Sex, sexuality and multiple sclerosis

Nicola: Welcome to the MS Education podcast series. Thank you for joining me. I'm Nicola Graham and in each episode, we're going to be joined by an expert to discuss strategies for living well with MS.

Today we're talking about sexuality and multiple sclerosis. It's a topic rarely talked about professionally. Our sex education is often really limited and today we've got a wonderful opportunity to get a much better understanding of sex and sexuality and how we can all improve our sex lives. So, you can imagine I've been really looking forward to this podcast.

It's a great topic and I'm really fortunate today to be talking to Dr Margaret Redelman. Margaret's a GP. She has an Order of Australia, a Master's in Psychotherapy and trained in sexuality in the USA. Margaret works as a sex therapist and a relationship therapist in private practice in Sydney. And she's published papers on the topic and held numerous executive roles in the sexual health field.

Too many to mention, I think. So very warm welcome, Margaret.

Margaret: Thank you very much, Nicola, and welcome to all the people who are going to listen to us today.

Nicola: Great. So, can I start with, plunging straight in really, a brief introduction to your underpinning philosophy and approach to sexuality, Margaret?

Margaret: So very interestingly for a sex therapist, I don't think that sex, as defined commonly as intercourse, is the most important thing in life.

However, I do think without sexuality, we have a much poorer quality of life. So sexuality for me is the underpinning for well being. And what I mean by that is the way we feel about ourselves as a person, often as a woman, as a man, it's how we relate to other people, how we feel inside our own skin, and the pleasure that our own senses give us, which culminate in that feeling of sexuality, that sexual arousal, that buzz we get of feeling inside our skin and connected with ourselves.

And that's what I think is critically important, and often why we seek relationships. It's that skin to skin contact that makes us feel like valued human beings.

Nicola: Margaret, I already feel like the pressure has been taken off me.

Margaret: Good.

Nicola: Yeah, that's a beautiful way of describing sexuality. So, before we get too MS specific, do you mind outlining some general information about female and male sexuality?

What influences libido or sexual interest for both males and females? And some guidelines around what on earth is normal?

Margaret: Okay. Well, normal is a really difficult word. The way I think about it is that all parameters in life fall on a bell curve. And some of us are born without much interest or ability in a certain area, and some of us have a lot.

So some of us will want to have sex three times a day, and for some of us, once a year is enough, thank you very much, I'm not interested. And we are, in fact, all normal, so it's very, very individual and I don't like to think of a sexual parameter as normal. When people say to me, how often should I be masturbating, for instance, I say well how often would make you happy?

Because it really doesn't matter that John next door does it more or less. That's not going to increase your own well being. It's what do you need as an individual. And very much when I see people, I don't like to talk about statistics or averages. I like to inquire what the person wants, what they think would be normal for them, and what would make them happy.

Nicola: That's such a lovely approach, Margaret. I love that.

Margaret: It's very interesting, because I grew up in the 70s when the pill came on the market, and suddenly the catch cry was, well, women can have sex like men now because we're protected from pregnancy, and it was pretty much a free for all. But my personal feeling is that most men and most women do work differently, about sexuality. So men have about 20 up to 30 times as much testosterone as the average woman has. And what testosterone does is it gives you that spontaneous sexual interest and arousal, that continuity and frequency that we laugh about with young men. Now, women can have a very active sexual interest, but it's usually not as pervasive as male sexual interest, so that we, well, I'm going to use generalization we generalize that men are initiatory, and women are more receptive. But within that, if you think about Marbell curves, there will be women who are very initiatory and who also would like to have sex three times a day and there are men who will be more receptive.

Nicola: So it's men take more initiative and initiate generally, sex more often, and women are more receptive.

Margaret: That's right. So, with boys, usually the sexual interest starts younger, boys will start masturbating younger. The penis and the scrotum, the genitals are external, so boys will have that immediate contact and pleasurable sensations. Whereas for girls, it's a little bit slower to develop and a little bit quieter.

And a lot of women, even to this day, Don't know what the genitals look like because you kind of have to make an active effort to go and look and explore So for instance if a young man comes in and says that he doesn't know what his genitals look like and or he doesn't masturbate you know, I would see that as a red flag.

