Men’s Sexual Health after Transplant.
Tuesday, April 20, 2021
Presenter: Christian Nelson, PhD, Memorial Sloan Kettering Cancer Center
Presentation is 40 minutes long plus 16 minutes of Q & A
Summary: Men who undergo a stem cell or bone marrow transplant may experience problems with sexual health and satisfaction after transplant. Physical problems, like erectile dysfunction, can trigger emotional difficulties that add to the problem. This program describes the most common sexual problems men face after transplant, and some effective treatments.
- Transplant recipients report more sexual problems than the general population, such as erectile dysfunction.
- Erectile dysfunction is associated with depressive symptoms and can undermine a core sense of masculinity for many men.
- Consulting with appropriate specialists in urology and, more specifically, sexual medicine may be the most effective path for treating problems of sexual health.
(01:36) Common problems men experience after transplant include erectile dysfunction, difficulty reaching orgasm, dry orgasm, painful ejaculation, urine leakage, and penile curvature. Problems in sexual functioning are often interrelated; having one problem may trigger others as well.
(03:45) Without treatment, sexual difficulties can persist long after transplant.
(06:30) Poor overall physical health increases the chance of sexual problems.
(11:19) Erectile dysfunction may also cause emotional withdrawal from an intimate partner which can create conflict and difficulties in the relationship.
(12:15) There are good treatments for erectile dysfunction, and a standard sequence for trying them until each man finds what works best for him. These include pills, injections, vasodilators, and penile implants.
(19:43) The vast majority of men who keep trying options find something that works for them. The real problem is a high rate of men who drop out of treatment before finding a successful therapy.
(21:36) Men tend to drop out of treatment because of a cycle of frustration and avoidance. Avoidance of sexual situations temporarily resolves anxiety but fails to address the underlying problem.
(26:35): Men can benefit from coaching about why sexuality is important to them and how to overcome performance anxieties. This can lead to a positive cycle of acceptance and commitment to find effective remedies to sexual dysfunction.
(30:29) A reduction in non-sexual intimacy can be more damaging to a relationship than a lack of sexual intimacy.
(33:02) There are non-pharmacological strategies such as sensate focus that can recreate intimacy between partners and promote more healthy sexual functioning.
Transcript of Presentation:
(00:01) [Thom Stewart] Introduction. My name is Thom Stewart. I'd like to welcome you to the workshop, Male Sexual Health after Transplant. It's my pleasure to introduce today's speaker Dr. Christian Nelson. Dr. Nelson is the chief of the psychiatry service and an associate attending psychologist in the department of psychiatry and behavioral sciences at Memorial Sloan Kettering Cancer Center. He specializes in psychological treatments for men who experience sexual dysfunction following cancer treatments. He works to help men and their partners optimize intimacy before, during and after transplant. Please join me in welcoming Dr. Nelson.
(00:49) [Christian Nelson] Overview of Talk. Yeah. Thank you. Thank you, Thom. And thank you for having me and thank you for those who are logged on and hopefully this is an informative presentation and certainly you've got time to enter questions in the chat and we'll try to make sure there's enough time at the end to answer a good amount of those questions. I'm happy to be here and looking forward to presenting. Important to this presentation, I have no disclosures related to this presentation.
(01:20) When thinking about sexual dysfunction or sexual problems after cancer treatment, really what is it that we usually see, what usually are those types of things that we see most frequently?
(01:36) Common problems include erectile dysfunction and difficulty reaching orgasm. Erectile dysfunction known as ED is definitely one of the things that we see the most after cancer treatments depending on what type of cancer treatment, depending on where the treatment is focused, often see erectile dysfunction.
(01:52) Sometimes we see difficulty reaching orgasm. A lot of times this might happen - there are some treatments for prostate cancer that lower testosterone which are potentially related to difficulty reaching orgasm - but we see it in other cancers as well, potentially related to types of treatment, potentially related to fatigue and other aspects.
(02:14) Dry orgasm, painful ejaculation and urine leak can also occur. Dry orgasm is often seen a lot of times after prostate cancer treatments, but other cancer treatments as well. That's where a man has an orgasm, but nothing comes out, there's no ejaculate.
(02:26) Sometimes we see painful orgasms or painful ejaculation. Sometimes orgasm-associated urine leak and so instead of ejaculate coming out, sometimes there's a bit of urine leak. For some treatments we do see penile length alterations as well. We might see kind of a loss in length or potential loss in girth.
(02:50) Penile curvature can occur. Penile curvature is something we see sometimes, also what's known as Peyronie's disease. It's something that happens where scar tissue builds up in the shaft of the penis. And what happens when the penis becomes erect, blood flows into the penis - it doesn't actually flow through that scar tissue - so the penis might bend our curve around it, and so we do that at times.
(03:15) Low sexual desire. And low sexual desire. Oftentimes we see that related to a host of cancer treatments. So things like chemotherapy, radiation after surgery, oftentimes we'll see low sexual desire.
(03:28) Problems in sexual functioning are often interrelated. And of course these things can all be related to each other. Sometimes we'll have sexual desires related to difficulty with erections and that can be related to difficulty reaching orgasm. And so those are intensive after cancer treatments, those are the things that we typically see.
