucky to get 5 hours a night honestly. I am going to suggest it's a neuro issue when they look into my bladder but it's possible since I need a neuro dr anyway they can kill 2 birds with one stone. It also looks like I have anhydrosis/ can't sweat which makes me chug water more. The body is wonderful when it works well, but when it doesn't it can be a puzzle.
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@Koigal Having accidents when changing position is very common for me in the morning when I wake up, even though I don't 'wet the bed' in the traditional sense I have to wear protection as more often that not, I wet before getting out of bed.
It's interesting you mention MS/Fibromyalgia. I'm having a lot of neurological issues as a result of Long Covid - mobility issues, incontinence, brain fog. Fibromyalgia, Chronic Fatigue Syndrome and Guillain-Barré Syndrome look like the main contenders at the moment for me in terms of what's wrong. I also get what you mean about sometimes the signal being there, sometimes not. Sometimes I get next to no warning, other times a bit of one. It's worse when I stay hydrated.
It's interesting you mention MS/Fibromyalgia. I'm having a lot of neurological issues as a result of Long Covid - mobility issues, incontinence, brain fog. Fibromyalgia, Chronic Fatigue Syndrome and Guillain-Barré Syndrome look like the main contenders at the moment for me in terms of what's wrong. I also get what you mean about sometimes the signal being there, sometimes not. Sometimes I get next to no warning, other times a bit of one. It's worse when I stay hydrated.
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@Koigal Same as ever symptom wise really but I'm getting more used to living with physical issues and adapting which is making life easier.
If you had Covid, some of this could always be Long Covid related. Incontinence doesn't appear to be one of the main symptoms (and to be fair I did have milder issues beforehand) but it is being reported.
If you had Covid, some of this could always be Long Covid related. Incontinence doesn't appear to be one of the main symptoms (and to be fair I did have milder issues beforehand) but it is being reported.
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I am going to just keep focusing on doing similar to what you are doing in this case-the why isn't important anymore, the list is long, but dealing with the issues is the new challenge. I've accepted I am incontinent now, and the reason why doesn't matter *because, regardless, it isn't our faults*, so now the new thing is adjusting and getting better, healthier habits. I wish the US had more people or nurses to help with adjusting to the changes, but I don't know if that is a thing.
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Hi @Koigal, the closest I can think of in terms of people or nurses to help us adjust to changes would probably be a physical therapist.
I'm not sure how severely challenged a person would have to be to be referred to one, or even if there is someone (Google physical therapists) locally who can talk to you and offer options as far as helping you adjust to changes. Barring that, maybe your doctor knows of someone or can refer you to a program that has someone like you describe.
I have heard of nurses who specialize in wound-ostomy-continence, who are associated with various hospitals (and probably clinics) who may also be good at helping people adjust to physical changes.
I hope that helps!!
I'm not sure how severely challenged a person would have to be to be referred to one, or even if there is someone (Google physical therapists) locally who can talk to you and offer options as far as helping you adjust to changes. Barring that, maybe your doctor knows of someone or can refer you to a program that has someone like you describe.
I have heard of nurses who specialize in wound-ostomy-continence, who are associated with various hospitals (and probably clinics) who may also be good at helping people adjust to physical changes.
I hope that helps!!
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@billiveshere Thank you, that is a good idea! I just did a bit of research, and I know locally there are some options since I moved closer to the Mayo Clinic, and once I visit the urologist/neurologist I will definitely ask about meeting one of them, which should help. I have to hold off another month before I can fully get help, but it should be a really good thing when I am able to do so.
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My main adjustment now is really just being smart about diet/drinking habits, and as much as I hate to say it, even heavy pads just can't cut it really good. They seem to not absorb well enough on busier days and leak easily, which is super annoying. This morning I went for a light walk in the park and noticed I was getting slightly wet unfortunately, despite the pad not being full which is probably absorption issues.
@snow Thank you! Do you mind if I ask what brands or products you use or like best for your issues? I think when I am home pads are (sort of) ok, but its a very risky thing. I definitely wouldn't go to work with a pad again. I am currently using Depends and the Always Discreet, which does typically work most days.
@snow Thank you! Do you mind if I ask what brands or products you use or like best for your issues? I think when I am home pads are (sort of) ok, but its a very risky thing. I definitely wouldn't go to work with a pad again. I am currently using Depends and the Always Discreet, which does typically work most days.
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@Koigal I use the same products you do 
For a long walk in public or a movie or ballet or the propensity if a serious traffic jam, I wear either a Depend Silhouette pull-up or the same as what I wear at night, which is a Depend Night Defense. I like their colors and I doubt I’d be able to afford a mail-order brand of a tabbed diaper. I’m very grateful I can get my products almost anywhere in-person without having to do bulk mail-orders, and that my products aren’t too pricey. Don’t get me wrong: I’d rather have zero incontinence and have to spend $0 of my budget!
I absolutely prefer a pull-up to a tabbed diaper and I have tremendous empathy/sympathy for those who require tabbed diapers, particularly during the day.
If my condition worsens and I have to switch products - which could happen as my spine further deteriorates - I have saved up people’s very helpful advice here.
For a long walk in public or a movie or ballet or the propensity if a serious traffic jam, I wear either a Depend Silhouette pull-up or the same as what I wear at night, which is a Depend Night Defense. I like their colors and I doubt I’d be able to afford a mail-order brand of a tabbed diaper. I’m very grateful I can get my products almost anywhere in-person without having to do bulk mail-orders, and that my products aren’t too pricey. Don’t get me wrong: I’d rather have zero incontinence and have to spend $0 of my budget!I absolutely prefer a pull-up to a tabbed diaper and I have tremendous empathy/sympathy for those who require tabbed diapers, particularly during the day.
If my condition worsens and I have to switch products - which could happen as my spine further deteriorates - I have saved up people’s very helpful advice here.
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