A-Z

Living with a urinary catheter

Bladder spasms

Bladder spasms are contractions of the bladder. They may be caused by a urinary tract infection (UTI) or irritation from a catheter. They may also occur in any disease that affects the nervous system, such as multiple sclerosis (MS). People who have had surgery in this area of the body might also have bladder spasms. Certain medicines such as the diuretic frusemide (Lasix), spicy and acidic foods, and drinks such as coffee may also cause them.
 
Bladder spasms can be painful and often lead to an urge to urinate. Incontinence may occur if the bladder spasms continue because the contractions will force urine out. If a catheter is in place, the spasm can occasionally force the drainage bag off the end of the catheter. Spasms may also make it difficult to remove a catheter (see ‘Catheter changes’).
 

When Iain first had bladder spasms, he didn’t know what they were. He had bad pain in the abdomen...

View full profile
Age at interview: 35
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Over the years, at different stages, what have been the important questions for you?
 
It’s just basically things, simple things like you know, these problems I’ve got here, describe your symptoms to the doctor and getting the answer back. And I think when I got the original bladder spasms, I didn’t know what it was. I had a very painful sensation in my abdomen. I didn’t know what it was.
 
Once I’d explained that to the doctor, he said, “Oh that sounds like this.” So you should have this medication, which should maybe help that problem. So I tried about three or four different medications for that problem, and finally got the right one that fixed it. And it was fantastic. I got a new lease of life.
 
In terms of medications, what kinds of medication do you have to take on a daily basis now?
 
Well one, the primary one I take for my bladder situation is, I take one called Detrusitol®, which is one tablet a day for my bladder spasm and it works generally very well.
 
I do still get bladder spasms now and again, when that medication doesn’t seem to work any longer properly. I still always take it but if I get what’s called an intractable spasm, I have to take diazepam to break the cycle of the spasm. So I’m taking medication to stop it, it doesn’t, so I have to take diazepam just to break the sensation, break the cycle altogether and that generally fixes it altogether.
 
Yes. And any other medications during the day?
 
I take about ten or so different medications due to other symptoms of MS. Mainly primarily pain relief, I’ve a lot of chronic pain.
 
Yes. And they’ve generally been pretty good?
 

Yeah. 

Roger had a spinal cord injury, his neurological problem made his bladder worse:
 

Roger said that he was always in some sort of pain, either mild or more serious. He took baclofen...

View full profile
Age at interview: 66
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
It’s quite an extensive, problematical thing and a constant burden, as I say, because there’s always some sort of pain, whether it’s mild pain or worse pain.
 
In the catheter area?
 
In the bladder, catheter area, yes.
 
Do you have bladder spasms?
 
I have spasms naturally from my spinal injury. I don’t know about bladder spasms particularly, but I thought a bit like having an epileptic fit sometimes, you just shake. This hand, you see, if I pick up the hand, I can’t do that without the hand shaking. So it’s a neurological problem as well, which exacerbates any bladder problem, catheter problem. 
 
I can feel the left side of my body, well it’s a bit hypersensitive. I can’t move this arm, apart from doing that. I can move, I have movement, slight movement in this arm, although the hand’s mangled and I can’t write properly. I might be able to do some sort of sort of baby writing with this hand.
 
So you don’t have to take any specific medicines for the bladder?
 
No, I have to take baclofen for the spasms, it’s a tablet called baclofen for the spasms. Ah yes, I do take oxybutynin …

 

Jade had Fowler’s Syndrome.
 

Jade’s bladder spasms sometimes forced the bag off the end of the catheter, particularly when she...

View full profile
Age at interview: 22
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
When you’re having bladder spasms, sometimes it used to, the pressure of the spasms used to force the bag off the end of the catheter. You couldn’t, you can’t stop it. You don’t know when it’s going to happen. 
 
When I was pregnant also that happened a lot of times at the hospital. Three times in one day. I thought my waters had broken. Because I’d be sitting there and I’d just be soaked where the end of the catheter had, like where it must have been pulling round so much and the bladder spasm, and it used to just force the end off of the bag. 
 
