S8E24 : Taboo Symptoms of MS: Bladder, Bowels, and Sexuality with Ciara O’Meara

Ciara O’Meara (00:00)

Physicality, intimacy, touch, that all plays a role as well. And it’s an area that’s really, I think it’s neglected when it comes to MS care. And I was at a conference recently and they said that over 70% of neurologists don’t feel comfortable approaching sexual health and sexuality with their patients. So if they’re not confident in it, it makes it very difficult for a patient to be confident in it. And it’s something that’s so important.

 

Overcoming MS (01:08)

Welcome to the latest edition of the Living Well with MS podcast. Joining me on this edition is Ciara O’Meara. Ciara is an assistant professor in general nursing at the University of Galway in Ireland. She has a keen interest in multiple sclerosis research, especially in the areas of bladder, bowel and sexuality, a trio of MS related issues rarely discussed. Ciara is also very interested in patient engagement in research, patient empowerment for education and patient advocacy.

 

She’s lived with MS herself for the last fifteen years and brings a unique perspective to the table that of both a patient and of a healthcare professional. So welcome to the podcast, Ciara

 

Ciara O’Meara (01:46)

Thanks, Geoff I’m delighted to be asked and thanks very much for having me.

 

Overcoming MS (01:50)

So to start off with, we’ll always start with this question. Could you introduce yourself, your work and your own MS journey?

 

Ciara O’Meara (01:56)

Yeah, so my name is Ciara, as you said, and I am a general nurse and I’ve recently got into academia and research in the last four or five years. That’s really where I always wanted to go. And I suppose living with MS myself, I’ve always had I suppose a vested interest in research and in improvements when it comes to MS care. And I suppose that’s where I’ve started and want to continue my research journey is in the area of multiple sclerosis. like you’ve mentioned, I’ve been diagnosed coming now 16 years this June living with MS. So I was quite young, 22 when I was diagnosed, which is the usual trajectory, especially for women and at that age. And I suppose I’ve lived with it, I’ve learned a lot about it, and I’ve I’m very privileged, might be an unusual word, but privileged to be in a position that, you know, coming to this as both a patient and as a healthcare professional to be able to see both sides of the journey with MS, but also looking at those opportunities where, you know, those two sides need to come together and work together to improve care for people living with MS.

 

Overcoming MS (03:06)

So as someone living with MS but also as a healthcare professional, how do you manage to balance your professional life with your own well being?

 

Ciara O’Meara (03:15)

Yeah, and I’m not going to say, Geoff, I’m by any means an expert in this. And it’s what will I say, do as I say, not as I do. Isn’t that the that the saying of people? but it’s something I’m certainly working on. And as I get older, I’m getting better at saying no to things. So knowing my boundaries and my workload of you know, what am I able to do? What have I the capacity and the the mental load and cognition to be able to do at that point in time and being able to say no. It’s not always easy and you take on extra things and you learn from that. But but really saying no, you know, taking breaks and taking your full lunch break, especially when you’re working and I work full time. I’m very fortunate that I have flexibility in my job. So you know there is scope for me where the days that I’m not lecturing that I can work from home to prepare materials and that really has been a huge help for me. So I do have that flexibility. But again it’s being disciplined with myself of taking my breaks, you know, finishing at five o’clock and having those things in the evening, that’s for me. So I enjoy going to the gym, taking the dogs for a walk, reading my book, whatever it might be, but that I’m factoring in that time as well. So it’s really trying to find that balance, that work-life balance. And like everybody, it’s difficult. And I’m still trying to find what that what that optimal balance is as well.

 

Overcoming MS (04:43)

So, the thing we I think we want to talk about mostly here is that your research interest is in some of the less visible but quality of life reducing symptoms of MS. So namely bladder issues, bowel issues and sexual issues. So if we could talk about each of those, so first up so what are the common bladder symptoms for people with MS?

 

Ciara O’Meara (05:06)

Yeah, so I think as well, Geoff, just to give a bit of an overview, I suppose the reason I’m interested in these is as you had mentioned, they’re really unspoken about. They’re those invisible symptoms that are not really highlighted or addressed as frequently as they should be. Bladder and bowel to an extent, But sexuality is something that’s really unspoken about. and it that’s really, I suppose, where my interest was, and as well as a patient, because you say, okay, what are the areas that I’ve identified as a patient that are not being addressed in a consult? And when it comes to bladder and bowel, Noreen Barker, she’s an MS consultant in the UK, I’m sure you know of her and have come across her. And Noreen did an alert study a couple of years ago, and it really identified the importance of needing to break what they called break the loo taboo so that we become more confident in talking about issues with bladder and bowel and actually bladder and bowel reasons they’re kind of the main reason why people with MS are admitted to the emergency department. So you know it’s really important that they are addressed and looked at. And I suppose when it comes to bladder, some of the most common symptoms, so we look at frequency, that feeling of having to go to the bathroom really often that maybe just after going to the bathroom, passing urine, and that feeling of I need to go again. So not emptying the bladder fully. Urgency is another thing as well. So that people may feel, I have to go, but I have to go right now. I don’t have that capacity to hold it. And that then can lead to episodes of urinary incontinence where the muscle in the bladder is just not able to hold the urine and someone will experience leakage or incontinence. And that’s quite devastating for somebody living with MS.

