Reasons for needing a long-term indwelling catheter

Indwelling urinary catheters are needed by people whose bladders will not empty fully (urinary retention) or empty at inappropriate times (incontinence). Intermittent self catheterisation (ISC) is preferred as a method of draining urine from the bladder but this cannot be done by people with poor use of their hands or with loss of cerebral function because of coma or serious medical illness.

An indwelling catheter might be used long-term by someone with:

  • a condition that affects the nerves that control the bladder, such as spina bifida, multiple sclerosis (MS), stroke or spinal injury
  • a chronic debilitating or terminal illness with loss of mobility or sufficient awareness to be able to use a toilet or commode

A consultant explains why people might need a permanent indwelling catheter. The many reasons…

Age at interview 49

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Perhaps you could summarise some of the different reasons why people might want to have a catheter?

Yes. One of the major problems, of course, is when somebody goes into retention of urine and are unable to empty their bladder. it’s a common emergency amongst older men when they develop an enlargement of the prostate and they cannot pass urine.

But there are other occasions when it’s not possible, for example people who suffer from spinal injuries. Their bladder is then paralysed and the bladder fills up and it cannot drain. Then, of course, that can lead to back pressure on the kidneys and serious complications follow.

Any neurological condition that affects the behaviour of the bladder, the physiology of the bladder, of course can affect micturition [urination]. Under those circumstances the bladder fails to empty and fails to empty completely. That’s when complications arise.

So people who suffer from spinal injuries, multiple sclerosis, strokes in older age, can develop problems with the bladder, and which needs to be drained.

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Here, the people we interviewed talk about why they needed a long-term indwelling catheter. Most knew why they needed one, but a few were unsure. Several had other health problems to live with as well as their incontinence.

Spinal cord injury

Some people we spoke to had had a spinal cord injury (SCI). After a SCI, the bladder and brain can no longer ‘talk’ to each other. Depending on the type of injury, the bladder becomes either ‘floppy’ (flaccid), failing to contract, or ‘hyperactive’ (spastic or reflex), when it contracts inappropriately too often. A floppy bladder loses its muscle strength and too much urine can easily overstretch it. This can damage the bladder wall and increase the risk of infection. A hyperactive bladder contracts automatically, causing incontinence. Many people who had had a spinal cord injury were paralysed and had limited use of their hands.

Richard became paralysed in a cycling accident. At first he was given a urethral catheter. This…

Age at interview 59

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It was a cycling accident. I was coming home from work, and coming down this hill, messing about really, racing with a friend on our way home. I ran into the back of a parked van.

Then the next thing I know I’m in hospital of course, and at that time it was a urethral catheter, which I had for, oh I don’t know, cos they were trying to get me onto intermittent catheterisation. But that didn’t work. I had trouble with bleeding so, in the end, we decided that the suprapubic catheter was the best answer. Well, I had the choice, but overall it didn’t seem that there was any real other option. Yes.

How long ago was this?

Well I’ve been out of hospital, it was just before I left hospital and I’ve been out of hospital now four years, yeah four years.

Four years. Can you tell me what happened when you were first taken to hospital? If you could just go through stage by stage, what happened?

Yeah.

Until then, coming back home?

Well of course first I knew I was in, I think it was a high dependency and at that time. I hadn’t had any treatment or consideration for my spinal injury which is what I sustained. Cos I got damage to my neck, to my mouth, so they tidied me up and then I went over to the spinal injuries unit about three days after I’d gone into hospital.

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Melanie had a horse riding accident. She was paralysed from her arms down and had limited use of…

Age at interview 55

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Well in April 2010, I fell off my horse jumping over a small fence, and landed on my face and my body, flipped over. I broke my neck at C6 and my lower back was fractured. But it was the neck injury that was the bad one, so I was left as an incomplete tetraplegic with impaired hand function and a loss of function throughout my body from my arms down.

I was in hospital. I had an operation. I was in intensive care and then high dependency. I had an operation to plate my neck and I was, of course, at that point, on an indwelling catheter.

A urethral?

Urethral indwelling catheter. And I had no concept of, because I was out for the count with morphine, I had no concept about bladder and bowels being paralysed or anything like, any of the sort of the side effects of paralysis that ordinary people, you just don’t know or think about.

