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Taking on the Taboo: Continence Nurse Specialist Jane Simpson on What Men with Prostate Cancer Need to Know About Incontinence

Continence Nurse specialist Jane Simpson, author of the Pelvic Floor Bible, joins OnFocus to discuss what men with prostate cancer need to know about continence and what they can do about it.

Please find below a written transcript of the interview.


Clare Delmar:
Hello and welcome to On Focus brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided or even ignored. Prostate cancer is now the most commonly diagnosed cancer in the UK, and with this sombre fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Jane Simpson. A continence nurse specialist, Jane has run a private practise at the London Clinic in Harley Street for over 22 years, where she treats men and women, young and old, with all forms of incontinence and pelvic floor dysfunction. She’s the author of The Pelvic Floor Bible, published in 2019, a best selling guide to improving and maintaining pelvic health, and is a member of The Pelvic Floor Society, The Association for Continence Advice, The International Continence Society, the British Association of Urological Nurses and the Association of Coloproctology of Great Britain and Ireland. As you can see, Jane knows all things continence, and she’s here with me today to talk about what men with prostate cancer need to know about it. Jane, welcome. Thank you so much for joining me.


Jane Simpson:
Thank you for having me, Clare. It’s a great privilege to be on this podcast with you.


Clare Delmar:
Well, you’re such a specialist in this area that we all know is taboo, but this is something you literally live and breathe and you’ve seen so many people go through. Maybe you can start by telling me what your experience as a public health specialist with men diagnosed or recovered from prostate cancer has been.


Jane Simpson:
So as you said, I’ve been working in this field for over 22 years, largely at The London Clinic. And originally when we started caring for men with prostate cancer, all of the surgery was open surgery, which required a lot longer in hospital. And we’ve moved on hugely since then doing robotic radical prostatectomy, sometimes radiotherapy, HIFU and various other types of treatment. And men have never had incontinence in their lives. It’s completely new and very frightening experience for them. So I was on a learning curve at the beginning because largely my practise was female. But over the last 22 years, I’ve looked after thousands and thousands of men who have been treated for all types of prostate disease, not just prostate cancer with pelvic floor issues. And largely that’s stress incontinence, which happens when you cough, sneeze, laugh. And it mostly was women who had stress incontinence after having babies. And so for men to suddenly have these problems was quite shocking for them and a learning curve for me at the beginning. But clearly, I now have a lot of experience and men are frightened by it. It’s a brave new world to suddenly find you have to wear a pad or a nappy and you can’t control your bladder, which you’ve always done your entire life. So I think it’s a really important area which is still under talked about unless you suddenly find yourself in that position. We’re very lucky to also now have good charities support and good medical support in giving you the options for treatment.


Clare Delmar:
So what would you say are the most common challenges for these men?


Jane Simpson:
Without question of a doubt, it has to be erectile dysfunction and stress incontinence. And I think also family life. Men have gone through their lives controlling their bladder, as I just said, and being able to get an erection when they felt like it. And to suddenly find that those two things might be not working is very frightening for them and very challenging. And I think that continence is a bigger deal for them. I actually saw a guy a couple of weeks ago who was quite young and not married yet. He was looking for a partner in life. And he was I would have thought that erectile dysfunction was more important to him, but his continence was much more important to him. And a lot of guys will tell me, well, I’m not really worried about erectile dysfunction till I have my continence back. So it is an extremely important thing for men to have a problem with. I think both things are important. And family life, clearly, is part of that, because controlling your bladder and being able to have a happy sex life are very important in family life and work life too, thinking about going back to the office wearing a pad that might leak and wet your trousers is, is something that men…  women have had periods and pads and babies and we’ve dealt with that through our lives. But for men, it’s a very brave new world.


Clare Delmar:
Nice way to put it, actually. I mean, do you think that men fully understand what incontinence means when they’re considering treatment options for prostate cancer?


