Men, MS, sex and sexuality: all you need to know

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Nicola: Today we're talking about sex and sexuality for men who have multiple sclerosis. It's a fantastic topic, a really important topic. One that we rarely, unfortunately, talk about openly. So, we're changing that. We've got some great information and we're going to address some of the common concerns and issues that men with MS may have.

And we've got some great suggestions for you. So, I'm really fortunate. I'm having a conversation with Darren Radley, a relationship counsellor and a sex therapist. He's been in private practice since 2006, spoken to many, many people. So, I met Darren recently at World MS Day in May and he's a member of the Australian Counselling Association and ASSERT, which is the Australian Society of Sex Educators, Researchers and Therapists.

He's got over 10, 000 hours of clinical experience working with individuals, couples, families, workplaces, groups. I think Darren has seen and heard many things. So, a very warm welcome to you, Darren.

Darren: Yeah, thank you, Nicola. Yeah, there's a lot of experience there, and I've heard many different things.

But look, thank you for inviting me on today. It's a, you know, great privilege and honor to be here today and to share some information that I hope will be of benefit to the listeners. Some of my research, anecdotal research that I've accumulated in my clinical experience, I'll pass on and as I said, hopefully that'll be of some benefit.

Nicola: Darren, can we start with just a brief introduction to your underpinning philosophy and your approach to sex and sexuality?

Darren: Yes, that's a good question Nicola when I saw that question, it made me actually think. It's a question that I haven't really been asked in a long time. But look, my underpinning philosophy and approach to sex and sexuality is primary one of consent.

So, what I mean is do no harm to oneself sexually or to others. So, important that, you know, there is consent at all times. Also, important that one develops a curiosity in one's own sexuality and sense of sexual self and, you know, a curiosity in other cultures and other sexual experiences out there in the greater world.

So that's sort of a basic underpinning philosophy, but, I mean, sex has always been a powerful driver. Since the inception of the human race and many things have, sex has had a big impact on politics, religion, education, to name just a few facets of society. So, yes, it's had a big impact throughout history, but also a very big impact on our family of origin core beliefs around sex, what we think about, how we develop that Attitude and Conceptions of Imperceptions of Sex.

So, my approach is to explore sexual difficulties with an individual or a couple, delving into some of those family of origin core beliefs, but also relational triggers or barriers medical or physical limitations and treatment, medications, mental health challenges. such as mild or extreme anxiety or depression or any other stresses in life such as workplace stress and so on.

So, this is what's called a multi disciplinary approach where you involve more than one health professional and develop a plan involving others who can assist in that approach to exploring the sexual difficulties. And I find that to be the most reliable and best outcome for my clients.

Nicola: So, we're going to look at the physical and emotional aspects to sex and sexuality.

So, if a sexual relationship is difficult with your partner due to relationship issues rather than MS complications, what brief advice would you provide to work on these issues?

Darren: Yeah, no, this is another good question, Nicola, because yes, you might just, you can't put the horse before the cart, so to speak.

So, if relationship issues are a barrier to a sexual relationship with your partner, then MS complications, I would recommend straight up couple counselling. And look, this is, obviously, couple counselling is recommended if you feel the issues in the relationship can be worked on, can be fixed, better managed, or the relationship's worth fighting for, if you feel that strongly.

Then set up some couple counselling and that's usually the reason for couple counselling is because a third person or an impartial person, a neutral person is best to go to. You might get some good advice from a friend or family member but remember they're always going to be biased. So, it's important to get that neutral opinion from someone you don't know who can see your blind spots.

And if you can't see someone face to face as a couple, online, couple counselling is quite effective. I've done a lot of that over COVID and it's been very effective. But obviously, don't wait around. Don't sit on this. You've tried to work it out on your own, I'm sure, or together and you're hitting brick walls and getting exasperated and feeling helpless.

So, book in that couple appointment straight up, straight away. Don't let any more time elapse and I can assure you whilst you might feel alone or scared or frightened of the future, the unknown, what could happen as a result of couple counselling. I assure you from my experience, it'll be worth it.

Nicola: Darren, when you said couple counselling, I felt like I could almost hear a collective groan from our listeners, as the men out there listening kind of went, oh no, not, not counselling. Why do, why do you think that men are so reluctant in that space?

