Where do you find most information, apart from your doctors? Do you ever search the Internet for information?

No. The most information we get is from each other on the Facebook group.

Oh, really?

Yes, that is where you do find information. Because the doctors and nurses don’t, they don’t understand what it’s like because they’ve never had that problem. If they’d ever had our problem, they wouldn’t treat us the way they do. Basically they wouldn’t leave us in the amount of pain that we’re left in, and they wouldn’t leave us with catheters that are so uncomfortable and things. But because no one actually knows what it feels like themselves, they can’t give us the advice.

So we have to take advice from each other and learn from each other’s experiences, from people that actually have the issues, because that’s how we learn. Like I think, like we can say to each other, Oh, try this catheter because this one’s slightly less painfu or, Try this new antispasmodic drug because it’s worked for m or, don’t eat thi or, don’t drink tha or things like that. Because the only people that can give you advice really that’s good advice are people that are going through what you’re going through. How can you give advice really when you don’t know what it’s like yourself?

So, yes, I do feel that every, most doctors that I’ve seen, they say, To be honest, I’ve never heard of what’s wrong with you [Fowler’s Syndrome] They look it up on the Internet. There’s never been a doctor that hasn’t said to me, I’m really sorry but I’ve just had to Google what’s wrong with you I’ve never met someone that hasn’t had to Google what’s wrong with me. And there you go. So that’s how much they know about it. So they’re reading a little page on Google about Fowler’s Syndrome and then they’re trying to treat you.

Where have you found most support during this time? Family?

Yes, family, friends, and also a forum that I go on for people with bladder or bowel issues. And we’re like a complete family there. There are a lot of us and every day constantly it’s, it’s on my phone or my Facebook. So as soon as someone writes, it comes straight through.

All of us are on it. And it’s like a secret group, so no one can see. You couldn’t even search for us. You have to be invited into the group, otherwise you could never find anyone. But we always welcome people in all the time if we hear of anyone that’s got something wrong with them and they want support then we’re there.

I post quite regularly, quite a lot of us post regularly. But then I also know other people that, they don’t post but they like, they say that they like to read what’s going on with us and learn from our experiences and things and know that there are other people out there. Because they maybe might be a bit shy or things, you know.

So it’s really nice. You can have the help if you want the help, or you can just give people advice, or you can just read it. But we just don’t want people that don’t have our issues to be able to read it. Because, you know, you can get some people that say nasty things. So, but we’re like a family unit though. If anything happened to any of us we’d always, all be there for each other like a shot.

This is a Facebook group?

Yes. And there are people on it from New Zealand. There are people on it from Australia. And there are all of us from all over the whole of England. And any time someone’s locally in hospital and we’re close to that, then we’ll travel to see each other in hospitals. Or we arrange days out in London and meet up with each other and things like that. And obviously we’re always there texting and emailing on the phone. Or whenever, if someone needs, whenever someone needs support, one of us will be there, no matter what.

I had such bad bladder spasms they couldn’t [remove the catheter]. The nurses and doctors would try and pull it out when I was awake and they wouldn’t be able to get it out. And so it ended up being that, every four to six weeks, I used to have to go to theatre to have another general anaesthetic for them to try and get it out. So I used to end up having at least twelve anaesthetics a year, every year.

What was it like being in hospital all that time? Did you just go for the night or for the day?

Well, when I had my suprapubic I used to get a lot of infections. So I probably was in hospital for two weeks, out for two weeks, back in for two weeks. Like it was, it was not, it wasn’t great back then.

Was that a local hospital?

Yes, yes, it was. But it wasn’t a good time.

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.

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 VesicareÆ. 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.

So I used to just move my tube over here till it would all be over to one side. But obviously in the heat of the moment you don’t really want to be like, Oh, hang on, I’ve just got to move my wee bag out the way kind of thing. But that is what it used to be like.

And maybe it’s because I’m the type of person that can have a joke and stuff. I used to be like, Oh, I’ve just got to move my wee bag out the way. But obviously in, I wish I didn’t have to say that. But that is what I used to have to say. And we used to kind of like joke it off and stuff.

So with the boyfriend, catheters weren’t a problem?

No. I was with him when I had my suprapubic catheter, and he was the one that was like to me, Come on, let’s sort out this self-catheterising situation. So we did.

That must have made it much easier.

Yes, he much preferred that. He was like, I haven’t got that tube thing to worry about, because we used to call it the tube. That was what it was called. Because sometimes you’d be worried in case you rolled into it or something like that. So I always used to have to flop it to one side.

But after the catheter was removed he suddenly used to think it was really weird because he didn’t have to worry where it was any more.

Yes, so we decided to have a baby and then obviously I got pregnant. And everything was fine. I carried on self-catheterising. But from about 16 weeks pregnant it got increasingly harder to catheterise. Every day it would be more of a struggle than the previous day, more painful, harder to get in, things like that.

Obviously I didn’t talk about this, but obviously when you were having sex, every time after I used to have sex, every time I emptied my bladder, my urine would be red, where obviously the banging of movement used to move the balloon inside your bladder, which used to irritate it. So then it would bleed constantly.

