Listen to S3E27: Let's talk about sex (and MS) with Dr Aaron Boster
On this episode of Living Well with MS, we welcome back Dr Aaron Boster, an Ohio-based neurologist specializing in MS. Dr Boster has featured on episodes that tackled exploring how to make the right medication choices and the impacts of lifestyle choices on MS. Now we tap his expertise to help us grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS?
Watch this episode on YouTube here. Keep reading for the key episode takeaways.
03:09 You’ve recently joined the Overcoming MS board of trustees. How has the experience been so far and what compelled you to join in this capacity?
07:55 How would you define sexuality in the context of MS?
09:00 Is it common for people with MS to experience sexual dysfunction or other challenges with having a normal sexual life?
10:09 Do the types of sexual dysfunction differ depending on the types of MS you have?
13:39 If a man is experiencing sexual dysfunction connected to his MS, what are his options for managing it?
15:53 What if you’re a woman experiencing sexual dysfunction connected to your MS. What are your options for managing it?
25:27 Is it worth getting couples counseling?
30:11 Some people with MS encounter some sort of physical impediments or disabilities. How might that affect your sexual life and what can you do about it?
33:47 Is there any research going on that studies MS and its influence on a person’s sexual life?
36:39 If there was one critical takeaway you could share with anyone in our audience experiencing sexual issues related to their MS, what would it be?
39:55 Is there a general framework for deciding whether to try a supplement and are there any whose positive effects are supported by an evidence base?
Geoff Allix (Intro) (2s):
Welcome to Living Well with MS, the podcast for Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I’m your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don’t forget to check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That’s the kind of viral effect we can all smile about. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode.
Geoff Allix (Intro) (44s):
Now without further ado, on with the show.
Geoff Allix (48s):
Living Well with MS is proud to welcome back Dr. Aaron Boster, an Ohio-based award-winning, widely published, and board-certified neurologist, and the founder of the Boster Center for Multiple Sclerosis, who was featured on past episodes that tackled exploring how to make the right medication choices and the impacts of lifestyle choices on MS. Now we tap his expertise to help us grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic. So, Dr. Aaron Boster, welcome back to Living Well with MS.
Geoff Allix (1m 28s):
And let’s talk about sex and MS.
Dr. Aaron Boster (1m 30s):
Thank you so much for having me. I’m delighted to be back. And you’re right, this is an underappreciated topic which needs to be discussed much more frequently. So, I’m glad that we’re doing this today.
Geoff Allix (1m 41s):
Before we dig into the main topic of sex and MS, there’s two things I’d like to mention. Firstly, I just want to call out that your YouTube channel, which is very easy to find, if you just search for Aaron Boster on YouTube, you’ll find it. In fact, if you search for MS on YouTube, I think it would come pretty high. It is personally, I think the single best resource for a person with MS.
Dr. Aaron Boster (2m 7s):
Wow.
Geoff Allix (2m 8s):
Hugely it is… I don’t know how many videos you probably are much more aware than me, but I’d say hundreds. There are huge numbers.
Dr. Aaron Boster (2m 15s):
Yes, 450 some.
Geoff Allix (2m 18s):
Right. So, whatever topic there is an episode there, and I’ve found it incredibly useful, incredibly informative. So, I would –
Dr. Aaron Boster (2m 25s):
So, nice of you to say thank you.
Geoff Allix (2m 27s):
Well, yeah, I mean, I just think it’s, I encourage everyone just going to have a look. It’s just, you don’t have to look at every topic. Recently, there’s one on cannabis and MS. At which in the UK, the police would have different opinions. So, bits aren’t going to be, you know, I mean appropriate for everyone. But yeah, there’s such a wealth of resources there. So, the second thing, you’ve joined the Overcoming MS Board of Trustees.
Dr. Aaron Boster (2m 56s):
Yes.
Geoff Allix (2m 56s):
Yeah, I think everyone at OMS is happy to have you on board, and your medical and clinical expertise. So, what compelled you to join? And how has it been so far?
Dr. Aaron Boster (3m 9s):
Thank you. Let me answer those in reverse order. Today, it’s been awesome. There’s a significant onboarding process, and I’ve had a great time meeting the other Board of Trustees members, getting to know the Chair, the CEO, and really starting to get to understand the organization. So far, I’ve participated in one formal board meeting. It’s been pretty great so far. I am really excited for what’s coming with Overcoming MS over the next couple years. So, the fact that I get to participate is really, really special to me. Now, what compelled me to do it? Really two things if I may. The first thing is, if you look at my style of MS, my brand of delivering MS care, and the tenets that I have developed and talk about and teach.
Dr. Aaron Boster (3m 58s):
And you look at the tenets of Overcoming MS, they are remarkably convergent, like remarkably so. When I list out being five for five, when I talk about the importance of family, I mean, we just listed six of the seven. I mean, we’re very, very converged. That was one thing that as I started to learn more about Overcoming MS, I said, “Wow, these folks are really thinking along the same lines as me.” The second thing is, getting an MS diagnosis is scary. And it’s a moment in time when people aren’t sure what to do. And in certain locations there’s awesome resources to shepherd someone through an early diagnosis.
Dr. Aaron Boster (4m 41s):
But in many locations, that’s probably lacking, and access is a major issue. And so, if you’re in a spot where you’re recently diagnosed or you don’t know what to do, reaching for something that is ready made and awesome is a beautiful thing. And I’ll be transparent. In my religion, there are a set criteria of things that you’re supposed to do when someone dies. Okay. So, if you don’t know what to do when you’re grieving the loss of a loved one, there’s some set things you’re supposed to do: You’re supposed to grieve for a certain amount of time. The community helps you in a certain fashion. And really, in the absence of knowing how to cope in grief with a loss, that is an awesome structure to have.
