Men's Sexual Health after Transplant
August 5, 2020 Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020
Presenter: Eric Zhou PhD, Faculty, Division of Sleep Medicine; Attending Psychologist, Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Boston Children's Hospital
Presentation is 35 minutes with 19 minutes of Q&A.
Summary: Sexual difficulties in men after a stem cell transplant are common, and can be caused by a number of factors. Several therapies are available to help men improve sexual health after transplant.
- Chemotherapy, radiation and graft-versus-host disease can cause sexual difficulties for men after transplant.
- Men often do not raise the issue of sexual difficulties with their doctor, nor do doctors routinely ask if this is a problem.
- Successful treatment for sexual dysfunction will include addressing function, desire/libido and the patient’s relationship with their partner.
00:53 A 2013 study found that one in five male transplant survivors experienced genital skin changes such as redness, rash and/or narrowing of the urethra.
06:38 A man’s self-image can be tied to his ability to perform sexually. It is easy for a cycle to occur where the sexual dysfunction leads to a negative self-image and a negative self-image leads to more sexual dysfunction.
12:47 Risk factors for poor sexual health after transplant include time since transplant, chronic pain, fatigue, depression and age which naturally increases the rate of erectile dysfunction.
16:23 Therapies for erectile dysfunction include much more than oral medication, which is often not covered by insurance and does not address issues with libido.
16:23 Lifestyle modifications like taking care of your body through diet, exercise and grooming can be beneficial for sexual dysfunction after transplant.
19:45 Hormone therapy, vacuum devices, injection therapy and prosthetics are common therapies for men with sexual dysfunction after transplant.
24:58 Patients experiencing a loss of libido first rule out medicals causes and then address other potential causes such as stress, anxiety around sex, and emotional issues with their partner to determine what may be causing lack of libido.
32:11 Improving intimacy with your partner can be achieved through keeping a desire diary, sexting with your partner, and considering what turns you both on and incorporating that into your sex life.
34:49 Two goo dresources for men experiencing sexual difficulties after transplant are Cancer.org and Sexhealthmatters.org
Transcript of Presentation
00:00 [Moderator] Welcome to the workshop entitled Men's Sexual Health After Transplant. My name is Thom Stewart, and I will be your moderator today.
It is my pleasure to introduce today's speaker, Dr. Eric Zhou. Dr. Zhou is on the faculty of the Division of Sleep Medicine at Harvard Medical School and is an attending psychologist at Dana-Farber Cancer Institute and the Boston Children's Hospital. His research focuses on how we can better understand and treat physical and psychological disorders commonly experienced following cancer treatment. He has presented his work on sexual health at international conferences, and has published extensively in the field of health psychology and behavioral medicine. Please join me in welcoming Dr. Zhou.
00:53 [Dr. Zhou] Thank you so much, Thom. I am privileged to have this opportunity to chat with everybody today about sexual health. This is something we certainly see a lot of in our clinic with respect to it being such a prominent issue. I want to talk a lot about why it's something that is so vastly ignored, and the idea to be able to have some time to answer questions at the end as well. I already see that somebody has presented a question, so feel free to post those as we're going.
Now, the issue of sexual health after transplant is not novel. Probably the earliest that there was a good study of sexual health issues after transplant was done in 2013. So, we're talking about something that for eight or so years has been on the radar of scientists and clinicians. In this particular study, which was done in Switzerland, they looked at issues for men after they had received a stem cell transplant. What they saw was in 155 males at a year plus after their transplant, that one in five had noted that their genital skin had changed. 13% had inflammatory changes to the skin in their genitalia, suggestive of there being a more impactful issue. These included redness, rash, narrowing of their urethra, or in 1% of the group, multiple issues that they had experienced. So if this is the challenge that you or a loved one is noting, rest assured that you are very much a sizable proportion of post-transplant patients. You are not alone.
Common Sexual Issues for Men After Stem Cell Transplant
03:01 In terms of other general literature, what we know of with respect to treatments that you may have endured, perhaps in addition to transplant, such as chemo or radiation, these are all things that can certainly impact sexual health.