(03:45) Transplant causes sexual problems in a variety of ways. And then in terms of transplant recipients, what causes sexual problems in this group? So things like high dose chemotherapy or total body irradiation can have an impact. Obviously they're systemic treatments and so they can have an impact throughout the body. Even things like hair loss, risk of infection, loss of interest - this again, if you're fatigued and feeling tired, you might feel loss of interest or sexual desire - sometimes this can have an impact on erections, chronic fatigue and possible nerve damage, depending on the type of treatment. Graft-versus-Host disease can cause things like inflammation on the genital skin, changes in things like redness and rash. Sometimes narrowing of the urethra and steroids can affect body image. And so there might be a host of reasons why treatment after transplant might impact sexual functioning.
(04:52) Part of the question is, how often does this occur after BMT, after transplant? What's the frequency of these types of problems? I'll review some of the research with you.
(05:05) There's three or four slides. We tried not to have these appear academic in nature, but the hope is that it provides some information in terms of what we see related to sexual dysfunction after cancer treatments.
(05:19) Sexual problems may occur or persist long after treatment. And so this is a study in just about a thousand male survivors of transplant, and so on average, they're 11 years after treatment. So this is quite a long time after treatment. So some of these treatments can have lasting impact on sexual functioning. So 27 were not sexually active during the past year and that's lower than the general population.
(05:44) In one study, about one-third of men reported problems with sexual functioning, including erectile dysfunction and lack of interest. 32% reported problems with sexual functioning - that's pretty general. An erectile dysfunction was the most frequently reported, at 38%. And then about 24% reported a lack of interest and the lower sexual function was associated with things like worse physical, emotional, and relationship health.
(06:12) And so you can imagine that number one, if you're not feeling as well physically, that can have an impact on sexual functioning. And then if it has an impact on sexual functioning, you can imagine that can have an emotional impact as well. And so these things can be related to each other.
(06:30) Poor overall physical health increases the chance of sexual problems. In other studies that we've seen, so risk factors related or associated with sexual inactivity. Problems were far more common in survivors who also reported poor physical health. And other characteristics of those who were sexually inactive, things like older age, not in a committed relationship, unemployed or not in school, less than four years of college and certain types of transplant. And so we see things that potentially related not only to treatment, but might be related to sexual functioning as well.
(07:09) Other studies show higher percentages of reported problems and frequencies higher than the general population. In this study, this is sexual functioning in about 160 men of lymphoma patients after autologous stem cell transplant. In here, it looks like about 40% overall reported sexual problems, 43% sexual drive problems. And so that's sexual interest, your libido, your sexual desire, 30% had sexual drive only a few days or less in the last month. And in that is if you only have sexual desire a few days in a month that is pretty low and that would be considered something to be potentially look for help or look for treatment about. And so 54% had erectile problems, 41% had erections firm enough to have sexual intercourse only a few times or less in the last month.
(08:06) If you look at the general population, that number comes in, in terms of erectile problems, around 20 to 25%. And the 54% is clearly elevated compared to the general population. And only 39% reported sexual satisfaction. So you're seeing definitely an impact of these types of treatments on sexual functioning.
(08:36) We see this across cancer treatment, so this is very common after cancer, very common after cancer treatments. And so really the question is, "so what?" I mean, so this is a problem and why do we care?
(08:50) Because here's what patients tell me that they hear, right? So patients hear this from other people related to difficulties with sexual functioning, and what they hear is this, "Well, at your age, does it really matter?" or "You shouldn't be upset, your cancer is gone." Or, "Well, you'll just get used to it."
(09:20) Problems like erectile dysfunction (ED) are associated with depressive symptoms and concerns about it don’t go away over time. And so ultimately, though, why this is important is sexual dysfunction really can and have an impact on your life. And for men, things like erectile dysfunction, ED, can have a significant impact on your life. And we know now from studies and from my clinical experience, that erectile dysfunction is associated with depressive symptoms. And there's some studies which indicate that as many as 50% of men who report erectile dysfunction also report depressive symptoms. Depressive symptoms enough that they would warrant an evaluation. And so we do see an impact basically on depressive symptoms. Another way to think about it is just general quality of life. We see an impact not only on the general quality of life in the bedroom, but we also see a across kind of life in other aspects of life.
(10:19) ED can undermine a core sense of masculinity. We also know concerns about erectile dysfunction don't go away over time. Right? One of the comments on the previous slide was like, "Don't worry about it. You'll get used to it." Well, actually, it turns out men don't get used to it. And this can impact the quality of life in general happiness, and it's interesting that there's no logical predictors. Oftentimes we think that those men who'd be most distressed are those the ones who were more sexually active, more sexually interested before the treatment. And it turns out that it doesn't really matter in terms of your sexual activity or your sexual interest pre-treatment, all men tend to be upset. And this tends to hit all men. Essentially what the difficulties with sexual functioning, here we're specifically talking about erectile dysfunction, tends to go to the core of what it is to be a man. Men reported as it just kind of hits them in like kind of a sense of who they are as a man.