Dr. Aaron Boster (5m 24s):
And in many ways, I think for someone newly diagnosed with MS, this is a beautiful thing to say, “Sure do this.” So, for both of those reasons, I’m really, really excited to participate. It’s been a great experience so far. So more to come.
Geoff Allix (5m 39s):
And one thing I would say that you have that Overcoming MS doesn’t, but should do, I think as an extra pillar would be drink more water. And that’s not an Overcoming MS thing. So, we’re on a podcast. You can’t see me. I’m just picking up my glass this very moment.
Dr. Aaron Boster (5m 56s):
Sure. And I’ve got water in my mug, yeah, yeah. So, I’m <crosstalk>
Geoff Allix (5m 59s):
And I think that’s, I know we’re going off-topic here, but I think that it should be. It’s such a simple thing. And because a lot of us have bladder issues and things, and then you sort of say, “Okay, maybe drink less because that’s a bladder buster.” I even know it. I know, if I didn’t drink enough, then I feel worse. It’s one of those instant things. So, some of the things with MS, slow burn as a summary instant. Stress is instant, dehydration is instant.
Dr. Aaron Boster (6m 27s):
Absolutely spot on. And, you know, I like to challenge people sometimes because I’ll say, you know, drink more water, and they’ll say something to the effect of, “You sound like my mom.” You know, or like, that’s silly advice. I’ll say, “Okay, but try it.”
Geoff Allix (6m 39s):
Yeah.
Dr. Aaron Boster (6m 39s):
Try drinking an adequate amount of water for like three days and see what happens. You know because people are shocked. They’re like, “Oh, my gosh, I really do feel better.”
Geoff Allix (6m 45s):
Yeah. And you’ve made it really simple as well. So, I just drink a pint or half liter with each meal, and then drink a pint or half liter between each meal.
Dr. Aaron Boster (6m 56s):
Yeah, then you’re done. You just did.
Geoff Allix (6m 59s):
Yeah.
Dr. Aaron Boster (6m 59s):
Spot on. Yeah. Then you’re good for the day. And unfortunately, so many people, and you give a great example as to why they may shy away from water intake, and inadvertently make their situation so much worse.
Geoff Allix (7m 10s):
Yeah, so I’d like to. Yeah, so on your next board meeting. So, can we add an extra? Drink more water.
Dr. Aaron Boster (7m 19s):
Okay. I’ll bring it up. As we talk about sex, this, we will come back to this whole bladder thing. It is very, very related.
Geoff Allix (7m 27s):
I was going to think, yeah. I was thinking you can’t say, drink water during sex, that wouldn’t work. But anyway. So, let’s get on to our main topic, sex and MS. So, it’s a very important one. I mean, it’s obviously very important for the survival of the species as much as anything, but it’s an important topic. And probably not discussed often enough, often embarrassing. So, how would you define sexuality in the context of MS?
Dr. Aaron Boster (8m 2s):
So, you know, sexuality arguably would be defined as humans’ ability to experience sexual feelings. It’s a really broad blanket term for a lot of things related to sex. So, my first comment is I don’t think of sexuality in someone impacted by MS any different than I do in any other human. And I think that’s actually a very, very important distinction because there’s nothing unique about the sexuality of human being if they happen to have a chronic illness or not. Now, playing out sexual behaviors, intimacy, all these wonderful things, MS can risk interfering.
Dr. Aaron Boster (8m 46s):
And that’s where we get into a really important discussion. And that’s where sometimes we really need to try to help educate and intervene.
Geoff Allix (9m 1s):
So, is sexual dysfunction more common for people with MS? Does it increase the chances?
Dr. Aaron Boster (9m 7s):
It certainly is. Now, you know, MS is a situation where the immune system can affect any part of the supercomputer that runs your body – the brain, and the superhighway – the spinal cord. And unfortunately, there’s plenty of specific areas in the brain and spinal cord where if there’s damage, it could interfere with sexual functioning. And so, the spinal cord is a really good example. Very commonly, when someone has a transverse myelitis, inflammation in their spinal cord, then they may find that their limbs are numb or kind of weak. But they also will very likely notice problems with the down theres – bowel, bladder, and sexual function. And this is, unfortunately, all too common in the setting of MS.
Dr. Aaron Boster (9m 48s):
I would also say that it’s oftentimes overlooked by the MS clinic, something that’s kind of glossed over and not discussed. And given that it’s somewhat of a taboo topic in casual conversation, I think patients are sometimes a little bit nervous to bring it up.
Geoff Allix (10m 8s):
And does the type of MS you have whether it’s relapsing or progressive, does that affect the types of sexual dysfunction you might have?
Dr. Aaron Boster (10m 16s):
I would say no. I would rather think about the kinds of sexual dysfunction a little bit differently. Not so much related to the phenotype of MS. So, someone with relapsing MS, or Primary Progressive MS, Secondary Progressive MS, what have you, I don’t see different kinds of sexual problems. I would run about it as follows: primary sexual dysfunction, secondary sexual dysfunction, and tertiary sexual dysfunction. So, just to share a couple quick definitions that helped me when I’m thinking about this. Primary sexual dysfunction is a problem with the circuitry and hormones of sex. So, when the down theres are stimulated, there’s a lot of circuitry that goes on to assist in intercourse.
Dr. Aaron Boster (10m 58s):
That message in the down there has to go all the way up to the brain, through the spinal cord, where the brain interprets the activities and says, “Ah, okay.” And then it sends messages from the brain back down to the down theres to do certain things. We’re talking about arousal, orgasm… excuse me, arousal, either erection or lubrication depending on the gender, and then eventually orgasm. And so primary sexual dysfunction can result from MS damage in the brain and spinal cord. And what can happen is you can end up with problems in the circuitry. And so, you can have difficulties with any of those things – arousal, erection, maintaining an erection, ejaculating or arousal, lubrication orgasm.