Jane Simpson:
I’m not sure that they do, and actually The Urology Foundation did a little study a couple of years ago and they found that two thirds of the British public didn’t really know where or what the prostate gland was. Never mind what would happen to you when you were thinking about treatments for the prostate gland. You go along and you have a PSA test and suddenly find you have prostate cancer. And I think that the cancer part of it clearly at the beginning has got to be the most important issue. And it’s only when you start then unravelling it and deciding what treatment you’re going to have, that you start thinking about things like incontinence. What’s very good is over the last possibly 10 to 15 years, we have started seeing men before the operation and actually trying to make sure they really do understand. Understand what the pelvic floor is, it’s a hammock of muscles that is attached to the pubic bone at front and your coccyx at the back and sort of to the two bones that we sit on side to side. It’s a hammock of muscles which in men works perfectly well to help with erection functions and also keeping us continent, stopping us passing wind when we’re out and about. And normally it works perfectly well for men. And so I try to explain to them what their pelvic floor is and what the incontinence is. And I think men sort of often think they’ll just sort of be totally incontinent, leak everywhere, which isn’t true. It happens when you cough, when you sneeze, when you move about. I had a guy who was… He loved tennis. And so he was thinking to myself, well, I’ve had the operation. Jane’s told me to do my pelvic floor exercises. I’m fit and healthy. And he started playing tennis and he came back to see me and said, well, I don’t understand it. I’m not better, why aren’t I better? And I said, Well what have you been doing? And he was good at tennis. He played a relatively high level and clearly he hadn’t thought, gosh all that jumping up and down playing tennis is putting a great stress on his pelvic floor. So even though he knew that stress incontinence was a downward pressure on the pelvic floor, the weakness of the muscles postoperatively, he’d still gone off and played a lot of tennis. He stopped the tennis and got better. So I think it’s one of those things that I think in general we put to the back of our minds because we think it won’t happen to us.


Clare Delmar:
Yeah, indeed.


Jane Simpson:
And it clearly doesn’t happen to a lot of men ongoingly. It happens to quite a lot of guys in the short term while the muscle recovers and bruising goes down. It’s like having a broken leg. The problem is you can’t see it because it’s inside the body. The pelvic floor is neatly tucked away in your underpants. It’s not like a great big gash on your leg. So, you know, you don’t sort of worry about it too much. But it clearly, even if you don’t have any incontinence after the operation, you must must do your pelvic floor exercises.


Clare Delmar:
Do you think that this is something that has to do with the language? That the language and communication around incontinence possibly inhibits understanding and acceptance? Do you think that’s part of the challenge?


Jane Simpson:
Yes, I do. And when I talk to men who’ve had the operation, they talk about wearing nappies, that they’ve never leaked urine before. It’s often seen as a very female centred problem. If you look on the television, there’s lots of little adverts for Tena Lady, but you never see adverts for men. And actually, I’m going to just read you a very short quote from a patient of mine who I think sums up this question very well. He says, “My prostate first made its presence felt during my mid 50s when having a wee ceased to be what it was. What had always been a powerful jet dwindled to a mere trickle and three or four effortless tries where needed before my bladder felt empty. Like most men, when things go wrong below the belt, I was overcome with squeamish embarrassment and told no one.” He actually ended up having surgery and a radical prostatectomy. “Having never experienced incontinence in my life, it was the last thing I expected. What I had was stress incontinence. As long as I sat down or lay down without moving, it was fine. But any kind of exertion or anxiety set it off”. He says, “Female stress incontinence is discussed quite openly, even with jolly little TV ads. But nothing is ever said about the male version.”


Clare Delmar:
We find this all the time.


Jane Simpson:
And I think that sums up about communication to do with men and incontinence.


Clare Delmar:
Indeed.


Jane Simpson:
It is with women, I think, particularly with things like Instagram and Facebook groups to do with menopause, to do with women’s health. I’m part of that world, and it’s there all the time and I quite often do a little Instagram for men, and I never really gets a lot of response back from that. I think it’s still a difficult subject for men to talk about. Clearly I talk about it all day long. I’m rather unusual in that department.


Clare Delmar:
But I think it’s language and communication can… You gave a really good example there, but it extends even deeper and more, I think, pervasively into our lives. And one of the things that we’ve talked about before is even something as prevalent as public toilets or should I say not prevalent because so many of them are closed. So it can really inhibit the behaviour of men. I mean, obviously in women, but we’re talking about men here, who suffer from incontinence and really, really impact their lives in a negative way.


Jane Simpson:
It actually does. Bizarrely, this morning, I had to dash off with my husband to take our car. It’s just random, it’s gone to Autoglass to have a new windscreen. And I had to take him because the guy rings up and says it’s going to take three hours to do this job. You can’t wait in the waiting room, it’s closed. And so are the lavatories. So if you’re a man who had no choice but to sort of hang about outside in the cold, then Autoglass have closed their loos. Maybe we shouldn’t say Autoglass, but it’s not their fault. It’s with the covid restrictions. And I think that’s true of most businesses. And, you know, clearly my husband actually doesn’t have a worry about that. But if if he did, he was abandoned there for three hours.


Clare Delmar:
Yes.


Jane Simpson:
I think that sort of public loos for men, they don’t ever think about it before they’ve had this particular issue and suddenly it becomes actually quite important. And interestingly, I’ve had a lot of conversations with guys about the fact that male loos don’t have bins in them. If you go to a ladies loo, there’s a sanitary bin to put your sanitary towel in, or your tampon or whatever. If you go into a men’s loo, there is no bin. So if you’ve got a wet pad, you’ve got to put it in your jacket pocket. Men don’t carry handbags.