(11:19) ED may also cause emotional withdrawal from an intimate partner. One man talked about it as they kind of pulled the rug out from under him on the ground that he walked on since he was a teenager. And so there's no doubt that these types of difficulties and problems can have an impact on men's general happiness, on their mood and also this last bullet, on their relationships. And we'll talk about this a little bit more, but often, not oftentimes, but sometimes what happens with men if they have difficulty with erections, they pull back from all either intimate contact or all contact from their partner. And I've heard this enough for men that I know that basically the phrase they use is "What's the use of getting close to my partner? What's the use of having close, intimate contact, because if something starts, I can't finish?" And then what that leads to is a pulling away, withdrawing from the partner, and ultimately that's when the conflict can start. And that's when we start seeing relationship difficult.
(12:15) Unlike some other side effects, there are good treatments for ED. And so in terms of after a bone marrow transplant treatment, we know that sexual dysfunction can be a problem, erectile dysfunction is probably the most frequently reported, and we know that this is actually associated with things like depressed mood, distress in relationship difficulties. And so the good news about this is that we can help, there's actually treatments available, and this is actually one area where there's a lot of hope related to the treatments. Some side effects after treatments, it's difficult to treat those. It's difficult to manage those. Here we actually have some pretty good treatments. And so in terms of erectile dysfunction, again, the thing that we see the most, and the problems that we see reported the most, what are some possible treatments for erectile dysfunction?
(13:09) Pills for ED are the first line treatment. And so let me run through these and then we can certainly have questions about these after I'm done, we can certainly talk more about this. But possible treatments for erectile dysfunction. So there's the pills, right? There's the Viagra, Levitra, Cialis. And for a good portion of men, these pills hopefully will work pretty well. And the pills are generally the first line treatment.
(13:39) There are also penile injections with a vasodilator that involve minimal pain. Depending on the treatment that you've had, depending on the impact, the pills, again, the Viagra, Levitra, Cialis may not work. If they don't work, there are other options. And so second option is penile injections, and usually if I'm presenting this to an audience I can see them, I say... I have people raise hands who've heard of penile injections. And about half the audiences has heard of them and half the audience hasn't, but ultimately these are, as it says, it's actually injections into the shaft of the penis.
(14:16) It's a type of medication called a vasodilator that's injected in the penis and it pulls blood into the penal tissue. And actually it's really effective to producing erections, it's probably the most consistent, most reliable treatment there is for erections. Of course, the difficulty is, if you think about penis and injections and those two words don't really go in the same sentence, right? Penis and injection. It turns out that actually the injections, it's a very thin needle and pain on injection depends on the thickness of the needle. So the thinner the needle, the less pain, the thicker the needle, the more pain. And so it's a very thin needle and the injections themselves turn out to be actually not so painful. It's kind of like getting a flu shot, and whenever I get a flu shot, sometimes I don't even feel the needle going in it's such a thin needle. It's very similar to that.
(15:10) And we've actually asked men, on a zero to 10 scale, tell me how painful the injection is, right? So they use the injections for the first time then we ask them on a zero to 10 point scale to rate the pain of that injection. Zero being no pain, 10 being pain as bad as you can imagine. Now before the injections, and as you're thinking that pain has to be a nine or 10, some people say it's got to be off the chart. It's got to be like a 12. It turns out that after the injection when we ask men, the pain scale, generally men either report a zero, no pain, a one or a two, but very minimal pain. So in terms of injections themselves, not very painful, but a very, actually reliable, consistent, good treatment for erections.
(15:58) Vacuum devices are another option. There's also something called vacuum devices that goes over the penis and it creates a vacuum which pulls blood into the penis, and then once the blood is in the penis and it's erect, then you put a ring around the shaft of the penis to keep that blood in there. And the vacuum devices there's some men who actually really appreciate and use the vacuum devices and find that they work really well. And so it's a little bit of trial and error, but there's certainly some men who use them who really liked them
(16:32) The Muse tablet is another vasodilator. There's also something called Muse, which is a tablet, which is also the similar medication to the penile injections, it's what's called a vasodilator, and that tablet you actually insert it actually into the urethra. And you push it down the urethra a little bit, the medication is dissolved then and that produces erection.
(16:52) And so for the pills, the penile injections, the vacuum devices, the muse, this is the order and how you would try them. And so generally you try the pills first, if they don't work, then you'd move to something like the penile injections, vacuum devices or the muse, and you try those, you try a combination or one of those. And if one doesn't work, then you move to another.
(17:15) If these remedies do not work, a penile implant is a final option which has a high satisfaction rate. If all of these don't work then the option and final option is a penile implant. And so I will say the penile implant tends to work really well. And men who have an implant are men who've gone through and tried the pills, tried the injections, haven't really had satisfactory results, and so they moved to the penile implant and the satisfaction of the penile implant generally is very high. If you look at the satisfaction data, men are reporting 90 to 96 to 97, 98% of men very satisfied with the penile implant.
(17:54) And so there are options available and certainly things that are there and good options for you. And just, here's a few pictures of a few things, this first picture is a vacuum device where you would put this over your penis. And this one is you would just pump the vacuum, they actually have battery operated vacuum devices now, and a ring that would go over the base of the penis.
(18:23) The second lower in, I guess in my slide's, lower left hand corner, the muse it shows kind of the insertion of a tablet into the urethra, and then on the right, the third picture is a picture of the implant and it's basically these cylinders are implanted in the shaft of the penis. And this reservoirs is best basically sits in the scrotum, and then when a man... and this reservoir holds either water or saline, when a man wants an erection, he basically pumps that reservoir, pumps that up the water or saline moves in reservoir, goes into these cylinders producing an erection. And then when a man wants to be flacid again there is basically this lever here, you press, it the water of saline moves from these cylinders back into the reservoir and the man becomes flaccid. And so those are the treatments for erectile dysfunction. If you see a urologist, clearly your general practitioner can help, a urologist or even the best would be to see a urologist, who's a sexual and medicine specialist. Who really knows these treatments well and can help you with these treatments.
