How can I treat bladder problems in MS?
SUMMARY KEYWORDS
bladder, bladder problems, urine, toilet, catheter, MS, pelvic floor exercises, feel, talk, people, symptoms, pelvic floor, problems, muscle, good, fluids, generally, medication, infection, call.
Nick
Hi there, and welcome to multiple sclerosis, breaking it down. A podcast by the MS trust, and you’re joined today by myself, I’m Nick, and my colleague Helena. Hey Helena!
Helena
Hi! We’re here today, we both work at the charity the MS trust which is a charity here in the UK for people affected by MS and we are here to hopefully to help you make some sense of multiple sclerosis.
Nick
Yeah, for sure, on our pod we aim to talk to lots of different voices not only from the MS community, but also from featured experts as well, to cover all the different aspects that MS can impact your life. So, we aim to provide an in-depth insight on things like MS symptoms, management, treatment and everything in between.
Helena
And today we are going to give a bit of a focus to bladder problems in MS. Bladder issues are very common in multiple sclerosis. It’s thought that around seventy five out of a hundred people with MS experience them. Bladder problems can be divided into two types, those relating to the storage of urine and those relating to emptying of urine, and some people experience a combination of these two symptoms. To go into this a little bit more, I am just going to read a little from our A to Z from our website, because it is worth pointing out that me or nick aren’t medical experts. But we do have a website that is thoroughly researched by a bunch of really clever people and all the information is checked several times through, so it is correct.
So, problem storing your urine (which is called also urgency and frequency) - storage problem can cause you to feel a sudden urge to go to the toilet, often, which is obviously urgency, and the need to go to the toilet very often, which is frequency. And this can happen during the day and night and bladder accidents may happen where bladder control is lost, and urine leaks out. Problems emptying your bladder- which we can talk about hesitancy, intermittency and retention, which are empty and problems that can result in such as symptoms at your urine flow being slow interrupted, which is intermittency, it taking longer than normal to start passing you and which is hesitancy or feeling like your bladder hasn't completely emptied, which is retention.
Nick
Yeah, and with, some of these symptoms, it's, you know, they can be painful as well, but also when we hear about a lot is actually the huge impact that these symptoms can have on people's lives. So, some people might want, you know, might avoid going out, they might miss out on important social events or activities, because they're worried about these problems. And we also do hear about people who also actually struggled to maintain work to be able to go in and have employment, because, you know, people are worried about constantly needing the toilet or interrupting their work, maybe they do a job where they have to be on all the time, you know, so it can have those knock-on effects.
And yes, you know, we not only hear about the problems with the symptoms, but also the feelings attached to that as well. So, a lot of people we know get in contact with us and they're feeling embarrassed, maybe they've been uncomfortable. You know, you don't want to talk about bladder problems. Often, you know, it’s one of those things that people you know, one of those things sensitive topics that can almost feel, you know, taboo in some situations. And maybe you might have been in that situation and maybe haven't started to have these conversations with the people around you, or maybe even your health professionals too. But, you know, health professionals have such a good understanding of what you're going through, and actually, they're the people to start your journey with. And they, you know, no matter how embarrassing, you might feel at that point, you know, they've probably heard your symptoms from hundreds of people, you know, it's sort of second nature for a lot of the health professionals. So, it's also worth noting that with information with support with treatment, lots of bladder problems can be successfully managed. And actually, those sorts of impacts that you might have in your daily life your working life can be managed as well.
Helena
Mm. I remember when I went to an event once with a neurologist and we were talking about things that people with MS were worried about in the future, potentially progressive problems. And there was somebody there that talked about that they were worried about having bladder problems. And he said he got so felt so upset about that, because he felt like, you know, there's so many of these bladder problems that can actually be treated, and that that we shouldn't have to worry about these things. But because people don't go and talk about it, then people live with these problems, when they actually potentially could be helped.
And your MS nurse is a great place to start. Like Nick said, you know, these people have heard about the problems in and out in their daily, you know, daily work. Because when we said at the start, 75 out of 100 people with MS have this issue. So, you know, they will have heard about it. And, but you know, saying that it's easy, sort of easy for us to sit here and say, yeah, go and talk about this no problem. You know, I struggle with some bladder problems. And it took me a long time before I started talking to my MS nurse about it, because, you know, there is a stigma attached to it. So, I can really sympathise with people who find this a bit of a struggle.
Nick
Yeah. 100%. And, you know, I think we're moving towards a place where some of these situations are more normalised aren't we, I would say, in society? But still, we know from the people who get in contact with us, that actually they’re saying they've been on this journey, like similar to you, how it is taking them a long time to get to the point where they feel comfortable having a conversation with a health professional. So, you know, I guess the good news side of things is that, as you were saying, Helena, there's loads of ways to treat or prevent bladder problems. So, in today's episode, we are going to talk to you, specialist nurse. And she is going to walk us through some of the approaches that you might be able to take on in your life so that you can better manage and understand your bladder problems. So, without further ado, I think we'll jump into our interview with grace.