Dr. Aaron Boster (11m 43s):
The other piece to this when I think about primary sexual dysfunction is imbalances in hormones. And I have, for several years now started to routinely screen gentlemen, for example, looking at testosterone levels. Not just to help with sexual function, but there’s also ramifications through other aspects of MS, believe it or not. So that’s kind of primary sexual dysfunction. And we’ll talk maybe a little bit later about how we overcome those things. Secondary sexual dysfunction is important and very often overlooked. And it’s a situation where there’s problems with sex, not because of the circuitry of sex, not because of hormones, but because of MS symptoms that make things not sexy.
Dr. Aaron Boster (12m 24s):
For example, if you’re having intercourse, and you lose your bladder, it may stop the activity. I mean, you know, that’s like scary to a lot of people. They would think, “Oh my goodness, gracious.” And if you’re having intercourse and your leg goes into an extensor spasm, it’s extremely painful, you’re not having sex anymore. Yet even things like motor fatigue can make it so that, you know the activity of intercourse can become challenging, and these are all secondary sexual dysfunction issues. This is where, to be honest, we can really gain a lot of ground. Now, tertiary sexual dysfunction, I would define as not so much the circuitry of sex or symptoms that interfere with sex, but it’s more of a psychological phenomenon where the human being doesn’t feel sexual.
Dr. Aaron Boster (13m 11s):
They don’t feel like a sexual being. They feel maybe like an <unintelligible> they feel ill. They don’t feel that they can be sexy. And so, when I think about sexual dysfunction, I find it most helpful to kind of try to bucket things into those categories. And oftentimes, we’re dealing with all three.
Geoff Allix (13m 35s):
And so, if we break it down into men and women, what options would a man have if he’s experiencing sexual dysfunction connected with MS? Or how could that be managed or helped?
Dr. Aaron Boster (13m 50s):
Absolutely. And so, if we first think about arousal, and this is actually true for both men and women. I’ll make sure to give distinctions. When we think about arousal, the first thing I want to do is I want to look at their medicines. And I want to look and see if I have them on medicines that can impair arousal. And you’d be shocked at how many can. So, unfortunately, many of the SSRI and SNRI antidepressants, which are used very commonly in humans can impair libido. And so, you may have significant sexual dysfunction because of a high dose of Zoloft, for example. And so, we need to look at that. And there’s a host of other medicines that could interfere with arousal.
Dr. Aaron Boster (14m 31s):
Also in the setting of arousal, for gentlemen, we’ll look at testosterone levels, and look and see if his testosterone, which I would like to be above 400 is down like in the 100s. And maybe that’s a component as to why that’s a problem. Another very, very, very common because of loss of arousal or interest in both men and women is depression. Now depression is twice as likely to be experienced by a person impacted by MS compared to the general population. And one of the hallmarks of depression is something called anhedonia. Where just stuff that you enjoy just isn’t really that much fun anymore. Like if you do really like book club or watching TV, doesn’t do it for you.
Dr. Aaron Boster (15m 10s):
And so that can happen with sex, which is a major thing. And because depression is so common in MS, we would be foolish not to screen for that, or ask the question, could that be related to arousal? And so other things that we think about in both men and women, recent psychosocial stressors. You’ll hear about a guy lose his job, and then he’s not interested in intercourse, because he’s really dealing with, he’s kind of stressed out. So, I really require not just some laboratories, but also a careful history and some open honest communication when dealing with the gentleman’s issues as it relates to arousal.
Dr. Aaron Boster (15m 56s):
The women, I guess, if it’s okay with you, let me answer the same question for women just really quick.
Geoff Allix (16m 2s):
Yeah, it’s okay.
Dr. Aaron Boster (16m 3s):
So, with women, we will look at all the same things I just said. Right? Hormone levels included. And then in depression included in the like. With women, there’s actually interestingly two FDA approved therapies to help women with low libido, which is really cool. And interestingly, not known by many, many people. So, there’s a medicine which is approved in the United States of the trade name Addyi, A-D-D-Y-I. And I’m spelling it for you because I’m blanking as I talk to you about the generic name. So, I’m sorry. And that is a pill taken once a day, which in about half of our patients results in improving female libido quite substantially.
Dr. Aaron Boster (16m 46s):
There’s also an injection that’s administered by urologist. And I don’t, I’ve never prescribed it. It’s called PT141. And this is also a therapy that can be very, very helpful in helping with female libido. So, there’s actually more options to help with female libido than male. And so that’s the first area. And I want to stress that you can’t really skip over it. It is so terribly important. When we then talk about the second phase of things that would be erection for gentlemen. I like to divide my thoughts about erections into half. There is obtaining an erection and then maintaining an erection adequate for a penetration of vagina, anus, mouth, whatever it is that you’re trying to accomplish that evening or day.
Dr. Aaron Boster (17m 28s):
And so, with erections, we want to find out, are you able to — do you have erections when you wake up ever? Like it is the physiology, the circuitry of erections, is that intact? Are you able to maintain an erection on your own, like through masturbation, for example? And during intercourse, what’s going on? And this conversation is important because, again, we have to think about primary, secondary, tertiary options. Primary sexual dysfunction, most commonly occurs because of spinal cord involvement in MS. And what essentially happens is the down there are stimulated and as the message is going up the spinal cord it dies.
Dr. Aaron Boster (18m 9s):
So, the message is never delivered to the brain. So, the brain is not informed of the dealio. So, in this situation, something that can be extremely helpful is a plug in the wall vibrator, right? So, I sometimes on podcasts and whatnot have talked about the vibrator trick, which I’ll share now. In the vibrator trick is where you spend 60 bucks American and you purchase a plug in the wall vibrator. And my favorite brand is Hitachi Magic Wand. I don’t have a contract. Though I would do a branding deal with them in a heartbeat until – <crosstalk>
Geoff Allix (18m 43s):
I believe, they’re mentioned on the Sex in the City way back.