(19:43) 95% of men who keep trying options find something that works. And so that's the good news. The good news is we have treatments available and they're there, and ultimately they can work really well. And if you keep on trying, in general, most men, 95% of men find something that works.
(19:58) The real problem is a high rate of men who drop out of treatment before a successful outcome. So the difficulty is those that men can avoid or drop out of ED treatment, and the data on this is actually pretty striking. And so here's some data, so men drop out of treatment, and so PDE5i users. So there's the first bullet there that says men drop out of treatment and then right below it it says 50% of PDE5i users, so that's a little technical. Instead of PDE5i those are pills, the PDE5i are the pills, the Viagra, Levitra, Cialis. So those who use Viagra Levitra or Cialis, 50% of who prescribed that actually drop out of treatment, do not renew their prescriptions.
(20:40) Right, so that's difficult. We know that for most men those will work pretty well and 50% are renewing prescriptions, 50% of injection users drop out of treatment. Even if you look at self-report injection use, only 60% continue at four months, only 33% at the rate suggested for rehabilitation. That's something specific after prostate cancer treatments.
(21:02) But ultimately there's this data about men dropping out of treatment, even though some of these treatments actually are very useful. And in fact, if you try them, you probably find one that is really, really very useful that works really well, but we still see men drop out of treatment. And the question is, why is this? And oftentimes we think it's well, because the injections. Men don't want to use the injections because it's painful or there's something about the pills, the side effects. But actually the research doesn't show that that really impacts it.
(21:36) Men tend to drop out of treatment because of a cycle of frustration and avoidance. What the research really shows is it has to do with a cycle of frustration and avoidance that builds up for men when they experience difficulty with erections. And the way this works is that the first part is there's disappointment and shame related to the ED, erectile dysfunction. I talked before about this notion about man, it feels like I'm not a man anymore, I'm not the person or man that I used to be, distress and depressive symptoms. And so as a man feels that, then there's fear and anxiety about entering into a sexual situation and not having the ability to have a natural or a firm erection. And in the qualitative research that we've done, we've asked men, "What's it like to enter into a sexual situation when you're not confident in your erection?" And then we'll say it's fear. I'm scared, I'm nervous, I'm anxious because if I don't perform... right? And I'm not successful, I feel humiliated. I feel like I'm a failure.
(22:40) These men report anxiety, fear or humiliation about entering a sexual situation that leads to avoidance. And then that basically, that fear and anxiety also is this notion of having to use treatments is potentially a turnoff. Men report that the whole process is humiliating. So all of this builds into the fear and anxiety about entering a sexual situation. And if you're nervous about something, you're fearful about something you're more likely to avoid it. And so there's an avoidance of the sexual situation. Then what happens is there's a loss of value life experience. And then that just increases the frustration, this distress and depression. And so this type of avoidance, this type of cycle avoidance, we see a lot when men have difficulty with erections and they need to use some type of treatment to help with erections. And so just looking at the cycle and thinking about here's the kind of mapped out in an actual cycle format. And what happens is that the stop... at the top here men start with like... they start thinking about the problem.
(23:36) Problem is erectile dysfunction and need to use ED treatment. And then that leads to negative thoughts. I'm not a man. I will not able to finish. I will not be able to succeed. Treatments are a natural and those thoughts then lead to an emotional reaction. Again, this notion of increased anxiety, fear about sexual situation and the fear of having to use a treatment. Is it going to work? Is it not? And then that leads to avoidance, and if you think about it, so if you think, "Okay tonight maybe something will happen so I'm going to try some pills tonight to help with my erections. I'm going to try an injection tonight to help with my erections." And you start to become nervous and anxious about that. If you think about that, then what happens if you're thinking about that, okay, what happens tonight? And you're nervous and anxious and you say to yourself, "Okay, wait, I'm just not going to do it tonight. I'm going to put it off to the next night. I'm going to put off the next week."
(24:34) Avoidance brings relief and lowers anxiety which reinforces more avoidance. As soon as you do that, as soon as you put it off, it's like an instant reaction to help lower your anxiety. It's like an instant mechanism. As soon as you avoid, as soon as you put it off, you're not feeling anxious anymore about it because you don't have to do it that night. So there is relief. There's a short-term relief that quickly then turns the anxiety and fear the next day, because you thought, "Well, I was going to do that, I was going to try something and now I haven't, and now I'm feeling more anxious. Again, I'm not entering into a valued life experience," which only then feeds into the problem. And so we see this cycle of avoidance and so even though there's really good treatments out there, oftentimes men avoid even thinking about them, talking about them, or using them. And so on this slide then.
(25:27) Anxiety about performance can itself hinder sexual functioning. So this is stereotypes. This slide is about stereotypes. And I just want to focus on the top, like there's this notion that men are always in the on position, right? There's this stereotype and maybe if a man doesn't have difficulty with erections, maybe that's true. But as soon as the man has some difficulty with erections, actually they're not necessarily in the on position anymore. Actually matter of fact, they may be in the off position because of this nervousness, the sense of anxiety, the sense of dread about entering into a sexual situation.
