Presenter: Eric Zhou PhD, Harvard Medical School and Dana-Farber Cancer Institute
This is a recording of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium
Presentation is 49 minutes, followed by 11 minutes Q&A
Changes in sexual desire and ability to perform are common after transplant. Strategies to address low desire and inability to achieve an erection, as well as how to communicate with your partner, can improve the sexual health of men after transplant.
- Too often, healthcare providers do not engage in discussions about sexual health with their patients
- In one study, a third of men who have previously been sexually active were not sexually active after transplant
- Those who remain sexually active report problems with desire, ability to perform and communicating about changes in sexual health with their partner
- Risk factors for sexual difficulties include short time since transplant, whether you are in pain, whether you have a mood disorder such as anxiety or depression, age and ability to communicate with with your partner
- A variety of strategies exist to help improve desire, function and communication with your partner.
Transcript of Presentation
00:00 Introductions: If it's okay, I'd like to get to know everybody here a little bit, in the sense that this will be a conversation that we'll have, rather than as much of me talking to you. So if you don't mind, your name, and if you are the patient, the spouse, the whatever the case might be. Where you're from, and why I should visit that place. Got a small enough group, so.
04:10 Sexual images and inuendo are all around you every day, but sex is rarely talked about in visits with healthcare professionals. Very nice. Well thank you guys. I appreciate you all being here for the opportunity to actually just chat about sex. So we know that sex is something that we ultimately see everywhere. I mean this, to me, is the most astonishing change over the past two decades in this country is that sex is thrown at you everywhere you look, and even when you don't. You're talking about sex being used in advertisements for everything from food to your insurance, because we know sex sells.
At the end of the day, the unfortunate reality is despite being able to be hit in the face with some sort of a sexual innuendo, some sort of a sexual picture, something related to sex, we end up in the context of clinical care, rarely having this conversation. So I'm interested here in hearing from the folks who are the patients, who are the survivors of BMT. How often did your hematologist, your oncologist, your primary care, how often did they say, "You know what? How's sex going for you?"
05:18 Who has had a discussion with their doctor about sex? Has anybody here, even as a father, has anybody here heard of their patient, their spouse, their whomever, having that conversation with their medical provider about sex?
05:33 [audience] Several times, whether it's related to there being remnants of either medication or chemo in the semen.
05:42 [Zhou] Okay.
05:44 [audience] More worried about, yeah. Contamination or ...
05:50 [Zhou] Yeah, they went about as medical as you could go with sex.
05:53 [audience] Yeah
05:53 [Zhou] And still talk about sex.
05:55 [audience] Yes.
05:55 [Zhou] And for the rest of you, that means that over the 30 years, the 10 years, the 15 month, the 17 months, you've never had a provider ask you how your sex life was?
06:06 [audience] In a clinical study in a piece of paper.
06:13 [Zhou] A clinical study on a piece of paper. That does not count, you had your hand up.
06:17 [audience] I was told to have protective sex because they didn't want her to get pregnant, and still didn't understand that it's way past the time for either one of us to do that.
06:28 [Zhou] You look like you're about 27, so I can understand why they approached you with that issue. Yeah. That's troubling, isn't it? I mean, at the end of the day, if we think about this, we know, and in fact, the World Health Organization defines sex as being something that impacts quality of life for every adult in this world. That this literally is, well it's the reason why you're here, and it is so integral to the relationships that you had, have, or will have moving into the future.
07:03 This is not a case where, because you or your spouse or your son or your daughter or your loved one or your patients had BMT, that sex stops, but that seems to be this assumption or at least this cloud that encovers, that envelopes all of the folks that happen to be here at this conference, which to me is absolutely astonishing that this occurs.
07:33 Sexual difficulties are common after transplant: Now, if we think about what we know from the literature, what we see is that among men who are sexually active - so we're not even talking about the men who are not having sex - that among the men who are doing this very activity that there are significant issues for a large number of them, which is, I hope, something that makes folks here understand that you are not alone if you experience difficulty with just not being interested in sex anymore. Difficulty with the development and maintenance of an erection. Difficulty with having a completely changed orgasmic experience. These are all things that are part and parcel for a good number of men in your position.
08:27 Study of men 6 months after transplant found lower sexual activity than before transplant: Now, what we do know is that as we get older, we tend to have less sex. I mean, if you think back to when you were 17, 18, 25 versus in your 30s and 40s and 50s, that changes, but what about after BMT?