Dr. Aaron Boster (18m 47s):
Yeah, certainly. Certainly. So, this is marketed as a back massager. And it’s a plug in vibrator. And the reason it’s so important is we need kind of like overdrive stimulation, right? A double D battery vibrator is not going to cut it for this purpose. And then what you do is you apply a water-based lubricant to the genitalia because that increases skin sensitivity. And then you apply the plug in the wall vibrator, you know, the hardcore power from the wall, and you apply it on the glands, penis, you apply to the head of the penis, you applied it under the testicles, you apply it somewhere where it feels good. And this is providing overdraft stimulation. Just to make the point clear, I’ll use an example of us talking right now.
Dr. Aaron Boster (19m 29s):
So, I’m talking using my indoor voice because there’s no interference between essentially my mouth and your ear, even though we’re across the continent, and there’s microphones, and speakers and stuff involved. Now, let’s say that we were having this exact same conversation during business hours. I’m in my lobby of my office. Today is Sunday. But if this was a busy business day, it would be super loud in here. And you wouldn’t be able to hear me when I used my indoor voice. So, I would have to use overdrive stimulation. I would have to scream, and really project really loudly so that you could hear me. And that’s what we’re doing with a plug in the wall vibrator as it relates to intercourse. We’re providing overdrive stimulation so down there can get the message to the brain and let the brain know what’s up.
Dr. Aaron Boster (20m 13s):
Now the advantage of a plug in the vibrator is there’s no side effects. It’s relatively inexpensive. And you can do it by yourself during masturbation. You can do it before intercourse as a form of foreplay. You can literally hold the device between you and your partner with continuous stimulation during intercourse. And it works well for both men and women. So, everything that I just said with regards to obtaining erection can be applied to maintaining an erection by using the vibrator. And we have taught some gentlemen, if they have difficulties they’ll withdraw, and then they can apply the vibrator to the shaft of the penis, it will become adequately erect again, and they can continue having fun.
Dr. Aaron Boster (20m 55s):
And so, this is a very helpful tool. Now, probably the most widely utilized tool is a little blue pill, right? So, Viagra, Cialis, and the like are very, very helpful medicines, in helping gentlemen obtain and maintain erection, pharmacologically, they’re superb. And so, if there isn’t a cardiovascular risk, why you can’t handle the Viagra or Cialis, what have you, that’s a very useful tool. Taken about an hour before intercourse works best on an empty stomach. You do have to worry about light-headedness, and there’s some blood pressure concerns. And that can make a really big difference in a guy’s life. You know, it’s of note that if you want to make an adult miserable, mess up their ability to eat good food or have sex, and then we’ll be miserable.
Dr. Aaron Boster (21m 41s):
And MS risks interfering with sex for sure. And so, a little blue after dinner mint can really change a guy’s outlook on life. Now, again, on the topic of obtaining and maintaining erection, testosterone level is very, very relevant. Now, there’s a bunch of other things you can do. For example, intracavernous penile injections. So, before the era of pills, we had the shots on the side of the penis, and everyone listened going, “Ooh!” But in exchange for that route of administration, you have a fantastic erection. And sometimes when pills don’t work, we still go back to those tried-and-true methods.
Dr. Aaron Boster (22m 24s):
Other things that you can do if you’re a gentleman, using a device, you can trap the erection. So, you can use a vacuum device, which can be very, very effective. And if you’re really serious about an erection, and those things aren’t working, urologists can actually do penile implants. I have some patients who have been very, very happy with penile implants because nothing else was really working for them. So, you know, you might say, how dedicated are you to your erection? Because if you’re dedicated enough, we can guarantee that you’ll be able to be erect.
Dr. Aaron Boster (23m 6s):
Getting into the same questions with women, we’re really dealing with lubrication, alright? And engagement of the tissue to allow adequate arousal. And so, that’s kind of the equivalent for women as erections are to men. And there’s several ways of addressing difficulties that a woman may have with lubrication. So, one thing you can do is apply a water-based lubricant. Very straightforward, very, very effective. Another option is to apply an estrogen cream to the vulva. If you’re not taking systemic hormones, and there are reasons why some women may not be appropriate for taking systemic hormones, because of cancer risks. Applying a hormone cream topically is really great because it’s just absorbed locally.
Dr. Aaron Boster (23m 51s):
So, there’s no systemic risks. But applying an estrogen cream can really help with engagement and with lubrication. We very commonly prescribe a compounded cream which is called scream cream. And it is what it sounds like. It’s a compounded mix, which includes Viagra and theophylline and several other agents which help in increase blood flow and encouragement and help with lubrication. And so, someone may have a can of scream cream that they use in preparation for intercourse. And so those things can be very, very helpful. Obviously, adequate clitoral stimulation, or vaginal stimulation through the same plug in the wall vibrator is a really smart tool.
Dr. Aaron Boster (24m 32s):
And that can help with lubrication. Now, the tips for orgasm, for achieving orgasm are all along the same lines. Really we have to bring, for both men and women – primary, secondary, and tertiary measures to the table to achieve orgasm. And sometimes we have to take extra measures depending on the specifics of the individual. But the point that I hope I’m conveying is, is that: number one, there are a lot of options to make this better if you’re a boy or girl. And number two, it’s worth it. Right? It’s worth it to have an excellent sexual experience. Sorry, that was a little bit of a long-winded answer.
Dr. Aaron Boster (25m 14s):
I got a little carried away there but <crosstalk> talk about that.
Geoff Allix (25m 15s):
No, no its good. And so, what you’ve talked to us about was very medical. But you mentioned especially the tertiary side of it.
Dr. Aaron Boster (25m 25s):
Yes.
Geoff Allix (25m 25s):
I love the thinking as well.
Dr. Aaron Boster (25m 26s):
Yes.