(26:02) And so basically the idea then is how can you engage in treatments? What advice can I give you? How do I talk to patients about engaging in treatments and being able to follow through on these treatments? So you can engage in these treatments and hopefully get back into sexual relations or a sex life. And so how to overcome the avoidance. And so one is, this is coaching, it's not therapy, but to start with exploring the importance of sexuality.
(26:35): Men can benefit from coaching about why sexuality is important to them and how to overcome performance anxieties. Like why is it important for you to get your erections back? And men have different reasons for this. Some men say, "Because I just want to be whole again," some men say, "I just want to know that I can, I just want to be able to function." Some men say, "I just want to feel like a man again," some men say it's important to my relationship." Some men are single and say it's important to dating. And so there's a number of different reasons, but it's important for you to think about, why it's important for you. And then after you do that, expect short-term anxiety for a long-term goal, that is... it says, listen to patient's predictions about sexual experience, but you'll have some predictions then about sexual experience, like maybe I don't know how I'm going to do. I might be anxious, it might not work. But ultimately the notion is, is that you're going to be nervous and anxious as you're trying these treatments and you might be nervous and anxious as you enter a sexual situation.
(27:30) Accepting anxiety can help overcome it in the long run. And it's a willingness to accept that, "Okay, I know I'm going to be nervous, it's not going to kill me. I'm going to do it anyways, because if I try these treatments, then hopefully that even though in the short term I'll be anxious, hopefully in the long-term what happens is they're successful and I'm able to use these treatments, I'm able to engage in sexual relations again. It's basically a willingness to experience anxiety and frustration. Oftentimes diffusing anxiety and frustration is helpful kind of emotional processing that's just a technical way of saying, talking about it or at least thinking about it. Sometimes talking it over with someone is helpful. Humor. Using humor, men often use humor in these situations many men find that it's actually helpful. And then focusing on the physical sensations in the sexual situation, think about barriers that you will put up for yourself to not follow through and what those solutions are and then make a commitment to actually doing it.
(28:30) This can lead to a positive cycle of acceptance and commitment. And so coming back to a cycle, so this is the cycle of acceptance and commitment. And so here, instead of starting with the problem as the previous cycle, here you want to start with the values, goals and why it's important to you. Again, it's improved sexual function, intimacy, relationships, then a notion of acceptance, notion of that accept that you will potentially and probably will be anxious as you're trying these treatments. As you're entering into sexual situations in a willing to accept that anxiety as something that's just part of the process and do it anyway. So willingness to accept the anxiety and fear in the sexual situation, and then using the treatments in anyway. Use diffusion, things like self-talk are helpful, no pain no gain, use of humor, these are things that men report have been helpful. And then the notion is to again, even though you're nervous and anxious to try to move into action and engage anyway.
(29:29) This cycle can motivate men to find effective remedies. Engage in situations and are using the pills or using injections because ultimately the only way you're going to figure it out is through experience and through trying. So as you try it, there's some growth hopefully, there's increased intimacy, you may learn that some type of pills work, some types don't, some type of treatments work, sometime types don't. But the only way you're going to learn that is through the experience. And then hopefully there's been the commitment to keep going, which increases life flexibility, moving towards an important goal. And so that's kind of the notion of avoidance and hopefully working through that avoidance. And then hopefully then maintaining sexual relationships on the relationship aspect, what are things that you can do? And so the impact of sexual dysfunction on relationships, it can be significant.
(30:29) When men withdraw, a reduction in non-sexual intimacy can be more damaging to a relationship than lack of sexual intimacy. And in the previous slide I talked about this. So men with ED tend to withdraw from their partner, and may fear they cannot perform. And so ultimately again, it's this withdrawing from the partner, if a man says... This notion of what's the use of getting started if I can't finish and so what happens is men tend to withdraw not only from intimacy in the bedroom, but other kinds of non-sexual intimacy. So the things like sitting together on the couch or holding hands or hugging or kissing goodbye, or spending time together. There's a tendency for men to withdraw from that again, with this notion of, what's the use of getting anything started if I can't finish. And my experience working with couples is that for the female partner it's not kind of the reduction in sexual frequency where the conflict starts, it's actually the reduction in the non-sexual intimacy. It's the pulling away from those non-sexual intimacy moments where the female partner just thinks, boy they're just pulling away, they're not even here anymore, they're not even interacting with me anymore. And in a relationship that tends to be when the distress starts.
(31:57) Men may also misinterpret a partner’s efforts to reassure them. Partner may fear setting patient up for failure and also pull back, which happens as well. If the partners has a sense that you're nervous, or there's a sense of fear on your part, the partner may pull back as well, because they don't necessarily want to put you in that situation or put themselves in the situation. And a lot of times there's kind of a he said, she said, and oftentimes men and women communicate differently about this. And so many times what happens is that the female partner will say, "It's okay. What's most important for me." The female partner says, "Is that you, the patient is still around, that you're still alive. I'm not so worried about erections or sexual intercourse." And so women are trying to be supportive but men hear is that, "Wait a minute you don't care about that? That's an important piece to me, that's an important piece of what it is to be a man." And oftentimes take that as you don't care about me, you're not interested.