So, in one study what they did was they looked at men six months prior to BMT who had reported regularly engaging in sex, and it was about 60% of these men, which is pretty on par with what you would expect for a middle-aged American population.
What do you think that number dropped to after BMT? Don't look at the next slide.
09:14 [audience] 10%?.
09:16 [Zhou] The guy in the front, just in case, he cheated. He moved his slides. Not as bad. It was 40%. But, that's a significant difference, because you're talking about essentially one out of the three men who were sexually active prior to BMT discontinuing sexual activity subsequence to their transplant. Not having problems, completely stopping. That's one out of three, that's a lot of folks.
09:48 If for those of you who are seeing patients, that becomes a situation where if you see three men who have had BMT, one of them is likely to have stopped sex.
10:00 Risk factors for sexual problems after transplant: Now, we know that there are significant risk factors before BMT. Before the likelihood that somebody post-BMT is going to have either problems with their sexual health or is going to discontinue sex entirely. As I'm running through this list I want you to think about for yourselves, for your loved ones, if you check off one, two, three of these items, and this is not a case that the more items you check off, the better you are. This is a case where the more times you check off, the more your doctors should have been talking to you about sex.
10:37 First is time since treatment, or time since your transplant. The closer you are, the more likely there is to a problem.
The second on is whether or not you report pain. Whether that be joint pain, general systemic pain, the more pain you experience, the more likely you are to have issues.
Third is whether you have any mood disorders as well. Whether you struggle with depression, whether you struggle with an anxiety related disorder.
The fourth, age. The older you are, the more likely you are to have problems.
Finally, how good are you at communicating with your spouse or your partner? And this is before transplant. How good were you? Because likely, transplant doesn't improve the ability that you have to talk to your wife or husband or whomever.
11:36 Post-transplant health concerns can impact interest in sex: Now, this is probably something that I would be preaching to the choir for in terms of thinking about what are some really common sequelae or consequences of the treatments that folks here at BMT InfoNet tend to experience.
So after transplant, these are all things that can impact sexual health, globally defined, meaning it's all things related to sex. So we can think about things like hair loss, the fact that for 100 days, and when I say fear of, this is really your doctors significant fear of where they keep you inside a very, very tightly controlled space, but it's not like on day 101 folks here are running out to Disney World licking poles and going, "I'll be fine now."
12:22 Various chemotherapies and radiation can cause erectile dysfunction: So the fear extends well beyond that 100 days. GVHD, creating symptoms specific for men that impact their ability to do things as simple as kissing their partner. If you lose that intimacy, what comes as a consequence next? If you've had to receive chemo, a number of different chemo therapeutic agents used in men cause difficulty with erectile function. If you've ever had radiation therapy, this increases fatigue and this idea where the man says, "Honey, I'm too tired to," is absolutely common in this population.
So if we look at these common issues, whether they be related to desire, the erection, the orgasm, the way that you look at yourself, then you build in layers of things like performance anxiety and then you worry, potentially, for your spouse or your partner, whoever that person might be of whether or not this actually could be something that hurts their partner. These are all these layers that get added into an event that already at its start could be complex. And it's not a surprise that we see all the issues that we talked about before.
13:46 Men's self-image is affected by transplant: One thing that I really do want to highlight for a lot of the men is that their self-image is very much affected by transplants. That it is uncommon for a man in some way, not to feel like they are different, whether that's their physical appearance, if they've lost hair for example, if they have rashes, but beyond that there's this idea that perhaps if they've had some difficulty with erectile function that they are less of a man now than they were before. It's how you perceive your manhood and who you are is different now, subsequent to transplants. That is an issue.
14:29 Sex is more complex than ads imply: And hopefully you've picked up, as we've started chatting about this idea is that sex is a really complex recipe. Now, this is of course not what you see. What you see when you see ads for sex is all you need to have is that. Nothing else. Just somebody dressed very seductively, a blue pill, and we're set. Right? And if it were really that easy then none of your doctors should've ever talked to you about sex, should've just given you an ad for Viagra and said, "All right, we're all set. If you want to do it, here's a pill and we're set." But we know that it's actually not that simple.
15:13 Sex involves three elements, all of which you need for a successful sexual experience: desire, function and relatioship: I hope, if we think about at least in my mind, sex is a three-fold recipe that we need to consider, and if you lack any one of these ingredients in the recipe, there is the potential for an issue. Now, these three ingredients, first of which is function is essentially whether or not the engine is running. The second of which is desire, whether you actually want to go out for that drive, and the third of which is you need to have the other person be somebody that you want to engage in a sexual relationship with at that moment. So this is, if we think about that, not as simple as whether we can start the car or not.