Helena
Hello, everyone. Today, we are going to be talking a little bit, well I say a little bit, actually, you've been sending in loads and loads of questions about bladder, we were really impressed by the amount of questions we've been getting. So, we got busy, busy time ahead now. So, we've got ourselves, somebody to talk to you about bladder issues, and this is MS nurse Specialist, Grace, but I'll let you introduce yourself. And then I think we'll start off with all the questions.
Grace
I'm Grace Hazlett I’m a nurse and I work in Hertfordshire.
Helena
To start off, people have been wondering how are bladder issues diagnosed and investigated? If people sort of suspect that they have them? What can people expect to happen?
Grace
Okay, so when you initially see your MS nurse, they’re probably going to ask you some questions about your bladder and bowel.
So, it's really important to take quite a detailed history to assess what sort of symptoms you're experiencing. And part of that we might ask you to keep some bladder chart so we can see how often you're going. Most people would go between four and seven times in the day. So, if you're going a lot more often than that, or even less frequently than that, that may be an indication, again, with your symptoms about what the possible cause of the bladder problem is.
If you're getting up a lot at night, that's a good indication, and usually something that we can manage.
Then we do things like a bladder scan to make sure that your bladder is holding enough urine and in order to check that your blood is doing properly.
We could refer you on to see maybe a continent specialist and get a bladder scan taken and also, they might do a physical examination. So vaginal examination. Sometimes with the men we will refer to the GP to do a prostate examination. We will test your urine as well to see if there's any infection or if you're dehydrated.
Sometimes we might ask a urologist to see you if we're concerned about your kidney function that can often show up with you having some blood tests taken. So, we might want to check to see if you have any stones for example. There are more specialist tests again, which the neurologists would do. There's something called a cystoscopy, where he or she would have a look in your bladder with a little camera. Just to see if there's anything abnormal there.
And there are also some more specialist tests called urodynamics, where we artificially fill your bladder, and look at the pressure in the muscle. And then we get you to empty your bladder to see how strong that contraction is when you're emptying. So, some of them are a bit more invasive than others. But we would always start with the basic assessment, keeping some charts, testing your urine, maybe getting some bloods done. And then, if necessary, we'd refer you on for the more special versions. But there's a lot more to it. Yeah, especially your symptoms are going to guide us very much as to what road we're going to take. So, we're obviously going to start off with the least invasive,
Helena
We quite often hear about pelvic floor exercises. So certainly, as a woman who has been pregnant twice, I know they were telling me about them then, but we hear more and more people talk about how important they are. But how important are they actually in sort of managing bladder function? And could you talk us through some of the exercises?
Grace
Yeah, definitely very important, because your pelvic floor is actually doing an awful lot of work. It's supporting your bladder, your vagina and your bowel.
So, what I generally do, there are lots of regimes out there. But what I generally recommend is actually locating the pelvic floor is the most important thing in the first place. Because often you see people and shoulders and everything are moving, and you're not really exercising the correct muscles. So, it's basically a squeeze and a lift around the vagina. And if you can squeeze and lift, around the back passage, as if you were trying to stop yourself from passing wind. And if you can squeeze and lift and hold for a second, that will stimulate what we call a fast twitch muscle. So, when you cough, sneeze, laugh, that's the one that kicks in quickly. But then we also want to build some endurance into that muscle. So if you can squeeze and lift, it's a very gentle movement, and see how many seconds you can hold it for a lot of the exercises will say, hold for 10, 20 seconds, most of us, when we start doing these exercises, we're probably two or three seconds. So I just say work up, work it out for yourself, and then fit it in whenever you can. I don't think that many people will be, you know, doing 20 sets a day. So, it's when you put the kettle on, for example, just do a few.
So try and do both types of exercises, the quick ones, squeeze, Lift, release, and then the longer ones where you squeeze, and you lift and see how many seconds you can hold it on for. So doing anything is better than doing nothing. And just make it a habit. You know, when you sit down at your computer, just do a few.
Helena
It's almost like one of those things like building like why you brush your teeth, we get told from a very earliest stage that we should be brushing our teeth for dental health. And it's a similar kind of approach, isn't it?
Grace
Exactly. While you're brushing your teeth. Do your pelvic muscle exercises at the same time.
Helena
Two for one!
Grace
Yeah, it's a little bit of multitasking. Yeah, just fit it into whatever you do regularly through the day. Just think I'll just do a quick few exercises. While I think about it.
Helena
Are there any sort of similar exercises for men to do?
Grace
Yeah, very, very similar. So, with men, I would often say try and look in the mirror. So, what you will see if you're squeezing and lifting in the right place, you see a slight lift around the genital area. So, you know that you're doing the right muscle. And again, around the back passage, it's a squeeze and a lift. And it'd be pretty much the same regime.
Helena
Excellent. And here's a here's a thing that I find quite interesting because we were talking about you know, training these muscles, but can you also actually train your bladder to hold more urine?
Grace
You can do absolutely. And often there's a regime called bladder retraining. So, we can easily get into the habit of passing urine just in case. So, the more you pass urine, the less able your bladder is to hold urine. So, what I would generally say again, this is where your charts can be really invaluable information, because you can see at what points of the day your bladder is behaving the worst. And also, if you keep your fluid intake, you can see if it's related to that.