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Ian realised that he’d been catheterised only when he came round following his accident. He became paralysed after a rugby injury. Several people had had so much to come to terms with at the time of their accident that they didn’t really think about their continence problems.

When Stuart broke his neck, he became paralysed on his right side and could feel nothing from his…

Age at interview 61

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I broke my neck in 1997. Prior to that, I had been a very active, fit individual, running my own business. Life changed totally and, having been very independent, I suddenly became totally dependent, spending a day under a year in a spinal unit. During that, my injury was a spinal injury, C5-C6. Namely, I broke my neck.

How did you break your neck?

I had a fall on a river bank and just landed wrong. I lost the use of my hands, was paralysed on my right hand side, had little use of my left arm. I had been right handed. And no feeling from the armpits down.

Things have improved over the 14 years. I now have partial use of both arms but with very limited feeling and no use of my hands, no feeling or muscle function from the armpit’s down.

I was told by the hospital I required an indwelling suprapubic catheter, which meant nothing to me. It was the least of my concerns at the time, and so they just went ahead and did so. I don’t remember, but I assume prior to that, I must have had intermittent indwelling catheters through my penis, but I have no recollection of that period. I was fitted with a size 14 channel catheter and I remained with that for most of the time.

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Vicky and Dave were both abroad when they had their accidents. Vicky had been skydiving in Spain and Dave had been diving in Portugal. Both spent some time in an intensive care unit and, at first, were given a urethral catheter. Roger was on a cricket tour in India when he had an accident in a 3-wheeled taxi. He wasn’t aware he’d been catheterised until later.

Dave describes what happened before he was catheterised in hospital. He’s been paralysed from the…

Age at interview 31

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I suffered a severe spinal cord injury in September 2005 at the age of 25. I was living and working in London at the time. Three years after graduation from university I went on holiday to Portugal with a number of friends. One day while on the beach I went down to the water for a swim, dived into the water, into a wave off my feet, and suffered a spinal fracture of the neck, resulting in immediate paralysis from the neck downwards.

I suppose luckily I had two friends that were with me at the time, because obviously complete paralysis means you can’t move. So I was face down drowning in the water, but the two friends and some passers-by managed to get me out of the water in time, on to the beach. I have to say that it was a fairly painless experience, and certainly the most difficult sensation was drowning.

Coming out on to the beach, I was then taken to a local hospital. I was on the Algarve in Portugal. At which point I was told that I was going to have a series of tests. If I had indeed broken my neck, which they thought I might have done, I would then be airlifted to Lisbon and operated on.

About an hour later they came back and said, Yes, we’re taking you up to Lisbon So, yes, helicopter up to Lisbon, stayed there in traction overnight with my neck to extend the compression fracture. Then I was operated on the next morning with an anterior fixation of my neck. I then remained in Lisbon for a further eight days before having an air ambulance back to a specialist hospital spinal injuries unit.

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Michelle had an uncommon experience when she became paralysed after a routine jaw operation.

Michelle came round from anaesthetic and was paralysed. Doctors didn’t know what had happened…

Age at interview 45

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I’ve been paralysed since the age of 16, back in 1982. I went into hospital for a routine jaw operation and, unfortunately, when I woke from the anaesthetic I was paralysed from the C6 level down.

Since that day my injury level hasn’t changed at all. It’s been quite stable and what that means is that I’ve got no feeling from just the top of my chest. I have partial feeling down my arms. I can just feel the thumb and first finger side of my arms but no other feeling whatsoever. So I’m doubly incontinent and I have no finger or hand movement to speak of.

Did you wake up with a catheter?

No, I didn’t. No, because they didn’t realise in the hospital quite what had happened to me until I woke up and was able to summon somebody to my side because I woke up feeling strange, because obviously I couldn’t feel anything. When I went to move my arms, my arms just fell off the side of the bed and I couldn’t do anything.

My jaw was wired up at the time because of the operation I’d had done. So it was quite difficult for about 20 minutes to actually summon somebody to my aid. As soon as I did and they realised that I couldn’t move and I’d got no feeling, it was a bit like, it was a bit like a panic. Doctors and nurses appeared from everywhere, and they were trying to find out what had happened to me. They were trying to find out from me where I could feel, what I couldn’t move, what I could move.