(33:02) There are non-pharmacological strategies to recreate intimacy. And then there's a communication just on different levels, where she's trying to be supportive and a man is saying, "You don't really care about me." Or "I don't necessarily really believe you." And ultimately they're communicating on different levels. So what's definitely important is as you talk about it with your partner to talk about these things, to know about this dynamic and try not to be talking on different levels, but trying to talk enough and figuring it out enough where you can talk on the same level. And so some strategies to help with that. And so these are... I talked about kind of the pharmacological solutions, here are some non-pharmacological strategies to improve sexual relationships. And so there's an exercise called sensate focus. And this is really about coming together, you and your partner without the stress of having to have an erection or without the stress of intercourse.
(33:58) Sensate focus is one effective way to restore intimacy through successive steps. And essentially there's three steps. The first step is to come together and basically massage, but in this step, things like genital area and breasts are not in play and are not the focus. And as you come together and massage the idea is to just enjoy the physical touch, you can massage with clothes on massage with clothes off, you can massage in the shower, you can massage with oil. But the whole plan is to come together and to focus and actually the goal is not to have an erection or not to have intercourse, but just to come together in a way where you can enjoy physical touch again. You can do that, depends on the couple, some couples do that five, six, seven times, some couples do it two or three. Before you move on to the next step, which is step two, where breasts and genital regions of the body are in play, but still there's not a focus on erection, there's not a on intercourse and there's no focus on orgasm.
(35:06) And so you're not supposed to move to erections, intercourse or orgasm, but again, just enjoy the touch, enjoy being together where breast and the genital areas are available in play. And the ideas to do that, a few times, some couples do it two or three times, some couples do it four or five times. But coming together, we are not focused on erections, intercourse or orgasm. Step three is basically the same thing, but you're allowed to move then to orgasm. Again, the pressure isn't necessarily erections, it turns out that men can have an erection, have an orgasm even if they don't have an erection. But the notion is to go step-by-step, to progressively get into something a little bit more sexual, but ultimately taking the pressure off, having to have an erection or having to have intercourse.
(36:05) Often times it's good to set some time aside to talk about intimate topics and have intimate conversations, to make sure you're taking the time to talk about this. Sometimes what happens in terms of sexual desire is... sometimes what happens or what's helpful in terms of sexual desire is keeping a desire diary, indicating how your desire is the highest. And then that is the time to tag in terms of sexual relations or sexual intercourse. Self-stimulation can be helpful in all of this, especially when trying the ED treatments, trying it on your own sometimes reduces the stress and anxiety of having to try it with a partner. And oftentimes that's helpful. Now self-stimulation, even mutual self-stimulation with a partner is helpful sometimes in relationships where it takes the pressure off of erection or intercourse, it can be helpful in relationships.
(37:02) Sex therapists and psychologists are another important resource. And then consulting with a sex therapist or psychologist who does specialize in some type of intimacy work or sexual functioning work, can be really helpful for couples. And oftentimes this takes really kind of one, two, three, four sessions, this is not long-term meeting with a therapist. This is generally short term, most couples are helped after two or three treatments. And generally couples report that it's very helpful to open up the conversation about these topics and then to discuss practical strategies on how to move forward. In terms of resources that can help and so referral resources. Resources that can help, if you're looking for things like psychologists who specialize in working with sexual issues or sex therapists, the Society of Sex Therapy and Research SSTAR, and on their website they should have links and they do have links to referrals in specific regions
(38:10) Also, the American Association of Sexuality Education, Counselors and Therapists called AASECT, on their website they also have referrals within specific regions to again, sex therapists, sex counselors, or psychologists who specialize in this area. Another really good source of information is the American Cancer Society website. And you can search things like questions adult males have about cancer and sex in the adult male with cancer. And they review topics, answer questions, review these type of treatments, review kind of non-pharmacological treatments. And it's actually something that I've helped write and put together. So at least for me, I think is good and I've edited and it's important. So these are important resources, hopefully to help beyond this presentation. And ultimately this is just my last slide, and so this is something that was taken at Safeway, a supermarket, right?
(39:14) And it's supposed to say, pen is broken, please use finger, and it's exclamation point. But it actually turns out to be read, penis is broken, please use finger! Thanks. And the reason I bring this up is not because it's funny, but because in general, my experience is if penis is broken to some extent, men don't want to use their finger. They want to actually have some type of treatments that can help give their erections back. We have those treatments and it's a challenge then to push forward and to talk to a physician about those treatments, knowing that there might be some avoidance to using them. There might be some type of psychological disappointment that's happening, that's leading to avoidance. But you work through it, you can definitely be successful.
(40:04) Though sexual dysfunction is common after transplant, it can be treated with persistence. And if you keep trying, you can definitely be successful. And so my message to you is that, even though sexual dysfunction is prevalent after these treatments, we have ways to help with that and if you keep trying, hopefully you'll be successful. So thank you for listening, we have moved on to questions and happy to take some questions and answers.
(40:35) [Thom Stewart] Q & A .Well, thank you Dr. Nelson, excellent presentation, particularly the last slide, that was very funny. We will now take questions, as a reminder, if you have a question please type it into the chat box on the lower left-hand corner of your screen. The first question that we have from one of the questioners is, does neuropathy contribute to ED?