If a young woman or teenager comes in and says, I don't know what my genitals look like, I don't know where my clitoris is, for instance, and I don't masturbate, I'll say, hmm, okay, let's talk about it, so that I do have different perspectives on that. But given the amount of talk, I won't say good information because I don't think that the media presents good information, but given the amount of talk about sexuality, most teenagers these days will have some knowledge of their genitals girls often do masturbate and masturbate to orgasm, so that young people will have more self knowledge about sexuality than perhaps previous generations had.

Nicola: For some generations, that wouldn't take much more knowledge, would it Margaret, because there wasn't a lot of information around?

Margaret: No, no, but that doesn't necessarily mean that people have better sex now than they did before. One of the things that technology has given us is a very active visual pornography culture.

So we're finding that young boys, for instance, will often access pornography from the age of eight or nine. Now pornography is not good sex education. Pornography is adult theatre. And the way that women are portrayed having sex is not the way that the average woman enjoys regular sex life. So, boys often get educated and attached to what we call a sexual script, which is not very conducive to good long term sexuality in a heterosexual relationship.

So we're given a lot of exposure to sexuality. But it's not necessarily good exposure. If you look at the reality programs that a lot of 20s and 30 year olds are really enjoying watching, that's really not good relationship training or a good attitude towards ongoing sexuality. So it's kind of a little bit mixed in today's world that we're getting a lot of this exposure.

But a lot of this exposure is not very conducive to good relationship sexuality or good sexual confidence. So, men and women are different. Men learn their script a lot younger, and their script can be a lot narrower. Whereas women tend to have a more diffuse sexuality that's often more dependent on their emotional context of what's happening for them.

So it's whether they like the partner, whether he's an appropriate partner or she, whether they feel secure at work, whether they feel secure in the room. For instance, people young people who share accommodation often tell me that they've got an ear out for a flatmate walking past the door and that can be quite inhibitory to becoming aroused and enjoying your sexuality, whereas men can hunker down into the sexual experience a lot more easily as a generalization.

Nicola: So women are more distractible, we're more sensitive to our environment by the sounds of it and the worries and concerns of daily life.

Margaret: That's right. And also about confidence about ourselves. So in this beauty culture that we have. If you feel that your breasts are too small, too large, tummy's a bit too soft after the birth of a baby, all of these kind of things, you know, even to the extreme of my labia's too short or too long or vagina's too lax, all of these kind of messages that we're getting through the media these days, those kind of things really affect the confidence and the ability to engage, really lose yourself in sexual experience.

Which of course limits arousal, it can limit lubrication so that intercourse becomes painful and of course it inhibits you reaching orgasms.

Nicola: And that leads well onto obviously when a person has MS and the effect of having a chronic and unpredictable health condition. Can you talk a little bit more then about that, Margaret, about when you have got a specific health condition, how MS in particular might affect your sexuality and sexual relationships?

Margaret: When we think about it, the biggest sex organ is the brain. It's our beliefs and how we put it together. So, with a chronic, painful, or disabled condition, it's how it affects your mind will be a big prognostic factor in how you enjoy your sexuality. So, worry, stress, depression, anxiety. All of those things are negative, big negative factors for sexuality.

Worrying about the future of what's going to happen to you. Worrying about your children or being able to have children. All of these things affect the main brain's ability for arousal. you're losing yourself in that sexual experience. And then, of course, there are the, the medical, the physiological things that happen with the effects on your nerves, how it affects muscles, and that affects your sexual response.

So, it's very much divided into the mental, the psychological and the social factors that the condition affects. So with MS, I think there can be the personal things, so that you worry about your, kind of existential worry about what's going to happen to me, what's going to happen to my life.

Will I be able to maintain my job? Will I get a relationship? Will I be able to manage a pregnancy and look after my children? All of those kind of fears and anxieties affect sexuality, and then of course those physical effects of the disease itself, which are specific for the MS. And I think the most important thing about MS is that it's not a straight progression, so it has a lot of anxiety in it.

So there are generalizations about the sexual effects that MS causes. But I much prefer to look at it a different way. So when you have MS, it's not like you're going to have sexual problems that nobody else has. So I think it's much more important to see yourself as an individual. This is my family of origin, what the kind of philosophies about sex that I grew up with.

