Not feeling the need to go

[Milianna]

This is a bit of a surprising development honestly and it scares me.

For context, I do have urge urinary incontinence. Usually my urges come on suddenly and they're pretty severe. But this time around, I didn't actually have any urges. I didn't really feel anything other than a slight feeling of something being a little off. But when I decided to use the bathroom just to try, I realized that I had to go. And quite badly.

This does happen from time to time. But it never fails to scare me more than the usual urges. I'm not entirely sure why my bladder sometimes gives no signals for needing to go quite badly or it gives urges to go when there's not much in there in the first place.

 

[BLtheDL]

I’m kind of in the same boat, topped with stress incon and OAB. I wear a light pull-up to work so I can go when I need to. Sometimes strong urge with nothing but a few dribbles, sometimes almost no urge with full strong flow. I don’t get scared when this happens, but I sometimes get really frustrated. When not at work I give in and wear full diapers, I just go when I need to and not worry. It sounds counterproductive , but I think not stressing while in diapers helps my stress when in pull-ups, which in turn(sometimes) helps lessen my incon problems. Just my thoughts.

 

[mickdl]

For me, it's often the same. I also feel the urge very late. If I focus on my abdomen, I feel a slight pressure when the bladder has filled. When I recognize this, I can go to the bathroom and everything is fine - but this is something I have to actively do. If I miss it and the urge sets in, 90% of the time I can't keep it in. My doctor suspects nerve damage possibly related to damage to my OAB layer in my bladder.

I think I would check with the doctor. Maybe he has an idea.

 

[jdlake131]

Urges for myself always feel while awake. Urinary and bowel control is completely gone. I've been this since I was born. The only time I don't feel it is when I'm sleeping. After sleeping I always get up in the morning and feel that my diapers are soaked. For some reason I only have maybe a couple of bowel accidents per week while sleeping. During the day I always feel the urge. Wetting or BM's. The difference is in intensity. Sometimes quick and strong to sometimes slow or weak.

I wonder if you wet while sleeping. Are you awaking from sleep and feel your diaper is wet? I'm not sure your urges that are weak might be connected to sleeping. Ask your doctor.

 

[emp711]

Urges for myself always feel while awake. Urinary and bowel control is completely gone. I've been this since I was born. The only time I don't feel it is when I'm sleeping. After sleeping I always get up in the morning and feel that my diapers are soaked. For some reason I only have maybe a couple of bowel accidents per week while sleeping. During the day I always feel the urge. Wetting or BM's. The difference is in intensity. Sometimes quick and strong to sometimes slow or weak.

I wonder if you wet while sleeping. Are you awaking from sleep and feel your diaper is wet? I'm not sure your urges that are weak might be connected to sleeping. Ask your doctor.

Seems like we are pretty much in the same boat… Been dealing with neurogenic bladder since birth… Toilet trained at 4 in order to keep up appearances but always struggled with bladder incontinence. Back in diapers beginning at 16 and full-time when I moved out at 20 for college.

As the years have gone by I feel that my urgency and frequency have increased and any attempts to prevent are just too painful physically. My intensity cycles are the same as you described except I would give anything to sleep through the night and just wake up wet. I use prescription sleeping meds every night thinking that might help. They have done sleep studies and they say nothing is wrong medically.… All I want is uninterrupted sleep

 

[mickdl]

My intensity cycles are the same as you described except I would give anything to sleep through the night and just wake up wet. I use prescription sleeping meds every night thinking that might help. They have done sleep studies and they say nothing is wrong medically.… All I want is uninterrupted sleep

Yes - the constant waking up is really the worst, and it sucks big time. It's exactly the same with me. I wake up every time from the urge, and if it doesn't start right away, then at the latest when I try to get up.

In the meantime it has at least gotten better as far as the pain goes, I've had gepan instillations for a few months and they work quite well. I have started doing pelvic floor exercises again and now I can stop the stream again. This was not possible before because of the pain. In addition to the nerve problem, I suffer from IC. If the bladder mucosa really regenerates sustainably now, I already have one big problem less. However, I can't say yet whether this will really work...

 

[Milianna]

Urges for myself always feel while awake. Urinary and bowel control is completely gone. I've been this since I was born. The only time I don't feel it is when I'm sleeping. After sleeping I always get up in the morning and feel that my diapers are soaked. For some reason I only have maybe a couple of bowel accidents per week while sleeping. During the day I always feel the urge. Wetting or BM's. The difference is in intensity. Sometimes quick and strong to sometimes slow or weak.