(41:05) [Christian Nelson] So, the answer is a bit it depends, but neuropathy... what neuropathy can do is, it potentially can impact the nerves on the penis. And so what it might do is potentially, basically lose the sensation on the penis and the penile tissue. And so things that were enjoyable, whether it was physical touch, oral, whatever it was might not be as enjoyable. And because of that you might have more difficulty with erections. There might not be anything mechanically wrong in terms of producing erection, it just might have to do with a loss of some physical sensation on the penis and the skin and the penis.
(41:58) [Thom Stewart] All right. What is the procedure for testing testosterone level? Is testosterone replacement safe?
(42:06) [Christian Nelson] Mm-hmm (affirmative). So the procedure is that you would talk to your doctor, if you're thinking about this, I would go to someone who specializes in testosterone replacement. And so there are those doctors out there. So there's some sexual medicine professionals that, again, those are urologists who specialize in sexual medicine. Many of those who actually have a lot of experience with testosterone and testosterone placement. There's endocrinologists who also potentially might do testosterone replacement. The test for testosterone is really very easy, it's a blood test. And if you're getting some other tests done in a day, they can actually add the test for testosterone. Technically it should be done in the morning preferably before noon and hopefully even before 10 or 11, but ultimately the best test for testosterone are in the morning.
(43:01) And there are a number of testosterone replacement treatments or therapies. And so are they safe? The general answer is yes, they're safe. And if you have low testosterone because of your treatment, to replace your testosterone and get your testosterone back up to normal, can actually help you physically feel a lot better emotionally, can help you feel better. It would be potentially beneficial, and so the options are out there and definitely meet with someone to talk about the options and how that can happen. But I definitely encourage you to pursue that treatment.
(43:47) [Thom Stewart] Excellent. We have another ED question here. What type of doctor is the best type to treat ED?
(43:54) [Christian Nelson] Yeah, it's in the sexual medicine specialist, so it's a type of urologists. Be in the category of urologist and within urology there's a specialty which is called sexual medicine. And so these doctors are really the best to treat erectile dysfunction, they'll have the best knowledge of all of these treatments that I've talked about. They'll be able to help you out in terms of what's the most appropriate for you, if one doesn't work they'll be able then to go to the next treatment and really they're the best doctors to really work with this. They know their stuff.
(44:36) [Thom Stewart] All right. We have a couple of questions here related to personal experience. One is, I never experienced these issues, can I expect problems later? Three years, three months, post-transplant, 71 years old, non-Hodgkin's autologous transplant.
(44:54) [Christian Nelson] Mm-hmm (affirmative). If you haven't experienced them yet, that's probably a good sign. That's probably a good predictor that in terms of the treatment that they probably won't have a major impact on your sexual functioning moving forward. And so this is certainly a good sign, I don't want you to think ahead and expect that they happen so you kind of talk yourself into them. Most likely hopefully in terms of, at least in terms of the impact from the treatment you should be okay.
(45:24) [Thom Stewart] All right. Here's another personal question. I'm 57 years old and one year post-transplant, before transplant I had taken Sildenafil and experienced headaches and mild vision issues. Now post-transplant I recently, 45 days ago, began taking Norvasc, this blood pressure medication was issued as a result of an increased dosage of Jakafi. Taking ED med seems contrary to taking blood meds. I welcome your thoughts.
(45:59) [Christian Nelson] Yeah. So definitely talk it over with your doctor. And for this one I might specifically seek out a sexual medicine professional, because they'll have better knowledge in terms of that the ability to take something like the Cialis, right? And all those types of pills medications are very similar. So Viagra, Cialis, Levitra, they're all very similar and so have a similar with co side effect profile. But you'd want to talk it over with someone who really knows if it's dangerous or not. And so you can talk it over with your general doctor, your general doctor may just dismiss it out of hand without having some good knowledge about it. And a sexual medicine professional would have better knowledge and be able to tell you if yes, you can and will be safe, or no, you can't.
(46:52) If you can't take a pill, like I said, there's other treatments, and I would really encourage you even though you're saying, "I don't know if I can try injections." I would really encourage you to seek out and try them if in fact the pills, aren't an option for you. The injections, again, tend to produce really kind of very, very reliable, very rigid erections. They're really the most consistent treatment there is.
(47:20) [Thom Stewart] Is it safe to have intercourse with ejaculation while undergoing chemo treatment. I'm thinking of for the patient and for the partner.
(47:29) [Christian Nelson] Yeah. While you're going through chemo, I think you'd want to refrain potentially from intercourse and ejaculations, so you could use a condom. But during chemo, basically the jury's kind of out on this, but to be safe, I think during chemo using a condom or refraining from intercourse would probably be best.
(48:00) [Thom Stewart] All right. Another personal question. Had a transplant 34 years ago. Now I have prostate cancer, have been dysfunctional for years, but now I'm incontinent and I'm less willing to try. Any suggestions?
(48:19) [Christian Nelson] Yeah. Right, so common after prostate cancer is incontinence, and so a few things. There's two things you probably want to target. So one is the incontinence and one is the sexual dysfunction and it sounds like difficulty with erections. And so there are... As there are urologists who specialize in sexual dysfunction, there's urologists who specialize in things like urinary incontinence. And so there's urologists who specialize in that, my suggestion would go to see each one of those. And so there is potentially treatments, either medication you can take or other interventions that can help with the incontinence. And then as I talked about there's treatments and other things that can help with erectile dysfunction, but there are specialists in both of those areas and in general, patients find it really helpful to go see them. And so I would definitely encourage seeking out both those specialists.