Darren: Look, that's because, Nicola, that men struggle with identifying feelings straight up.

They struggle with even knowing what they're feeling. It's not because they don't have feelings. Research has shown that men equally have as many feelings as women. It's just as being conditioned not to show those feelings. So, the struggle for men is making themselves vulnerable in that space. That's what I've seen as one of the big barriers.

But once they get talking, and once they feel comfortable, you've got to feel comfortable with the practitioner. Once you do, then I usually find men are quite quick to open up and discover a little bit more.

Nicola: And it really does, once you get into that more aware and more vulnerable space, it really does help relationships, doesn't it?

And helps that intimacy, and as a spin off from that, helps people's sex life as well. So, I hope that collective groan that I thought I might have heard might have abated a little bit.

Darren: Yeah.

Nicola: Okay, so Darren, what are some of the common, more physical sexual difficulties a person with MS might encounter?

Darren: Well sexual concerns are very common for people with MS. 50 to 90 percent of men with MS have sexual concerns. Also, important to remember that The Australian Survey recently discovered that one in five men over the age of 40 have issues with erectile difficulty maintaining an erection.

That's men without MS. And one in ten men from that survey also were found to not able to get an erection at all. That's men without MS.

Nicola: It's really quite common, much more common than what the general media would have us believe, I think.

Darren: Correct. That's right. It's very common and it doesn't mean it's not treatable.

So, I mean, some of the sexual dysfunction can impact on the mental health and mental quality of life and even more than For example, the severity of the physical disability, but some of the common concerns and challenges for people living with MS are decreased or absent libido, fatigue, anxiety, self esteem and depression, bladder and bowel issues, spasticity and pain, ultra genital sensation, numbness, sensitivity, pain, changes in frequency, intensity of orgasms.

Getting an erection, maintaining an erection, ejaculation. So, look, there's a list there and being diagnosed often with MS at the peak of a person's life can alter their perception of their body and affect their desire and their relationships. I mean, it's often heard. Often said that I don't feel like myself anymore and why our relationship has changed or it's changing.

So there are changes in communication that happen as a result of the impact of MS and puts a strain on money, energy, resources, just to name a few.

Nicola: So, Darren, if we focus on that main concern for many men, which is erectile dysfunction, can you give us some more information about this and some options that might be available for men listening who are experiencing ED?

Darren: Yeah, okay, so look, to start with, I don't really like the term erectile or sexual dysfunction. Unfortunately, it's become a common medicalised label, which creates a sense of coldness or clinic aspect to it. I prefer to use with my clients the term erectile or sexual difficulties which has a more empowering notion behind it.

So, in other words, this is a current difficulty in your sexual life and we're going to find a way to manage it better rather than a dysfunction. The word dysfunction is heavily loaded. So, erectile difficulties or ED is essentially when a man is unable to get or keep an erection that allows sexual activity with penetration.

So, it's important to remember it's not a disease, but a symptom of some other problem, which is either physical or psychological or a mixture of both. So, as I said before, ED is very common for men and it's common for men as they age. One in five Australian men over the age of 40 have difficulties getting and maintaining an erection.

One in ten. are unable to get an erection at all. So, I also discovered that a recent U. S. study found that ED was the most frequent difficulty in men with MS. So, it's a worldwide challenge. So, it's sort of, I don't know if that helps normalize it, but it's common and it also is treatable.

So, with each decade of age, the chance of having erectile problems increases, unfortunately. And I've also read that, It's Mother Nature's way of saying to a man as he grows older, I will take away one part of your physical functioning, i. e. erections, so you are not acting out as a younger man, placing yourself at risk of a heart attack, thus reducing your longevity.

So, it's an interesting biological.

Nicola: Nature is cruel, isn't it?

Darren: Yes, it's Mother Nature's way of saying, look, I'm just going to take care of you, but it's a blunt instrument though. But so, for most men ED, you know, cannot be cured and but for other men, there's some, there is a reversible underlying cause that can be treated.