For the next few hours it was just sort of being seen by umpteen doctors with them all trying to work out what was happening. So I didn’t actually have a catheter inserted till the following day when they realised, when they came to sort of move me about in the bed that I was wet from, where obviously my bladder had emptied itself by itself.

How were you feeling through all this time?

It was a shock to the system I suppose would be a polite way of putting it. But I mean it was just, because it was just all so unknown, I just hadn’t got any clue what was going on. So it was real sort of panic and not understanding what was happening.

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Rob was diagnosed with cauda equina syndrome, a serious condition where the nerves at the very bottom of the spinal cord become compressed. He was catheterised when he couldn’t pass urine in hospital and has had an indwelling catheter ever since.

Rob was in hospital for several months and was given a urethral catheter. When it was removed, he…

Age at interview 70

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The doctors established very early on that I’d got a blood infection and the blood infection got into my spine and I had to have an operation. Unfortunately, because of my low platelet count, they couldn’t operate on me for a week or so while they were making sure I’d clot while the system built up. As I say, that period of about three months I just lay, I was on a, totally flat on my back. I had to be moved from time to time, otherwise I was flat. And obviously from that day, from that whole period, I was catheterised.

I then, after they then started to sit me up and put me into a wheelchair and I was transferred to rehabilitation. I was in rehab, I stayed there for about, approximately two months during which time they managed to teach me how to get in and out of bed, in and out of a wheelchair, on and off the loo and in and out of a car.

They also taught me to use crutches for just a few paces for around the ward. And I was then discharged and came home and came under the care of my local GP and the local district nurse.

The aim was that I would remove the catheter after a period of rehabilitation at home. This was trialled and proved to be totally unsuccessful.. Since then nobody has attempted the trial again. I think we’ve had to learn to accept that I don’t have the necessary safety control to be able to live a normal social existence without the help of a catheter.

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Multiple sclerosis

Some of the people we spoke to had multiple sclerosis (MS),a neurological condition that affects more than 100 000 people in the UK (Multiple Sclerosis Society October 2018). Some of the first symptoms they’d had were urinary problems. When these got worse, the doctor recommended an indwelling catheter.

Iain started ISC because he had overnight incontinence. When he had continence problems during…

Age at interview 35

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Eventually when I was then diagnosed, the answer was, Yes, you were right, you do have MS I goes, Okay, fine. Thank you And off I went on my way. Carried on back into work as normal, cos at that point it never really affected me overly much, apart from overnight incontinence problems I had which, over time, led onto day time issues. And I used intermittent catheterisation for that, cos I was having bladder retention and that’s got around that problem. No problems there, it was all fine.

But, over time, I got reduced sensation in my fingertips making catheterisation that way very difficult to do, so it made sense to think upon other ways of doing things. And when I saw my urologist and he suggested possibly an indwelling catheter, I said, Okay, well, we’ll give it a try

I said, I’m still a very young person, I’d still like to be able to do things on a normal basis easily And I said, cos I’d researched quite a bit through the internet other types of catheters, and I said, Well would a suprapubic one be better He said, Well, yes we can do it that way So we did that and that’s the way things still are.

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Some people with MS wore pads when their incontinence first started. Others were prescribed oxybutynin at first, then Intermittent self catheterisation (ISC), and finally an indwelling catheter. Oxybutynin is a drug which relieves urinary and bladder problems by reducing muscle spasms of the bladder.

Frances’ first symptoms started when she was pregnant. Incontinence was one of the worst aspects…

Age at interview 64

Gender Female

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I started with MS when I first became pregnant with my daughter, who is now 29, so it’s nearly 30 years ago. To begin with, it was almost as if I’d had a stroke. It took away the use of one side, face, everything just dropped. It was as if I’d had a stroke. And I couldn’t feel my feet touching the floor when I walked. And I couldn’t stand even in the shower without, I was so, the balance had gone completely.

Was this after you’d had your daughter?

