Carol

Age at interview: 39

Brief Outline:

In 2003 Carol was diagnosed with endometriosis. This had invaded her bladder and her bowel. She has had several operations after which she has had a urethral catheter, once for four months, due to a perforated bladder. Sometimes she has to self catheterise due to loss of bladder sensation.

Background:

Carol was a chartered accountant before she retired due to ill health. She is single. Ethnic background/nationality: White British.

More about me...

Carol had vague abdominal pain and felt unwell. In 2003 she had a laparoscopy and was diagnosed with endometriosis. A further laparoscopy in 2005 showed that this had invaded her bowel and her bladder, so she had a bowel and bladder resection. After this surgery she had to have a catheter for about two weeks. In 2006 Carol had further surgery on her bladder and needed a catheter again. She had another laparoscopy in 2008, which revealed endometriosis on her right ureter. In 2009 she had more surgery and again had part of her bladder removed. This time she had to have a catheter for about a month.  

 

In 2010 and 2011 Carol had more complications. Her bladder perforated spontaneously. This meant that Carol had to have further bladder resections. Once she had a catheter for about four months to give the bladder time to heal. Her bladder has never quite healed so Carol has to be very careful not to let her bladder get too full because if it gets too full it is likely to rupture again. When her bladder perforates she gets no warning and it is excruciatingly painful. Twice Carol has had to call an ambulance and go into A and E for treatment. When this happens she knows that she needs morphine and a catheter as soon as possible. Having a catheter relieves the pain.

 

Carol now finds it quite easy to look after a catheter when she needs one. However, at first she wasn’t given enough information about how to attach a night bag to the day bag and where to find the best products, such as a special stocking to support her leg bag. She changes her bags every week. She has her bath with her catheter and bag. She doesn’t have a flip flow value because it is important that urine drains continuously from her bladder to give it a chance to heal. On two occasions the catheter has kinked and so urine has collected in her bladder and leaked out into her abdominal cavity, which was very painful. She has also had one bad infection. She was given the antibiotic trimethoprim and another antibiotic. 

 

Sometimes Carol finds it hard to pass urine so then she has to pass a catheter herself. She finds intermittent self catheterisation quite easy, as long as she has the best type of catheter. She keeps catheters at home for emergencies. It is lubricated and easy to insert.

 

Carols’ endometriosis has had a huge impact on her life, partly because she has had to give up her career due to ill health. She recommends that people living with a urinary catheter do as much as possible and that they should try to get out and live a normal life. Carol works hard to help others with endometriosis. 

 

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

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.

 

Carol shows what a ‘SpeediCath’ catheter looks like. It’s as easy to use as a tampon. She also...

This is a sort of standard size, what this is called, “SpeediCath” 

 

SpeediCath? 

 

SpeediCath, and this one, it’s got like, you can stick it [the outer cover or package] to the toilet door so if you are using a public toilet, you can stick it to the toilet door. You don’t have to add water to these products and there are some that you do have to. This is lubricated so you just literally take it out, it’s lubricated, and make sure that you don’t touch the tube. And then with your other hand you have to pull up slightly to put it in the right position, and insert it. 

 

And I have to say this is so easy. As a woman I think gosh this is as easy as putting in a tampon. It really is that simple. And obviously you have to wash your hands before you do it. But it’s so quick and easy. But the product makes all the difference. This one’s very good. And then you just dispose of it. 

 

The other products that I was going to show at the same time is that this is practically the same thing, but it’s a compact one and it’s got a much smaller tube. And these ones are really good for travelling around with so I use these ones at home and, if I ever need to do this self-catheterisation when I’m out, I’ve got some compact products. And then you just dispose of it and no one would ever really know. 

 

So you just sit over the loo when you’re doing that? 

 

You just sit over the loo, and I think in the early days it’s useful to have a mirror, but actually you just get used to where it is. It’s strange but it does become second nature really. It’s very easy, very easy. 

 

Carol’s bladder function is erratic. She finds a lubricated catheter easiest to use. Finding out...

I have found that my bladder function is erratic, so sometimes I don’t have much sensation. I can’t always tell when my bladder is full. Sometimes it just doesn’t work very well, and at other times it’s completely fine. So I do find sometimes I need to use intermittent self-catheters.