We know that when it comes to transplant, these are things that of course you're very familiar with. Hair loss, which affects your body image. You know very well that for the first 100 days, and certainly well afterwards, there is the concern of being in a place or an environment where your partner or partners may be exposing you to infection risk. Of course GVHD, especially if we're talking about GVHD symptoms that disrupt your sexual well-being. It's really hard, for example, to feel attractive if you're feeling nauseous, or it's hard to kiss somebody if you've experienced mouth dryness.
Chemotherapy Sexual Side Effects for Men and Women
04:11 Similarly with chemotherapies, there's good evidence to suggest that for men, they lose interest or libido. They also experience ED. For radiation therapy, depending on where you receive that, it's very possible that there is nerve damage. It's also associated with considerable fatigue, which of course as you can imagine impacts somebody's willingness to engage in or enthusiasm for sex.
But I also want to highlight that these issues aren't specific to just men. There are a number of these similar issues in transplantation that absolutely can also occur for women. Which isn't to say that if your partner is a female, that she has to have had a history of transplant, to experience, and maybe it's to say that there is this common etiology for a lot of these issues that are things that can be addressed not necessarily with a prescription or with a device, but with how you and your partner approach the issue, which we'll touch upon later.
Changes in Sexual Activity for Men After Transplant
05:32 Now, I show this slide so that I can drive home the point for individuals on this call to see that in men who were sexually active, so this is excluding men who are no longer sexually active after BMT, these are men who are reporting sexual activity, which means that this is a subgroup, that a vast proportion have issues. One in three report that they have some issues with their libido. More than half reported that they've lost their ability to feel sexually attracted to their partner. Half experienced some form of erectile dysfunction, and about one in five had noted that they actually had problems with their orgasm. Be it, they had dry orgasms, orgasms that were not as intense, premature orgasms. There was something going on.
Lower Self-Image for Men After Transplant and Erectile Dysfunction
06:38 Now, something that I alluded to earlier was self-image. I talked about hair loss as something that might drive this. But there is certainly much more than hair that plays a role here. Imagine that you are one of the patients who feels incredibly fatigued after BMT, and as a result, what you don't want to do is engage in any sort of intimacy or sexual event with your partner. This may certainly, and we see this all the time, affect how that male feels about their masculinity. In part, their identity is somewhat defined sometimes to be a man and to have sex or to pleasure their partner, or to be able to develop an erection.
These are all things, if they are damaged, individuals may feel like it is a significant loss, and it is a very real loss. I remind men all of the time that your ability to develop and control an erection, for example, is something that you have done for 10, 20, 30, 40, 50, 60, 70 years, and to be unable to do what you could do on command as you historically have, is a true change that could be a loss.
As a result of many of these issues, have conversations. Not just with your partner, but with your professional team. With your doctors at the hospital, your primary care. It's awfully difficult, which to me makes this particular topic and this particular venue doing this remote almost better that need this online, or I'm sorry, in person, in part because the anonymity here allows individuals to think about these, and hopefully see that they're not alone, and afterwards be able to engage in conversations with their providers.
Finally, we know that it's a perpetuating cycle that you're experience. If you feel bad about yourself and how you look, you may not want to have sex, which makes you feel worse about yourself, which makes you not want to have sex even more, and the pattern continues.
Frequency of Sexual Activity After Transplant
09:06 Now, in terms of what proportion are in this particular population, we see that six months prior to transplant, about six out of every 10 men reported that they were sexually active. This is approximately once every two weeks. At three years post transplant, what we're finding is that 20 percent fewer of these men are reporting being sexually active. Which means, again, about one in five men post-transplant are actually so affected that they're not even having sex.
Lack of Medical Intervention due to Taboos Around Sexual Health
09:46 Now, all of this is really to me quite atrocious because we live in this culture of both sex and violence. Everywhere you go, sex sells, and it's slapping you in the face. Whether it be on billboards, on television, on television shows and movies and music. It's really hard to avoid. Yet, at the same time, it's an elephant in the room.
I often want my patient to stop and think, "When was the last time that your transplant team asked you what your sex life was like?" When was the last time that your primary care asked you what your sex life was like? I'll be honest, I would be shocked if there were more than a handful of people on this call who can say, "Yeah, you know what? Every time I go into the hospital, they ask me."
