Tell me a little bit about where you have found support for all this, over the years.

Over the years, a bladder charity.

The Bladder and Bowel Foundation?

The Bladder and Bowel Foundation initially was very, very helpful. I made some really good friends through that. When their forum closed down we’d all found Facebook. Facebook had come into the world then and I got friendly with one of the girls off there who had similar problems with me, through Facebook. We then found another one that we were talking to, and it all kind of spiralled on from there. So the main information and support now is through the friends that are on there.

Obviously your family and friends are the most massive support because, when you’re in hospital, you rely on them to bring you stuff to keep you sane and you know, sneak you a MacDonald’s in when the food’s terrible, that kind of thing. I think it’s really important as well to have a supportive General Practitioner.

To go back to Facebook, how often are you in touch with people on Facebook?

Every day.

Every day?

We started off as people who shared bladder problems, and now we’re friends and we share activities. We have other interests and we share holiday photos, chat about other people’s holidays. And so yeah it starts off that you connect through your bladder and well actually you find that, that you don’t speak to people that much about your bladder. You might, you’ll say to them, Oh yeah, it’s hurting me today. Or I’ve got to have this done. But it’s never the main topic of conversation

Oh that’s good. So it’s been a real support group?

Yes. And there are many, many times when I couldn’t have got through what I’ve been through in my seven years without these people because when nobody else understands, they do.

Can somebody else with a problem find you quite easily?

No. I don’t advertise it on Facebook. I have a little private group and it’s generally all the same people. I met one person that I added who I met when I was in London, and she was in the next bed to me. I found her and we’ve stayed in contact.

I think the most important thing is that the suprapubic catheter isn’t a big deal. It’s only as big a deal as you make it.

So that’s a good message for other people.

I think, you know, don’t let it rule your life. I think if you sit at home thinking about it, not doing anything, it’s gonna feel ten times worse. If you just get on with life and accept it’s there, it’s not going to seem half as bad as say, you know.

Make sure you get supportit’s something simple like getting the right tape, it is just so important. It seems nothing to anybody else but, when your skin is sore and you’re pulling it off all the, every morning and night, now it makes a big difference to get something. So if something’s not right, persevere with it and get, persevere getting it changed by somebody. So I think that’s important.

What sort of information were you given at that time?

I was hardly given any information at all. When I got discharged I came home and the first thing we did as a family was start looking on the internet for things. And that’s really how at that time I found out about lots of different things because the nurses on the ward had literally said, Here you go. Here’s a box of catheters to go home with, this is what you have to do And that’s it. They never said, Oh there’s all these different ones, try them I was never given a selection; I was literally given one set that the hospital had, a box. So I did have more delivered a week later, and really that was it at that stage. So it really wasn’t the best way of handling it really.

You say you have good friends who are very understanding?

Yeah.

To go out with?

Yeah. So yeah it doesn’t bother me.

What about boyfriends? Does that become difficult?

Not really.

Oh that’s good.

Not really. I mean I’ve always come across, I’ve always said if they can’t handle it then they’re not worth being with. Because that’s me and it’s part of me, and that’s it. You know, just like someone might wear a wig, I have a catheter. Someone might paint their toenails bright blue all the time, I have a catheter. It’s not a big deal.

And you can get all this [catheter equipment] on the national health service?

On the national health service. I just think, you know, find out. I actually found out, I was using a similar dressing by Allevyn, the company that make Allevyn dressings, a similar dressing which had, which I found out just by coincidence one time going to see my practice nurse. My site was a bit sore and she put some cream on it, and she said, Right, I’ll put, and I hadn’t took any of my dressings that I was using at the time. She says, Oh I’ll put this on for you.

She put it on me and it was a lot comfier, a lot more padded or comfortable and absorbent. Oh this is really good, but it had this adhesive that really didn’t suit my skin. So I looked it up on the internet and they had this massive web page of all these different dressings. And I e-mailed them and I said you know, Can I speak to someone? Who do I contact? And this woman rang me back and she said, Look, you know I’m the one that sends all the products out. Tell me what you’ve got and I’ll send you a massive selection out of samples and then it’s got all the product codes for your prescription. Decide what you want and let your GP know.

So I went through them all, tried them all for a few weeks cos I had absolutely loads. I had about thirty odd of the things, found the one I wanted that suited me and then I found the tape.

That’s brilliant.

I don’t know how I found out about the tape. I found out the tape a couple of months later.