Geoff Allix (25m 26s):
So, is it worth getting counseling, maybe couples counseling? Because still, it’s difficult to — and this happens, whether you have MS or not. It’s to convince the other person it’s useful. <crosstalk>
Dr. Aaron Boster (25m 34s):
Super, super important. In fact, if you said, “Aaron, what’s the number one tip?” The number one tip is none of the stuff I just mentioned. The number one tip is talking to your partner. So, let’s discuss that. Very commonly, independent from having a chronic condition like MS. Very commonly, we have hang-ups about sex, and we have areas of concern or embarrassment, or topics that we’re shy about. For example, many people are reluctant to flatulate in front of their spouse. Right? So, that’s the thing. Like, you know, we don’t want to do that. And so, talking about sex is not something that most of us are just completely at ease doing.
Dr. Aaron Boster (26m 20s):
Even with our spouse, even with a monogamous partner of 30 years. And when you have a chronic condition, like multiple sclerosis, which can, as we’ve talked about interfere with the circuitry and the success of intercourse, it adds complexity. It doesn’t make it easier, it makes it harder. What I have found in talking to families for over a decade and a half now. And I’m very, very open about this topic in that oftentimes, the two members of the couple would love to talk to the other person. They are dying to talk the other person about this, and they are nervous.
Dr. Aaron Boster (27m 4s):
And when they broach a conversation, it’s almost cathartic because together, they can game out an earth shattering, toe-curling, blood-curdling orgasm that would set land speed records and make the neighbors call to make sure everyone’s still safe. And it’s accomplished because of communication with the partner. Say, and let me be a little bit granular. One partner may really enjoy a particular position in sex because it’s really fun for them, which might cause the other partner with MS to go into spasms. Or it may make the other partner develop truncal ataxia, or maybe it overheats that partner. And the person with MS might not be sharing that.
Dr. Aaron Boster (27m 46s):
They may not be telling the spouse or the partner, “Hey, listen, when you lay on top of me like that, you’re a heavy dude, my body gets heated up and I can’t feel anything. Get off me!” You know, simply talking about changing something as simple as a sexual position might be the answer to really meaningful intercourse. So, you are very spot on in bringing this up. And if you are uncomfortable talking about the topic, let’s game out several things that you can do to broach the situation. Okay. So you could, for example, do couples counseling. Couples counselors are very wonderful because they can help be sounding boards.
Dr. Aaron Boster (28m 27s):
“Did you hear what he just said? Let me repeat it for you.” I mean, you know, they’re fantastic kind of notes. I really like couples counseling myself. There are sex counsellors, alright? I mean, maybe another thing to do is just to have the person listen to our podcast that we’re doing right now and say, “Hey, the little balding, hyper neurologist in Columbus, Ohio was saying we should talk about sex. I mean, what do you think?” And maybe that broaches a conversation. But if you can sit down and talk about sex, and really what I would want you to bring to the table is the following: What are your goals? Seriously. Is your goal to help your partner achieve orgasm? If that’s a goal, state it. State that’s a goal.
Dr. Aaron Boster (29m 6s):
Is your goal to simply be intimate and touch one another? I mean, these are things that you should talk about. Are you going to orgasm? State the goals. If there are certain things that you really like, and really don’t like sexually, particularly the don’t like part. “You know, I know that you’re really like doing blankety blank to me, and that’s very sweet. Except I can’t feel it. I can’t feel it.” So, you doing that is awesome. I just want to let you know that like I don’t even notice that you’re doing. So, FYI. I mean that kind of communication is really valuable. Because then the partner will say “Well, geez, Louise, let me not do that. Let me do something different.” And I think what you’d find is if you have this conversation, it will improve your sex life.
Dr. Aaron Boster (29m 55s):
The conversation will lead to a better experience. It really will.
Geoff Allix (30m 1s):
And so, we’ve talked a lot about that there could be nerve damage between brain and sexual organs and that’s affecting your ability to have an erection, lubrication, orgasms. But what if a person with MS has physical impediments or a disability? You know, apart from their sexual organs don’t work properly.
Dr. Aaron Boster (30m 22s):
Yes.
Geoff Allix (30m 22s):
How could that affect their sexual life? What could they do about that side of things?
Dr. Aaron Boster (30m 30s):
So that involves playing smarter, not harder. Let me give you an example. If we think about a traditional Western missionary position of sex, the guy on top in this like, misogynist example, I apologize. It’s kind of doing push-ups, right? Which is a tremendous amount of physical activity, keeping the core body strong and the arms, it’s a lot. So that might not be feasible for someone. Right? Now, instead, install in your bedroom an eye hook in the ceiling beam, and install a sex sling. The whole world changes now. You place a partner on a sex sling, you can move them around, spin them, pivot them, push them, thrust, move, up, down, left, right, and it takes almost no effort, right.
Dr. Aaron Boster (31m 20s):
And so, by changing from good old-fashioned force of will to using something like leveraging a sex sling, or using a wedge, they make these awesome wedges, which is kind of like bringing a gymnastics room into your bedroom. Where you can position a partner on a wedge. If you have problems in certain positions, again, this goes back to the talking about planning, don’t do those things. And if other positions are more successful, do those things. Let’s use another example of bowel and bladder issues. Very common. Someone has such fear of incontinence of urine or stool, they will not have sex, which is a travesty.
Dr. Aaron Boster (32m 3s):
So, what can you do instead? You can, if necessary, do an inner in self cath, and empty your bladder completely, 100% guaranteed prior to intercourse. If you are prone to urinary tract infections, have your neurologist give you antibiotics that you take before or after sex, alright? If you are having trouble with constipation, you can spend a day or two pre-sex emptying out and getting completely evacuated. Even if that involves an <unintelligible> or you know, digital rectal stimuli, or whatever is necessary, you can prepare for that. Do you see what I mean? There’s a bunch of things that we can do. You have dyspareunia, which is a terrible word.