Now, if we think about these three, I'm going to focus first and foremost on the function piece because this is the piece that is often ignored as we've heard by your providers. So that at least if this is an issue, or starting to become an issue, that you are aware that there are ways that we can think about this. Now, before we get to that piece, I'm interested very much in how folks here have coped with the fact that they may have been struggling with sexual health for months, if not years, without real intervention from what I've heard thus far. So, for the folks here, how has transplant affected your sexual relationships?
16:58 Lack of desire.
16:59 Okay, as in before transplant you felt more? Subsequent, what have you noticed?
17:07 Just no interest. I notice before constantly thinking about it, natural. Noticing sexual images, stuff like that. Then after, it took a few years after and then it's just, I just have no interest at all.
17:28 Does that bother you?
17:30 Yeah, yeah it does. I think ... I mean, it's a little bit relieving not to always be thinking about it all the time. I think that's just natural for a guy, but at the same time I miss it. I miss wanting to have it, and to do it. I miss the desire that comes with wanting to find it and engage.
18:05 So I had total body radiation, so as part of that, for first year after transplant I was very fatigued and didn't realize what it was until somebody else's, another patients mom who was a nurse did some research and told the doctors, "You need to test these boys for testosterone." So it just knocked out all testosterone.
18:32 He got some treatment and his body started making it again and my body never started doing that, so I've been on replacement for 30 years and that was good. So that helped. And I've worked, over the years, with doctors to tell them you need to talk about this stuff. You need to say this stuff. The other thing they didn't tell me about was about a week before they said, "If you ever want to have kids, we've been trying to keep you alive for two years so we didn't bring this up, but you might want to bank some sperm for kids later." By the time they said it, it was too late, so that had a big effect on later, which I had to find a partner who was understanding that if we wanted to have kids, we weren't going to have them the normal way.
19:22 It's a lot about the partner and getting somebody that's understanding to hang with you there.
19:29 Lack of testosterone after transplant can suppress sexual desire: I agree with you, and you bring up two things, and I want to make sure that I at least pick up on those two things. The first of which is actually related to what the first gentleman here said, which is that lack of desire. Sometimes it actually is related to the fact that your body stops producing or produces less testosterone, and that is very much an under-recognized and under-treated issue as a result of the treatment, so absolutely is the case.
The second thing that you brought up is it's an interesting conversation to have now. I wish that you had the conversation about fertility, which I won't talk about today, before you went in for your treatments, because now you have to have that conversation with every partner you meet, pretty early on that, "It's not that I don't want to have children, it's I can't have children." Then you have to explain why, which opens up this whole other Pandora's box of all of this history for you, and that's usually not a first date at Starbucks over coffee kind of a conversation you want to have. Absolutely. Anybody else?
20:45 After BMT, the desire was there, but it became impaired by the functionality.
20:54 Then of course you begin to feel that you're not, I'll say, fulfilling your partner, so it kind of forms a complete circle and then you begin to lose desire.
21:09 You've just checked off all three boxes on that recipe we talked about earlier. It absolutely is the case that if you don't have that desire because of the fact that maybe you notice a decrease in function that then you start to have that performance anxiety and you worry about what you're doing with your partner and so you of course, and any activity we feel as though we don't well, we stop doing it as much. Other folks?
21:35 Okay, so we think then, what have you done? What have you done in response to all these things that are worrisome? Anything?
21:57 Come here?
22:00 You came here. Well I appreciate that, but that feels very, very underwhelming. I'm glad you're here, but gosh, what else?
22:14 I had a good relationship going into it and that's what kept me alive, and good conversations afterwards and understanding and trying to work things out and so the relationship part of the recipe has been really, really good. I think on the desire side, there's probably something medically there, whether it's testosterone or whatever else, and then graft-versus-host has just all sorts of complications. My graft-versus-host attacked my mouth, my eyes, my skin, my liver all at once. I did both acute and chronic all together. I don't know, it just liked to stack things up, but getting over it's a lot, lot longer process.
23:02 Nobody else has tried anything? Well good golly. That's the case where I just shake my head and think, "Why? Why is that the case?" So if we think about what we do related to the function, remember I said I'm going to take on that piece first and foremost. There are a number of steps that are important to think about related to function and they get heavier and heavier in terms of dosage. And I don't mean more medication, I mean more stuff involved that there's just more heavier hitters, which is good from the perspective that there are more and more solutions for you to consider.