And so then I felt that must, I realised then that, what it must feel like to be incontinent. Like it’s not nice getting covered in urine. And that’s why I much prefer self-catheterising.

 

Bladder spasms can be treated conservatively with pelvic floor exercises, and changes to fluid intake and diet, and often medicines. If these treatments don’t work, electrical stimulation through the skin (transcutaneous electrical nerve stimulation, ‘TENS’) might be used, sending mild electrical pulses to the bladder through patches applied to the skin.
 
In other cases, doctors may suggest a procedure called sacral nerve stimulation (also called sacral neuromodulation). A device is placed under the skin to deliver gentle electrical pulses to the bladder at regularly timed intervals. This may be used for severe bladder spasms and urge incontinence that does not respond to other treatments. It is not suitable for everyone. In rare cases, doctors may suggest surgery.
 
Text only
Read below

Jennifer describes what happened when she had sacral nerve stimulation.

View full profile
Age at interview: 26
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
I was eventually seen by a specialist and I was deemed suitable for sacral modulation.
 
Can you describe what happened? How is it done and everything?
 
It was done under a general anaesthetic. They do it in two stages. The first stage was using temporary wires and an external battery pack. So for the first stage I was put under an anaesthetic for about twenty minutes.
 
They put some very fine wires, very, very fine wires. When I say wires I imagine something like a telephone cord lead or an internet cable, nothing that, it’s like a piece of hair it’s that fine. It’s very, very fine and they have three of those going into your sacral nerves, just at the very, very, very lower bottom bit of your back. Which is completely covered with a plastic dressing, which you can’t get wet for the whole trial period. So it’s completely covered in.
 
They’re all joined outside the skin to a slightly thicker cable which then connects into a battery which then just used to clip onto like your belt. It was just like a pager or a bit of bigger mobile phone. And that would have the settings on it so that the trial is very straightforward. You just had the one box and it had 1 to 10 on it and a little dial and you would turn it up and turn it down depending, you know on your symptoms or how you were emptying your bladder.
 
So would you turn it up when you wanted to empty your bladder?
 
No. You’d leave it on a constant level all the time. If you turned it up too high, you would have pains down your leg where the nerve would be irritated, and you wouldn’t be able to straighten your toes out. So you find a comfortable, which I think about 1.5, 2 at first. So it just, you wouldn’t really have much sensation, you might have a bit of tingling in the neck of your bladder, you know down below, maybe a bit in your thigh, that’d be it.
 
And then you would just, over the first 24 hours you’d eventually be able to empty your bladder yourself. I found I didn’t get that much more of a sensation, but if I actually sat on a toilet then I could empty my bladder. So I still didn’t have much sensation, but I still, if I just tried, I could.
 
I had to have another general anaesthetic to have the permanent implant put in, at which stage they put very similar wires that they used before into my sacral nerve, which were then connected to an internal battery pack which is about the size of a £2 coin.
 
So all that’s inside of you then?
 
It’s all inside, yeah. The battery pack was just on, at the back of my right hip. So it was all implanted all inside me.
 
How did that operation go?
 

It was fine. Fine, it was a bit painful where the battery was, couldn’t lie on that side for the first few weeks, so yeah, it was fine.  

Complementary therapies include acupuncture, biofeedback (a method that teaches the mind to control normally automated body functions) and Botox (see below). Many people we interviewed talked about what had been prescribed to control bladder spasms.
 

To help control her bladder spasms, Jade’s consultant found a good combination of medicines,...

View full profile
Age at interview: 22
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
My consultant managed to get me on the right cocktail of drugs and things to kind of slow my bladder spasms down. And then he said, “Right, now your bladder spasms aren’t so bad, would you like to self-catheterise?” And I was like, “Yes, please.”
 
What drugs did he give you?
 
Oxybutynin and Vesicare®. He gave me prophylactic antibiotics as well, two different ones, at the same time to try to stop the infections. That would hopefully calm down my bladder. Because obviously I’d heard about self-catheterising and I wanted to do that. But every time that I’d asked to do it previously, it wasn’t the right time. He didn’t want me to end up with things worse and having to have an emergency suprapubic or urethral put back in. He wanted to say, “Right, when we manage to self-catheterise, it’s going to be a long-term thing. It’s not going to just be temporary.” 
 