Urinary, so bladder issues, if people are not aware of them and they’re not well managed, it can lead then to infection, a urinary tract infection, then somebody can get very sick and end up in hospital, and it’s just a vicious cycle from there. Nocturnia is another common symptom, so where somebody will frequently get up during the night to use the bathroom. And one of the other common symptoms when it comes to bladder is this feeling of hesitancy, so that feeling that you have to go but not able to go, or maybe a very small flow or a small dribble and just that feeling as well of of not fully entering the bladder. So there come some of the kind of most common signs and symptoms that somebody who has bladder issues living with MS may experience.

 

Overcoming MS (07:37)

And so what would be your tips for people who have urgency or incontinence issues?

 

Ciara O’Meara (07:44)

So one of the big things is when it comes to bladder and bowel, and we we’ll speak about bowel after, Geoff, but don’t always assume that everything is MS related because there may be something else underlying that gets neglected. And I meet a lot of people that say, you know, I’ve bladder urgency. That’s part of being female. And after having kids, that’s just part of it, or it’s part of MS. And yes, it may be.

But it also may not be. There may be something else going on. So I’d always say to people, you know, if it’s something, definitely raise it with your consultant, with your MS nurse specialist. But if it’s something that’s still not being able to be managed with medications or something that you’re still concerned about, definitely go to your GP and seek further advice. The other thing as well with bladder issues.

And I meet a lot of people that are afraid to drink water. And what happens? They end up dehydrated and then they get unwell. So it’s trying to find that balance of keeping hydrated and knowing your plan for the day. So I’m Irish, I love my cups of tea. Barry’s tea, it’s an Irish stereotype. Absolutely love it. But if I know that I’m going travelling, Geoff, I know that right, Ciara, only have one cup now in the morning because I’m going in the car and I’m going along a road that maybe there isn’t a place to stop for a bathroom. and knowing as well your roots, I know every main road in Ireland, I can tell you where the bathroom stops are because I know I’m going to need them on my journey. So it’s planning ahead. And as well, I’d say to people, you know, don’t be afraid to have supports like pads or underwear liners in the event that somebody got cut short or they had a little bit of a leakage. It’s not putting them in an embarrassing situation. They have that little support there for them as well.

 

Overcoming MS (09:14)

And on that actually th I on planning, there are some apps that show you where there’s public toilets and they work everywhere in the world. So we’re going on holiday and I think it’s just users just post where the toilets are and then you can find where public toilets are anywhere in the world. Because that’s the problem. If you’re going on holiday or something, yeah, your normal plans youdon’t know, but you can find those things out.

 

Ciara O’Meara (09:45)

Yes, yes.

 

Overcoming MS (10:03)

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Overcoming MS (10:25)

So yeah, you mentioned bowels. So w so what what about bowels? What are the the common MS symptoms for bowels?

 

Ciara O’Meara (10:31)

Yeah, so similar to the bladder then Geoff, like when it looks at bowel, people can experience, you know, that urgency of I need to go and I need to go now. And then if not being able to make the bathroom in time, people may experience bowel incontinence, which may happen as well.

Constipation is very common for people with MS and where there is a difficulty in passing stool or they’re not regularly in their bowel habits and that then leads to bloating and stomach extension and feeling uncomfortable. So constipation is very common and people can have a mix of both. So patterns can change where maybe somebody has constipation and then maybe might experience loose stool or diarrhea the next week or the week after. So there can be a mix of both.

Urgency, like I said, as well, and bloating. And often with bowel habits, people can experience sensory sensations as well. So, you know, needing to go to the bathroom, that urgency might also bring on sensory feelings in the legs or the lower limbs, just because there’s that, I suppose, pressure on the nerves and pressure within the bowel that can contribute to people experiencing those sensory symptoms.

 

Overcoming MS (11:45)

And how would you go about managing those symptoms?

 

Ciara O’Meara (11:48)

Yeah, so again with bowel and it’s finding the balance. So staying well hydrated is really important. A diet high in fiber, and this is where you have to find the balance. A diet extremely high in fiber will result in constipation. So you want to find that balance. So for example, like your porridges, Wheatabix, whole grain, nuts, green leafy vegetables, those high fibres really help with supporting bowel habits, staying hydrated. the other thing as well is you know people may need to use laxatives but using them appropriately and as per the guidelines on the bottle. I meet people and they will say, I took laxatives and they didn’t work, so I took more of them and then I ended up with loose stool. So it’s, you know, it’s using them accordingly the way they should be. Having those supports as well, like with the bladder, those little liners or supportive pads, that if somebody experienced incontinence, they just they have that little support mechanism with them as well. And another thing that’s really important, Geoff, and sometimes we don’t think of the basics when it comes to it, but positioning on the toilet so that we have the correct positioning. People end up, you know, sitting in the bathroom using their phone, they’re bent over. That’s not correct positioning to really empty your bowel. So people want to be, you know, spine upright, abdomen out, and their knees raised. So if they need a little stool or a little step to help raise their knees, that all helps with bowel patterns as well.