A lot of this has to do with the fact that providers don't know how to respond. It's something that is absolutely, "Oh." It just seems quite taboo. How do you tell a man who's coming to you, hoping that you, of course, will save his life because you are his transplant doctor. How do you tell him, "Well, I can't develop an erection. My partner and I haven't had sex in six months. I have no interest in sex anymore." It almost feels, I guess, almost challenging to think about because this is the person who has intentionally saved your life after the transplant.
Sexual Health and Quality of Life
11:55 Yet, we know that sex matters much more than just being a pleasurable activity. It's not just that it feels good physically, but it's very much is something that for many connects them to their partner, and it affirms who they are in their romantic relationship, or if you're not with a romantic partner, then who you define yourself to be. We know from considerable research that if you struggle with sex, that my goodness, this impacts the overall quality of your life. Which should not be a shock to anyone, but if we go back to the last slide, that it's this elephant in the room that nobody talks about, it just seems so disproportionate.
Factors which Lead to Poor Sexual Health for Men During and After Transplant
12:47 Now, I want you to think about both yourself and your loved ones, if you're on this call because of a partner or somebody you know. There are a number of risk factors for poorer sexual health. One is time since transplant. The closer you are to transplant, the more likely it is to be an issue. Another one is the occurrence of a comorbidity, particularly pain. It's a big one. If you're experiencing chronic pain, you are absolutely struggling with the desire and the effort to seek sex.
Third, mental health issues, particularly depression, significantly can affect libido.
Fourth is age. The older you are, the more likely you are developmentally to naturally start to experience sexual health issues.
These aren't certainly validated statistics, but a good rule of thumb is to think about increasing every decade of life that there is about 10% more individuals, men, of course, who are struggling with some form of erectile issue. Dysfunction, for example. If you're thinking about a 50 year old, maybe about 40 to 50% of men will actually have some issues with being able to develop and sustain an erection when they want, how they want. That might be 60% when you're 60 and on and on. Finally, relationships can struggle with communication. Prior to the transplant had issues, means that after the transplant, that number's a factor.
Treatments for Sexual Dysfunction After Transplant
14:40 Now, let's take a step back from what's going on to what do we think about how do we fix the issue? It's important to me that this title of the talk is sexual health and not just health. Because sex as we typically conceive of it, is often if we just define it is just penetrative intercourse, and we know that that's not actually all that sex is, which is important for others to think about.
Sex truly is a complicated recipe for success, and in this case, I know that the pharmaceutical companies will make it out to be like you simply pop open a pill, and then bada bing, bada boom. No problems exist. You're just able to have sex. Everything will be hunky dory. But we actually do know that that's not necessarily the case. Sex requires multiple elements, and if one of these elements is out of line, if one of these elements is askew, we run into significant issues potentially.
So first is, you have to have the equipment working. There's a function piece here. Second of which is, you have to want the equipment to work. There has to be a desire piece. The third piece is, who we're going to use the equipment with? There's a question of what the relationship is like. When all three work in harmony, boy oh boy, that's a great day, and when one, two, or three of them are de-synced, that is where we need to start thinking about what to do.
Therapy to Address Sexual Function after Transplant
16:23 Now if we just start off with the function piece, I want you to think about this as an increasing severity of treatment, meaning that you don't want to start with third line therapy, you want to start with first line therapy. So first is wanting to consider modifying reversible causes. So this is at the top here. Medication changes, lifestyle modifications, or hormone replacement. So that could mean things such as increasing physical activities, so you lose weight, so that your heart is more able to pump blood where it needs to go.
Lifestyle Changes to Benefit Sexual Health
17:07 Eating healthier in order to improve your overall well-being and increase energy levels. In some men, after BMT, between six and 24 months, it's not uncommon to have testosterone replacement therapy. Be it the use of skin patches, a topical gel, or an injection. These are things that we think about as being front line. Many of them, especially things like being more physically active, eating healthier, are things you want to do for many reasons, but knowing that improving your personal assessment of your appearance, your confidence. Improving cardiovascular health, these are all things that also have the side benefit of improving sexual health.