These are my sexual experiences, where I learned my sexual script, which is what I do and what I like doing. This is my body, and this is a starting point for my sexuality, and now I have a medical condition called MS. How is that interacting with all of those other things? So, I think it's very important to treat yourself as an individual, and each one of us is a unique individual, and the conditions that people with MS will have sexually are also hit by other people who don't have MS.

So they're not specifically unique. And to treat yourself as an individual, and when you are trying to work to reverse those problems, to see yourself as that individual and focus on improvements that you can make from that starting point.

Nicola: Thinking about improvements that we can make from that starting point because we often sort of think it's some sex is something that we should just know how to do and that we don't to learn about it.

So I'm really interested to have a look at how can we enjoy a more satisfying and more rewarding sexual life? What are your great tips there, Margaret?

Margaret: It always makes me laugh when people come in and what they say to me is, I want my sex life to be natural and spontaneous. And I think, oh my gosh, what do you mean by natural?

In the sense that as mammals we all have a sexual instinct which is about procreating. The sex that most of us have 99. 99 percent of the time is not natural sex, because nature doesn't care about recreation. So really as people, we are talking about how to make recreational sexuality better for ourselves.

There was some wonderful research done in the, I think the seventies where they took baby monkeys away from the peer group, bred them in isolation, and then as teenagers put them back into the peer group. And guess what? They found? The monkeys did want to have sex. The instinct was there, but they couldn't do it right.

Say, mounted monkeys back to front, monkeys that weren't on heat, weren't the opposite gender. So, the instinct was there, but the behaviour was not. So, in human beings, we are the mammals that expect the best quality sex life. I think. I don't think dogs, for instance, worry about their penis is long enough or strong enough or they're attractive enough.

But we do as human beings. So we want the best quality of recreational sex life. But we actually give our teenagers and children the least education. Every other mammal in the world learns how to be sexual through watching adults engage in sexual behavior. Human beings are the only ones who are private and shy and have rules around it, except for pornography, which is, as I've said, is poor sex education, and yet we expect this wonderful natural sexuality.

So that always makes me laugh. And then when people say, I want it to be spontaneous, in the sense that I don't have to plan for it or work for it, which I think is very pertinent when you have MS. I want you to be spontaneous and I think, what do you mean that you're walking down the street you see someone attractive and you want to jump their bones?

What is spontaneous sex? So I talk to people about the fact that you have a good sex life when you first met somebody. And they say, yes, it was great. You know, we were at it like rabbits and so on. And I said, well, did you do anything? No, it was just all natural. I said, so you didn't ring each other on the phone and talk for hours about personal, intimate things, showing interest.

You didn't hold hands when you walked around. You didn't do nice social activities, not distracted by other people or events or needs that you had to meet. You went to bed and you took your mobile phone with you and what was this? Yeah, what did you do? And people have a giggle because really They did a lot of work to have this spontaneous sex and now, you know, you put out the garbage, you argue about who has to do the dishes, it's eleven o'clock at night, the kids lunches have to be made, you hop into bed and somehow you don't feel like you drop into this fantastic spontaneous sex.

So planning is a very important aspect of good ongoing sexuality in a committed ongoing relationship. You have to plan to have good sex, and that's something we don't teach our children and teenagers, that when you're in a committed relationship and life is going on, and life is not just MS, life is paying the mortgage and looking after children, looking after your parents.

All of these kind of things, work money issues, you have to actually elbow out time, prioritise time for being sexual, for creating a context, a space, in which you give your partner mental and physical attention. And you focus on them. And it can't be with your laptop on your knees while you're chatting to them in bed.

So, it's being conscious of the fact that if you want to have good sex, you do have to work for it. And if you have MS, then it might have to be that you work when you're not too tired, that the temperature in the room is good, that you might have some cushions and pillows, you might have some toys you may take turns in bringing each other to orgasm.

So it's actually, we have to talk about it, we have to plan it, and we have to prioritize it. And it can be very, very good sex. It may not be the Hollywood movie type of exotic type sex, but it can be very, very good eight, nine out of ten sex and in a long term relationship that's very satisfying. Now the other thing I often say to people is you don't have to have fantastic sex all the time.