23:50 These are conversations that for folks here, I want you or your spouse or your children to have with your medical providers and thinking, "Okay, well what do we do?" So so starting at the top, the top, top, top, this is stuff that every American should be doing anyways, which is thinking about modifying reversible causes as a result of aging, just natural aging. So we're talking about whether or not you can change medications that may affect things like desire.
24:18 Some medications can decrease desire for sex: So some SSRI's which are used for people who struggle with anxiety disorders or depression, can absolutely reduce libido or your desire to have sex. If that's the side-effect you or somebody you know is experiencing, it's worthwhile to talk to the prescriber to say, "This is something I want to have back, can we switch to a different medication?"
Lifestyle modification, thinking about things like being more physically active, managing your diet better, because these are all things that we know improve energy levels for those folks who are fatigued. It doesn't make the fatigue go away, don't get me wrong. But let's just say it makes it 10% better, and that 10% might allow you at 2:00 PM to have the energy to be with your partner, or as you had mentioned, whether or not some form of hormone replacement is important to think about, as impartial of this treatment that you've had.
25:19 Talk with your doctor about testosterone replacement: Now, typically what is recommended is that this doesn't start the day after transplant. It's usually not advised until at least a half year after the fact, and typically up to the two year mark after your transplant, but these are all conversations that can be had with your transplant doc. He or she may be referring you to another specialist, but for testosterone replacement. There are options whether it's a patch, whether it's a gel, whether it's an injection. These are all viable solutions to at least talk about. Yes?
26:00 Is it okay to take this testosterone replacement for years and years and years?
26:05 It's a good, question, yeah. So typically you may be best primed to answer this question because you've been taking it for years and years.
26:14 I hope so, I've been taking it for 30 years, and every form that they've ever come up with I've tested out and tried out, so yeah. They give you like any medication, all these problems that it could be and stuff. Fortunately I haven't had any of those problems.
26:31 Thank you.
26:32 So it's okay to take it forever?
26:34 Well, I will say this, so he was asking for those of you who didn't hear, if it's okay to be taking this forever, and the answer to that question is we don't know and that we've never actually ... there aren't a lot of folks who've taken some sort of testosterone replacement for 30 years. There are no really good studies to show what happens if you do take it for 30 years. In the same way I'm going to answer just like for drugs that we typically think are safe, like some anti-depressants. They don't study the long-term impact for somebody who's taken them for two decades for example. So it would be a conversation to have with your provider, and I wouldn't worry yet about 30 years from now, I would worry about right now if this is helpful, what's the next step if we come off it if your concern is long-term side effects?
27:25 Discussion about vacuum erection devices: Then the first level, if we go back here, if we think about the first line therapy. The first course of what might occur are vacuum erection devices. Has anybody used one before? What was your experience with one?
27:47 Not very satisfying, not very good. So that was one of the things where the testosterone is important to know its replacement, so it's just replacing your normal level. It's not like you playing baseball and trying to hit home runs out. They were overdosing with testosterone, so it's more just getting you back to your normal level.
28:10 Then as far as the ED just hit me a couple years ago but I think it's more of a combination of becoming diabetic and that's probably that.
28:22 So that would be where we talk about, if we talk about this last page, reversible causes. So for somebody who is diabetic, thinking about weight management, managing the diabetes better. Also we know that ED is an issue, if we think about our rule of thumb is that by about age 50, about 50% of men have some form of ED. By age 60, about 60% of men. I mean, this is a case where forget about transplant. Just age results in increasing likelihood of erectile dysfunction.
28:52 Now, I'm sorry to hear that the vacuum erection device didn't work for you, but often it's an incredibly simple premise that people screw up a lot, not to say you did. But in terms of the patients that we see, I'll explain it for folks here.
29:08 So, the development of an erection is a very simple physics event, it really is. Blood rushes into tissue that causes it to stiffen and maintain an erection, that's really all it is. If we think about physics, what the vacuum erection device does with almost 100% success is it creates a vacuum. So what you do is you have to shave the hair around the base of your penis, you put a ring at the base of thee penis before you put on the vacuum. Then you suck all the air out of the vacuum, just like in this picture right here.
29:49 What happens if you suck air out of something? It forms negative pressure, and blood rushes in. That ring at the base of the penis prevents the blood from then flowing out quickly, which means at the physical level it is really, really good at allowing you to develop an erection. I use the word develop a little loosely here, so you can absolutely create an erection, however there are important caveats.