Vacuum Medical Devices for Erectile Dysfunction
18:00 First line therapy, if we go back to that slide here, and you see here, that's where we're at. First line therapy. These are mechanical devices that assist with your ability to develop and maintain an erection. A vacuum erection device is simply that. You put an airtight cylinder around your penis. You'll want to make sure that you have a close seal, so this will require potentially for some men, trimming or shaving the hair around their penis. What happens then is you suck the air out of the tube, that vacuum creates blood flow into the penis, thereby developing an erection.
Before you put on the vacuum erection device, you put a ring around the base of the penis, which prevents blood from flowing out immediately, which is what helps you maintain the erection after its use. Keep in mind that the blood that actually gets pumped in during this phase is venous, not arterial blood, which means it's not necessarily warm or hot in the touch, if you're familiar with standard erections prior to transplant. It's cool, not cold. Just cooler, and it's something that surprises some men. It's quite an effective, and quite a low cost device. There's not a gold standard for the device. It’s about finding one that fits your penis, that fits your budget, and there are plenty that you could hospital for online.
Oral Medication for Erectile Dysfunction
19:45 Next are things that are quite commonly advertised, as you have seen, and they're oral agents. These medications all essentially operate on the same principal, which is that they allow more blood flow to your penis which thereby increases your ability to develop and maintain an erection. What's important here, as well as with the vacuum erection device is that you'll see none of these guarantee an erection because you still need to be stimulated, or you still need to want to be stimulated.
So if you decided to go out and get a sample of Cialis, take triple the dose for fun, well, it wouldn't be great for your heart, but also, if you're just sitting there, and you're having a terrible day, and there's no one of interest, it's quite unlikely that you will just develop an erection. So it doesn't cause the erection to occur, it just makes it more possible. Also it's important if you are an older male who may have had prostate cancer, may have had prostatectomy, or if there was any nerve damage for other reasons, these devices or these medications will not work. Also, the bigger concern for a lot of men is that some of these medications can be quite expensive, so they're not sustainable long-term. They're also often not covered by insurance.
Injection Therapy for Erectile Dysfunction
21:28 Line two, or second line therapy for men who may have failed first line therapy is injection therapy. It's exactly what you think it sounds like. However, what I promise to all of the men who are on this call, cringing at the thought of putting a needle at the base of their penis, is to say, this is not something that you buy off of Amazon and you try to figure out watching a YouTube video by yourself. This is something that is prescribed. This is something that you will go into a doctor's office and have somebody trained in injection therapy show you how to safely inject.
Satisfaction with this is quite high, actually. Because you are delivering the very active ingredient that you see in the oral medications specifically to where you need it to go, you actually reduce some of the side effects that men have when they take, say, an oral agent. For example, you have fewer headaches, less heart racing issues, less flushing of the skin and of the face, and because you're delivering it right to where it needs to go, it is more effective than the oral agents. So something to consider as a viable option if you fail first line function therapy.
Another option is transurethral treatment. This is where you take a same drug as used orally. You take a pellet of it, and you insert it into the urethra. It is then absorbed through the wall of the urethra, and give you an erection within a matter of minutes. Again, it sounds incredibly challenging, potentially, but this is something that will be taught to you by medical professionals, and satisfaction is quite high.
Prosthetic Implantation for Erectile Dysfunction
23:54 Third and final line treatment are prosthetics. These are typically reserved only for men who have completely failed all other forms of treatment, because this is the only one that is actually completely irreversible. The other ones you can stop. This is one that, should you choose to go down this path, you must continue it. There is no going back. This is a device that is surgically implanted under your groin muscles, and imagine being able to push a button, which then creates an erection. It does mean that a natural erection is no longer possible, but again, for men who have chosen this option, they report satisfaction, very much after the fact.
Loss of Libido for Men After Transplant
24:58 Now, I'm going to transition away from the function, the equipment piece. I want to talk a little bit about this desire piece. The fact that you might have lost your libido is incredibly common, and very frustrating, especially if you're used to a lifetime of this. Now, certainly with some men with low testosterone, you may need some replacement therapy, which we had talked about earlier. That's something that of course you'll want to talk about with your physician.