So on a scale of 1 to 10, if 5 or 6 is pretty good, then you try to aim for a 5 or 6 out of 10. Most of the time and then I think each couple needs to concentrate on having what I call a blimp 6 So would it be an 8 or 9 or a 10 out of 10? Occasionally and knowing that the two of you are interested in creating these opportunities will sustain you in everyday life.

So, you have what I call bread and butter sex and then you have your cherry strudel sex.

Nicola: That sounds lovely and it, that sounds like, that sounds almost workable. I'm very interested, do men Margaret, need the mental and physical attention and preparation as much as women?

Margaret: Once again, these are generalizations.

The example I give that often young men are able to work sexually in the middle of George Street with a with a policeman coming. You know, but I say that by the time men are in their late 20s, 30s and so on, that changes. So I think as men mature, they also need better conditions for sexuality. Often when there are problems in a couple's sex life, the initial response for men is to say, I want quantity, even if it's poor quality.

But increasingly I find that as that continues, In a mature man, that's not good enough anymore, and that man will start developing sexual difficulties such as problems getting erections, you know, either ejaculating too quickly or not being able to ejaculate, or losing, lowered libido, losing interest. So, as men mature, they also want better quality of sex, because We can all masturbate to orgasm.

It's not about having an orgasm. For most people, making love is having that emotional connection that someone is actually saying to you, I think you're valid. I think you're important. I love you and I respect you. You know, to be held. That lovingly is, I think, often much more important than that orgasm, which we can all give ourselves.

So, masturbation is wonderful for having orgasms, but it doesn't kiss and cuddle you. And it's the kissing and cuddling that gives mental well being.

Nicola: Okay, well that's really reassuring, I'm sure, for a lot of our listeners to hear, because for people who have MS, particularly for women, orgasm can become more difficult and the sensation and the some numbness and the intensity of orgasms can be an issue.

So allowing yourself to remind yourself that being held and being loving and that skin to skin contact and loving your body are really important. However, I have to ask because I know our listeners will want to hear. Is there anything that can be done to help orgasms and with intensity? Is there any training that can be done for women and or men?

I feel like I'm flying in the face of what you've said which is about sexuality, Margaret, but I feel like I have to ask that specific question because I know our listeners will be interested.

Margaret: Well, even though I said that intercourse isn't the be all and end all, I don't think they're bad things to do or to experience so, I would always try to help people to get the best of what is possible for them. And in terms of improving orgasmic capacity, then pelvic floor exercises are a must for both men and women. Our orgasms, for women it's nearly all that orgasmic potential is the pelvic floor, and for men it's a significant component.

So, because we walk upright, our pelvic floors actually get weaker, they don't get exercised very much, and the capacity for tension, which is required to reach orgasm, decreases as we get older. So, if you exercise your pelvic floor so you have strong muscles, your potential and your subjective experience of the orgasm will be much better.

I always tell my patients that they should be doing 120 pelvic floor contractions every day, composed of five lots of 20 quick contractions over the day and 20 slow contractions, which is a slow diaphragmatic breath in to the count of four as you pull your pelvic floor tight. You hold your pelvic floor and you hold your breath for the count of four and then you slowly Release your pelvic floor and release your breath, each 20 of those, so it's sound 20.

So, for people who are driving cars, I tell them to do pelvic floor exercises at every red light they come to. For people who catch bus or trains, every bus or train stop. If you tend to watch TV, a regular program every day, then every commercial break, pelvic floor exercises are free, are painless, nobody can see you doing them, fantastic payoff in terms of better orgasms and better urinary continence, so if you have urinary incontinence as a woman, it's very helpful, but we forget to do them.

So, women traditionally forget to do them as soon as they leave the maternity ward.

Nicola: As you were talking, Margaret, I was thinking, I have a really long commute to work, so this could be really great news for me.

Margaret: Well, I have a little game that I play with myself. My office is on the seventh floor. So I get into the lift, I tense my pelvic floor, and I have to hold it until I get off at my floor.

So it varies each time I'm in the lift, depending on how many people get in and out.

Nicola: On a really busy day, you know, that could be quite a workout.

Margaret: But yeah, I wonder if I'm red in the face by then. But if I could encourage men and women to do pelvic floor exercises every day, that's very helpful.