So, it's important to assess all men with ED and to see if there's a treatable cause. So usually there won't be one specific treatment that will lead to the improvement of erectile difficulties. However, there are treatments that allow erections to happen and can be used to allow sexual activity to take place.

And the three main types of treatments are non invasive treatments such as tablet medication, Viagra being the most well known. External devices such as a vacuum device or a pump. Penile injections. And for men who have had no success with the other options just mentioned, the more intense interventions such as a penile implant or surgery.

However, really important to note through all of this that counselling is integral to the treatment of ED. A very important part. Focusing on the psychosexual or the internal thoughts and the psychosocial the relational triggers.

Nicola: I'd imagine, you know, performance anxiety once you've experienced some erectile difficulty, you know, could become a real showstopper.

Darren: Yeah, exactly. And then that's what's called anticipatory anxiety Nicola. So, with performance anxiety, you've become the spectator. You're constantly rating your performance and you have a lot of anticipatory anxiety. You're anticipating, ah, gee, last time I couldn't get it up. Last time I lost it. Last time. So, it's reinforced anxiety from multiple previous occasions or even one significant previous event where you've been unable to get that erection or get it and then lose it. So yeah, performance anxiety is a big part of the picture.

Nicola: So, it sounds like there's quite a few physical interventions, medications, pumps, etc, but not forgetting that important emotional aspect as well.

Our mind, our mind is a powerful tool as well, isn't it? So, what, what medications are available for ED, Darren? You mentioned Viagra. Does a man have to Discuss this with his neurologist, and do you go to a urologist to get them? Are there interactions? Can you, can you talk a little bit more about the, the med side?

Darren: Yeah. Look, definitely. One needs a chat with a GP and a urologist, but there are four common medications used for the treatment of ED that, you know, some of the listeners may be aware of Viagra. Obviously the most common Cialis or Cialis is the other one. Levitra and Stendra. The other two. And there are other lesser known medications, ED medications, which reviews have found to be quite, you know, effective and quite useful.

But I want to point out that it's important if you, one ED medication doesn't work, that you try another. Because there are many out there. But obviously you need to consult with your GP or urologist is extensively on this, which I'll explain in a minute. But there is a lesson on medication called Edex ED medication that's quite useful for men who have had prostate cancer.

So that's one example. But as I said, just don't pick medications off the internet because that can be very dangerous. For example, Viagra, there's been known interactions between Viagra and heart medications for example. So, a man who's experienced a heart attack or a stroke event or a cardiovascular event within the last six months must consult with his GP before trying Viagra again because of the known interactions.

And I just want to point out that, you know, medications, ED medications, aren't, aren't this magic pill that you pop, and everything just magically fixes itself. For them to work and to be effective, you have to be aroused. You have to be interested. You have to be in the mood. You can't just pop a pill and then sit down and start watching the footy.

It doesn't work that way. So, the man has to sort of get into the mood. increase that desire. There may be exceptions to that, of course, but Viagra when it came into the market, it transformed male sexuality. And much like the pill for women, it created this sexual superpower, but for men, but that sexual superpower has no power if, as I said before, the relationship has barriers.

It's just not going to work. So, Viagra has a generic equivalent called Sildenafil. Sildenafil is much cheaper and generally takes about 30, 60 minutes to be effective and lasting up to several hours. However, the other medication, such as Cialis, Cialis is a more sophisticated, better medication than Viagra, and it can last in the male bloodstream for up to 36 hours, allowing more spontaneity with sex for the relationship.

But as I said, make sure you discuss all this with your GP or urologist, but also check your interactions with your MS medications as well, because in general, ED medications such as Viagra are well tolerated with MS medications. That's known. Tegretol, which is prescribed for some types of neuralgia or nerve pain, can occasionally cause ED.

That happens, so it's important That you discuss with your neurologist or your GP all the meds you are taking and the possible interactions and side effects. which may relate to sexual functioning.

Nicola: And I think Darren, for a lot of people listening, it might feel a bit daunting to start that conversation with their neurologist or urologist or GP they've known for a long time.

But I think if we can just reassure that they're absolutely not on their own, it is a very common issue and certainly something that health professional that they're talking to is either dealing with on a daily basis as a urologist or certainly very frequently as a neurologist or a GP. So, take the brave step and have the conversation because it might yield some really fantastic results.