 

Is that because you can’t pass urine?

 

Yeah. And so that urinary retention does make me worry because when I’ve had that before, it’s been when it’s perforated and I’m in pain and I can no longer urinate. So it’s very quick and easy to use the intermittent self-catheters, but I have found that knowledge of the products isn’t widespread amongst, well for example the consultants or perhaps even used in the hospitals.

 

And I know a very good gynaecology nurse specialist who gave me a product which is lubricated, and that is so easy to use. It’s just finding the hole, the urethra to put it in.

 

Who taught you how to do it?

 

A nurse taught me on the ward, but I’ve been seen in a private hospital and the downside of that is you don’t have access to urology nurse specialists that you do on the NHS. So she was more of a general nurse and I found her very unhelpful and I hadn’t showered, and I want, she wouldn’t let me shower because she didn’t have time and I felt that, I had some loss of dignity when she taught me how to do that. And it was unnecessary really because, and again she used an un-lubricated product which is much harder to use. And it’s such a small thing, and perhaps again it comes down to money.

 

So you found the best products yourself really?

 

Yeah, from a friend of mine who I know through doing work for Endometriosis UK. She showed me the products and she’s a gynaecology nurse specialist on the NHS. And I found it quite shocking actually that they’re more up to date on products than in the private sector, where they perhaps don’t look at this. But it depends where you have your care as to what products you are given. 

Carol sometimes asked for her catheter to be changed because it was uncomfortable either because...

You say you think your catheter is made of silicone?

 

Yes.

 

Have you ever had any choice about what sort of catheter?

 

No. I’ve never had a choice. But I have sometimes asked for it to be changed because it had been uncomfortable. Some of them seem to be harder and the softer ones I think are much easier.

 

Do you have a choice of how big it is? Do they come in different…?

 

They do come in different widths. I have had some issues on widths because after surgery, if there’s going to be a lot of blood or sort of clots coming down, that sounds really awful, then they try and put a wider one in, but they’re difficult to have longer term.

 

Not so comfortable?

 

They’re not as comfortable, so you need a narrower one. But then they block easily if you’ve got clots coming down.

 

Sometimes do you go back and ask for a smaller one?

 

Yes. I have had smaller ones put in before.

 

What’s the ideal width for you?

 

I think I have 12 or 14. But you can get smaller ones.  

Carol didn’t know how long she’d need a catheter for each time she had one. A discussion on the...

How many times have you had to have a catheter put in and then left for a few weeks?

 

It has been, I think five times. Sorry let me just think back. Its 2005, 2006 I just had one for a few days, so that wasn’t so bad. Actually in 2008 I ended up having an operation, a normal laparoscopy and they didn’t do anything to my bladder because he saw that the endometriosis was on the ureter and it was too dangerous to operate without a urologist, so I had one then. And then I one in 2009, 2010 and 2011. So that’s been five.

 

Five times.

 

Five episodes of having a catheter. Of increasing length unfortunately.

 

Yes. What’s the longest you’ve had a catheter do you think?

 

Four months in 2010.

 

Four months?

 

And that was purely because they didn’t realise that I had this perforating bladder, and it was so thin it didn’t heal. And they’d take the catheter out, and it would be okay for a few hours and then it would perforate again. And I was in hospital and they’d just re-catheterise me. So it was sort of in and out for four months, I think it was four months.

 

I have to do intermittent self-catheterisation now, and that’s actually quite straightforward. Although when I first started to learn that I thought it was quite difficult. But I’ve since discovered there are better products so actually the knowledge of the products I’ve found quite difficult. You have to sort of ask around about the products. And I think that’s one of the things on the urinary, the indwelling catheters that I found' you’re not offered any choice, and there are apparently choices out there.

 

I think, although they hadn’t anticipated for me that I was going to have them for four months, having some sort of dialogue on what you like wearing and what might be the most suitable product for you, would be good. And because I’ve only had a urethral catheter as well I think knowing that, you know I’ve had them for periods of time, maybe the other sort, the suprapubic might have worked better. But then it’s difficult to know when they didn’t really know how long I’d be left with a catheter.  

In some ways Carol found that it was a relief to have a catheter because it meant that her...