Is this a company that you were in touch with?

I went into a company on the internet.

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.

You then have a slight, 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.

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 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.

What anti-spasmodics do you find most helpful?

I find the combination of BuscopanÆ, oxybutynin and MerbentylÆ, 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.

I have a suprapubic catheter, which is on a valve. I have it changed every three weeks because my tract has narrowed considerably. They deflate the balloon, pull it out and put a new one in. They’ve really struggled to get the same size back in so I’ve had to come down a couple of sizes in catheters. So, at the present day, I have a paediatric size 10 in my suprapubic.

Size 10. So why do they have to change it every three weeks? Because it gets blocked?

I have it changed every three weeks because I have recurrent infection, and it’s a recurrent proteus infection. With proteus infection, you get stone formation. And I have stones which almost cemented the suprapubic catheter into my bladder, and the stones form round the neck, round like the neck of the catheter, where the eyelets are. When you’ve deflated the balloon and you’re pulling it out, it won’t, it takes a lot of tugging. The more stones that form, the more trauma it’s causing because every time you deflate the balloon and pull it out, the stones won’t come out with the catheter down the tract. The stones, when you’re pulling, when it’s being pulled it has to separate. The stones have to come away from the catheter for it to allow it to come down the tract. So if I go more than three weeks there is a problem, because it takes a lot of pulling to come out.

The stones would be harder?

Cos the stones are hard, and the stones have to separate off.

Why are the stones forming more now?

Because I’ve got a proteus infection.

Over the years I’ve found a brilliant dressing. I use Allevyn dressings which have an anti-microbial film on them and it also stops over granulation of the site where the skin is trying to heal itself and it forms like little blisters, bubbles kind of things. It stops that.

So I use that and I also use a Mepitac tape, which is the most amazing tape ever because it doesn’t leave any marks on your skin, you can stick it, you can peel it and stick it as many times as you like and it never leaves a mark on your skin.

Oh that’s useful.

So it’s a brilliant tape. It’s not something, or to me, it shocked me when I found them out because it had been years down the line and I found it out. And I didn’t realise it had been going for so long. But it’s not always something that your practice nurse or district nurse will recommend to you because they’re quite expensive.

When you had the urethral catheter, did you have a bag or did you just empty it?

No, I had it on a valve. At the very first I had it on a bag but I think it was the summer time, I wanted to wear short trousers. I wanted to go on nights out without having it, I really didn’t like it.

So I can’t remember who or when or where, someone introduced me to the flip-flow valve, which just fit’s on the end. It’s just like a tap because there wasn’t actually anything wrong with the way my bladder stored anything. It could hold [urine], it was still fine, it was just releasing it out of it [that was difficult].

So it was ideal for me. So I had the valve on it, so yeah it was dead discreet just used to tuck up in the top of my knickers and that was it…

I also think it’s massively important, and it all depends on the reason you’ve got a catheter, is to have a valve on it and not a bag. Because when you have a bag on it, I found your infections increase so much because your bladder is always empty. It rubs you a whole lot more because your bladder is empty. So when your bladder’s full, if you, well when your bladder’s got something is moist inside, got some urine in it, it expands. So the edges of your, you know it’s quite hard to explain but the walls of your bladder aren’t sitting on that balloon. They’re being pushed away from it. Whereas if your bladder is empty all the time, it’s just like sandpaper rubbing together and it’s going to hurt.

Why did they have to change it [catheter] every three weeks? Because it gets blocked?

I have it every three weeks because I have recurrent infection, and it’s a recurrent proteus infection, and with proteus infection you get stone formation.

And I have stones that like almost cemented the suprapubic catheter into my bladder. And the stones form round the neck, round like the neck of the catheter, where the eyelets are.

And the balloon is, which when you’ve deflated the balloon and you’re pulling it out, it won’t, it takes a lot of tugging. And the more stones that form, the more trauma it’s causing because every time you deflate the balloon and pull it out, the stones won’t come out with the catheter down the tract.

The stones, when you’re pulling, when it’s being pulled, it has to separate. The stones have to come away from the catheter for it to allow it to come down the tract. So if I go more than three weeks, cos it takes a lot of pulling to come out.

The stones would be harder?

Cos the stones are hard, and the stones have to separate off.

Why are the stones forming more now?

Because I’ve got a proteus infection.

Oh the infection.