I wonder if you wet while sleeping. Are you awaking from sleep and feel your diaper is wet? I'm not sure your urges that are weak might be connected to sleeping. Ask your doctor.

I don't really sleep and wake up wet. I wake up with an urge and it's a 50/50 chance that I will make it

 

[Tundra1975]

For me, I don't know I need to pee until it is starting to come out. As far as pooping goes, I don't know I need to poop until I get a contraction. Once the contraction starts, the poop is coming out uncontrollably within 5 seconds. This is all due to a ruptured L5-S1 disc. I am in constant spinal pain and that is likely why I don't feel the need to go. I don't feel numb downstairs like they say is a classic sign of nerve damage causing the incontinence. I just have no control since August 2018. Good quality adult diapers are the only reason I can still live a fairly normal life.

 

[FudgedInLuvs]

Happens to me as well with stress and OAB, but when I take liver detox (funky organ after too many prescriptions when sick) the urge hits me and I'm leaking like a cheap faucet. That's during the day when I have control, night, I don't risk it anymore

 

[georgianchants131]

I wet when I'm sleeping or while awake. I do feel strong urges but not in the same intensity. I'm not sure if this kind of wetting is connected for physical movement? Are you laying back or active walking? Maybe you're just getting older?

 

[jessraven]

I have had OAB and urge incontinence for years. But recently I have had moments where by the time I get an urge I’m already peeing. After several hours I sometimes go and barely get an urge. This is the most scary part about incontinence for me. It has developed into true loss of control with no warning. It is manageable with protection...but you may want to check with your doctor why it’s progressing like this.
Jess

 

[Milianna]

I wet when I'm sleeping or while awake. I do feel strong urges but not in the same intensity. I'm not sure if this kind of wetting is connected for physical movement? Are you laying back or active walking? Maybe you're just getting older?

It's more just like sitting to standing and it happens. And older... well... I'm only 19. Have been IC since I was 12

 

[Dalmatian]

For me, I don't know I need to pee until it is starting to come out. As far as pooping goes, I don't know I need to poop until I get a contraction. Once the contraction starts, the poop is coming out uncontrollably within 5 seconds. This is all due to a ruptured L5-S1 disc. I am in constant spinal pain and that is likely why I don't feel the need to go. I don't feel numb downstairs like they say is a classic sign of nerve damage causing the incontinence. I just have no control since August 2018. Good quality adult diapers are the only reason I can still live a fairly normal life.

Did you look into spinal surgery? My L4 Dash L5 also ruptured and pressed on the nerve and caused incredible pain. They were able to do a surgery called a micro discectomy. It was done laparoscopically and they removed the disc that was pressing on the nerve. Results were not perfect, but the pain is down considerably

 

[Jackieinwbpa]

Since my kidney transplant Sometimes when I stand up even when I don't feel like I have to go I get a really intense urge That I can't always hold until I get to the toilet.

 

[emp711]

I have had OAB and urge incontinence for years. But recently I have had moments where by the time I get an urge I’m already peeing. After several hours I sometimes go and barely get an urge. This is the most scary part about incontinence for me. It has developed into true loss of control with no warning. It is manageable with protection...but you may want to check with your doctor why it’s progressing like this.
Jess

Scary… I know it can be at first… Wearing a high quality tab diaper with a booster 24 7 365 is the best solution I found for that including wearing protection in the shower until right before you turn the water on

 

[Elhon]

I have the same problem off and on, sometimes it gets quite a bit worse. I learned how to feel with this a long time ago as it has always been true for me. I can avoid it by setting a timer from when I know I should use the restroom and just try to go even if I do not feel the urge. This also has a lot of triggers that make it more likely to happen, luckily one of the things is being diapered, it is far less common if I am not in a diaper, being tired, having to focus, booze all have the effect of not having the urge at all for me, that said the timer thing still works.

 

[GeorgeG]

Seems like we are pretty much in the same boat… Been dealing with neurogenic bladder since birth… Toilet trained at 4 in order to keep up appearances but always struggled with bladder incontinence. Back in diapers beginning at 16 and full-time when I moved out at 20 for college.