You said having a catheter is a bit de-humanising. Can you explain why?

 

Yes. I think because you lose confidence almost in your body, having this plastic thing hanging down that’s very unattractive really. I didn’t want to date or anything while I had this catheter in for several months, and it just doesn’t make you feel normal I think. Yes, I did really lose confidence for that time.

 

So tell me about, give me a bit more detail what it’s like to come home with your catheter.

 

I have to say over the years it has got easier. In fact when I’ve been very ill it’s just a relief to have the catheter because it means that my bladder can rest, and not have the difficulty of filling with urine, and it can heal. So I haven’t found that a worry at all. It’s actually been very straightforward and I’ve felt quite confident about dealing with it. 

 

Using a catheter got easier with time. Carol found it straightforward and felt confident dealing...

So tell me about, a bit more detail what it’s like to come home with your catheter.

 

I have to say over the years it has got easier. In fact when I’ve been very ill it’s just a relief to have the catheter because it means that my bladder can rest, and not have the difficulty of filling with urine and it can heal. So I haven’t found that a worry at all. It’s actually been very straightforward and I’ve felt quite confident about dealing with it.

 

Carol shows her leg bag, a 500ml bag with a tap. She found the leg bag straps uncomfortable so...

This is a fairly standard leg bag, which holds 500 millilitres and has the little tap at the bottom which you just switch on like that when you want to let the urine out of the bag. 

And so one of the things I found really useful is that some hospitals stock these little stockings, so you have two straps, one around the top and one round the bottom to hold it on your leg. But they’re quite harsh actually and to make it more comfortable, to make it more comfortable you can get these stockings.

 

Could you hold it up, the stocking a bit higher?

 

You can get these stockings and basically the bag sits in the stocking and the stocking is held to your leg. And that actually makes it quite a lot more comfortable to use. I don’t know how widely available these are, but I think they’re probably quite cheap so it would make quite a difference for quite a small cost.

 

Where did you find the bag? Which, who supplies it, a company?

 

A company. And one hospital I, because my gynaecologist works in one hospital and the urologist works in another, it depends where I’m having surgery as to whether I get one of these or not. So I keep them and wash them because they’re not always readily available.

 

And then the top part of the bag fits onto the catheter or onto another tube first?

 

The top part of the bag fits straight onto the catheter tube, and sometimes they have a much longer tube here and sometimes this is a short one. I think that’s, I like the short ones the best, I have to say. I don’t like them hanging around my ankle, but they are quite easy to use.

 

Carol would have liked to know more about the various kinds of leg bags and where they can be...

So you were never given very much information?

 

No. And certainly the leg bags I’ve always found very entertaining because sometimes you get ones that are sort of hanging around your ankle, and sometimes you get ones that are right at the top of your leg. And there doesn’t seem to be any rhyme or reason.

 

There’s not much thought given to what it actually means to live with these on a day to day basis, and still be able to drive, and wear clothes normally. And even to have that comfort as well, so I’ve found that there were these stocking things [leg bag sleeves], one of the hospitals, ‘cos I go in, I’ve been into various hospitals.

 

One of the hospitals had these little stockings that you could put the bag in and it made it much more comfortable than not having it. And sometimes I’ve had some really ridiculous experiences as well. When I had a bag at the bottom of my leg that it nearly fell out one day when I was shopping, because it got really full and, and you know.

 

And I’ve had another embarrassing experience where I was driving around the M25, and the traffic was really bad. And I was on my way to hospital and the bag just got fuller and fuller. By the time I got to the hospital I could hardly walk with this really full bag. And I arrived in the reception and I think I was just giggling because I was just so embarrassed. But you end up with these quite ridiculous experiences.

 

Have you had other terribly embarrassing experiences when you’re out?

 

No. Those have been the worst when I’ve thought, “Oh my goodness, someone’s going to notice.” But I don’t know.

 

You talked about this stocking. Is that held up with suspenders?

 

No, it’s just like a little sort of mesh type thing that’s quite soft and you put the bag in and pull the little tap out of it. So it sits quite comfortably on your leg. They’re just a bit more comfortable than the actual elastic, the Velcro straps that you put on it ‘cos I’ve found that the Velcro straps on my leg are quite uncomfortable. 