Most infections, you know you do get recurrent infections with a suprapubic catheter. I’ve a brilliant GP who, we have a rule that if we send off a urine sample, if it shows hardly any white cells, which are like infection, if it shows red cells which are blood we totally ignore that cos you’re always going to get blood with a suprapubic catheter because of the trauma.

If it grows a bug and the white counts very low, we don’t treat it unless I’m unwell cos the chances are that’s just a bug that’s living in your catheter. If the white cell count is high and it’s growing a bug, we treat it.

I can’t get rid of the infection. I don’t know why. I’m under the hospital, the local hospital to find out why I can’t get rid of my proteus infection.

How long have you had it?

I’ve had my proteus infection since November last year.

Oh my goodness.

So it flares up every now and then. You can tell once it’s better because the changes are easier.

I think the most important thing is that the suprapubic catheter isn’t a big deal. It’s only as big a deal as you make it.

So that’s a good message for other people.

I think, you know, don’t let it rule your life. I think if you sit at home thinking about it, not doing anything, it’s gonna feel ten times worse. If you just get on with life and accept it’s there, it’s not going to seem half as bad as say, you know.

Make sure you get the support that you know, because getting the support, it’s something simple like getting the right tape is just so important. It seems nothing to anybody else, but when your skin is sore and you’re pulling it off every morning and night, now it makes a big difference to get something. So if something’s not right, persevere with it and get, persevere getting it changed by somebody. So I think that’s important.

I went back to my local hospital who discussed about putting a suprapubic catheter into me. So a catheter like through my stomach, through my abdomen but lower down. And straight into my bladder.

And what sort of discussion did you have? Were you well informed about the advantages and disadvantages?

I think I was well informed, I was well informed in the fact that it would be an easy way to empty my bladder. My bladder wouldn’t be able to push it out. It wouldn’t hurt to walk as much anymore, and that kind of thing. What I really didn’t expect was how bad the bladder spasms would be and how painful it was afterwards. And how long it took really to get into a routine with it. It took a good six to eight weeks after having it done.

I was, and maybe it was just me, but I was under the impression when my consultant discussed it with me that having a urethral catheter can just be done in an out-patients, it seemed dead quick, ten minute job. That’s the end of it. Suprapubic catheter, he said, Yes, oh it’s alright. Yeah we do it in theatre so you’ll be asleep. You’ll have a little wound on your stomach, that’s it, and a bit of a tube coming out. Not a big deal. So he really played the whole situation down, maybe for my benefit I don’t know, but I was really not prepared for the way, you know, it was.

How were you afterwards when you woke up?

It was very, very painful. It was very painful. And it was painful to sit up for the first twenty four hours, and it was a really weird sensation inside me. It’s a sensation I don’t even think I can describe. It was very strange. And at that stage it drained, they told me I could still use a valve so I wasn’t really expecting, I suppose cos I’d never really had an operation before, other than appendix years and years and years ago, that I’d have to dress a wound everyday. Cos obviously the, you know it never heals around it. It’s an open wound so it needs a dressing on it every day. So I never really kind of thought of that. So that came as a bit of a shock.

So I was, I think I was in for about a week, so after a week of you know being in I was discharged.

So they didn’t show any pictures of what it would look like on your stomach?

No pictures.

That would have been useful wouldn’t it?

Yeah. And I look back now and I think to myself, Why didn’t I look this up on the internet? You know why didn’t I search it on the internet while I was in hospital? But I don’t think you do. I think I was ill at the time, I had quite a nasty infection that I’d been battling for a few days and you know I just, I just wanted to go home.

Personally, at first it [urethral catheter] was fine, didn’t have any problems. But then the more active I got, the more problems I had. My bladder really didn’t like it.

By active do you mean physical activity?

Just walking around, running up flights of stairs, anything you’d do on a day to day. I didn’t go running marathons but I did what a normal 19, 20 year old, 21 year old would do. But, no, my bladder really wasn’t happy with it. My bladder was, the bladder spasms were quite horrendous from it.

They’d suddenly come on during the day?

Yeah. During the day, during the night. It used to block quite a lot, my catheter, cos my bladder was squeezing it so hard that it wouldn’t drain properly. Further on down the line when I had my urethral catheter the balloon used to, obviously that’s inflated to keep it in. The bladder was rubbing the side of the bladder wall and was just making it bleed, so it became totally impractical to have a urethral catheter really at that stage because I was having all these problems with it.I went back to my local hospital who discussed about putting a suprapubic catheter into me. So a catheter through my stomach, through my abdomen but lower down. And straight into my bladder.