So that's, that's great advice. And, you know, we, we focus on penetrative sex, but what other options are there to help have a satisfying sexual life? I'm sure there's lots of ways we can bring fun into the bedroom if people are having a variety of sexual difficulties.

Darren: Yeah. That's, that's another good question.

And one to think about because yeah, sex doesn't just amount to penetration and orgasm. There are two different types of sexual pleasure, which obviously get the most attention, especially, you know, in the media and movies and so on. But applying a unique MS perspective to this, I often talk about the concept of neuroplasticity when it comes to developing a more satisfying sexual life or experience or connection with your partner, where MS is a complication.

And some of the listeners out there may know about neuroplasticity, what it is, and basically, it's defined as allowing the neuron or nerve cells in the brain to compensate for injury and disease and to adjust their activities in response to new situations or changes in their environment. So, the brain essentially finds another way around the damage, the damage to the neural pathways due to MS, for example.

So, the loss of sexual functioning or inhibited sexual, sexual functioning that can occur, such as ED, an orgasmic response due to neural path damage due to MS. So, allowing the brain to find other ways to rewire this faulty sexual response, I believe can be encouraged in focused on by developing more attention to the erogenous zones of the body by applying sensual and erotic touch.

So, some of our listeners may know about the erogenous zones, and the erogenous zones are those parts of the body that excite sexual feelings. When touched or stimulated, this doesn't have to be just only the genital area or breasts that can be, which may be little or no responsive anyway due to MS, but other parts of the body such as the lips, the buttocks, the inner thighs, the neck, the ears and the area of the skin called the perineum between the anus and the penis and the vagina.

So, these erogenous zones can be simulated, as I said, by applying sensual and erotic massage that is slow and subtle, guided by the receiver. using your hand or toys or both and applying water based lubricant. This in effect may help and develop in rewiring the brain to find new paths to sexual pleasure and arousal that may assist in improved erections and orgasms, but if not, increase sexual pleasure.

and arousal that energizes your body that you may not have experienced before. Some other part of the body that develops a closer emotional and physical connection to your partner. One method of doing this is the tantra or tantric sex approach to exploring the erogenous zones. So, finding out a little bit more about tantra or tantric sex would be good advice to the listeners as well.

Nicola: And where, I think we've all heard of tantric sex but so many of us haven't got a clue what it actually means other than we all believe that Sting practices it from the police. So where would somebody go that's a reputable place to perhaps find out a bit more about tantric sex Darren?

Darren: Well probably a reputable experienced sex therapist would be a good place to start.

That's what I would suggest initially. Esther Perel, who I'll talk about later, has some great information on tantra and eroticism. Esther Perel is a world expert on relationships, sexuality, and eroticism. So, you could google her Esther Perel, but yeah, certainly starting with if you have access to a sex therapist or even a doctor who might, by chance, have some more information on Tantra and Tantric sex? Well, essentially the simple definition of it is a build-up, a slow build-up of sexual pleasure and arousal.

Nicola: Not rushing things.

Darren: Not rushing. That's, yeah, essentially the basics of it.

Nicola: And I think it's lovely that you remind us that there's so much more to our body than just our genitals that feels lovely and often gets really overlooked.

So, there's a lot more to explore.

Darren: Well, that's why, that's why I answered that question by focusing on the erogenous zones taking into MS and the neural pathway, yeah, considerations there.

Nicola: Yeah, beautiful. And for many of our younger, well, not necessarily younger, but for many of our listeners, Darren, they might be starting a new relationship.

And I'm wondering what advice you might give that would be a good way to start a conversation about their MS and sex with a new partner. How do you, how do you tackle that one?

Darren: Yeah, look, that's, that's a really good question. That's a hard one especially where, you know, you've got the subject of MS and sex.

I would probably suggest to start with that you start a few conversations about anything other than MS and sex. So initially, when you're starting out talking to someone, a new relationship or meeting someone, it's usually done online texting or phone calls even, to begin with. It's usually done online mostly, so what happens is, online, you, good place to start, to feel, get a, get a bit of a, a bit of a guide as to the conversation, how it's going with the person, if you're comfortable with them, before you're meeting face to face, It's important to find out if there's some connection worth pursuing as you're building up a conversation.