Carol says ask your GP about where to get support if you need it. District nurses, continence...

It really isn’t as bad as you think, and to ask as many questions, and talk to health professionals like your GP about the sort of support that you can get. 

 

So, for some people, it might be appropriate to have access to district nurses, and for other people just knowing that they can phone the continence nurse would be good. If you’re seen in an NHS hospital, then hopefully there’d be a urology nurse specialist who would be able to help. They have much more information about products and can talk to you about your lifestyle and what might work.

 

Carol had many operations and infections and was often in pain. She was no longer thought fit for...

I couldn’t work throughout that time. Ultimately I lost my career because of my bladder problems, and that has been very hard to deal with. So, you know, these are very serious effects on people’s lives.

 

Absolutely.

 

So I couldn’t work because of the risk of infection, and I’ve had challenging experiences as well. I had one doctor tell me, when I was taken in as an emergency, that I couldn’t go home with a catheter because I might get an infection and I might die. Which I thought was unbelievable, and frankly, I’ve been home with a catheter before so I knew that that was just not good.

 

The NHS pays for the catheters. Have you had other expenses because of all this? It must have been very hard for you. I mean you’ve had to give up your job for a start.

 

I’ve had to give up my job. I consider myself extremely lucky that I had worked for my company for a long time and they dealt with it very well. And I managed to get an ill-health pension which not all companies have that provision. And I know for a fact how difficult it is for women with endometriosis to claim disability allowances and ESA [Employment and Support Allowance].

 

So I do think I’m very lucky because the government’s changed the rules. It’s very much about a tick box exercise on assessments these days. And if you have an invisible condition and you can walk, you can write, it’s difficult for people to say, “No, you’re not fit for work.” But my company felt that I was no longer fit to do my role.

 

So does your company help you? You haven’t got to go down the government side to get all the benefits and things?

 

I don’t. Even though, even after all I’ve been through. I’ve been through thirteen operations; I’ve had most of my rectum removed. I’ve had numerous bladder surgeries, and I live with chronic pelvic pain. You know, for example, I didn’t get much sleep last night because I was up in pain, and taking painkillers. And that’s normal, normal for me. But I still look okay, and so anyone assessing me would say well, “You know, you can work.” But actually the practicalities of that are very hard.

 

My employer deemed that I was unemployable, and from my sickness record alone. You know it’s sad at 39 that someone says that, but I’m determined to make a difference for women with endometriosis. And I’ll continue to fight and try and do work with the government so they do understand what women go through. 

Carol had at times lacked information, for example she didn’t know that she should not detach the...

Do you want to talk a little bit more about looking after it?

 

Yes. I found that people don’t always explain to you what you need to do. So I found that, whereas for some time I’d wash the bags out so that they didn’t smell or leave any trace of urine, that actually you’re not supposed to do that because of the risk of infection. And I didn’t realise as well that, when you put the night bag on, you’re not supposed to take the day bag off. You’re just supposed to attach the night bag. And it was only last year that someone actually explained that to me. And that wasn’t in the hospital. I did find that the actual support side on catheters was quite limited. 

 

And as well, not everybody explains that you can bath and shower exactly the same when you’ve got a catheter in. And in fact I’ve found having a bath to be such a relief because it’s the only time you don’t necessarily feel the pull of that bag or the tube in there. Having a bath, you know, the bag just floats on the top and it’s quite comfortable.

 

Carol would have liked to phone a district nurse for support on the odd occasion she’d needed it....

I did find that the actual support side on catheters was quite limited. That when you go home I never had district nurse support, not that I felt I needed it but there would have been times, for example I got an infection one time and had to go back to the hospital, which is an hour’s drive away. There were times when it would have been useful to have had some additional support like that, so someone to call. But then I didn’t need someone every day to sort of help me change the bags or look after them. It was actually quite straightforward.

 

So where do you look for support? Have you got sort of family members that support you or is it more to do with friends and support groups?

 

I’m very lucky with my friends and my family. My Dad, every time, I mean it’s hard for family isn’t it and friends when you end up in hospital a lot. My Dad always makes light of it, and he writes great catheter poems to me, which are very entertaining and I’m sure he enjoys writing them. But I think he’s starting to run out of ideas.