(49:30) [Thom Stewart] Thank you. This questioner wants to know, this questionnaire is five years post-transplant, is 72 and lost all libido. Is this common? Any suggestions on how to treat it?
(49:46) [Christian Nelson] Yeah. And so definitely can be common, potentially after transplant and also as men age they lose about 10% of testosterone per decade. So it's common for your testosterone basically to go down as a man ages. And so yes, there's potentially something that can be done about it, is there are treatments to replace testosterone and so good to get it checked again and pursue that type of treatment for testosterone replacement. Again, the places to go for that would be, sexual medicine professionals and endocrinologist. But you'd want to look to see for someone who actually has experienced with testosterone replacement, and it's something that they do in their clinical practice. But there's many men in their 60s, 70s and 80s that find a significant benefit for testosterone replacement. There's ways to do it, there's medications out there. And it's a discussion with, again, probably with the sexual medicine specialists or endocrinologists who specialize in this and whether it's appropriate for you.
(51:04) [Thom Stewart] Okay. Are sexual function problems permanent? Are you ever able to go back to normal sexual activity like pre-transplant?
(51:15) [Christian Nelson] So it would... it depends on exactly what the sexual problem is and how its manifested itself. And so there are times where difficulty with erections might be related primarily to anxiety. That's kind of man is just very nervous and anxious about entering a sexual situation with a partner. And because of that they become kind of hypersensitive to their erections, right? They become hyper-focused on their erections and as they enter a sexual situation, they're kind of cataloging, "What's my erection like? Is it getting hard? Is it not getting hard?" And if it's kind of... and then what happens it leads to anxiety and then anxiety, basically when the anxiety adrenaline hits your bloodstream, it's like a potent anti-erection agent kind of adrenaline's purpose is to pull blood from nonvital organs to vital organs. And so, unfortunately adrenaline doesn't think that the penis is a vital organ.
(52:19) So it'll pull blood from the penile tissue into the vital organs. So, ultimately if something like it's anxiety driven, there are ways definitely to overcome that. And then once you do, your body will start to work naturally and you can recover. If the impact of the treatments is more physical, it has a physical impact you may or may not recover the sexual functioning. And it just depends on exactly what the sexual function or dysfunction is, the type of treatment you've had. And it would be a much more individual conversation to go through that.
(53:02) [Thom Stewart] All right, this self questioner says that he takes two blood pressure medications daily and is also taking oxycodone due to bone pain. I know opioids can affect sexual function, but will blood pressure medication affect ED as well?
(53:21) [Christian Nelson] In general no. In general blood pressure medications not necessarily related to difficulty with erections, so in general, no. But again, if you're having problems you definitely want to reach out to someone to talk about it, like again, a sexual medicine professional yeah. But in general, the blood pressure medications don't necessarily impact erections.
(53:47) [Thom Stewart] Does exercise help your sex drive?
(53:51) [Christian Nelson] Yes. And so exercise is good, right? So exercise is good for a lot of things. And so if you're feeling like you're libido is a little down, your sex drive is a little down, erections are okay but not as good as they used to but you're feeling like you're not in the shape you used to be. Lifestyle interventions can be effective and can work and exercise is an important piece of it. And so yeah, the exercise has the benefit of potentially helping things like your arousal, your libido potentially helping erections. So it's good. But then exercise has a whole bunch of other benefits, right? You feel better about yourself. It helps you cope with the side effects of treatments. There's evidence that it helps cognitive functioning, exercise is a good thing.
(54:41) And so I would definitely support exercise in getting in physical shape and this lifestyle type interventions, how you eat. To help you as a whole person, but also potentially to help things like your libido. And if there was some research which shows that it can help you erections too.
(55:06) [Thom Stewart] Great. We only have time for one last question. Just got a couple minutes left. So here's the last one. Sometimes I can get an erection, but it seems only to last a short time before I go soft, the blood drains out. Is there anything I can do?
(55:24) [Christian Nelson] Yeah. So this is... So you want to... You definitely want to see a sexual medicine professional and he or she can run a test to see basically what's happening with the mechanism that clamps down in that blood once it exits the penile tissue. And so basically if the blood flows in the penile tissue but the penile tissue is cramping down keeping that blood there, then what will happen is that you'll lose the erection. But you can lose that for other reasons too, that can be because of anxiety or other reasons. But you can have it assessed, you can have it checked. There's a test that they can run to see what's happening with the blood flow in the penis and the penile tissue, to see how it's functioning. And then once they determine and once they have that test and the outcomes of that test, then what they can do is determine the best treatment to help get your erections back.
(56:31) So first step sexual medicine professional to have an assessment basically to seek what's happening with the penile tissue and the penis to see if it's operating properly and then they can decide on treatment from there.
(56:49) [Thom Stewart] Closing. Excellent. Well, Dr. Nelson, thank you very much. Time has just flown by. I think I can speak for the entire audience in saying that this was a very, very insightful presentation. And on behalf of the BMT Infonet and our partners, thank you very much for your helpful remarks and thank you, the audience for your excellent questions.
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