Dr. Aaron Boster (32m 47s):
It means pain with sexual sensation. So, the act of sex hurts. We have to look into, why you have dyspareunia? If it’s because of spasms of the vaginal canal, we might use a rectal suppository of valium before intercourse. If it’s because of neuropathic pain and burning sensation, we might use a numbing cream. Right? My point here, is if we can identify — because in my mind what you’re saying those are all secondary sexual dysfunctions. If we identify what the problem is, we can game out how to make it better. Then if you remember nothing from my answer, I simply want you to remember sex swing.
Dr. Aaron Boster (33m 28s):
Sex swing. Okay.
Geoff Allix (33m 29s):
And in the last few years, the amount of research in MS medication has just leapt forward. I mean, it’s gone from — so my father had MS. There are no real treatments. When I first was diagnosed. Not really, like what? Five years ago? There were treatments then but there must be 4, 5, 6, 10 times that many now. That seems to be it’s really escalating. So, are there any treatments going on or studies going on for people with MS, and their ability to have a healthy sexual life?
Dr. Aaron Boster (34m 5s):
So, in preparation for our discussion, I actually looked this up because I wanted to be able to answer this question if asked. So, yay. And I went, the way I look up information like that is at the clinicaltrials.gov, which is a site for any clinical trial that’s registered by the United States government. And there were 125 hits for when I searched for multiple sclerosis sexuality. And I looked through the first 10 or 20. All over the world, France, Turkey, Louisiana, Cleveland. So, there were trials throughout. Now, almost all of these are investigator-initiated trials. You know, so a clinic running a small study.
Dr. Aaron Boster (34m 46s):
But my point here is yes, there’s a lot going on. Looking at testosterone levels, looking at various pharmacotherapies, looking at behavioral therapies, a lot of stuff. And so, I hope if you’re listening to this, it’s reassuring to know that clinic doctors and researchers alike recognize this is such a critically important aspect to life that we’re investing resources to try to help you make it better.
Geoff Allix (35m 9s):
And you mentioned about testosterone. So, getting testosterone checked is that part of blood test?
Dr. Aaron Boster (35m 13s):
Yes. So, the way that I do it in clinic is I draw a morning level of testosterone. And the reason it needs to be morning, a gentleman’s testosterone is highest in the morning, and it goes down throughout the day. So, if you tested in the evening and have a low value, you don’t really know if it’s just because of the diurnal, you know, the fact that it drops down. So, you want to get the best most accurate reading. You do that in the morning. You know testosterone level in the morning. I get it on two separate occasions. And if it’s low, the total testosterone is low, that’s a blood test, then that opens up the opportunity to treat with testosterone. Which in MS helps gentlemen not just with intercourse, not just with erectile function and ejaculation in the bedroom, but it also helps improve cognition, and slow disability progression, and improve fatigue with gentlemen with MS.
Geoff Allix (36m 9s):
And is there an equivalent for women with estrogen?
Dr. Aaron Boster (36m 12s):
It’s not the same rules, interestingly. It’s not the same set of variables. And now looking at hormone levels in women is important. And particularly surrounding times of menopause, when we can see an uptick of MS symptoms, and specifically related to intercourse, as I was mentioning with lubrication. So that is relevant, but for a different set of reasons.
Geoff Allix (36m 38s):
So, men definitely worth getting checked out on testosterone, but women…?
Dr. Aaron Boster (36m 43s):
Not as much. No, I don’t routinely check women’s testosterone levels in my clinic.
Geoff Allix (36m 49s):
Okay, and if, so, if there’s one takeaway you could share with the audience, if people are having sexual issues related to MS, what would that be?
Dr. Aaron Boster (36m 57s):
That the one takeaway would be to have open communication with your partners and with your clinicians, because there are ways to make it better. We don’t have to just accept this is now the new state of affairs. On the contrary, there are plenty of things that we can do. And you’re worth it. It’s worth exploring and improving because it is such an important aspect of life, that it’s not okay, you just to say, “Well, too bad.”
Geoff Allix (37m 27s):
And there’s no reason, I mean, the two of us, I think, are probably beyond wanting to have more children at our age.
Dr. Aaron Boster (37m 35s):
Correct.
Geoff Allix (37m 36s):
There’s no reason that a person can’t be fertile as well as…
Dr. Aaron Boster (37m 43s):
Oh, absolutely. So, there’s a whole separate conversation. But I actually love to come back and talk to you about this. But there’s a whole separate conversation about fertility, and pregnancy, and gestation and delivery related to MS. The quick skinny is MS has no bearing on fertility whatsoever. None. And as it relates to our conversation, if you’re having intercourse, we need to be thinking about the appropriate use of contraception to avoid unplanned events such as unplanned pregnancies and things like that.
Geoff Allix (38m 17s):
And before we wrap up, there’s something I wanted to ask you on a completely different tack.
Dr. Aaron Boster (38m 26s):
Absolutely.
Geoff Allix (38m 27s):
So, just as someone who’s got a lot of expertise in this area, and something that is of personal interest. Because of the podcast, I get asked lots about different supplements. So, people say, “Have you tried Coenzyme Q10? Have you tried lion’s mane mushroom, St. John’s Wort, ginseng, ginkgo biloba?” There’s countless things. And some of them, I’m fairly sure, yeah, if your magnesium is low that’s, you know, if anything’s not off the normal levels, then yeah, absolutely.
Geoff Allix (39m 7s):
But there’s always someone championing a supplement or other. So firstly, is there a framework that you would use to decide whether to try a supplement?