So, what instead of getting up and passing urine, the minute you feel that urge, if you can stay sat down, and see if you can time how long it takes for that urge to go away, and then gradually start expanding that time to give your bladder greater capacity, because it will fill up more and more. So, the smaller volumes you get, the more frequent you're going to get because your bladder is a muscle, and it does need to expand your bladder is a muscle. So, you need to work it, you need to imagine that that's your bladder, when it's filling, it should remain nice and relaxed. And you've got a sphincter here, men have two sphincters and it's surrounded by a prostate. So, you're letting that bladder stay nice and relaxed as it fills up. And it will gradually, gradually stretch, when it gets about halfway full, it will send a message to your brain saying I need to empty you need to start looking for a toilet. Sometimes people don't get that message. And that's when they get this very urgent and frequently to pass urine. And then your instinct is to get up and go. So, what we're trying to do is allow that bladder to fill up a little bit more a little bit more. So, a normal bladder capacity is anywhere between roughly 300 to 500ml. So, it can actually hold a fairly decent amount. And then when you get to the toilet, we want the bladder to contract down, and we want that sphincter to open up and then you pass urine. So, we what we're trying to do is get your bladder to function as a storage organ so as it can store that urine. And then it also we want it to eliminate when we want it to.
So, we're doing this bladder retraining, in conjunction with your charts, you can see if that's going to help.
Helena
It's really interesting.
Grace
But I will do pelvic floor at the same time.
Helena
So, you kind of correlate both trainings.
And it's interesting, isn't it? Because I think since we were small, we've always been told that kind
of go to the toilet, just in case. But actually, that's not very good, then.
Grace
Yeah. And you know, sometimes you have to go just in case if you know you've got to go out, you can have a lot of anxiety. I mean, we probably all go for a quick wee before we go out the door. Normally we want to go about every three to four hours in the day.
Helena
Oh, that's good reference. Okay.
So, we've talked a little bit about, you mentioned overactive bladders. So, if you need the loo, urgently, frequently. Are there any treatments for it? And if there are any drugs are they actually affective?
Grace
There are medications. So, they're called anticholinergic, or you might hear them referred to as anti-muscarinic. And what they do is they treat people with what we call an overactive bladder. So when you've got that urgency and frequency, and what they do is they block the nerve impulse, can have a lot of side effects. So you do need to be aware and there's certain conditions where you can be prescribed them. So, if you've got blurring of vision, because sometimes they can dry the eyes. They can cause constipation, or dry mouth. And sometimes because we're getting them to relax the bladder, they can actually send you into retention of urine.
There are alternative medications that can be used and it's usually under the supervision of a urologist or a urine gynecologist. Some of the antidepressants, antispasmodics. Sometimes they might use Botox injections into the bladder. And then after that, you're getting into much more specialist treatments, which we probably won't touch upon today, because they're more of the surgical. So, I would say if you're going for the first line medications usually will start you on a very small dose. And that's to help manage any potential side effects. Even if you start on these medications, I would still do the bladder retraining and pelvic muscle exercises, look at things like constipation and look at your fluid intake and that's why a holistic assessment right at the start before you start doing any of these interventions is really important.
Helena
How much water, fluid not just water should we be drinking today because I see so many conflicting messages on this.
Grace
The average I think is 1.5 to two liters a day, I would say is probably adequate to maintain your hydration and obviously the type of fluids that you take because a lot of fluids can irritate the bladder as well, such as caffeine. But, you know, stick to those three cups of tea, that’s generally a relatively low caffeine intake. And you know, you've got to have some pleasure in life.
Helena
That's true. I will be very sad if I couldn't drink any coffee at all.
Grace
Yeah. But you might have to time the coffee. So, you know, you have it when you've got more energy in the morning or, you know,
Helena
You mentioned Botox injections. And we hear about this sometimes, how does it work? And is it actually available on the NHS in all areas,
Grace
I'm not sure if it will be available in all areas, you'd need to check with your local urology service. But I would say it's probably fairly common that a center near you would provide Botox, and basically how Botox works, it paralyses the bladder muscle or the chooser muscle to reduce the amount of activity so to relax that bladder, and then in the hope that it will reduce bladder spasms and subsequent leakage.
It does have to be repeated proximately, about every six to eight months, because the effects will wear off. And you're often taught to catheterize yourself. So, intermittent self-catheterization. So, your urology nurse will teach you how to do that. Because sometimes the bladder will not therefore empty completely. And we want to prevent damage to the kidneys and prevent you getting recurrent urinary tract infections. But it is a very effective treatment.
Helena
And it was what Botox was used for first, wasn't it before people started putting it in other places.
Grace
Botox has many medical uses. Some of them quite surprising. So yeah, they use it in people’s eyes, they use it for sweating or all sorts of things. Yeah.
Helena
Here's a symptom that I feel very sort of familiar with myself. And that's nocturia, which is when people get up several times during the night to go to the toilet.
What can be done about it, if anything?
Grace
Okay, I think the most important thing, again, is going back to that initial assessment. So nocturia is actually being woken up at night to pass urine, which is different from nocturnal enuresis, where you don't wake up.