30:19 As you can imagine, the process by itself is a process. You have to, if you are intending to have sex you can't just go, "Hold on honey, let's go." It's, "Hold on honey, get the device, put everything on, pump the air out, have it happen." Also important to note, the blood that comes into your penis when you use this device is venous blood, which means it's flowing back to your heart and it's cooler. It's not warmer, which means the erection that you actually have as a result of using this is going to feel different.
30:57 Notice I'm using the word different, not worse or better. It's different. So for partners who use this, that's where I often hear the surprise the first time that it's used when they touch their partners penis and go, "Oh my goodness, it's not as warm as what I am used to before." However, from a simple physical level, this is absolutely the cheapest and easiest way of developing an erection.
31:26 Now, when folks ask which one to buy, there's a billion on Amazon. Doesn't really matter, I mean I'm sure they come in some space-grade quality materials and you don't really need all of that. It's about comfort for you, for your girth, and about essentially, durability of the device. So, if you find one that is well-reviewed that is sized to the appropriate girth and length of your penis or your partners penis, there's really no reason to spend triple the money to get something that is sold and packaged nicer. This is line one. Yes?
32:07 What happens when you take the cylinder off? How long does the erection last?
32:10 Great question. So it will vary. Of course the tighter the ring is at the base of your penis, the longer it will last but the more discomfort there will be. The looser it is, the more natural it feels, but then the quicker the blood rushes out. Typically what we find is somewhere between 10 and 20 minutes, which well, I mean there's some other guys over here. I don't know, if you can see, they're shaking their head going, "Oh boy, that's not long enough."
32:40 I'm not going to comment on the fact that somebody sitting next to you was laughing when you went back. There are a few questions I'll ask her afterwards though in the privacy of our conversation.
32:51 Yeah, certainly long enough for, I would say, for most male penetrative activities, to put it bluntly.
33:01 Now, this came second for me, and this comes second for me because this comes associated with a number of different complicating factors whereas the vacuum erection device, like I said, is a one time purchase somewhere between $50 and $150 is typically what we see for a good quality device that can last.
33:22 Oral medications that help with erections: Oral medication, however, thanks to all those ads that we see in TV and in print is what most people think of as first line. For me, it's second line for this first wave of treatments. These are things that we're familiar with whether it be Viagra, Levitra, Cialis. Essentially what these drugs do is they get blood flowing in your body. That's, like I was saying earlier, all the event is just blood flowing into your penis.
Now, this is something that's important. If you take a Cialis, you don't suddenly become horny. All right? You just have the ability to develop an erection better because there's more blood flowing throughout your body. It also doesn't change your ability to talk to your spouse. If you and your spouse are pissed at each other before you take that Cialis, you will still be pissed at each other after you take that Cialis except there's more blood racing through your body. All right?
That's an issue that often presents itself as people take it thinking, "Okay, now we're just going to have sex," and if their husband or wife are just sitting there going, "I'm still not interested in you," it's not going to fix that piece.
Also, if there's nerve damage, often for men who have had prostate cancer, who've had surgery, even nerve-sparing surgery for prostate cancer which is a bit of a misnomer because it's sparing, not completely non-damaging, this could be an issue. For some men post-transplant it just doesn't work and there are mechanisms that we don't understand very well for why that might be the case.
35:10 Side effects of oral medications for erection: There are side effects. If you have heart conditions, typically you will have to see your cardiologist as well to make sure it's okay and this shit is expensive, too. Most insurance providers do not cover this. I'm pretty sure that Medicare and Medicaid for those of you over the age of 65, it does not cover this medication, which means you're talking about hundreds of dollars out of pocket for each pill.
In Massachusetts, for our patients, what we've seen typically is it's anywhere from $100 to $200 per pill, so if you think about that, I mean I got to say I don't know what it's like here in Florida, but if the thought of having sex is $100 bill, I'll tell you what, a lot of guys are thinking, "I'd rather go to that baseball game." It's pricey.
So these are all things that can be effective. Now, most providers are able to give you samples, especially urologists. So at least if it's something you're considering, get a few samples, try it out.
36:20 Injection therapy for erections: The next piece that builds upon this is the use of injection therapy. There are often things that men cringe at, and this is one of them. It essentially takes the active ingredients in what you just saw with the oral medications, but when you take something orally, it goes all over your body, it's systemic, right? The injections often with things called tri-mix or bi-mix, you take a diabetic gauge needle, before you're interested in having intercourse or some form of sexual activity you inject this into the base of your penis.