However, if testosterone is normal, and there's not clear that there are other mental health issues that often reduce desire, like I was saying, like depression, this can be quite frustrating for other men. It becomes this self-fulfilling prophecy where if you don't use it, you lose it. Because you're not having sex, you'll feel less likely to desire sex, which makes you not want to have sex, which continues the pattern.
So as I was saying, it's important first to consider why that might be the case. This self-reflection is critical. First understanding, is this related to things that we can treat medically? Like, say, with testosterone replacement. Is this because I'm incredibly stressed? Maybe I've been working from home for the past six months due to COVID, and I'm really finding it challenging. Or perhaps you have to go out into the world to work right now, and you're finding it quite stressful because you're worried about exposure to coronavirus.
Could it be because you're fatigued? Maybe you're working two jobs, and as a result of that, you just don't have the energy. I mentioned depression already. Ask yourself, "Do I feel like I don't have this desire because of how I look now? Am I different than before? Am I dissatisfied with my appearance? Am I experiencing chronic pain issues? Are there medications that I'm taking, particularly anti-depressants that might reduce my libido, and if so, we need to talk with my psychiatrist."
Finally, this is the one that I want to transition to now which is, "Am I really struggling with my partner?" I know that I should want to be with them after they went through my transplant with me, but gosh, there are these other issues that we really never got around to talking about. Something to think about.
That relationship piece is important. Now, men with erectile dysfunction often pull back physically. if you experience an inability to develop an erection a single time, you may subsequent to that develop significant anxiety entering sexual encounter and worry, and you know what happens if you're worried about not being able to develop an erection. You're not going to be able to develop an erection.
I think about it like this. If I said to you, and I know this sounds like an absurd suggestion, but imagine you have to walk out into the middle of a football stadium with 80,000 people and develop an erection. I know that sounds crazy, like I said. But the thought of that should fill you with anxiety and dread and of course, you and I both know you're not going to be able to do it. Even if your life depended on it.
Well, in the confines of an intimate relationship, that pressure truly isn't that different from having 80,000 strangers in a football stadium looking at you. Because you have one person who is looking at you, expecting you to be able to do something, and if you can't, it feels as absolutely overwhelmingly crushing. But what the partner often sees relates to the second point on this slide, which is, they might see you not wanting to have sex and interpret that as their fault, so they pull back. If they pull back, it might make you feel like they're not attracted to you, and you see where this actually leads.
Now, I want folks to at least think up to this point. What are some things that you have done? What are some things that you have done that have been both good and that has worked for you, and what are some things that you have done that are bad, that didn't work for you? This is such an important piece to think about because there might very well be things that you've done that others have tried as well. It might work its way into the questions, and I hope that people do bring this up.
In terms of what we typically would do in a clinical setting, if we're talking about the function piece, we would walk patients through those first ,second, and third line therapies that we talked about earlier. The desire and relationship piece. This is where it's critical to consider this as having the opportunity to be a new person in your relationship. The own relationship you had with your sexual function the way it was may not come back. Even if it weren't for transplant, as I mentioned earlier, as men get earlier without any medical issues, their ability to develop an erection declines.
Age and Changes in Sexual Health After Transplant
31:05 If you were to ask a healthy 18 year old what his ability to develop an erection looks like, versus a healthy 80 year old, what his abilities to develop and maintain an erection looks like, it's very different. Even if both are completely healthy, it's very different. So what we often attribute to transplant may simply be an aging process. So this new chapter, whether it be a result of transplant or aging, in most things like shifting your focus to simply penetrative sex to pleasure. By that I mean, if you think about, for example, when you first developed a sexual relationship, and the first time that you kissed a partner, or that you had your hands under a partner's clothing. These are the kinds of things that I presume when you first started, were incredibly exciting and novel, and in and of itself, might have brought you to climax.
Fostering Intimacy in Your Relationship After Transplant
32:11 Yet, as we get older, as our relationships mature, well, we tend to focus a lot on just penetration. You have to be sexed to orgasm, and that's it. We've lost the mystery and the magic of all the things when we were 15, 20, 25, led to penetrative sex. It's important then to actually then shift the focus from the pressure of needing to perform penetration to all of the other stuff that actually felt pretty darn good.