So, it's kind of normal to get up maybe once or twice at night, that's considered, you know, within an acceptable range.
And it really depends on what is actually the underlying cause of that dysfunction. So, in men, it could be something like a prostate problem, you know, as men age, they can get some benign enlargement of the prostate. Overactive bladder, again, that can wake you up at night, a urinary tract infection as we age, our heart and circulation isn't as efficient. And then if you get the swollen ankles in the day, you might find that when you elevate them at night, that makes your kidneys work a bit harder to offload that fluid, so elevating, you know, if you're an older person, or you're not as mobile, so just elevating those feet. At some point during the day, you probably will find just something simple like that may help to reduce that waking up.
How good is your diabetic control. If your sugars are very high, sometimes that can give you nocturia as well. Sleep disorders it's been associated with so people who maybe have sleep apnea tend to wake up a lot and pass urine. Drinking too much in the evening again, which is quite a simple thing, some people go all day because they're busy, and then they take most of their fluids in the evening. Again, that's where your charting makes you more mindful and more aware about what you're actually doing in the day.
And some people it's more common in children where they don't produce an antidiuretic hormone, so they're producing the same amount of urine in the day and at night as well. So sometimes there's some specialist treatments that you can have for that as well, and that's a medication.
Helena
That's interesting.
Grace
So yeah, that there are lots of things and the base, the kind of dues for that would be make sure that you're drinking the appropriate amount, you know, 1.5 to two liters a day, avoiding alcohol, moderate caffeine intake.
See your GP, because it might be medication related, you know, like diuretics or some of the blood pressure pills, they can cause various problems. And practice good sleep hygiene. And now we do lots of leaflets, under the fatigue management, so making sure that you're comfortable in your bed, you know, lights are not too bright, not you know, you haven't got a light that's shining in on you, you know, blackout curtains, all those sorts of simple things to do. You know, sometimes it's not always about a dysfunction with your bladder, but it can be an environmental thing as well, you know, and if you do need a commode or bottle or something like that, making sure that you've got that to hand.
Helena
Yeah. I think with myself, I think it's so funny if I wake up, because I do sleep quite badly. And I wake up, and as soon as I'm awake, there's something that just tells me you need to go to the toilet, even if I'm not like urgently needing it, but it's like, but are you awake? Now? You might as well because otherwise you'll wake up in an hour and you will need the toilet. And it's so I'm almost thinking it's more of a sort of fixed idea rather than my bladder actually needing.
Grace
Yeah, but very, very, very common. I think most of us if you wake up in the night, you think, oh mines will go to the loo. Yeah. And it can be it can be for any of those sorts of reasons. So, the treatments are really going to depend on what the cause.
And you know, stopping smoking would be a big one as well, because you excrete a lot of the bad stuff into your bladder, smokers have an increased rate of bladder cancer as well. So that's another, and weight management as well is good for the pelvic floor. If we're carrying quite a lot of weight that can have an impact as well.
Helena
That makes sense. And what can be done for people who retain urine in their bladder?
Grace
Again, various reasons why we can retain, I think we touched upon in men, it could be an enlarged prostate. You can get tightening on the urethra, which is the tube that we wee out of.
Gyno problems as well. Sometimes if you're, if you have a prolapse, you know, either the front or the back vaginal wall, sometimes, because you've got your bladder at the front, then you've got your vagina and your uterus and your bowel. So sometimes if you haven't got that support, the bladder can tilt back a little bit. And then you've got a little sample of urine that you can't evacuate, you can't empty your bladder properly. So yeah, as I say, depending on the reason it might be that you might be referred to a urogynecologist for a repair, pelvic floor repair, or some sort of intervention depending what the actual cause of it, some people, you might want to go down the route of a catheter.
So, there are various types of catheters. So firstly, it's probably clean intermittent self-catheterization, that's one option where you're taught how to catheterize by a urology nurse or one of your continence advisors. Urethral catheters or suprapubic catheters. So urethral they're going, as I say, through the tube, where you wee and help to empty the bladder. Suprapubic is where you have a day case operation, and the catheter is inserted just above your pubic bone and that takes about six to eight weeks for that channel to form properly. And usually, the first change is done in the outpatients in the General Hospital rather than the community but after that, then the district nurses will take over and do the changes.
Helena
And when it comes to catheters, like the, you mentioned, the intermittent catheters, how big are they? I mean, are they quite discreet?
Grace
They are discreet. There are many companies that produce different types of catheters. Usually they are all now pre lubricated, so you don't have to mess around, you can just open the packet, pre lubricated catheter, some of them are the size of while say slightly bigger than a lipstick, it just depends which one that you're using some come with a bag attached others you can just put in your handbag and, you know, go about your business, really, they are very, very discreet nowadays,
Helena
How much training do you get with using them, because I see a lot of people being very scared of starting to use them, because they just don't, they feel like they wouldn't be able to get to grips with it themselves.