Now, the mind is also plastic. People who've had spinal cord injuries can learn to have orgasmic arousal input and have orgasms from other parts of their body. So, I've not seen any research on this, but I don't see why, if MS is affecting a certain nerve strength, why erotic focus can't shift to another part of the body.

Now, this may take time and effort. But with small, slow exploration of other parts of the body, finding erotic areas, for instance, it might be under your ear or under your neck or it might be the breasts or the small of your back or, you know, finding a different area and focusing on it and helping it grow in your mind in erotic meaning, may help in that arousal and reaching that threshold for orgasm.

Nicola: It's really interesting though, isn't it, when you take the time to touch your body with awareness, how many different parts of your body can feel really nice.

Margaret: That's right, and we tend to ignore it, we tend to sort of focus on the genitals. And actually, you know, our genitals are only, what, 1 percent or 0. 1 percent of our skin's surface. And the skin is one of our biggest erotic, erogenous sensory organs. So we don't make enough use of it. And especially for men who have erectile difficulties, slowing down and learning to enjoy their body can be very helpful. So, mind plasticity is a new area to explore.

Nothing happens very quickly. You have to do things a thousand times before your mind, your brain changes. But it's an area that's a good potential. Now, on a practical point, sex toys and sex aids are beautiful these days. We really have, you know, such a wonderful range of sex toys out there to explore. So, really nice vibrators to increase the stimulation that you're feeling.

So, if the nerve isn't totally affected, but is partially affected, by increasing the stimulation you're getting, you may be able to compensate for what you've lost. So good toys, good vibrators for both men and women, and men can use vibrators as well. And there are some lovely vibrators for men.

Either from the ones that encircle the whole penis so that you put your penis into a vibrating pump like a flashlight to tong like vibrators that you can rub up and down the penis and you get the vibrations on both sides. But there are some really lovely toys out there. To help augment the stimulation that you're getting.

So you're kind of looking to compensate for the losses.

Nicola: Margaret, is there any hints with regards to buying an appropriate sex toy, where you go, how you pick? Because I imagine there's a huge variety.

Margaret: Yeah, I feel terrible actually advertising somebody. But there is a lovely website called lovehoney.com and I think has a wide range of, of products, found reasonable prices. There is a shop called Max Black at Newtown, which I've found is very nice. There is a wide range out there. With the vibrators, I prefer the, the silicon ones to the hard plastic ones. Remember that most women actually get the majority of their sexual arousal stimulation externally.

So it's often not about putting anything inside the vagina. But, some women do have that area which we call the G spot, which is not actually a spot, it's an area, which is on that front wall of the vagina, which gives very nice feelings. Not every woman has it, but if you do, then that's a bonus, and use it.

And for that, you need a curved dildo or vibrator that will actually press on that front wall. And that's, you know, that's worthwhile exploring. It's very hard for women to reach that area themselves because it's hard to physically get your hand around and curve up, but your partner can explore that area.

Nicola: Moving towards the front of your body, so into vagina and then curling your fingers towards the front would that?

Margaret: That's right. So it's towards the right location. Yes, it's towards the bladder, about halfway between the entrance and your uterus. So, it's about, in old term, two inches, but say six centimetres, and it's to the front.

We wonder sometimes if it's, you know, actually stimulating the bottom of the bladder or the urethra which area it's actually stimulating. But if you do have it and your partner's gently stroking that area, it's not a thumping area it's a gentle caressing kind of area. If you have that sensation, then it's a bonus.

Nicola: That's great. And it just reminds you, there's just so much to learn for many of us to increase our education.

Margaret: But I've spoken about women, but men learn often a very narrow script about becoming sexually aroused, which is, you know, to hold the penis very firmly and just stroke it up and down. But in fact, there are different ways of stroking the penis.

There's the scrotum. There's the whole perineal area, which goes to the same stimulation center in the brain as the penis does, so around the anus might be an alternative. So if the nerves towards the front have been damaged, then perhaps that perianal area can be utilised for stimulation, the buttocks, the inner thighs, to use that whole area and not to rush things.

So, when men start experiencing sexual difficulties, They'll often rush into intercourse as soon as they get that erection because they're scared that they might lose it or, you know, they'll ejaculate and they rush to use it. And that actually makes the situation worse rather than learning to relax, to enjoy the sensations and, you know, help themselves that way.