And what sort of discussion did you have? Were you well informed about the advantages and disadvantages?

I think I was well informed. I was well informed in the fact that it would be an easy way to empty my bladder. My bladder wouldn’t be able to push it out. It wouldn’t hurt to walk as much anymore, and that thing.

What I really didn’t expect was how bad the bladder spasms would be and how painful it was afterwards. And how long it took really to get into a routine with it. It took a good six to eight weeks after having it done.

Maybe it was just me but I was under the impression when my consultant discussed it with me that having a urethral catheter can just be done in an out-patients, it seemed dead quick, ten minute job. That’s the end of it. Suprapubic catheter, he said, Yes, oh it’s alright. Yeah we do it in theatre so you’ll be asleep. You’ll have a little wound on your stomach, that’s it, and a bit of a tube coming out. Not a big deal. So he really played the whole situation down, maybe for my benefit I don’t know, but I was really not prepared for the way it was.

I still was doing self-catheterisation every four hours and I was having more and more problems with it. I’d have problems getting it in. I’d have problems where I couldn’t withdraw it from my bladder cos the neck of my bladder would like stick to it. It would clamp down on it. I had various A&E visit’s. I think, you know my local A&E got to know me on a first name basis cos I was always there.

Was that because you couldn’t insert that catheter?

I couldn’t either insert it or I couldn’t, once I’d got it, in I couldn’t get it out. So I had real problems with it.

How did they manage when you got to A&E?

Various techniques. Gas and air, try and relax the whole body and just a bit of force. Sometimes they’d give me some painkillers, that kind of thing, or some anti-spasmodic medication to try and relax the bladder

You were 19. So what happened after that?

After that I was still waiting to see a specialist. I waited eight months to see one.

So your urologist here referred you to a

Referred me to a professor, who I then waited eight months to see cos she was receiving referrals all over the country. So there was a long wait. In the meantime I had more and more problems doing self-catheterisation. I ended up in hospital several times over that period and one of the times they decided to put a urethral indwelling catheter in till I’d seen the specialist. So at least had access to drain my bladder. Which at first wasn’t a nice thing but it wasn’t too bad. So I had that put in.

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.

What was it like doing self-catheterisation?

It was quite a scary prospect at first. I didn’t have the best experience because I was only taught by ward staff. Later on down the line I was properly taught by a urology nurse specialist using a mirror. She gave me different catheters, different sizes of catheters which were a lot easier, and she got me into a proper regime of when to self-catheterise. So about six months later I’d got into a proper regime and I found it okay.

Was that every so many hours? When you say a regime?

Every four hours, but not during the night

And you used a new sterile catheter each time?

A new sterile catheter each time, yeah and I used to have various sizes. I’d have small compact ones which I used to carry around when I was out, which they weren’t the most comfortable catheters, but they were the easiest because they were all self-contained. They had all the water inside them, so it was a lot easier than a longer one. The bigger ones I had that you had to add water to. They really wouldn’t fit in a normal sized handbag so

Why do you need the water if they’re not going to stay in?

Because the water acts, it activates the coating on the catheter, a gel which makes them slide in and out more.

Oh okay.

So if you don’t have, if they’re not coated they dry and you really struggle to get them in. So all catheters are coated. Some of them come in their own coating most of the ones now, as time’s gone on, all generally are all sitting in a solution. But you still can get the odd ones on the market I think that aren’t.

So that’s what you meant when you said they come with water, a solution?

They come with water, they come in solution. Some of them are in like a bag that you squeeze, and it goes into the catheter. Some of the catheters sit in the solution, they’re all really different each ones that you get, but yeah, it’s just finding the right one.

Once you find the right one for you, as I said I had like two, ideally I would have just used the bigger one all the time, cos it was a softer one, it didn’t hurt as much but practically wise it wasn’t the best for carrying round. You can’t just go into a public toilet and open a tap and fill it up with tap water, so it wasn’t really the best thing.

So that’s why I used two, which I always thought was quite, you know it was quite a handy way of dealing with my bladder when I was out. And just have something so small it was so small that you could put it, you know if you didn’t want to take a bag you could just put it in a pocket, could put it in a camera case.

You could put it, I used to, when we used to go away on holiday, instead of carrying a handbag I’d carry my camera case and it just had a zip on the top and it would just slot in and no one would know any different.

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.