So then we managed to get the right lot of drugs and things. And then he said to me, “Right, you could, I’ll teach you, we’ll teach you how to self-catheterise. But you’ll still have to keep your suprapubic catheter in til we’re very sure and convinced that when we take it out you’ll still be able to manage.” And so I said, “Okay.” And so then a lady [nurse] taught me how to self-catheterise.

 

 
Text only
Read below

Jennifer's bladder spasms were well controlled with a combination of three medicines. Drinking...

View full profile
Age at interview: 26
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
What anti-spasmodics do you find most helpful?
 
I find the combination of Buscopan®, oxybutynin and Merbentyl®, all three of them together work brilliantly for me. They have side effects with the oxybutynin, it causes dry mouth but sometimes that can be a good side effect because it makes you drink more and, with a catheter, you need to drink loads.
 
Oxybutynin patches are good as they have less side effects than the tablets, but most doctors don’t tell you they are available in patch form as they are more expensive for the PCT [Primary Care Trust] so you do have to get yourself in a pattern with the anti-spasmodics. I mean there’s a lot more out there, which for other reasons I can’t take, but it’s finding a combination of all of them that work for you really. 
 
I do think the most input, the best way to sometimes get rid of odd spasms is to drink loads because I found that, when I got bladder spasms, I drank less, because every time I emptied my bladder it hurt more, and it would cause spasms again. So I’d drink less, but if you didn’t, if the more you drank and the more you drained out each time actually, the less spasms you would get. 
 
And it sounds really stupid when you say to someone, “You need to drink loads to get rid of the spasms.” But “Oh I can’t do that. It’s too painful.” I said, “Yeah but once you, you know, are a few hours in, you’ll really notice the difference of it.”

 

A few other medicines were mentioned too. For example, Frances, with multiple sclerosis, had used Sativex®, a spray made from cannabis, to prevent bladder spasms. Before a medicine can be marketed in the UK, it must be licensed by either the European Medicines Agency (EMA) or the British Medicines and Healthcare products Regulatory Agency (MHRA). Sativex is licensed by the EMA, allowing specialists to prescribe it. Frances used the spray before the district nurse comes to change her catheter.  
 
All medicines have side effects which may not be obvious. In some people oxybutynin caused a dry mouth. Jennifer found oxybutynin patches better than the tablets, but thought doctors might not tell people about them because they are expensive. Other people were not sure which of their medicines caused which side effects.
 

Frances, with MS, described the ‘horrendous’ side effects of oxybutynin. It dried her mouth and...

View full profile
Age at interview: 64
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well the tablets have such a dreadful side effect. They dry your mouth up so that you gag and you choke. And it even dries your eyes as well. They were horrendous but they didn’t do what they were supposed to do, by stopping your bladder from working. And I can remember saying to the urologist, you know “Before you prescribe these to anybody else, will you just please take them yourself?” Because they are dreadful.
 
In the end, I got my GP to refer me to another urologist and he said straight away that I could have this suprapubic catheter done. And I didn’t really know anything about it then.
 
Can you tell me what the name of these tablets were?
 
Oxybutynin, yes.
 
The side effects that you had were the dry eyes?
 
It was the gag, I couldn’t speak to anybody. My mouth was so dry that if I tried to speak I would be, you know, I would gag all the time. It was horrendous.

 

 
Text only
Read below

Sharon 'couldn't put up with' the side effects of oxybutynin. She found she got more bladder...

View full profile
Age at interview: 52
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
You said you take Buscopan?
 
Yes…
 
Do you get any side effects from that drug?
 
Not from that one, no.
 
And do you take that at other times as well?
 
I only take it if I’ve got really bad spasms.
 
Do you sometimes get spasms at other times then?
 
A lot, yes, I get them a lot…
 
Has anybody else, any other health professionals been involved in your care apart from the GP, the district nurse and the consultant?
 