Dr. Aaron Boster (39m 18s):
That’s an awesome question. Thank you for asking me that question. And it’s a multi layered answer. So, I have two criteria, if you will. So, the first criteria, there are three things that must be met, if I’m going to greenlight a supplement. The first one is it can’t be too expensive. So, each individual family has to decide if the cost of something is too expensive or not for them. And I bring that up because sometimes you may find supplements where it’s actually a big chunk of their weekly check, and that’s not okay with me. Particularly, if I don’t have hardcore science suggesting that I can guarantee it works. So, it can’t be too expensive. The second thing is it can’t be dangerous.
Dr. Aaron Boster (39m 59s):
And sometimes supplements are dangerous. Now, oftentimes, they’re not. But let me give you an example. If an immune booster actually boosted your immune system, it would be dangerous to take when you have MS. And, you know, just because it’s natural doesn’t mean it’s safe. I mean, cyanide is natural. So, the second criterion is it can’t be dangerous. And sometimes I have to do some investigations, digging through various ingredients to try to answer that question. The third is that it can’t be instead of something I know works. So, if you tell me that you want to take CoQ10. CoQ10 is not dangerous. CoQ10 is not generally expensive.
Dr. Aaron Boster (40m 41s):
And if you’re going to take CoQ10, along with your disease modifying therapy, I have no issues with that. But if you have to take your CoQ10 instead of your disease modifying therapy, where I have good solid scientific evidence that it helps you, now I have an issue. So that’s my first criterion. The second criterion is more rigorous in that scientific evidence, you know, properly studied science to prove or disprove that something’s helpful. And that second one, you know, we don’t have a lot of info. There is some info for some supplements, and I’m going to go over a couple with you right now. But that would be the second one. And you know, it’s worthwhile sharing, at least here in United States where I practice.
Dr. Aaron Boster (41m 24s):
The supplements and vitamins are not monitored by the American FDA. So, if there’s a bottle of a prescription medicine, and it says it does something, they can prove that. It’s been proven, it does something or they can’t say it. You know, if there’s a side effect on the bottle, or a dosage on the bottle, it has to be proven. Like that’s not a suggestion, it’s a proof. If you bottle a supplement that you get at a health food store, let’s say. What they say on it isn’t proven. It doesn’t have to be proven. So, they could say, for example, it will make you grow 10 feet tall. And they’re allowed to say that even if it’s not true.
Dr. Aaron Boster (42m 6s):
And as a result, it calls into question, and it creates challenges and knowing whether something’s okay, but which is kind of I think your point. So, when you look at the evidence, to me, this is a conversation about nutrition, right? And I start with, as we talked about, maybe a little bit earlier, I start with increasing water intake, believe it or not. I think if you’re going to change one thing, increasing water is actually more relevant than any other vitamin or mineral or something that we’re going to talk about. But that’s my first one, honestly. After that, I really would rather spend time talking about healthy eating than I would about supplements. And I would like to engage in a conversation about eating real food, whole food, and avoiding heavy processed foods and the like.
Dr. Aaron Boster (42m 54s):
But let’s move into some recommendations about vitamins. The first vitamin that I think is actually the most studied with the most evidence for benefit of MS is vitamin D3. And so low levels of vitamin D correlate with increased risk of developing MS. And if you have MS, low levels of vitamin D are correlated with worse outcomes. And so, I routinely check a blood level for vitamin D, and if it’s below 50, I supplement. And I use D3, because I feel like it’s better absorbed in the human body. And I want to push that level above 40 below 100, or excuse me, above 50 and below 100.
Geoff Allix (43m 32s):
So, can I just interject that. Because we measured it in a different way in the UK, and I think Europe. So, it’s actually four times the number you’re talking about. So, when you say 50, we say 200.
Dr. Aaron Boster (43m 40s):
Oh, okay.
Geoff Allix (43m 40s):
I don’t know why that is just, it’s not even an imperial metric thing. It’s just because it is exactly –
Dr. Aaron Boster (43m 46s):
Thank you for bringing that up. That’s a really, really important point. And you know, another important point is you and I, even though we don’t live in the same continent, both live in areas where there’s not a lot of sun for a good portion of the year. And so, taking a vitamin D supplement is important because we can’t get it, you know, the good old-fashioned way. Now, I have through my involvement with Overcoming MS become turned on to the idea that it doesn’t take a lot of sun to soak up vitamin D. So, if you go out and let’s say shirtless, or, you know, wearing a halter top, or what have you with some exposed skin, for 15 minutes, you’ll absorb 5,000 international units of D3.
Dr. Aaron Boster (44m 30s):
And now in the winter, Ohio with a foot of snow on the ground very few Ohioans are going to do that. But it is good to know that. Yeah. You know, and during the summer months you certainly do consider that. So, vitamin D3, I think, is very relevant. Past vitamin D3, my next recommendation. And I have to tell you, it’s becoming increasingly something that I recommend. I’m on the cusp of recommending it for all people with MS. That’s probiotics. So, taking a probiotic is really interesting. And there’s an entire fascinating discussion surrounding dysbiosis and the impact of abnormal gut bacteria on the immune system.
Dr. Aaron Boster (45m 16s):
Although that’s not why I’m recommending it. That’s a discussion which is ongoing and still a work in progress. But the reason I’m recommending it is for gut health. People impacted by MS very commonly have significant constipation. And sometimes people with MS have significant diarrhea or incontinence. And so, probiotics pull someone who has constipation more towards the center. And probiotics pull similar diarrhea more towards the center. And so, I really think probiotics are a very, very helpful tool. The next supplement that I would recommend beyond that is added fiber. Because particularly where I practice in the United States, the very low fiber diets, which is a major problem for multiple things, and actually has an impact on MS, in my opinion. And so supplementing fiber, I think is important.
Dr. Aaron Boster (45m 57s):
Now, I would like you to do that with pears, plums, apples, and green vegetables but if you can’t or aren’t able, or don’t want to do it that way, you can purchase a supplement like a FiberCon or Metamucil, or what have you, and then you can do it that way. Now, after that, it really depends on the situation. I think it’s very reasonable for humans to take a multivitamin because, you know, we’re not eating enough salads and vegetables with different colors. But the American diet is normally not devoid of things. It’s not typically a problem with excess.