No, this was whilst I was pregnant and my speech was so slurred. I just sounded as if I was drunk and it was very frightening. And I had suspicion that, I mean the GP, I had some tests done and the GP told me that it was inflammation of the spinal cord, which I knew meant, I had a big, guessed it was MS. But it wasn’t until about, my daughter was about a year old before they actually, you know they actually confirmed and said that that was what it was.

But I started, one of the worst things was I kept wetting myself. I’d got no control over my waterworks at all and, being clumsy and slow on my legs, it meant it was just a job to get to the toilet in time as well. And I had to keep padding up and it was being, you know I’d got a baby in nappies and me in nappies as well. And that went on for a long time. And, you know, it was just horrendous. It takes up all of your self-esteem. You know, it really is pretty grim.

I mean at night I used to have to have things in the bed and, you know, it was awful, awful. And then it was suggested to me that I could have this suprapubic catheter done.

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Peter Z, who’d had MS since his 40s, collapsed at home and was taken to hospital where he had an emergency operation

Peter Z woke up to find he had a colostomy bag and urethral catheter. He has lived with an…

Age at interview 76

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I just woke up in hospital and there was this catheter in, and I had to They gave me a wheelchair and a catheter and I just thought, Oh I’m in trouble here And that was just, I didn’t know what was happening until I woke up sort of thing, which

So you’d gone into the hospital for?

Well a colostomy, I’d been taken in as an emergency, and woke up with these gi-normous scars and a little bag on me, here.

How long ago was that?

Oh. That must be, oh I can’t think of a date, 1984. It’ll be 30 plus years I suppose. I think it was 1985.

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Prostate problems

Prostate problems had led some of the men we interviewed to needing a long-term or permanent catheter. Derek’s bladder problems started when he needed to urinate frequently, including during the night. He was later told that he had an enlarged prostate. Like a few other people we spoke to, he’d been living with several other health problems too so was not considered fit enough to have surgery.

After operations for prostate cancer, Kenneth was incontinent. Before surgery he had urinary…

Age at interview 80

Gender Male

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What was the reason for having a catheter in the first place?

Basically the loss of the ability to hold my urine in my body. It just kept, it just trickles out due to the operations that I’ve had for the prostate cancer.

So it was after the operations you found you couldn’t hold your urine?

Yes. Before one couldn’t go, or one did manage it sometimes, but barely a thimbleful and you’d be going out to the toilet umpteen times during the evening and night.

So you had a urethral catheter put in?

Yes

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John Y wasn’t sure whether a prostate or neurological problem was causing his bladder trouble…

Age at interview 77

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I’m 77 and I retired just before my 63rd birthday because I was having neurological problems, largely to do with my legs. At that time I didn’t have any urinary problems at all. But the disease I’ve got is progressive and my arms are affected. My legs got more and more bad, weak, till I became wheelchair bound about four, five years ago. And my arms are beginning to be affected now too.

About two years ago I was aware that I was having to strain to pass water and I did try and mention to my GP but he didn’t take it seriously at the time. I said, Perhaps I’ve got retention with overflow. He pushed me in the tummy and said, No, you haven’t. I think he may have missed a chance at that point to spot that something was going on.

Anyway, I used to control my, I used to have urgency micturition [urination] which was a great problem so I started wearing a Conveen [sheath] during the day and a leg bag. This meant that it didn’t matter where I was if I had to pee. I could just pee and it went into my leg bag

Is a bladder problem a normal complication with your neurological condition?

Not that I’ve read a lot about, it’s not unknown. But it’s not necessarily a common thing. But any time we’ve got urgency of micturition, it might well have a bladder spasm. I thought that would be conflicting, that you either had spasm or not, but know your bladder wall and your bladder sphincter can both go into spasm. Yes, it does occur.

But you’re not 100% sure whether it’s the neurological condition you’ve got causing the bladder problem, or something else?

Or a prostate problem. No, I’m not sure.

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Gordon had an enlarged prostate soon after having a stroke at the age of 89. He’d been given a urethral catheter when he was in hospital. When it was removed, he found it hard to urinate and accepted that he needed a long-term catheter. Emlyn and Stewart both found it hard to urinate. Emlyn turned out to have prostate cancer. He was catheterised before surgery and has had a catheter ever since. Stewart had a prostate operation in 1987 but was unsure if an enlarged prostate was causing his urinary problems.