Talking about anything. It could be pets. It could be work. It could be anything, really, that you're trying to find similarities or commonalities with the person as you're talking sort of online or texting. So, what you're doing is trying to build up a connection, establish some sort of rapport, some sort of spark, and usually if that feels good. and you want to be able to build it up before jumping straight into a vulnerable, intimate conversation about sex, because trust in the other person is really important, that you feel like you've established some level of trust.

So, once you've done that, the online sort of introduction ritual, then usually people will try and meet up face to face in a public space such as a café. Face to face initially is going to be daunting or tricky, first up, because face to face, that's where it all comes down to more chemistry, am I having a connection physically, is there attractiveness going on here, but nonetheless, it's important that you meet up face to face, especially if you've developed already some sort of comfortable connection with the person you trust them to meet face to face, trust them enough anyway, in a public place.

And a face to face connection removes any potential mishaps and misconceptions that are always possible around texting and online. Especially when you're going to bring up a difficult subject like MS or sex. So, body language is really vital to the conversation so you can correctly read any facial cues of confusion, for example.

So, you could then start by talking about talking. You can let the person know that. It's difficult for you to talk about your problems and your conflicts. So, for example, you might say, you know, I've always found it awkward to find a way of bringing things up. Or, you know, I think other people have an easier time than me.

When it comes to talking about some things, so you can sort of allude to things that have happened in your sexual past that you've struggled with or attempted to resolve. And this approach allows the person you're talking to, to invite you to proceed further.

Nicola: Okay. Thanks, Darren. That's lovely. It's a nuanced area, isn't it, starting those conversations with new partners?

How do you suggest a man with MS handles his concerns regarding possible bladder and bowel incontinence and sex?

Darren: Yeah, look, that's a very sensitive subject. Once again, a very vulnerable subject. I would suggest first up that, you know, talking to the MS Continent Service can provide a continent assessment.

So just reaching out to MS Connect to organize that would be a good place to start. I've found online some great resources. One online resource, Connie Australia, can provide an excellent range of continence products or underwear that can be used with Tina Men's shields and tails for example. But just some general advice on approaching sex where incontinence is an issue.

Just first up just really make sure. That you were clean and fresh before sexual activity because knowing that you're clean and fresh can increase your confidence and increase your attractiveness. I know it sounds a little bit hard to say that, but it is nonetheless important to feel that way.

Secondly, make sure you empty your bladder or bowel before sex will change your continence or ostomy device. Also, I don't want, I wouldn't suggest that a person reduce how much they drink, but in total, but it may help to cut down on drinking a few hours before sex. Also, light some scented candles to create a nice atmosphere and to help mask any potential odours, you may obviously worry about leakages and that's pretty understandable during sexual activity.

However, as I said before, if you take the precautions of emptying your bladder or bowel and not drinking too much beforehand, it's highly unlikely that any leak will be serious. And, and look, if it does happen, a leakage, just remember that sexual activity involves types of bodily fluids. So, a small leak of urine is not going to cause any problem or even if it's noticed at all.

The bladder and bowel community online have lots of great resources on this subject as well.

Nicola: And I think when I've spoken to people as well with continence issues and sex, they've said just really simply, Darren, they put a towel down. They get too tired of all the laundry associated with changing their bed, and they just put a towel down.

And that can be as simple as that. And as you say, there's plenty of body fluids happening anyway, and it's also a very common problem. So please, for our listeners, don't feel alone, don't feel like it's, it's just you. And, as you mentioned, Darren, there's some great support from the Continent Service, so reach out and ask, and get empowered, I think is great.

Where, or who would you recommend, Darren, for our listeners to go to for more support and, and help?

Darren: with the continence issues you're talking about?

Nicola: I think just generally, really, where to go, whether it's continence medications, counselling.

Darren: Okay. Yep. Yeah. Look, just on that, on that subject, I would definitely, it's a hard one because a lot of people, you know, a lot of listeners probably have reached out.