Dr. Aaron Boster (46m 39s):
And so, if you just add a multivitamin that kind of covers your bases. Now, I don’t recommend mega doses of say, vitamin B12 routinely, or vitamin C routinely, unless there’s deficiencies that I’m discovering. So, I’m not a physician that recommends as a priority that you take a B12 complex. Many people do, because it helps with energy in some cases. But I really find that if I’m not, if I can get you to eat a healthy diet, I’m going to take care of that through eggs and other things. Now, there’s specifics that are recurrent low dose naltrexone.
Dr. Aaron Boster (47m 21s):
You mentioned L-carnitine, things like that. And there’s varying levels of evidence for them. Some of maybe the best evidence would be some of, I think L-carnitine has some good evidence for energy. I believe that. I think that helps a lot. I think that’s one that I look at. Then when you get into some of the other things, you can find small trials. Turmeric, for example. Low dose naltrexone, for example. And really, I deal those in a one-off fashion where someone’s coming to me saying, “Aaron, what about this?” And then together, we kind of look through it. We look at the data if it’s in existence, or if it’s not, we discuss that. We go through my three criteria and then someone may try it. And here’s the important part. If they try it, I want them to tell me what they found.
Dr. Aaron Boster (48m 7s):
You know, did it seem to help? Do they notice a difference? When they stopped it, did it get changed in any fashion? And that’s anecdotally one of the ways that we have to kind of assess things.
Geoff Allix (48m 20s):
Because on the turmeric there are basically no risks, cost is very low, and there’s anecdotal evidence, because it’s been taken —
Dr. Aaron Boster (48m 36s):
Yeah.
Geoff Allix (48m 36s):
And it’s been used on the Indian subcontinent for centuries or millennia.
Dr. Aaron Boster (48m 39s):
And it’s delicious.
Geoff Allix (48m 43s):
Yeah, that’s right.
Dr. Aaron Boster (48m 43s):
You know, if someone wants to take turmeric, how about it? That doesn’t violate any of the discussions we’ve had, and it may help.
Geoff Allix (48m 56s):
Yeah. And if it doesn’t help, you still like the food and carry on.
Dr. Aaron Boster (49m 4s):
You know, its still <inaudible> and its still delicious.
Geoff Allix (49m 4s):
Yeah. I’ll just add, just on a personal level. Because I’m fairly similar to what you’re saying. So, I take vitamin D3 every day. I take a probiotic every day. And the other thing I take is – so probiotic gut health. But also, to reduce UTI, so there’s something I came across that in Germany, they’re routinely prescribed called D-mannose?
Dr. Aaron Boster (49m 25s):
Yes.
Geoff Allix (49m 26s):
And I found that I, and this may be — because I think some of these things work in some people and some don’t. And it’s not expensive. It doesn’t have a lot of risks. And so, I thought I’ll give it a try. And literally within a week, I didn’t have a UTI problem at all. Literally, I don’t have UTI problems at all from having D-mannose.
Dr. Aaron Boster (49m 50s):
That’s fantastic. I think that’s a really, really great tip to share with people. And it’s what I’m going to think about when I start my clinic tomorrow – about whether or not I’m not recommending D-mannose enough to folks with recurrent urinary tract infections. That’s a pro tip. Thank you for sharing that one today.
Geoff Allix (50m 12s):
Well, yeah, I mean, but it may just be that worked for me. So, yeah. But then that’s the same.
Dr. Aaron Boster (50m 16s):
Well, <inaudible> again, it’s nice to have a toolbox where we can consider different things. And that’s a very good supplement to keep in mind.
Geoff Allix (50m 30s):
So, with that, I’d like to thank you very, very much for joining us, and welcome you to the Overcoming MS Board and it’s fantastic news. Giving some of your expertise towards the head of the organization. And I thank you for joining us, Aaron Boster.
Dr. Aaron Boster (50m 48s):
It’s my absolute pleasure. Again, I love talking with you. And I hope that we get to do it again soon.
Geoff Allix (50m 35s):
Thank you.
Geoff Allix (Outro) (50m 36s):
Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at www.overcomingms.org/podcast. You’ll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at [email protected]. We’d love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you’d like to support the Overcoming MS Charity and help to keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.
Geoff Allix (Outro) (51m 22s):
Thank you for your support. Living Well with MS is produced by Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support, and empower everyone affected by MS. To find out more and subscribe to our e-newsletter, please visit our website at www.overcomingms.org. Thanks again for tuning in, and see you next time.
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Dr Aaron Boster is an award-winning, widely published, and board-certified neurologist specializing in multiple sclerosis and related CNS inflammatory disorders. He currently serves as the Director of the Neuroscience Infusion Center at OhioHealth. Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experienced informed Dr Boster’s drive to do things differently. At OhioHealth, he spearheads a revolutionary model in MS treatment and patient care drawing on interdisciplinary resources and putting patients and families first. Dr Boster is also an Adjunct Assistant Professor of Neurology at Ohio University Heritage College of Osteopathic Medicine, and a former Assistant Professor of Neurology at The Ohio State University, where he also formerly headed the Neuroimmunology division.
Dr Boster has been intimately involved in the care of people impacted by multiple sclerosis; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energize and empower people impacted by MS.
Dr Boster grew up in Columbus, Ohio and attended undergraduate at Oberlin College. He earned his MD at the University of Cincinnati College of medicine and completed an internship in Internal Medicine and Residency in Neurology at the University of Michigan, followed by a two-year fellowship in Clinical Neuroimmunology at Wayne State University.
He lives in Columbus, Ohio with his wife, Krissy, son Maxwell, and daughter Betty Mae.