Grace
Yeah, from my perspective, I would say as much support as you need, you'll probably get, one or two formal training sessions. But if you need more than you need more, and I think the first thing is, you know, have a mirror, have a look, get to know your own anatomy. So, some people have some blind ending tunnels. So, it might look like the urethra, but it isn't, but the nurse will be with you. And she'll teach you through and usually just take as much time as you need to get the hang of it. So, I would say if you tried to do it on your own, and you really can't do it, just give it five minutes, don't sit there and think or you the more anxious, you get you know, you can leave it, it's not the end of the world. You know, just pick up the phone, speak to one of the nurses, and I'm sure they'll support you through that.
Once you’ve got it, you've got it. Yeah.
Helena
In your experience, is there some sort of average time for how long people sort of start feeling confident in using them? I It's a hard question to answer, but
Grace
Well, I would say on average, probably two or three sessions. And it just depends how long I mean, I used to teach this many years ago, I don't do it so much in my current role, but most people would be quite confident. But then I used to spend like at least an hour going over it, doing a lot of explanation, showing them their own anatomy, getting them to have a look. So as long as you've got a lot of teaching, and that person's making you feel relaxed, because the more tense you are, the more difficult it's going to be to feel relaxed enough to put that catheter in. So, it can be disconcerting. But, you know, two to three sessions, you know, some people get it first time and they're like, okay, that's fine. Yeah.
But other people take longer. So, I wouldn't put any hard and fast rules on it.
Helena
No, but you don't need to feel bad if you're not getting it right the first few times.
Grace
Absolutely not. And for some people, it's just not for you, you know, some people, for whatever reason, just feel really uncomfortable with it. And then you know, we can look at alternatives.
Helena
Yeah. When it comes to catheters and sex,
do they get in the way because you were saying about specially intermitted catheters, catheters, I guess you could just, you know, remove altogether, but like the indwelling ones.
Grace
Yeah, I mean, with an intermittent catheter, you're literally putting it in draining the bladder and taking it away. And that's one of the advantages. But you've got to have quite good hands movement or manual dexterity to be able to insert the catheter, so it is quite a skill. And generally, I would say if the catheter was for long term use, we'd go for a suprapubic catheter. And that's got many sorts of advantages because it is going to be out of the way and it's not going to interfere whereas if you've got a urethral catheter, it may be uncomfortable during intercourse. But a suprapubic really will not interfere. It's out of the way it's above your tummy, you can secure it.
It's good for people that maybe are wheelchair users because it can be more comfortable and more accessible.
You're not likely to damage the urethra because the indwelling catheters are held in by little balloon. So, you don't want any pressure put on that balloon or you can damage the urethra. You can get little clips now where you can secure the catheter so it's not putting any pressure on the actual catheter. So, it's eased, they're really useful.
And it's also with a super pubic it's generally easier to manage from a hygiene perspective because you can just clean around the site. Less risk of it getting kinked or pulled out by accident. And there is less risk of getting urine infections with a suprapubic. So, for longer term management, that's generally a better option.
Helena
And let's talk a little bit about continence products. So, there's, there's quite a lot to base as well out there. I mean, get some on the market that you can buy, but other ones that aren't available on the NHS, or do you have to buy them themselves? And here's a question that popped up. Are there any brands that are sort of better than others when it comes to this? Because suddenly we see quite a lot of them actually being advertised to us as well?
Grace
Yeah, well, generally, they're the same manufacturers who are supplying to the NHS that are available in the supermarkets, they've probably got some very nice pull-on Nikka type ones that look more like normal underwear, they are quite expensive. So generally, the NHS will not supply those. But the quality is, is pretty high in the NHS.
You can speak to your continence advisor who can do an assessment and provide you with pads or your district nurse will do the assessment as well in order the pads, most surfaces will provide between three and four pads in a 24-hour period. And it just depends on your needs, they could be quite small pads, or they could be pads with a large absorbency.
But yeah, they are available on your NHS, so you shouldn't really need to spend too much, you might wish to supplement them. But also, there are lots of other different products out there that you can use, like bottles and Shewees, some of them sometimes might be on prescription. So, it's worth doing your research before you pay your money. Find out if you can get it.
Helena
Oh, that's a really good tip.
Here's a question that we had sent in. Is it common for people with MS to also get cystitis?
Grace
Okay.
I don't know the figures on this. But generally, I would say it's probably the same as the normal population. I'm not sure why somebody with MS will be more prone to that. And some people call it bladder pain syndrome. So, the symptoms can be very similar to having a urinary tract infection.
If you've got quite an intense pelvic pain, if you have urgency frequency getting up at night, pain in the lower tummy that gets worse as your bladder fills, and it's relieved by passing urine. All those can possibly be an indication that it's a, what we call, a bladder pain syndrome or interstitial cystitis rather than it being infection driven.
We're not too sure why some people get a cystitis. It could be damage to the lining of the bladder that affects the detrusor or the muscle or interferes with the nerves of the bladder. Is it to do with pelvic floor weakness? Or is it to do with your immune system where there's some sort of inflammatory reaction occurring? So as far as I'm aware, I don't think there is one particular test but again, it will be going back to that holistic assessment.
You'd probably be referred to a urologist to have a look at that if that's what they thought. So, they'd want to do a Cystoscopy. So have a look inside your bladder, and all the routine stuff such as testing your urine, doing an ultrasound of your urinary tract to make sure that everything's okay. And they probably do some vaginal swabs as well, just to make sure that there's no infection.
