Sudden Spasms

[PamperedBabyBear]

I was diagnosed with Interstitial Cystitis a year ago. I've been having to be out of diapers for a few months for some fertility tests. So im having to go to the restroom more thankfully im on ssdi because of a disability so im not at work having to deal with that. I notice sometimes il have a spasm where il drip or almost pee myself. it comes out of nowhere especially when im laying down il have a sudden muscle convulsion in my lower back and lower front abdomen has anyone else had that problem before? is that a pee spasm? or what idk. it practically makes my whole body move when it happens id be laying down and it would come out of nowhere and feel like im about to pee all over myself. Seems to be sometimes triggered by cold air. I originally thought i had neurogenic bladder which was one of the reasons i went to get tested and ended up being diagnosed with interstitial cystitis. I was having really bad urinary retention which sometimes i still have . I also notice that sometimes when im sitting down i dont notice i need to pee and il feel a pain in my kidney it feels like. I had a catheter injury 3 years ago where that was the first time i ever had urinary retention and my sphincter felt like it was clamping down by itself . i still believe my sphincter sometimes has issues but of course the doctor never noticed. I sometimes pee at a 45 degree or 90 degree angle . Sometimes il use a baby diaper as a incontinence wrap to sleep because my bladder keeps me up sometimes.

Anyone have those violent spasms come out of nowhere though ? that seems to happen mostly when im laying down. When it happens it basically causes my whole lower back to jolt upwards and feel like im about to pee myself where i sort of squirm for a moment feeling like im going to pee myself.

 

[SparkyDog]

I get spasms once and a while which if severe enough can cause some loss of urine. Dr put me on magnesium and really helps with spasms / cramps

Have you discussed this with your GP or urologist?
You just said the doctor didn't notice

When you pee you mean the flow is at a bizarre angle and hard to hit the toilet?
Again definitely a discussion for the urologist. I always pee in a sort of split stream but urologist says this is just how my urethra opens.

Baby diaper is a good means to stop some dribbles
If you have larger episodes of urine loss might want to look into an adult diaper or pullup. Baby diapers can't generally hold adult bladder size of urine + hard to keep in place

 

[PamperedBabyBear]

Ive been going to a urologist i had a scope done and he noticed i have interstitial cystitis. I normally wear adult diapers . What i meant by baby diapers is sometimes i was using them recently as a wrap at night when laying down sometimes being i cant heat up things because of fertility tests. Sometimes i pee at a hard angle and it will end up landing outside the toilet because of it.

 

[SparkyDog]

Ive been going to a urologist i had a scope done and he noticed i have interstitial cystitis. I normally wear adult diapers . What i meant by baby diapers is sometimes i was using them recently as a wrap at night when laying down sometimes being i cant heat up things because of fertility tests. Sometimes i pee at a hard angle and it will end up landing outside the toilet because of it.

Thanks for the additional info.
Only personal advice try the magnesium it's available over counter or health stores. Does take a few weeks of continued use to see changes.
Or can also discus that with GP

I understand now what you mean as a wrap. Makes sense trying to keep the area cool for fertility. I've been in diapers basically my whole life have probably fried everything down there.

If peeing at weird angles might benefit you to sit while peeing to keep things in the bowl?

 

[PamperedBabyBear]

i mention the weird angles because I believe the sphincter is still clamping down by itself sometimes causing it because i do have chronic urinary retention somewhat

 

[SparkyDog]

i mention the weird angles because I believe the sphincter is still clamping down by itself sometimes causing it because i do have chronic urinary retention somewhat

Hmm to me sphincter is open or closed or partly open
wouldn't affect angle of flow

 

[sport1]

I was diagnosed with Interstitial Cystitis a year ago. I've been having to be out of diapers for a few months for some fertility tests. So im having to go to the restroom more thankfully im on ssdi because of a disability so im not at work having to deal with that. I notice sometimes il have a spasm where il drip or almost pee myself. it comes out of nowhere especially when im laying down il have a sudden muscle convulsion in my lower back and lower front abdomen has anyone else had that problem before? is that a pee spasm? or what idk. it practically makes my whole body move when it happens id be laying down and it would come out of nowhere and feel like im about to pee all over myself. Seems to be sometimes triggered by cold air. I originally thought i had neurogenic bladder which was one of the reasons i went to get tested and ended up being diagnosed with interstitial cystitis. I was having really bad urinary retention which sometimes i still have . I also notice that sometimes when im sitting down i dont notice i need to pee and il feel a pain in my kidney it feels like. I had a catheter injury 3 years ago where that was the first time i ever had urinary retention and my sphincter felt like it was clamping down by itself . i still believe my sphincter sometimes has issues but of course the doctor never noticed. I sometimes pee at a 45 degree or 90 degree angle . Sometimes il use a baby diaper as a incontinence wrap to sleep because my bladder keeps me up sometimes.

Anyone have those violent spasms come out of nowhere though ? that seems to happen mostly when im laying down. When it happens it basically causes my whole lower back to jolt upwards and feel like im about to pee myself where i sort of squirm for a moment feeling like im going to pee myself.

