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 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.

You said you take Buscopan?

Yes

Do you get any side effects from that drug?

Not from that one, no.

And do you take that at other times as well?

I only take it if I’ve got really bad spasms.

Do you sometimes get spasms at other times then?

A lot, yes, I get them a lot

Has anybody else, any other health professionals been involved in your care apart from the GP, the district nurse and the consultant?

I did see a continence nurse once when I first, after about a year of having it [catheter] because I was in so much pain all the time. And she was the one that got the GP to write up for the bladder spasm tablets. I was on oxybutynin then but I couldn’t put up with the side effects of them.

That was a year after you’d had the catheter?

Yes. I was referred to her from my district nurse because my district nurse had said she knows more than I know, you know about bladder problems. And she wrote to my GP about the low dose antibiotic every day and the bladder spasm tablets, but until then I hadn’t had anything

…the only thing I can probably think of is, if anyone has to have a suprapubic, I think you’re probably getting more bladder spasms wearing a bag than you do not wearing one.

How have you found that out?

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

Although I’m seeing, I saw a urologist recently and I’m getting Botox into my bladder. Because of the MS, I get a lot of bladder spasms. That’s a lot more than I should take, cos for that reason alone so the Botox will hopefully stop that spasm from happening. But I’ll still keep the suprapubic catheter in place. And so, rather than using a bag, I’ll use a valve, cos I can’t retain any urine currently. My bladder is too, just spasms too much to retain anything.

But the Botox will hopefully stop that and I’ll be able to use my bladder for its purpose of storing urine. That’s what it’s meant to do from nature, and so that will hopefully improve things a lot for me, which is what I’m looking forward to a lot. And that is basically the situation I am now.

This is all new treatment is it?

Yeah. The consultant I see, the urology consultant, doesn’t do Botox, but his colleague does. So you have to transfer from one list to another list, which is a bit long winded and cahooted, but it’s the politics of systems I suppose.

I’m getting it in November.

In November you’re getting that. What will that be? Injections?

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