In addition, consider opportunities to develop intimacy through conversations. This could be something in the 21st century, like sexting a partner. These are things that you are used to. That's actually a good thing, because if you continue to do what are you are used to, you are going to repeat the failures that well, up to this point, have defined you.
Consider things like creating a desire diary. Little writing down things for you and your partner that you are interested in doing that you might have these fleeting thoughts. They're not thoughts that occur at the right time. You might be doing something like driving the car down the highway, and have a thought about your partner. Well, you can't do anything then, but what you can do, you can write it down. You can send them a message. Let them know, so that you know, and you remember what you may want to try with them later.
Self-stimulation. This is something that for a number of our patients, they find to be taboo in a romantic relationship. Yet, at the same time, it's one of the pieces of pleasure that absolutely can get an individual started. This might involve written, visual pornography. This might be finding something that you really, truly are turned on by, and using that as your gateway to engaging more with your partner. So depending on what might appeal to you, I would encourage you to consider and trial some of these particular things. Importantly, you don't have to do them all. It's about truly what you are intrigued by.
Resources for Cancer and Male Sexual Health
34:49 Now, I want to leave you with a couple of resources. Cancer.org has an excellent website that describes how cancer can affect your sex life. Sexhealthmatters.org website is wonderful as a resource. If you just google the paper that you see there, it does a wonderful job of summarizing much of what I talked about, and they provide you with access to other scientific literature that talks in more depth than what we could get into in this conversation, if this is an area of interest.
I do appreciate the opportunity to talk about a very sensitive subject with the group, and I'm really looking forward to any questions or comments that you might have.
35:53 [Moderator] Thank you, Dr. Zhou. That was an excellent presentation. We will now take questions. As a reminder, if you have a question, please type it into the chat box on the left side of your screen. Our first question is a topic that you did touch on, and covered, but again, this says, "I am five and one half years past transplant. No M spike activity. Am 72 years old and lost all my libido. Is this a common occurrence, and do you have any suggestions as to treatment?"
36:32 [Dr. Zhou] A great question, and as you were mentioning, Thom, we touched upon many of these elements. Specific to you, I would think at 72, there's a couple of questions you'll certainly want to consider. In terms of your physical health, making sure that there are elements that you are managing, if there are other medical issues. Similarly with mental health, you want to make sure that you are thinking about that in the context of your libido.
37:05 [Dr. Zhou] Also the question would be in terms of your partner's status. Are you currently partnered? Are you seeking a partner? If you are currently partnered, are there issues with him or her? If you're not currently partnered, could this be related to the fact that you may not be currently partnered? I guess if you're hearing the sense of my response to you is, there's not a stock answer for many of these questions because it does depend on your actual situation, and that's why I'm encouraging all participants to reflect and think about your unique place, and what challenges might get in the way for you, and to then seek appropriate courses of management for your specific concerns.
37:56 [Moderator] Thank you, Dr. Zhou. Here's another question having to do with permanency. Are these issues permanent? Are you ever able to go back to normal sexual activity, like pre-transplant?
38:10 [Dr. Zhou] That's a great question. I think my answer to that is going to be the question of what does it mean to be normal? Now, I can't imagine that many of us are capturing methodology and experimentally what our baseline sexual function is pre anything. It's 2020. I could say, "Well, what was your sexual function pre-COVID in 2019?" It's really hard to recall. You didn't measure how hard your erections were, or how frequently you desired sex. It was just something you typically didn't think about.
38:50 [Dr. Zhou] By that I mean, if the goal is to reach some aspiration of what life was like pre-transplant, pre-COVID, pre whatever, you're likely shooting for a target that you're going to land short of. Not because you don't get there objectively, but because we tend to idealize the past. "Oh, life was so amazing before this transplant. My sex was perfect, or much better than it is now." While it certainly might have been better, it might not be as much of a difference as what our perception is. That's just how our brains work. So, I would argue, it's not about trying to figure out, can we get back to pre-transplant levels of whatever the case might be? It's to say, "Okay, we are post-transplant. What do we do now?"