Other reasons for needing a long-term catheter

David was fitted with a long-term catheter after a major stroke, while Ann’s bladder problems started after a hysterectomy for uterine cancer. John Z became incontinent after surgery for bowel cancer.

When John Z became incontinent, he wore pads. He tried ISC but decided on a urethral catheter…

Age at interview 64

Gender Male

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How it started with me is I had bowel cancer. And it’s a sad story, mine. But I had bowel cancer and, of course, part of the cure was taking my bowel away and my muscles for the bladder and that got damaged. But I did manage to control it a little bit for a couple of years.

Then about seven or eight years ago, I became really incontinent and started having to wear pads and things like that. And there was a consultant and he was really pressurised, you know, at his surgery there were queues and queues and queues. So we were on a conveyor belt and it was like, Okay, I’ll see you in a month, keep taking the tablets and just get bigger pads.

Anyway, we’ll jump on two or three years and a new consultant came and more or less took over from the old one. And I think we got the first consultation with him. I told him more or less this story of what happened. And it had become, it was running all the time more or less. And it cramped my style. I couldn’t go out or anything. I had to wear these flipping pads and, after a while, they started to smell. And they get full up so, in the end, you were wet through. He said how do you fancy self thingy-ing?

Self-catheterisation?

Self-catheterisation. Anyway, I weren’t right keen on that because, as you know with diabetes, your manly parts should I say tend to disappear and it’s very hard to do. So he said do you fancy having one in all the time? You know, I weren’t overly keen with it but, having said that, I thought of all the advantages and disadvantages. And there was a really good nurse at Urology. and she sort of counselled me. And it was decided that I’d have one of these.

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Hayley was born with spinal muscular atrophy (SMA),a genetic disease that causes muscle weakness and a progressive loss of movement. From the age of 11, she went to the toilet only 3 times a day because of her mobility problems.

Hayley restricted the amount she was drinking so she wouldn’t have to go to the toilet. She…

Age at interview 46

Gender Female

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I have Spinal Muscular Atrophy Type 3, which means currently I’m 46 and I’m unable to do probably 98% of my own care, mobility. It’s a progressive muscular, neuro-muscular condition. I could walk when I was a toddler and I came off my feet quite quickly.

Basically, over the years, from the age of about 11, I was going to the loo three times a day because it was such a big faff to get everything in place, and it took quite a long time. It must have been about 9 or 10 years ago I thought it would be sensible to pop a tube in and re-plumb so that it would be easier and I didn’t have to be moved around to go to the loo. I was concerned that I’d build up problems for the future with kidney problems and bladder issues, stones and things.

So I started trying to get a catheter placed. I actually started trying to get a Mitrofanoff which nobody wants to do apparently. It took me about three years to get somebody who was interested in, a urologist who would do the suprapubic, which eventually was set for I think it was seven years ago now.

Why was there reluctance?

Stigma really and, because it relates to being incontinent, and I definitely wasn’t incontinent, I could hold my bladder for England.

So who was reluctant?

I was reluctant to have it done initially over the years, although it would have been a very sensible thing to have done many, many years ago. Then I had trouble actually convincing the medical profession that it would be a positive empowering thing to do. Which eventually, as I say, I actually moved from the Midlands to the South Coast and that changed things, brought around some good doctors who understood that it would be a good. I can actually independently use the catheter so it actually means, if I’m really stuck, I don’t need anybody here to help me.

So what was the most important factor that was driving you to have the catheter?

Not being able to drink because I literally, I would have a coffee in the morning, then I would go to the loo, then I would get up. I’d maybe have a drink around about midday. Then I’d probably get onto the bed quite early evening, sort of seven, eight o’clock, drink myself silly with coffees and teas and water and go to the loo a couple of times.

It was making my life very difficult, it was impeding in every area to be quite honest. Although I did have a massive capacity to hold myself and actually I also didn’t want to lose that ability. I was quite concerned about being catheterised and I definitely didn’t want one that went urethrally because I didn’t want to damage the muscles in that area, or the sensitivity that I had. And yeah, I mean basically I wanted to be able to drink and be healthy.