37:05 You don't seem to be a big fan.
37:07 I think he's in pain back here. [inaudible 00:37:11].
37:12 What I will say, and it is the case that about a third of men will report some pain, but at least where we practice we have often nurse practitioners who actually train all of the men on how to safely inject, and it really is the case that this is a dog whose bark is worse than the bite, that when trained properly it should not feel worse than when you go and get your blood drawn, for example.
Because it's localized, it absolutely is more effective for men with worse ED than the oral agents, however there's also a limit on how often this can be injected, which means if you are somebody who's having sex a lot, perhaps not the best resolution, or who hopes to have sex a lot.
38:12 In the similar vein, you can actually transurethrally administer the medication. It's using an applicator that is actually introduced where you pee through that particular tube. In the same way, this also, for a number of men is considered, "Woo, doesn't feel too great." Similarly to the use of injection therapy, when trained properly by somebody experienced in this delivery, it's very well tolerated by patients.
38:57 Prosthetic for penis: And then building up to the last line of defense, this is the only treatment that is irreversible, however this is the only one that 100% guarantees the ability to develop an erection. It's a prosthetic. Essentially, you create this reservoir inside of your penis after some tissue is removed and there is a button. You're almost like a little robot now. If you push a button, it inflates, you push the button, it deflates. But like I was saying, if you choose to go this route, I would not advise it to be the first one that you go to before trying anything else if erectile dysfunction is an issue, because you cannot go back from this; however, it is very much something that is incredibly well-reviewed by men years after the surgery, because it really is an erection on demand.
40:00 It's not natural in the same way that the other ones are, but it absolutely is the case that men who've chosen to go this route are satisfied with their decision. Yes?
40:12 Can I ask a question?
40:14 Can you rate those series of options on sensation?
40:22 On sensation meaning?
40:24 Sensation with sex.
40:27 As in would you feel the same thing whether or not you've taken an oral agent versus an injection for example?
40:36 [inaudible 00:40:36].
40:36 Yeah, so typically for everything up to this point, there is really no difference in terms of sensation because we're not actually affecting the nerve endings, we're not changing anything to do with the structure of your body that actually perceives whether this is a good thing or a bad thing.
40:52 In this case, there is the risk when you have any surgery and that general area that some nerves may be damaged. Again, this is so well-tolerated and so positive after the fact that typically for most men who've had penile prosthetic surgery, they do not report significant changes to sensation, but there is an increased possibility for this that there might be. Does that answer your question?
41:21 Same question except what about orgasms?
41:25 That's a great question as well. Now, the orgasmic experience, where do you think that lies?
41:36 In the brain.
41:36 Is this a trick question? My wife's sitting here right next to me. In your mind?
41:42 I was trying to ask you, who are you thinking about during sex? Tell us now, while your wife is here.
41:49 [inaudible 00:41:49].
41:55 And the answer is it was absolutely, it's here. It's perception in the same way that we perceive pain and that's not a completely, but a very much a sensation that we perceive here as opposed to through just what we physically feel.
The perception of pleasure, and then that interpretation of pleasure is here, which means, and if you think about a 15-year-old version of you who managed to have orgasm without any stimulation when you woke up after a wet dream, it is the case that if we're ranking these in terms of your ability to have an orgasm, they really don't affect whether or not you're being stimulated. That question relates to desire, and then whether or not you may climax is removed from this function piece.
So if you're somebody who says, "If I have to inject my penis I'm just not going to be turned on at all," Well that kind of answers the question for you, but importantly that has nothing to do with the function which is what all of these pieces are talking about.
43:07 Now, the desire piece, which is something that somebody else had raised and which is a nice transition from what your question is, this is something that while we often see in this group is because immediately after transplant that they're not having any sort of intimacy. I mean, you're not kissing your partner, you are not touching your partner in the same way that it becomes something that you are accustomed to. That couples who may kiss each other every day are now not doing it, and so it becomes the new normal.
If we think about that premise of using it or losing it, it's the case where the longer you go without using it, the longer you go feeling comfortable with any sort of sexual intimacy, and I don't mean sex, I mean intimacy, the more comfortable you are not receiving or giving it, which that just makes it less likely you will want to be intimate the next time you may think about it. That's a very common challenge for folks post-BMT.