39:51 [Moderator] Thank you, Dr. Zhou. For the participants, we are out of questions in the queue. We still have some time available to ask questions to Dr. Zhou. If you do have any questions, please type them into the chat box on the left side of your screen, and if we get some more, we'll post them to Dr. Zhou and have him answer them.
Okay, we have another one, just came in. It's about medication. I'm currently taking two different blood pressure medications daily. I am also, due to bone pain, bone marrow lesions, taking as needed four to 15 mils of oxycodone daily. I'm 67, BMT was three and a half years ago. I know opioid can cause dysfunction, but will blood pressure medication cause ED?
41:01 [Dr. Zhou] This is a wonderful question to ask the prescriber. I think given the complexity of the issues that you are reporting, it is something that I strongly encourage you raise to your medical team and say, "Look. I need to manage my blood pressure. This is what I'm being prescribed. One of the concerns I have is erectile dysfunction. Not only is it likely to be the case, but also, if yes, how can we balance this? Because of course you want to make sure your physical health is as good as it can be. But at some point, the trade off may or may not be worth it for you in terms of your erectile ability. So that is definitely something that I encourage you to contact, now, while we're talking. Shoot a message to your provider or set up an appointment for a follow up.
42:06 [Moderator] What is the procedure for determining testosterone level? Is testosterone replacement safe?
42:14 [Dr. Zhou] You end up going to the doctor, get a blood test done, and depending on your other medical issues, it can be entirely safe, especially if managed properly.
42:29 [Moderator] Another question, does exercising help sex drive?
42:32 [Dr. Zhou] It certainly helps many facets that relate to libido. So we have to look at libido a really complicated problem. It's not something for which there is a direct input/out relationship, meaning that it's not like we can push a button on our knee, and suddenly we want to have sex. If there was a drug for libido, I promise you that the pharmaceutical industry would have made billions on it, but it doesn't exist, meaning the physical activity piece that you talk about. What's it going to do for you?
Well, it's going to get you out of the house, which is going to improve your mood. It's going to get you perhaps do things like eat healthy, and as part of a healthy, balanced lifestyle, lose weight. Might that improve your ability to develop a better erection? Absolutely. Might that make you look better to yourself and to your partner? Certainly. Are these all things that are going to make you and/or your partner want to engage more in physical intimacy? Very possibly.
So it has to be something that you think of as, is this going to benefit me overall, and if so, it's likely not to hurt libido, and can certainly help libido. But to answer your question succinctly, there's no data to suggest that if I go out and play basketball three times a week, I'm going to come home and suddenly want to have sex every day. But that's being dismissive of the fact that it can truly impact your libido, just in a more roundabout way.
44:19 [Moderator] We have a question here, or a comment, a question from a provider. Says, "Wonderful presentation, and thanks for discussing a topic of great importance but little emphasis. I'm asking as a provider, how do you suggest starting the discussion in the clinic? With the partner present?"
44:38 [Dr. Zhou] Thank you for the compliment, and you're right. It is very much ignored, and such an important topic. Now, I find that this is something that depending on the relationship you have with this patient, you're as the clinician best suited to be able to judge whether this should be something that is broached with or without the partner. There are certain cultures, certain individuals in which it's just unthinkable, and for some in which it's absolutely what you should be doing because the partner is a part of the solution as well.
I typically like to normalize the event, which is to say, "Oh, you know what, John? We're going through a list of commonly experienced issues for our transplant patients. Just want to see how you're doing. For example, are you struggling with X, Y, and Z," and one of the items could be any issues concerning your sexual relationship with your partner. Something they may say no to. I would want to touch base upon that moving forward, every couple of months, since it may take time for them to warm up to the idea of talking about it, or it might develop well after you first asked them.
Another alternative is to have this son screening questionnaires that you give to patients when they come into clinic. A checklist item, are you struggling with depression, or are you struggling with anxiety? Are you struggling with sexual health? Just a yes or a no. You won't pick up everybody, it's not going to be that sensitive, but will you pick up more than you would if you didn't ask that? Absolutely.
46:24 [Moderator] Next questioner asks, "Sometimes I can get an erection, but it seems to only last for a short time. Not TE, just goes soft. The blood drains out. Is there anything that I can do?"