Again, all the usual stuff. Don't smoke. Because sometimes the irritants in tobacco can make things worse.
Also, some people find that their symptoms can wax and wane so they come and they go, so it's worth maybe keeping a diary of your food and your fluids to see is there anything there that's triggering the symptoms because sometimes it can be that you're reacting to something and that's causing an inflammatory response, cutting out certain foods and certain fluids may help to ease the symptoms. It's things like taking over the counter pain medication such as paracetamol. Sometimes the urologist will then think about being prescribed medication for nerve pain.
They may also give you an anticholinergic or anti muscarinic, to see if that helps with the urgency and frequency. Sometimes they give you a medicine to block histamine. So, it can be like you're producing this histamine like an allergic reaction, so they give you medication to see if that's the problem, there are some more specialists prescribing, which is not my area of expertise, and you need to speak to a neurologist about.
They will do some installations in your bladder and various things such as antibiotics, maybe Botox, and then again, we're talking about more highly specialists, possibly potential surgeries. If that was appropriate.
Helena
Are there any tips for preventing UTIs? Are there any sort of food supplements or anything like that could help you sometimes hear about cranberry juice? Does that really work?
Grace
Sometimes they can. I think if you've got symptoms of a urinary tract infection, such as increased urgency, frequency, pain, stinging, burning, smelly or cloudy urine, the best thing is to actually see your GP take an early morning midstream specimen of urine and ask them to send that off to the lab. Often what they will do is prescribe you an antibiotic. And it's what we call a broad-spectrum antibiotic, so it kills the bacteria. E. coli is the most common, it comes from the bowel, gets into the bladder and causes the infection.
The reason I say to take the specimen is because if once that's sent off to the lab, it'll tell us exactly what's growing. So, if you take your course of antibiotics, and you've still got symptoms, it may be that actually we need to give you a further course of antibiotics.
Again, it's doing things like making sure that you aren't drinking enough. It might be that you need to see your GP and get some more oestrogen cream prescribed, avoiding anything that is highly perfumed products.
The D-mannose and the cranberry, cranberry is thought to work by acidifying the urine, from bacteria don't like to grow in an acidic environment. The D-mannose, I think that works by stopping E coli from sticking to the lining of the bladder. And the bladder is quite clever in the fact that we get urgency and frequency. So, when you we you're paying out all the bacteria. So, I think D-mannose will stop the bacteria adhering to the lining of the bladder wall. So, you're weighing out more of those bacteria.
I think they're probably more of a preventative measure. So, to stop you getting urinary tract infections, I think if you're symptomatic you, you're going to need a course of antibiotics. I'd always say to go to your GP, you can use it to reduce the amount of infections that you're getting potentially,
They probably do need more research into how you know exactly how effective they are. But certainly, I've had a lot of feedback from patients that it has reduced their number of urinary tract infections. But just to say it's probably not going to if you've already got an infection, it's not going to treat it. Yeah, that's when you need to see your GP.
Helena
We mentioned this at the start a little bit about people feeling quite anxious about bladder problems, and this might actually stop you getting out and about doing things because people just think that ‘Oh, um, I don't know where I'm going to ,if that has a toilet or if I'm going to wet myself if I'm on my way somewhere.’ How can people actually reduce their anxiety around these things? Because it can be, it can be really tricky.
Grace
So, I think it's things like, you know, you can get ‘can’t wait cards’, and you just put it into your purse. And if you're if you're going out and about, there's a big queue for the ladies, you can just flash your card while and you're having to say anything, I think various different charities will give you the card. Having a radar key for access to the disabled toilets. Looking at maybe other products, you know, your pads are there, you know, making sure that you've got spare pads, maybe a spare pair of knickers or, you know, a charger, that sounds like a little bit of a palava But it might just give you that confidence that you know, even if the worst happens and you have an accident, you can get yourself together while you while you're out. So, you know, spare pair of underwear.
And also, you know, doing your doing your treatments, doing your bladder training your pelvic muscle exercises,
Knowing where you're planning your route, I guarantee that most people who've got a bladder problem will know where every toilet is on the road. So, they're actually very handy people to know.
Helena
That's good. So, the last question we had was, Can MS bladder problems be masking other comorbidities?
Grace
I think really, if you've gotten any urinary symptoms, make sure that you do discuss it with a health care professional. And that we then refer you on to have a proper assessment. I don't think it's necessarily that the MS is masking anything. I think we do have to be careful not to blame everything on the MS because it can be something that's completely unrelated to your MS. So, I think the assessments will be pretty much the same, regardless of any comorbidities.
Helena
So always best to talk to your health professionals.
Grace
Yeah, yeah, make sure you have a good assessment. You know, don't let people say, Oh, well, that's it's inevitable because of your MS. Because it isn't. Because as we've discussed today, there are lots of treatments out there. You know, sometimes we are our best own detective, you know, we know how our body feels. And when something's wrong, you know, we are the most reliable person to assess that.