As the years have gone by I feel that my urgency and frequency have increased and any attempts to prevent are just too painful physically. My intensity cycles are the same as you described except I would give anything to sleep through the night and just wake up wet. I use prescription sleeping meds every night thinking that might help. They have done sleep studies and they say nothing is wrong medically.… All I want is uninterrupted sleep

I understand this. When sleeping, it when horizontal, I get bladder feeling, but also frequency. Thus I was at night. When it is bad, I would happily sleep through and use a nappy. Anything to get a good sleep.

 

[GeorgeG]

It is disconcerting. I think I have similar sometimes, so perhaps normal oab urge Incontinence experience. But perhaps mention it to a doctor if you are worried... Or put the question out into a big forum. ( Facebook etc)

This is a bit of a surprising development honestly and it scares me.

For context, I do have urge urinary incontinence. Usually my urges come on suddenly and they're pretty severe. But this time around, I didn't actually have any urges. I didn't really feel anything other than a slight feeling of something being a little off. But when I decided to use the bathroom just to try, I realized that I had to go. And quite badly.

This does happen from time to time. But it never fails to scare me more than the usual urges. I'm not entirely sure why my bladder sometimes gives no signals for needing to go quite badly or it gives urges to go when there's not much in there in the first place.

 

[Pino]

But it never fails to scare me more than the usual urges. I'm not entirely sure why my bladder sometimes gives no signals for needing to go quite badly or it gives urges to go when there's not much in there in the first place.

I have got OAB-Symptoms for about three years and Urge Incontinence due to a Neurogenic Bladder (UDM) for 11 month now.
Diagnose: Strong, painful urge at 120ml, Terminal Detrusor Overactivity at 250ml, Detrusor Sphincter Dysfunction (DSD). Classification CHESS A4.

I do not wet in my sleep, and since i take Betmiga in the evening i can sleep at least for 4 to 5 hours, did not chance the daily problems though.

Since three weeks i loose urine when bowing forward to relax my back pain without warning, that is brand new (and it scares me either).

I think the Nerve Damage can "develop", did you have an UDM?

 

[winterheart01]

I have got OAB-Symptoms for about three years and Urge Incontinence due to a Neurogenic Bladder (UDM) for 11 month now.
Diagnose: Strong, painful urge at 120ml, Terminal Detrusor Overactivity at 250ml, Detrusor Sphincter Dysfunction (DSD). Classification CHESS A4.

I do not wet in my sleep, and since i take Betmiga in the evening i can sleep at least for 4 to 5 hours, did not chance the daily problems though.

Pretty much the same here, though depending on how I lie on my back, side or tummy, sometimes i do wet in my sleep, sometimes i don't.
But before I had my sphincterotomy I had the exact same symptoms you describe, except the painful urge was at 100ml or even at 90
at 250ml I couldn't even get it open unless I pushed really hard so they also diagnosed DSD.
Two different hospitals gave me several options:
- intermittent catheterization disregarding all the trauma and scar tissue from previous surgeries in my urethra (but with possible leaks I'd have the double cost since insurance would only pay only diapers or catheters but not both and only 5 catheters a day.
- catheterisable urostomy: my diabetes professor said the complications of this surgery and the surgery itself would be far too invasive and cause problems, plus another patient who had this (I was sharing a room for a scar tissue surgery not long before) had it and said he leaked through the valve in his belly all night. So I was not looking forward to that
- sphincterotomy: my old urologist heard what other options the big fancy hospital offered me and understood I could not live with this, so he agreed to take out pieces, first a small one and see how that goes, then a bigger one because the small one grew back together and lastly everything, both sphincter and most of the bladder neck because there was an antibiotics resistant bacteria building up there and chronic infected tissue.

A friend of mine has a neurogenic bladder that won't empty at times, his sphincter works fine though, they tried a neurostimulator on him but that didn't work.
So After he heard I chose the last option, he now asked the same doc the same procedure, he's gotten only the stage 1 surgery though but he's already happy a lot of his pain is gone.

I don't regret my decision, practically it's easier for me, financially it's not but extra catheters + diapers would have been even more expensive.

As for medicinal treatment, they tried 4 types of alpha blockers to relax the tissue down there and all caused severe rhinitis (I already have non allergic rhinitis and it made it a lot worse) and botox in the sphincter didn't work anymore either.