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Some people needed a long-term indwelling catheter because of urinary retention (being unable to empty the bladder when you need to). Sharon’s problems started after the delivery of her daughter. She found it hard to pass urine so had a urethral catheter for 24 hours. In 2005, she found it impossible to pass urine and had a suprapubic catheter inserted, which she has had ever since. Some time before this, nurses at the hospital had tried to teach her to self catheterise but she’d found it hard to do.

After giving birth to her daughter, Sharon had very slow urine flow and pain. Tests showed a…

Age at interview 52

Gender Female

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The problem started, it would be 22 years ago when I gave birth to my daughter, after I had her I couldn’t wee, so I had an indwelling catheter. I had that in for a day and it was taken out and I started weeing normally, painful but slow.

Was that a natural delivery?

Well it was a forceps delivery, yes. What happened then? And then ever since then really I’ve always had a very slow urine flow and pain on finishing passing urine. I had numerous hospital appointments and they couldn’t really find anything wrong. Was put on six months of antibiotics as they thought it might have been a bug or something, but that didn’t clear it.

Then I think I went in and had a cystoscopy and a bladder stretch, they couldn’t find, well I have a narrowing of the urethra. I can’t remember what it was called now, scar tissue. It did work for a while, my urine flow was a lot faster but I still had a bit of pain on passing urine. But then after about a month it just all went back to normal. And then for years I just lived with it.

How long did it take you to pass urine?

Oh I could be in the toilet five or ten minutes.

Oh really?

Yes.

And pain at the end?

Yes.

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After a lot of tests and investigations, some of the women we spoke to were diagnosed with Fowler’s Syndrome, the commonest cause of urinary retention in young women. Urinary retention in young women is not common but can be quite debilitating. It is caused by the sphincter’s failure to relax and allow urine to be passed normally. The urethral sphincter is the muscle that closes the urethra and keeps people continent. No neurological disorder is associated with Fowler’s Syndrome: up to half the women also have polycystic ovaries.

Jennifer describes what first happened when she had urinary retention. She felt she needed to go…

Age at interview 26

Gender Female

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When I was 19 I’d been to my GP several times with urinary tract infections, although they weren’t that concerned. I just had antibiotics. For six months I continued to go back and back and my GP kept saying, Oh there’s no real problem here. I complained several times that I needed to empty my bladder and couldn’t. The GP would be like, Oh no, you know, maybe it’s just nerves. Cos I was undergoing exams at the time.

Several times I’d go and see him and he’d kind of really just dismiss it, so I never really took it any further. Then a couple of months later I went to work one day and got home from work and realised I hadn’t emptied my bladder since I’d gone to bed the night before, although I’d had quite a bit to drink.

So I went back. I managed to get an urgent appointment with the doctor for that evening.

Was that because you couldn’t empty your bladder?

I hardly had any feeling at that stage, apart from my stomach was very sore and my ankles were very swollen up. So that’s when I went to my doctors and she felt my stomach and she said, Yes, your bladder’s very full. Go and empty it. And I couldn’t empty it. Although at that stage then, over the few hours, I’d started to get more signs that it was getting full, like I knew, I had more like a sensation of needing to go but nothing like I was desperate or anything like that..

She sent me up to my local hospital, they bladder scanned me, which is where they just put like a device on my stomach and it bleeps. It’s meant to say how many milliliters are in your bladder. Unfortunately it was coming back very low, so they didn’t do anything for a bit until the pain kind of hit the roof, cos obviously my bladder was really full at this stage. They decided to put a catheter into, a urethral catheter into my body to drain what was inside and they drained 1.5 litres.

At that stage, it turns out the fact that the scan wasn’t working properly was because my bladder was far too full for the monitor to read it. And it was, and my bladder’s quite, it’s not in the centre. It’s quite towards one side so they weren’t really picking it up in the full area of the scan.

Were you in a lot of pain at that stage?

It was very painful. Cos that feeling of needing to go and can’t is the most horrendous thing ever. So yeah, it really wasn’t pleasant. I was kept in hospital for two weeks. That was the first time I’d ever been in hospital with my bladder, well the first time I’d ever really been in hospital at all, and they ended up doing a CT scan just to see everything, which really didn’t show that much, just showed that I had a bit of scarring on my kidneys from all the infections. But my bladder on the whole looked okay.