As far as sort of comorbidities, you know, bladder cancer, again, it's more common in people that smoke if you've got blood in your urine, that's something that I would be looking to refer you on urgently.
Helena
I think we're having a bit of struggles with connection. But that’s been really, really useful grace, thank you so much for helping us out with all the questions today!
If this was commercial podcast here is where there would be an advert, but as we're a charity, we don't do that. So instead, this is our time, an opportunity to tell you all about our fantastic resources for people with MS.
Nick
Sure, so our website is a great place to start. So that's MS trust org.uk. And on there, you're going to find loads of information, lots of different resources for people affected by MS. So, we do have a whole section on there, which is linked to bladder problems. And we also have a book which you can order for free, either in physical or as a digital download. That's called Managing your bladder. So, you can find these links in the show notes as well, we'll make sure we put them down there. And also, if you know once you're on the website, if you're not sure where to look for you just type in bladder, in the search bar there, you'll find lots of content there. And of course, if you are impacted by any other symptoms, or you want to find out more about treatments or you know, look at some stories from other people who are living with MS. You can find that all on our website too. So do head over there. It's again, it's MS. Trust or.uk.
Helena
I would just like to point out as I said, at the very end of my recording with grace, that we were having some huge problems with connection, I think she was struggling to hear what I said, and it was a little bit of a delay. So, some of it towards the end there was cutting out, but I really found it so interesting to talk to her and again really shows how much there is to do with bladder problems. I feel like there's so many people that just kind of think oh well, it's just the way of life you know, I'm getting older, or you know I have so I have MS and I need to just live with this. But clearly there is stuff to be done. So, I feel like it's so important to talk about this. So, I'm really pleased that we recorded this podcast.
Nick
Yeah, absolutely, and when she was talking about some of this, like the pelvic floor exercises and stuff like, full disclosure, I sort of had a go at some of those as well, when she was talking about that.
So, you know, I think having her insight was great. And actually, again, she went a long way to kind of saying that these are very common problems, you know, a lot of these things, you know, they're very common in MS. But also some of these symptoms can happen to other people who don't live with MS as well, something like you know, the frequent waking for example, and there are solutions out there, you know, that preventative measures, but there's also solutions as well, if you're experiencing those things,
Helena
I find it so interesting this with pelvic floor exercises, because as more as we talk to bladder experts, we've interviewed some other people as well. And everybody's doing and talking about the importance of doing this early on, like before you started having problems, because so many people if you have MS or not, you're going to end up having, you know, weaker muscles down there, and it's going to, you know, potentially lead to bladder problems. I have, apart from being pregnant, never been told to do pelvic floor exercises, it was never l a case of anybody teaching you things like that in school. And when I asked her, you know, ‘Are there exercises for men to be there?’ I’d never heard anything about that. Have you ever, as a man, been told to do those type of exercises?
Nick
No, I don't think so. I don't think so. But yeah, it's so important, isn't it?
Helena
Yes, really,. So, I feel quite passionate about this subject for like, a few reasons. And I think it's been like kind of said, you know, not talked about, it's been swept under the carpet for a bit. And I was diagnosed, well, I guess it will be 17 years this this year. And nobody spoke about bladder problems. They made it sound like it was something that would just happen in progressive MS. Or, or you know, very later on in life. But now, I think people will mention it, you know, to people who are newly diagnosed, I was 29 when I was newly diagnosed, I hadn't had any children.
So, you know, mentioning things like ‘do your pelvic floor exercises’ would be really good. Because you often when you're newly diagnosed, you'll come and you will say, so what should I do now? You know, I could think about starting medication and things. But what are the some of these things that you can do here-and-now, and doing pelvic floor exercises seems like a really reasonable thing to say. I understand that you don't want to scare people for the future, but it's also really, really important because you don't want to have bladder problems. Because as we have said, so many people struggle to live daily, like the day-to-day life, with getting out and about because of bladder problems.
And so, I just think, you know, it's so common, not just in the MS population, but in the, you know, the outside world and we just needed to talk about it more and some of these issues should be normalised.
It's like, you know, you get told to brush your teeth, because you don't want to have future problems with your teeth. Even if you don't have any holes in your teeth, you go and brush your teeth. That's the same idea with kind of doing your pelvic floor exercises. So little rant over there.
Nick
I love that, Helena. Good, good that you're passionate about this, that’s what we need, we need some normalization in the wider community about some of these issues. It’s just your health, isn't it? You know, there’s not a stigma around brushing your teeth is there?
Helena
Yeah, because I do feel like you know, one of these things I can say, only when I was pregnant, did they say something about it! And, I will put my hands up, I did not do my pelvic floor exercises very well. And now I have been told that I have weak pelvic floor muscles and I have to do something about it. And that is one of the reasons why I've been having sort of some bladder issues. I feel like I need a toilet more often than I should.
And one of the things that I've been doing, since talking to Grace, but is to try and train my bladder it sounds like that is it that film or book that ‘How train your dragon’ or something?