Nicola: And I'm thinking, you know when you say, Margaret, learning to relax, and I know particularly for women, helping to keep their mind from wandering, if you like, and wandering onto the worries, I'm thinking maybe your breathing or some of our mindfulness might help. Is that useful?

Margaret: Mindfulness, yes, but I really think that if you have a tendency to what we call spectator, you know, to observe what's happening or not happening and be critical of yourself or to be distracted, then you need an active process to keep you, what I call, in the zone. And there I often recommend that people talk, because when you're talking and listening, you can't have the, the worry voice running in your head. And Australians as a whole, we're not very good about being verbal in, during lovemaking.

You know, we tend to be silent lovers. Sound and the content of that sound can be extremely erotic. Now, if you've never done this before, maybe reading romantic poetry or accessing some written erotica and reading to each other, perhaps sharing some of your acceptable fantasies, sexual fantasies with your lover.

But when you're talking and you're talking about sexuality, you can't worry. So it's substituting the warring activity with something that's pro erotic. I don't think you can create a situation of a vacuum for someone who's a warrior. People, who worries can't meditate, you know. They can't calm themselves down enough to meditate.

I think you're much better at replacing it with an active activity. If you're making love and you find that you, you're not on the same page anymore because your mind's gone off, then it's about letting your partner know, Oh, Jim, I've gone again. Let's start again. What can I do that will make me engage? I know, I'll give you a massage.

So you, when you recognize that, that you've been distracted and you've lost your sexual arousal, Take the control, you know, acknowledge it, and then suggest an activity that you might like that will re engage you with your partner.

Nicola: And I think Margaret, just acknowledging and knowing that that is normal and that does happen for people and here's a strategy to address it is in and of itself just really helpful.

Margaret: Can I just mention one other thing which is really important and often worries people is the use of fantasy. So, let me tell you that everybody fantasizes at some point, at some time, during lovemaking. Because it's a really fantastic strategy to increase your own arousal within the situation. And usually when we make love in a long term relationship, we're not equally into the lovemaking, we're not equally aroused or horny in each event.

So the less horny partner most commonly will use fantasy some of the time to increase their arousal to join their partner on an equal level. And people can feel very guilty about that. But let me tell you that none of my patients have ever told me that when they fantasize, they're fantasizing about their regular partner in the bedroom, in bed, at 11 o'clock at night.

It's not something I've ever heard anyone share with me. So it's totally normal to fantasize about somebody else. In some exotic situation that is very unlikely and that you may not even want to have in real life. So fantasies are just that, it's our mind playing and I think they are perfectly normal and appropriate to use.

But I do recommend that you don't fantasize about someone who's actually in your life or in your work environment. So that way you keep yourself safe that you're not inadvertently going to cross boundaries.

Nicola: Margaret, there's so much wonderful information that you've shared. Just as we bring our podcast to a close, is it possible amongst all those things that you've got maybe three top messages that you really would like to reiterate for our listeners?

Margaret: Okay. Most important thing as an individual, spend a little bit of time on your own self sexuality. Like your own body, know how your own body works and give yourself the respect and the entitlement to be a sexual person on your own.

Secondly, if you're in a relationship, talk with your partner. Work together as a team but accept that good sexuality is going to take time and planning. It's not going to be spontaneous as it was.

And thirdly, be really mindful of sexuality because that connectivity, that skin hunger need that's met, gives you the robustness and the resilience to deal with the MS on that regular basis. Because that connection, that feeling of being loved, of being important, gives you the strength to then manage the rest of your life.

And I think that's really, really important.

Nicola: That is such a beautiful statement to end with, Margaret. So, thank you so much. And I hope that we all have an opportunity to put some of your wonderful ideas into practice. So, thank you very much again, Margaret. Really appreciate it.

Margaret: Thank you, Nicola. It's been a pleasure.

Nicola: For more information on anything we've covered today, please get in touch with MS Connect on free call 1800 042 138 or email [email protected]. And don't forget to find the MS Podcasts on your favourite podcast players such as Apple, Google Play, Spotify, Overcast, or you can access the podcast directly from our website ms.org. au.