So then I used to not want to have sex because, when I had a suprapubic catheter, because it would be so uncomfortable for days. It wasn’t, I used to think, Is it even worth it

Did you ever ask the doctor about that, about the bleeding?

Yes. He used to just say it was the movement, he used to say it was the movement and there’s not a lot you can do about it.

So having the suprapubic catheter made sex a bit painful?

Not a bit. A lot.

Oh, really?

A lot, yes. Like, you know, me and my boyfriend, we used to have conversations about it, because he used to obviously want to do it more than what I wanted to do. But then he used to understand that I couldn’t be going through the pain. And also when I used to have sex as well, it used to make me more likely to have a urine infection. I used to think, Oh, I can’t be dealing with having another urine infection. So I just won’t do anything at all That’s what it was like.

So it really affects your life, doesn’t it?

Yes. And then once I had my suprapubic catheter, where I used to have it changed so much, it gave me scar tissue, which gave me adhesions, which then made sex even more painful. So I had to have another operation to get my adhesions separated to even be able to have sex. Because it got to the point where I couldn’t actually have sex because everything was so painful. And that was a side effect of having a suprapubic catheter.

These were adhesions in the bladder?

Yes, and all round it, from the constant movement of my suprapubic catheter. I had to have the adhesions separated about six months after I’d finally had my suprapubic catheter out, because I was in constant pain. And it was only when my urologist said, Right, you need to go and see a gynaecologist And he said, Your adhesions are the worst I’ve ever seen and no wonder you’re in so much pain

Where the baby was moving, the catheter was being forced out with the balloon fully inflated still. So it was expelling catheters constantly, more than once a day. So then my urethra was bleeding, everything was dreadful. But they had to put something in because otherwise I couldn’t go to the toilet. But as soon as I stood up the catheter was coming straight out fully inflated. And it was awful.

They tried numerous things. They tried to put the catheter, urethral catheter in without inflating the balloon, and taping it to my leg and to me to try and see if that would help. Which this one doctor thought was a great idea. But I knew as soon as I stood up it would come out. Which indeed it did.

It must have been so painful.

It was, it was bad. And they said to me, Just lie down. But obviously you can’t just lie down, like you can’t. So I increasingly struggled. The baby then started getting distressed, so they told me that there was no way I could have a natural birth and I’d have to have a Caesarean early.

Was that because of the baby or was that, that wasn’t connected with the urethral?

No, that was because of the urethral catheter.

There’s definitely no catheter designed for pregnancy. Because usually if people have catheters in pregnancy it’s just when they’ve had an epidural, when they’re giving birth, isn’t it? It’s not day to day, having to carry on your pregnancy weeks.

Have you got any ideas how they could improve it?

I’ve no idea. In the last like week of my pregnancy my consultant had a genius idea, which he said he didn’t know why no one else had thought of. So that when he put the catheter in, he did inflate the balloon and he physically put his hands in and forced the balloon above the baby’s head so thatBecause obviously before, whoever was putting the catheter in constantly, they were just putting the balloon there. And the balloon was here and the baby’s head was here. So as soon as the baby moved the catheter was going bang,

straight out.

So he put the catheter in and then pushed his fingers, and pushed it underneath the head, and that kept it in for about four days. So even though it was then still expelling it, four days compared to more than once a day, my bladder was getting a bit better.

I only ever had a valve. Unless I was obviously admitted into the hospital with an infection, then they would make me put it on a bag so that they could measure the urine output and the colour of it and things like that.

But when I was at home having my usual, normal social life, I never had a bag on in case it burst or something.

So you could wear clothes without people noticing?

Yes, yes. I used to just tuck it down the side of my knickers or under my jeans or whatever.

I couldn’t do it [self-catheterise]. So then I got really stressed and I thought, Right, I’ll have a day’s break and then, so I can calm down and then go back to it. And then the first time I tried after the break, I did it perfect. And I’ve been able to do it ever since.

What was the most difficult thing? Locating the urethra?

Yes, yes, I just couldn’t find. I don’t know, yes, I just couldn’t find it I think or, and you didn’t know if it was in the right place or the right hole. But when you, it is true, when you carry on doing it you just, you could do it with your eyes closed. You know exactly what to do. And so then I went back to hospital probably about two weeks after that, and I had to, the nurse asked me to self-catheterise in front of her, so that she knew that I was doing it correctly and things. And I said, Yes. So I did it and she was happy with it.

Every time I self-catheterise, I’ll go to the bathroom. I’ll wash my hands, and then I’ll get my catheter. I’ll squeeze the water out, which is inside the catheter, which is like a saline solution that will clean it all and make it easier to pass.

And then I’ll put the catheter in and drain it out, put the catheter back in the wrapper, chuck it in the bin and wash my hands. And then carry on with my normal day.

So are you sitting over the loo as you do that?

Yes, well, I stand up, and then sit down when it’s in. But I’ve now got it down to a fine art, so it will take me as long as any other person to go to the toilet. I’m that quick at it now.