And found themselves, you know, not feeling too comfortable with the person they're talking to or had a bad experience. But what I would generally recommend in the first instance is that listener's, you know, organise a long consult with their GP or GP they trust and hopefully is experienced with MS and sex.

I myself as a matter of due diligence, I always refer my male clients with any sexual difficulty to reach out to a urologist for a further assessment of bloods, physical functioning and assessment and medications. Of course, you know, the male client will need a referral from the GP to see a urologist, but a urologist is really important on, you know, sexual functioning for men with MS and not with MS obviously.

I should say before that the MS continence service, as I said before, can reach out for further assessment and for information. but I was going to say, I myself can provide face to face, online or phone counselling, relationship counselling, individual counselling, sex therapy.

You can search me up online, my name, and find my website, the EpiCentre. But as I said before, there's some great online resources. The ones I know that work, that I've confirmed do work are Esther Perel. So definitely look her up as a great resource for, and that might be a good place to start because some people will try and look up, do a bit of DIY work themselves and they might get some information that helps them with

resolving some of their issues online through other world experts before they'll even talk to someone.

Nicola: Yeah, and I think as you say Darren, really important that if you are going online you go into reputable places, so not just Dr Google, but actually check and go to some recognized reputable sources for your information, including our website ms.org.au.

And Darren, how do you keep your relationship on track as you navigate some of these sensitive areas with MS and sex?

Darren: Look, what, it's really important to keep your relationship on track. It's really important from all of my work over the many thousands of hours, really important to keep the dialogue or the channels of communication open.

I can't emphasize that enough because as soon as you shut down on dialogue, or shut down the channels of communication, then issues become unresolved. So really important, communication is the most effective tool in the toolbox for couples. That research has backed that up time and time again. And as I said, by harboring resentment towards your partner, drifting apart withdrawing from the relationship because you're not resolving issues, All of those events, all of those things, all of those dynamics that happen has been found to be one of the main causes of relationships splitting up because unresolved issues or a grudge or a hurt file just builds up, builds up over many years.

The couple look at it. This is too much. I don't have the energy for this. Too much water's passed under the bridge. I've lost my love, my respect for you. So, I can't emphasize enough again, that the best advice I can give here, distilled down into one short paragraph of information is, keep the lines of communication open.

Resolve things, nip them in the bud early, before they build up. Small things and big things. Once again, another evidence based online resource is the Gottman Institute. Like Esther Perel, it's evidence based, it's research based. They have many, many great resources on couple communication.

Nicola: And Darren, how do you spell that, what the Gottman Institute.

Darren: Yeah, it's, I think the website address is Gottman, G O T T M A N, Gottman.com, I think it is.

MS: Okay, beautiful. Thanks, Darren. Lots of fantastic information there for our listeners. So, to bring our podcast to a close, can I do that really naughty thing and ask you for your three top messages that you'd like our listeners to take away?

Darren: Yeah, look, for sure, for sure, Nicola. Look, number one is compassion and empathy for oneself, your partner, your family, and the world around you. It's called loving kindness from a Buddhism philosophy standpoint. Keep, as I said before, keep the lines and channels of communication open between you and your partner.

And from a mindfulness perspective, remember the power of now by paying attention to the present. A mindfulness little suggestion.

Nicola: Beautiful. They're powerful messages and thanks so much Darren. I hope the people listening have really got some great tips and a sense that they're not alone in this.

There's lots of options and support available to them.

Darren: Yeah, well look thanks so much Nicola for inviting me on. It's been, great to be able to share this information. I love working in this space and, yeah, I enjoy a chance to share what I have with your listeners. And I hope just some information today, even if it's a small piece of information, can improve someone's quality of life and it can be the catalyst for, you know, further personal and relationship growth.

Nicola: So, we're really encouraging the men out there listening to reach out and get some support. The benefits are worth the initial reluctance, I think. So, thanks everyone for joining us today. Thanks to our listeners. And just a Gentle reminder, you can reach out to our nurse advisors, to our continent service, our social workers.

You can call MS Connect, as Darren mentioned, and the number for that is 1 800 042 138. And if you found the podcast useful, we'd love you to subscribe to our series. We'd love to hear from you any time about topics or guests. You can email us at education at ms.org.au. Thanks for your company and bye for now.