But I really try not to go to the toilet so much because I've been very much guilty of that kind of ‘just in case wee’ ,my mum would have said that ‘you have go to the toilet before you go’. But then you keep on going so every time if we were about to leave the house, I go to the toilet and then I have to wait around for my kids because kids always take a long time and I go to the toilet again. That might have just been 10 minutes later I don't really need to do that. And that is no good for the bladder. So, I’m now trying very hard to only sort of go to the toilet when I need to. But not to just go in case.
Nick
Yeah
I know, it's like when I was listening to Grace when she was saying about that bit about this sort of ‘just in case wee’, being a former teacher, I was always telling people, right, we're not going out to play, we all need to go to the toilet, and all that stuff. Right, you know, go to the toilet before the lesson and all that. So, I'm sure I've been guilty of, of sending people off to sort of train them up to do those. Those, ‘just in case wees’ as well. But I do that as well.
Like, now I'm trained to, you know, I’ve trained myself, right, before going out, I need to go, or, you know, getting in the car, I need to go to the toilet before I do that. So that's the change that I'm going to try and make as well. And also doing that, as she was saying, like seeing how long you can kind of wait when you get the urge before going to the toilet, because I go yeah, this is probably too much information for this podcast. But I tend to go a lot as well! So yeah, I was thinking that I drink lots of fluids as well throughout the day. So, I was wondering if, from listening to hours kind of was picking up that actually, I need to do more to, you know, to train myself up as well.
Helena
And I think it's really important to talk about drinking as well, because you do hear sometimes that people sort of don't drink enough just because they're worried about wetting themselves or having problems and obviously, that's going to cause other bad things happening if you're dehydrated. So, it's really important to take up the fluid. But you know we're talking about work before. And problems at work. That must have been quite tricky, when you were used to being a teacher because you're not allowed to go to the to the toilet when you need to either. Are you in the same way as you tell the kids to sort of not go during lessons, but if you're working as a teacher, you can't just nip up to the loo either. Can you?
Nick
Yeah, I'm off. See you later. You're in charge now! No, I never did that. If Ofsted are listening, I never did. But you know., I also was thinking that when I was a teacher, I've gotten quite good at you know, just sort of training yourself up to go straightaway. But since leaving the profession yeah, Its definitely. not something that I've been thinking about all the time. It's only when you listen to an expert.
isn't anything? Right? That's some good information. Maybe I should be training myself to prevent some of those, like, just in case times that you go to the toilet as well.
Helena
Yeah, because I think teachers are certainly people that I've heard from that been talking about it, especially that they've been struggling with their provisions. And, and people who work in on the shop, in shop floors and sitting at the table, you know, and they can't just stand up and go to the toilet, either. They have to sort of make sure to clear it with their manager and that shift is over. So, a lot of people that have those type of jobs will struggle with this. I mean, I'm, we're very lucky in working in the place where we're working, because I also can be open with saying, well, actually, sorry, we need to take a little break in this meeting, because I need to go to the toilet, and I just go ‘MS. Bladder’ and then leave. But you know, not everybody's got that. But I feel like we've talked about reasonable adjustments in the past at the workplace. And I feel like the toilet issues should definitely be one of them. So you know, again, important thing to talk to, maybe your HR department if that is an issue.
Nick
Yeah, absolutely. And, you know, feel free to pass on any of our information as well. From our websites to sort of support you in making some of those reasonable adjustments to with your employer. Absolutely. Yes. Good idea. Helena.
Helena
Now, as Grace also mentioned in the podcast, constipation can cause issues for your bladder as well. So, it feels kind of natural that the next podcast that we're going to do is going to be talking about bowel problems in MS. And we would love your input on this subject. We're looking to have some personal stories on the website about people living with bowel issues and how you deal with them. When we did a call out for bladder problems. We got loads of fantastic stories and you can come go to the website now and have a have a look at them. We'll link to some in the show notes. And we're feel like it'd be great if we could share some stories on our issues as well, because those can absolutely be anonymous. And so, if you would like to share your story, please drop us an email on comms at MS. Trust August UK.
Nick
Yeah. And in terms of getting in touch with us. If you do have any other questions about MS. You can get in contact with our helpline service. So, we're available from Monday to Friday apart from UK bank holidays, 9am to 5pm. Outside of those hours, you can leave us a message as well. And we'll get back to you as soon as we can. So, you can go ahead and call our free confidential helpline.
And that's 08000323839. And we will of course link to that in the show notes as well. If you'd rather not talk on the phone. You know, if you're one of those people who prefer to get in contact by email, get in contact with our helpline team via ask at MS trust.org.uk.
Helena
And, of course, we're also on social media. So, if you'd like to talk to us there, you can head over to your preferred platform. We are on Facebook, YouTube, X, TikTok, and Instagram. You can find this podcast on Spotify, Google and Apple podcast and also on Amazon music. And you can also find the podcast as a podcast on YouTube or as a video. So, if you like this podcast, we would love it if you drop us a comment about it or review. We'd love to hear what you think about it. And you know, is this a subject that you can relate to maybe share some comments about that as well?
And yeah, so like we mentioned the next one is going to be about bowel issues. So, if you have any questions you can maybe pop those in the comments as well. And now Nick, I'm going to have to run off to the toilet actually! A suitable way of ending this.
Very fitting ending
See you next time!
All right, bye!