I did see a continence nurse once when I first, after about a year of having it [catheter] because I was in so much pain all the time. And she was the one that got the GP to write up for the bladder spasm tablets. I was on oxybutynin then but I couldn’t put up with the side effects of them.
 
That was a year after you’d had the catheter?
 
Yes. I was referred to her from my district nurse because my district nurse had said she knows more than I know, you know about bladder problems. And she wrote to my GP about the low dose antibiotic every day and the bladder spasm tablets, but until then I hadn’t had anything…
 
...the only thing I can probably think of is, if anyone has to have a suprapubic, I think you’re probably getting more bladder spasms wearing a bag than you do not wearing one.
 
How have you found that out?
 

Because when I used to put one on at night, like I said, say it was only for a week but I found I used to get quite a lot of pain. Then last week, as I say, when I had one, I just wore one all day so I could drink plenty and flush it all through, I could sort of feel the urine coming out and it’s like cramping at my bladder. And as soon as I shut it off, everything seems to settle down. And then I think other people that I’ve spoken to that do wear bags, they seem to get a lot more bladder spasms than I do.  

 

Richard took several medicines for bladder spasms, including baclofen, oxybutynin and diazepam....

View full profile
Age at interview: 59
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Were you ever given any medication to take daily?
 
Well I am on daily, I’m on anti-spasmodics, baclofen antispasmodics and oxybutynin for bladder spasms. And that’s it. Oh I have painkillers, of course, if I need them but I try not to use them. And diazepam, occasionally I’m diagnosed diazepam to help with night time spasms really.
 
Have you had any side effects with any of them?
 
I don’t think I have. But it’s hard for me to tell because I don’t know if I’m, if it’s giving me stomach ache. I don’t know other than spasms again. If it causes diarrhoea or constipation, again you know it’s hard to know if it is coming from the change of medication for me really.

 

Medicines controlled Iain’s bladder spasms reasonably well (see above), but sometimes he had ‘intractable spasms’ which didn’t respond. He plans to have some injections of botulinum toxin (Botox) which can reduce nerve-related bladder spasms in children and adults. It prevents nerves from releasing the transmitter substance that tell muscles to contract. Botox is injected directly into the bladder muscle wall. The doctor examines the bladder via the urethra, using a cystoscope, and then injects the Botox into the bladder wall using a special needle passed through the cystoscope. The procedure is done under local or general anaesthetic.
 
Text only
Read below

Iain sometimes gets 'intractable' bladder spasms because of his multiple sclerosis. A urologist...

View full profile
Age at interview: 35
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
Although I’m seeing, I saw a urologist recently and I’m getting Botox into my bladder. Because of the MS, I get a lot of bladder spasms. That’s a lot more than I should take, ‘cos for that reason alone so the Botox will hopefully stop that spasm from happening. But I’ll still keep the suprapubic catheter in place. And so, rather than using a bag, I’ll use a valve, ‘cos I can’t retain any urine currently. My bladder is too, just spasms too much to retain anything.
 
But the Botox will hopefully stop that and I’ll be able to use my bladder for its purpose of storing urine. That’s what it’s meant to do from nature, and so that will hopefully improve things a lot for me, which is what I’m looking forward to a lot. And that is basically the situation I am now.
 
This is all new treatment is it?
 
Yeah. The consultant I see, the urology consultant, doesn’t do Botox, but his colleague does. So you have to transfer from one list to another list, which is a bit long winded and cahooted, but it’s the politics of systems I suppose.
 
I’m getting it in November.
 
In November you’re getting that. What will that be? Injections?
 

It’s like, it’s done through a thing called a cystoscope. Basically, it gets put into your bladder urethrally, and it’s injected internally into the bladder. 


While Botox injections reduce the frequency and severity of bladder spasms in many patients, in some people they don’t and, occasionally, symptoms get worse. Other side effects include difficulty in passing urine. Some people cannot pass urine at all and have to self catheterise or have an indwelling catheter until Botox wears off. How long the effects of the injection last varies among patients.  

Donate to healthtalk.org

Last reviewed October 2018.

donate
Previous Page
Next Page