44:08 Ruling out possible reasons for lack of interest in sex: So of course we want to do things like rule out medical causes, rule out whether or not this is work-related stress, whether you're fatigued because of your two jobs, perhaps, whether there's issues related to depression. Asking yourself that question that we had raised earlier, this is raised to your changes and how you view yourself. If you are not confident in what you look like and what your ability to perform is, this is of course going to impact your desire to have sex with somebody.
Whether you have pain as mentioned earlier, whether there are medications on board that affect all of this. I mean, I'm willing to bet that for the majority of men in this room, even those who have never had BMT, there is some item on here at some point in some sexual interaction with a partner where one of these pieces plays a role. So it's about re-visiting this list and thinking about, “Well, how many of these things are chronic issues for me that I need attention for in order to better understand desire for myself?”
45:15 And then the relationship piece that we talked about is important. You mentioned earlier this need to have a conversation with somebody you just started dating about something related to sex that has nothing to do with sex, in the sense that it doesn't have real impact on that actual encounter that day, but will in the future. And this idea that having this conversation is tough. I can assure you that I've never heard a man say, “You know what? It was really easy to talk to my spouse about my erectile dysfunction. It was like talking about whether or not we're going out for dinner tonight.” No one says that. I mean, this is part of a man's identity that they've developed since they were teenagers, and you're talking about 10, 20, 30, 40, 50, 60 years of an ability to do something that they identify with being a man that is lost that now they have to recalibrate to. That is a really tough and difficult place to start a conversation.
So for partners or spouses or parents here, this is something that you have the opportunity to engage in a conversation with to hopefully lessen the challenge of having your other half struggle with that conversation.
46:36 Going forward, take pleasure in steps that can lead up to sex: And finally we think about this, and for many of you here you've heard this idea that post-BMT that this has to be this new chapter in what you do. When it comes to sex, this new chapter is not in the same way for other aspects where you feel sort of forced to have to write this new chapter. This is one that I truly believe is a viable and a good new chapter in the sense that if we think again, when you were … Well, let me rewind back to the first time that you remember for the men here, before you had sex I'm assuming the first time you were intimate with a partner it wasn't like you jumped straight to sex. You skipped the making out, you skipped second base, you skipped third base, you just went al the way home, that's all you did, right? Didn't happen, I hope. That'd be really strange.
Well, before you had sex, was it pleasurable to do all the other things that led up to sex? Probably, I hope so. In fact, you were really excited to do all of the other things that weren't sex, and yet as adults what do we do really well is you joke about 10 minutes being long enough, but if we think about that, that's really what we do as adults, is we go for the end zone is really all it is. We think about, “Okay, how do we get to sex? Once we're done with sex, that's it.” So all of the other stuff that comes with pleasure related to sexual activity that you've enjoyed previously that we now skip over are these things that you actually, I encourage strongly you to plan time for as a way of building into sex. That the process in this case truly should be as fun as the end goal and that's important.
48:36 Resources: Now, there are resources available, whether it be sexuality after cancer, sexhealthmatters.org, cancer.org, that if you go and find this material, there's literature out there that will help you think these things through with your partner, whether you choose to work with somebody, who there are a number of good sexual health therapists in the community, or you have this conversation with your medical staff about some of these other issues. Whether they be mood related, whether they're fatigue or pain and managing those. I strongly encourage you to make this part of your care after you leave.
49:16 Thank you everybody for the opportunity to chat.
Question and Answer Session
49:19 So thank you Dr. Zhou. Fantastic, thank you. We would like to take some questions. We would very much like these questions to be recorded because this is being broadcast, or not broadcast but recorded for your access later. So if you have a question we'd like to get a microphone to you if you have a moment.
49:45 [audience] Comment on how relationship becomes most important piece of puzzle as you grow older: So going back to that slide where you had the three pieces of the puzzle, over the years I've found when you're young it's easy and you don't even think about it, it's automatic. But as you get older I found that the more important part of that puzzle is the relationship part and the understanding partner that you might not feel good about yourself and you might have your doubts, but if that partner picks up on that or that partner can understand that, you can work with it.
50:14 [Zhou] You're absolutely right, and that's why it's important here, and I thank you for echoing that sentiment that this idea of having a conversation with your partner who often understands the challenges but that never had that chance to connect and actually talk about it, because it's something that we're afraid of discussing, is so important. I'm glad to hear that you have a supportive partner.