I then had a camera put into my bladder, which all looked fine. It didn’t really show anything, reason for why I couldn’t empty my bladder.

Is that a cystoscopy?

Yeah. And then I was discharged. I was taught on the ward by the nurses how to do intermittent self-catherisationcos I still couldn’t empty my bladder myself at that time. So it went on from there.

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Sometimes people are unsure exactly why they have urinary retention. Faye had urinary retention after being very sick. She’s had no diagnosis but now lives with a suprapubic catheter.

When Faye’s urinary problems started, she was in a lot of pain. She was in hospital for 6 weeks,…

Age at interview 29

Gender Female

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Five years ago, I just took ill. I was being sick and all sorts and they just started from there. I just went into retention.

So did you have any other symptoms apart from not being able to pass

urine?

I had pain the first time, but that’s it.

Whereabouts was the pain?

Over my abdomen, rather sharp and intense.

And you found it really difficult, what happened, could you pass any urine?

No, they put me on a lot of drips, so the hospital, to try and

And until then you hadn’t had any problems at all?

Not one, no.

Was there anything you think might have triggered it?

No, just that illness, whatever it was that started it.

Tell me a bit more detail about on that day what happened?

It was a Saturday and I just woke up feeling sick and being sick. A fever, just really ill. So I went to hospital and it all started from there.

I’ Gosh, that must have been an awful shock for you.

I can’t remember much of it to be honest.

You can’t. What happened when you got there?

I got booked in, painkillers, drips, took up to a ward, and a lot of it was just a blur cos of the pain I was in.

And did they pass a catheter then?

No, they waited about twelve hours.

Oh. And then what happened? What sort of catheter did they pass then?

I don’t know. They had to hold me down.

Was it a urethral catheter?

They just did intermittent but they didn’t keep it in that time; they thought it was just a one off.

They passed a catheter into you every few hours did they?

After that, yeah.

So how long were you in hospital on that occasion?

I was in for about six weeks.

And what sort of tests and investigations did they do?

MRI scans, CT scans, blood, a lot; I can’t remember all of them.

Did they do any investigations of your bladder at that point?

None. Eventually I was sent home and they were just hoping things would go back to normal. And they didn’t.

And at that point you could pass urine?

No.

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Carol was diagnosed with endometriosis, which invaded her bladder and bowel. She had a urethral catheter for a few months to allow her bladder to try and heal after it burst. Unfortunately, her bladder didn’t heal because its wall was very thin after many operations. She lives with the risk of her bladder rupturing if it gets too full.

Carol was catheterised on different occasions for different lengths of time. Her bladder could…

Age at interview 39

Gender Female

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I was diagnosed with endometriosis, which is a gynaecological disorder where the lining of the womb, the cells grow elsewhere in the pelvis and in other parts of the body. So I was diagnosed with that in 2003 and that got worse. By 2005, I found out that that had invaded my bladder and my bowel. I had a bowel resection and a bladder resection at the same time, which was my first experience of having a catheter, which was quite short term, just for a couple of weeks.

Then I had further surgery in 2006, another operation on my bladder and had a catheter for a short period again. But 2008/2009, I had bladder problems again. it’s quite rare to get bladder endometriosis but, when it does happen, they end up cutting a part of the bladder out doing this bladder re-section, so that’s why I ended up with a catheter again in 2009.

In 2009, I also had endometriosis on the ureter, on the valve going into the bladder so I had quite a big operation in 2009, and ended up with a catheter for about a month. After that, I started to get some unusual complications where my bladder would perforate spontaneously. That happened on a number of occasions in 2010 and 2011, and hence I was left with a catheter for a longer period of time.

It took a long time I think because the bladder rupturing or bursting like that is quite unusual. It took them a long time to identify what it was because I understand it’s very rare. But the solution was to have a catheter for a period of time, and see if it healed.

Unfortunately, in my case, it didn’t heal because the bladder wall was very thin from having repeated bladder re-sections. So I know that now I’m at risk, if my bladder gets too full, of it rupturing, so I have to be really careful.

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