Clare Delmar:
Exactly


Jane Simpson:
…largely. And so they are left with this thing. What do they do with it? And that actually is… It is a deal. And I think even if they can find a loo that’s open, you know, men’s loos are urinals with then some cubicles, so they’ll go to the cubicle, and then realise, oh, my God, what am I going to do with this pad? Because there’s know where to put it.


Clare Delmar:
It is very subtle.


Jane Simpson:
So things like that are actually rather alarming and meaningful. And change is needed in that area, I think, in men’s public lives.


Clare Delmar:
Absolutely. I mean, we see this all the time and it seems to be going backwards at the moment. But that’s why it’s interesting to lobby for this and to cite men with prostate disease. But I think the other issue about communication that’s so interesting is as men are even considering treatment and whether they use less invasive treatment like what we offer or radical treatment, they need to understand what incontinence would mean, should they choose a treatment that might bring that on them more severely. And I think that’s what we find a lot of men just aren’t in a position to really understand that.


Jane Simpson:
I think so. And I think the cancer diagnosis is a huge shock to everyone. And then if you’re just told, well, this is the option for you, you hope that men are given all the options. I think with the increased use of the internet. And I’m always fearful of the word Dr Google and that we must be careful about how we use that information because there’s a lot of disinformation out there. However, there is good information in places like The Urology Foundation, the prostate cancer charities, Movember movements and things like that, which actually give good evidence based information for men, which before I mean, what would you have done, gone to the library and read Grey’s Anatomy? I mean, there wasn’t… At least we are moving forward in our communication and understanding. And for us as medical practitioners, that in itself is challenging because obviously guys come and tell us, well, I’ve read about this and that, what do you think of it? And so it makes sure that we all at the top of the game, too, because you need to know what’s happening and hopefully, clearly we do.


Clare Delmar:
What would you do to improve the situation? You’ve been doing this for 22 years. You’ve written a book, you’ve seen so much. You’ve seen, you engage with men both on their emotional side and their mental side and their physical side. How would you improve the situation?


Jane Simpson:
So I think it started with my book, my Pelvic Floor Bible, when I wrote it, the Penguin editors were a bit surprised that I wanted to include a chapter for men in it. And I absolutely insisted. I said, I’m not writing this book without including men, because clearly men have problems with incontinence and pelvic floor dysfunction, whether that’s either erectile dysfunction or stress incontinence or other types of incontinence in fact, the overactive bladder, when you can’t get to the loo in time, you have urgency. It’s largely stress incontinence that affects men post radical prostatectomy or prostate surgery. So clearly I try to see them all before any form of treatment and explain what the pelvic floor is, how it works, how it will be affected by the treatment that they have. And I teach them pelvic floor exercises. I think pelvic floor exercises taught before treatment. There’s lots of research now to tell us that that is beneficial post treatment. It certainly wasn’t something that we were doing 20 years ago. But clearly, there’s lots of evidence to say that men with a healthy pelvic floor, if they understand how it works, will have a better light bulb moment of making it work again when they’ve had whatever treatment it is. If stress incontinence isn’t improved with just pelvic floor exercises, I do sometimes use electrical stimulation, dependent on the treatment they’ve had and the level of disease they have, this sometimes is contraindicated, but there are sort of pairs of shorts you can put on called Inovo. There is stimulation machines you can by that help to improve pelvic floor tone. And I think lifestyle is hugely important and I’m really hot on this before treatment. So whether that’s weight, whether it’s constipation, because bowel is clearly a part of the pelvic floor and can definitely affect it, whether it’s what they’re drinking and getting fit as possible prior to the treatments. And I think if you maximise lifestyle, understand how your pelvic floor works and then look after it properly afterwards, it will reap rewards. And I also talk to them clearly about the correct type of pads to wear in the short term post treatment, because I think if you come out of the operation, you need to have the kit to hand so that you are totally prepared and then you will actually feel better and recover better if you have good evidence based knowledge and information about how to care for yourself.


Clare Delmar:
Well, Jane, it’s been really interesting. And again, it’s lovely to talk to somebody who is so evidence based about a topic that a lot of people don’t want to talk about. So thanks so much for joining me today and speaking about this. It’s been a real pleasure.


Jane Simpson:
It’s been a great pleasure, Clare, and it’s my passion in life, caring for people with urinary problems and pelvic floor dysfunction. It’s still very under-reported, and under-treated and any raising of awareness we can do gladdens my heart, so thank you.


Clare Delmar:
Further information on Jane Simpson, her practise and her book is on our website, along with the transcript of this interview and additional interviews and stories about living with prostate cancer, please visit www.thefocaltherapyclinic.co.uk. Thanks for listening and from me, Clare Delmar, see you next time.

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