 

Overcoming MS (13:29)

And so on to the sex related symptoms. So what are the common sex and I guess it’s going to be different there they’ll be sort of so for so let’s say for start for women, what are the common sex related symptoms related to MS?

 

Ciara O’Meara (13:36)

Yeah, so sexuality is big, Geoff, and I suppose it’s important to kind of highlight at the beginning that it’s not just about the act of sex. It’s everything else that comes into it. Physicality, intimacy, touch, that all plays a role as well. And it’s an area that’s really

 

I think it’s neglected when it comes to MS care. And I was at a conference recently and they said that over 70% of neurologists don’t feel comfortable approaching sexual health and sexuality with their patients. So if they’re not confident in it, it makes it very difficult for a patient to be confident in it. And it’s something that’s so important.

So when it comes to women, some of the common things are so that lack of sensation, loss of libido, not wanting to engage in sex or sexual activities. There can be difficulties in orgasm and reaching orgasm with females, as well as males as well. And you know, we’ll look at the males then as well. So, like I said, that lack of libido, loss of lubrication, difficulties with erections and ejaculation, they can all contribute and be factored into MS and the position of lesions where they are can impact on those areas of sexuality for people.

Overcoming MS (14:58)

And so what what is the research about managing sexual dysfunction with MS then?

Ciara O’Meara (15:05)

So one of the things that’s that’s really important is that everybody will be different. And we know that with MS, MS doesn’t affect people the same way. And when it comes to sexual dysfunction, it will impact on people differently. But I think what’s really, really important and what guidelines have looked at is there’s different dimensions to it. So if we look at kind of that primary sexual dysfunction, are the things that are directly related to MS and the positioning of lesions and issues with the nervous system so that lack of libido, loss of sensation, difficulties with orgasm ejaculation because of the position of the lesion. So that’s primary. But then we have to factor in the secondary issues. So sexuality, intimacy, that’s going to be impacted by bladder and bowel issues, pain, spasm, fatigue. So it’s not just supporting the sexual issues alone, but looking at the secondary things that may impact it. And then there’s also that that kind of third level of looking at issues with confidence, body image, you know, worrying about your partner.

That all factors in as well. So it’s not just the sexual symptoms, but all the other elements that underpin it.

 

Overcoming MS (16:24)

And so what would your tips be if if people have got sexual symptoms and people with MS and their and the partners of people with MS? What’s the best thing to do?

 

Ciara O’Meara (16:32)

Yeah. So I think what’s really, really important, Geoff, is and I know it’s easier said than done, it’s not to be embarrassed about it. Sexuality is part of the holistic being of everybody, and it’s as important as mobility and your physical health and your mental health, they’re going to be impacted if your sexual health is not supported. So it’s being confident to speak to your healthcare professional about it. They may not bring it up.

But as patients, we need to advocate for ourselves. And if they’re not willing to bring it up, then we can have that confidence or hold that space to bring it up. Communication with partner is really important. So telling your partner, you know, I’m too tired today, or I’ve had a rough day, or my energy levels are low. And what I say to people as well, and what the research will say is it’s not that spontaneity should go out of it, but sex may take a little bit more planning. So if you and your partner communicate and say, you know what, the evenings won’t work for me, but maybe the weekends, the morning I’ve more energy, let’s schedule some alone time for ourselves in the morning. So it just takes that little bit more planning. And the reason you know, research will say as well, it’s not just focusing on the act of sexual intercourse, but the other things that couples can do. So that intimacy, that physicality, that use of sexual toys and you know, other devices and aids that might help the couple. So I think it’s really that confidence to speak about it, that communication with your healthcare professionals, but the communication with partners as well is really important.

 

Overcoming MS (18:09)

And finally, ⁓ is there anything else that you’d like to share to our audience?

 

Ciara O’Meara (18:14)

Yeah, so I think Geoff, when we’re looking at, I suppose, the bladder, bowel, and sexuality, you know, be your own advocate and bring it up. If there’s areas that you’re concerned about, speak about it. And like I’d mentioned earlier, don’t always presume it’s MS related. If there’s changes in in bladder and bowel habits go and see your GP. medications that you’re on as well, you know, be mindful of what maybe are the side effects of them. So maybe it’s a side effect of a medication that’s causing constipation. So can we look at those medications? Communication, like I said, is key to speak to each other. And you know, have that confidence, especially when it comes to sexual health and bladder and bowel. And I always laugh because as a nurse, I would never have any problem asking somebody about their bladder and their bowel habits. But sexuality before I would have been a little bit more reserved about. Whereas now, again, I’ve educated myself and I become more confident in it. And that’s how other patients can do it is, you know, be be confident in what their needs are and not be afraid to approach it with their healthcare professional and more importantly with their partner.

 

Overcoming MS (19:25)

Okay. And with that, thank you very much for joining us, Ciara O’Meara.

 

Ciara O’Meara (19:28)

No  problem,