50:39 [audience] Comment on effect of low testosterone: Also, with the low testosterone, you hear it on the radios all the time now, but it affects your mood, it affects your fatigue and you're tired and you're maybe depressed a bit so you don't even realize that you're going along and your engine is just tugging along slow and stuff. Getting that treated, getting that looked at, that just really revives you and brings back your fun into your life.
51:13 [Zhou] I'm glad to hear that. I'm glad to hear that your providers or your friend, I think, had suggested that you at least get that checked. Absolutely.
51:24 These videos are going to be available online?
51:34 Yeah, about four to six weeks [inaudible 00:51:37].
51:38 Yeah, it's just an audio recording.
51:39 [audience] I use the gel, and I find that if I don't use it I get fatigued and tired and a little depressed maybe. If I take one pump a day, it keeps me about stable and if I take one to two, say, and if I take three a day, you know, the desire returns. If I take four in a day I'm running around the house naked, you know? So, I find the testosterone replacement, and I've been doing it for probably 20 years, depending on how much it take, it will restore desire. Not so much capability, but maybe some additional capability by taking more, but I find that testosterone to be a really good product and you know, I take it because I want to feel like a man, I want to look like a man, I want to have a mans body, I want to have a mans strength and I want to continue to function as a man is the reason I take it.
52:57 I've been taking it a long time. I do have concerns about its long-term use. What if I take it another 10 years or 20 years? I'm planning to outlive Simon, I'm planning to beat his record of 46 years since he was transplanted. Simon, I forget the mans last name. Bostic, yeah. But you say there's no data on long-term effects.
53:22 There's not good data, yes.
53:23 No good data on long-term effects.
53:25 You're talking about 30 years post.
53:27 Well, I'd be glad to sign up for a long-term study.
53:30 That would be great.
53:31 And I'm sure Allen here would as well. So.
53:33 And I appreciate you saying that, the one thing you brought up that I want to emphasize is that this testosterone piece, which affected your ability to have desire did not impact function, and that's important, as we saw earlier, in that there is not good expectation that if you truly have erectile dysfunction that improving desire is going to make the engine work.
54:01 If you think about that silly analogy related to a car, if I really want my car that's broken down to work, I can't will it into working, I have to actually fix the cars engine and in this case, the erectile dysfunction piece will still have to be thought about as well as this desire piece. But thank you.
54:22 [audience] Question about testosterone testing: I assume there's a test to check your testosterone level, and if so, is there a baseline? Is it age dependent and do you keep checking it as you're on testosterone throughout the years to make sure that you're hitting that baseline and is there overdosing precautions or stuff like that?
54:41 [Zhou] Yes, yes, yes, and yes. So, to all of those questions, yes. This is a very, very simple conversation to have, even with your primary care but I would advise that you do it with your transplant team because they may have some concerns associated with testosterone replacement therapy for you depending on what other treatments you may or may not have received over the course of your treatment period. So I would bring it up with them, and yes, there are age-related minimums, but that's a norm. You may do well with something higher or lower, but that's a conversation to have with somebody on your team and there's usually an endocrinologist who specializes in this somewhere within your center. So absolutely.
55:29 I think you may have answered my question. I wonder who is the best to talk to, your general doctor, your BMT team or your ... I'm at a loss for words. Well, primary care, you have your BMT and your oncologist.
55:50 Yes, I would rate-
55:51 It seems like they're ready to run out the door the minute you bring something like that up. It just seems, I don't know, like they're uncomfortable with it you know?
56:02 It's a case where if, yes, I understand what your challenges have been in that there are cases in which providers kick the can down the road a little bit. I would start with your transplant team and if not, if your next appointment is with your oncologist I would raise it with him or her then. Those two, I typically say are one-in-one A, in terms of who you should bring it up with. You should absolutely let them both know but it would depend on who you're seeing or who you feel more comfortable talking to. And if you do feel like the transplant doc is kicking it to the oncologist who says talk to your GP, I would put them all on an email and say, "Let me know, folks. What do you want me to do?"
56:45 What about the urologist?
56:47 A urologist is typically part and parcel of your plan if this is related to ED and he or she is often capable of assisting you with all of those treatments we talked about related to function. Some urologists talked about testosterone replacement, absolutely. Maybe it's just a product of the system that I work in where there's a specialist who sees left-handed African American men who have erectile dysfunction because that's what they can specialize in since it's Boston, but I would, again, start with your transplant and your oncology team and see if they have ... maybe they work with the urologist.
57:25 Let's take one more question. Is there another question?
57:33 All right. Well thank you everybody for the pleasure.
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