I also have some spasms and being older leak.

 

[Pino]

When it happens it basically causes my whole lower back to jolt upwards and feel like im about to pee myself where i sort of squirm for a moment feeling like im going to pee myself.

Hi, i am not really sure about your story, my English seems not to be good enough, but i think this happens to me either sometimes.

I have got Neurogenic Bladdder (NDO) and DSD and i am suspected for interstitial cystitis.

When my bladder cramps, sometimes, when lying on my stomach, my lower back will rock forwards (involuntary) and push pee out, this never happens in other positions. I thought of this as weird but never talked to my urologist about that.

Is this that what happens to you?

I have got spinal cord injury L4-L5, it is not sure if this is the reason for my problems or not, but i am sure it has to do with some aspects.

 

[sport1]

Hi, i am not really sure about your story, my English seems not to be good enough, but i think this happens to me either sometimes.

I have got Neurogenic Bladdder (NDO) and DSD and i am suspected for interstitial cystitis.

When my bladder cramps, sometimes, when lying on my stomach, my lower back will rock forwards (involuntary) and push pee out, this never happens in other positions. I thought of this as weird but never talked to my urologist about that.

Is this that what happens to you?

I have got spinal cord injury L4-L5, it is not sure if this is the reason for my problems or not, but i am sure it has to do with some aspects.

I 'am sorry but when the spams hit usually wet myself.

 

[PamperedBabyBear]

Hi, i am not really sure about your story, my English seems not to be good enough, but i think this happens to me either sometimes.

I have got Neurogenic Bladdder (NDO) and DSD and i am suspected for interstitial cystitis.

When my bladder cramps, sometimes, when lying on my stomach, my lower back will rock forwards (involuntary) and push pee out, this never happens in other positions. I thought of this as weird but never talked to my urologist about that.

Is this that what happens to you?

I have got spinal cord injury L4-L5, it is not sure if this is the reason for my problems or not, but i am sure it has to do with some aspects.

"When my bladder cramps, sometimes, when lying on my stomach, my lower back will rock forwards (involuntary) and push pee out, this never happens in other positions. I thought of this as weird but never talked to my urologist about that." , Yes that is exactly what happens to me it happens quick too, except i dont leak yet but i feel like im going to it is a urge that seems to get stronger feeling to pee. that is exactly what im describing

 

[PamperedBabyBear]

Hi, i am not really sure about your story, my English seems not to be good enough, but i think this happens to me either sometimes.

I have got Neurogenic Bladdder (NDO) and DSD and i am suspected for interstitial cystitis.

When my bladder cramps, sometimes, when lying on my stomach, my lower back will rock forwards (involuntary) and push pee out, this never happens in other positions. I thought of this as weird but never talked to my urologist about that.

Is this that what happens to you?

I have got spinal cord injury L4-L5, it is not sure if this is the reason for my problems or not, but i am sure it has to do with some aspects.

" this never happens in other positions." i experience similar

 

[PamperedBabyBear]

Hmm to me sphincter is open or closed or partly open
wouldn't affect angle of flow

i read that it could , that peeing at a right angle can mean nerve damage which i sometimes feel i had some nerve damage from a cath injury 3 years ago. Basically the sphincter closed somewhat would cause the fluid to hit the walls and twirl until it comes out at a hard angle

 

[SparkyDog]

i read that it could , that peeing at a right angle can mean nerve damage which i sometimes feel i had some nerve damage from a cath injury 3 years ago. Basically the sphincter closed somewhat would cause the fluid to hit the walls and twirl until it comes out at a hard angle

Hmm Intresting
Have you had a cystoscopy?

 

[PamperedBabyBear]

Hmm Intresting
Have you had a cystoscopy?

yea i had a cystoscopy that revealed bleeding walls of my bladder so they diagnosed me with interstitial cystitis but they didnt apparently notice my sphincter spasming which i still think it does . it did a lot after the cath injury where i could barely pee for days and then i had the retention issue a month later really bad and ive had retention on and off over the last 3 years now

 

[SparkyDog]

yea i had a cystoscopy that revealed bleeding walls of my bladder so they diagnosed me with interstitial cystitis but they didnt apparently notice my sphincter spasming which i still think it does . it did a lot after the cath injury where i could barely pee for days and then i had the retention issue a month later really bad and ive had retention on and off over the last 3 years now

Yikes that's rough
I'd make a point of making sure your urologist understands these spasms you're having next visit
Hopefully something can be done

 

[daylight]

@PamperedBabyBear, the best advice is your urologist’s, make an appointment.

 

[PamperedBabyBear]

i just went back for a appointment he told me that involuntary movement was a bladder spasm. He is having me take antibiotics for 6 weeks then test my fertility another 3 months from now. its hard being out of diapers and also not being able to trust my bladder all the while being bombarded with the desire to wear diapers on top of it. im almost at the point i dont care if i can have kids anymore i spent most of my life wanting to have them and that desire to have family has just be a major source of despair for years. Especially since my ex wife ended up having a kid to someone else