46:44 [Dr. Zhou] Well, it's a good question. I think this is a case where, and the question is when you say sometimes, is this intentional? Meaning are you masturbating? Are you with a partner? If you're able to develop an erection, and your cardiologist doesn't think that you may have issues, it could well be that that focus on the fact that you have an erection and the fear that you might lose it is what's causing it to stop. It may be the case where that's your challenge, and it could be the case where maybe you are one of the many men who struggle with some erectile dysfunction, and perhaps one of the treatments to function that we talked about could be something that you explore.
47:28 [Moderator] Another questioner asks, "Using Viagra 50 milligrams once a week works well for me. Is that okay long term?"
47:38 [Dr. Zhou] Also a great question for your prescriber. We do know that Viagra's been around for a while now, and there's not a lot of data that suggests that there is considerable risk to the use pattern that you're describing. Again, it depends, of course, on things like your heart condition. So these are all things that you'll want to repeatedly be checking in with your prescriber, that I know that nowadays you can go online, and there's a million different websites where you can buy Viagra through a doctor that you never see. Why that certainly is not a bad idea from a cost perspective, you do lose the ability to ask these questions, but to make sure that your overall health is being monitored.
Which isn't to say that they're a bad outcome. It's to say, you definitely want to have routine contact with a physician who you trust, to make sure that you're doing things the right way for your overall health.
48:41 [Moderator] How about vitamins? Do they help?
48:45 [Dr. Zhou] That's a broad question. I don't know of a good vitamin that has been proven in what we consider gold standard research to improve erectile function or libido. There's a very real placebo effect to both, which is to say that if you take, oh, I don't know, you go out and take a Costco multivitamin, and you are confident that's what helps you develop an erection, well, it truly might because it relieves the anxiety about developing an erection. If you believe that that tablet, at two cents a pop, helps, then by all means, continue taking it. But in terms of recommendations for other over the counter supplements, not wonderful data to tell you that one or the other is more helpful.
49:36 [Moderator] As a 25-year-old who is anxious to have sex, and is close to a year close transplant, what methods should I stay away from?
49:48 [Dr. Zhou] I'm not sure I understand the question in terms of what methods. If you're talking about whether it's vaginal sex, anal sex, oral sex, et cetera, then this is a perfect question depending on your medical presentation to ask your team about. They would be the people who are best in position to say, "You know what, John? You are a high risk person, you can't do anything, or John, you're quite a low risk person. In month 14, you're welcome to do X, Y, and Z." But this is actually the kind of of thing that I wished every single transplant team talked to their patient about, just given how obvious of a question it is, and yet we typically don't end up having the answers we need.
50:40 [Moderator] A question about specialty. What type of doctor is best to treat ED?
50:47 [Dr. Zhou] So since I live in Boston, it feels like there's a specific ED doctor on every corner, so if you happen to live in an area where you do have a wealth of medical providers, there are literally clinics who specifically do nothing else. If you do happen to live in a place like that, a good starting point would be having a conversation with your primary care, since they are likely going to be managing your care, and potentially you may be working with a urologist.
Here in Boston, most of the specialists who we see who do this kind of work are urologists by training. So in their clinic and their offices, this is where they'll have other providers who do the things like injection therapy, et cetera, that we talked about earlier.
51:37 [Moderator] Is there a counselor type that's geared to help with sexual relationship issues brought on by cancer treatment?
51:47 [Dr. Zhou] I would reach out to the cancer center. This is a case where you'll want to have somebody who is familiar with the work. Somebody who's familiar with the experience. If that's not the case, a sex therapist may be somebody to consider. If you simple google sex therapist, there are a number of them across the country, and it would be somebody that you would want to reach out and interview and say, "Look, many of my issues developed post-transplant, have you seen patients like me before" something to explore.
52:22 [Moderator] I'm 10 months post-BMT, I'm on testosterone replacement therapy, but still unable to maintain an erection. Is it possible to get better, or is this as good as I will get?
52:35 [Dr. Zhou] That's an excellent question to think about with a specialist. So if you're on testosterone replacement therapy, presumably you have already worked with somebody on your medical team who has evaluated you, realized that you were low testosterone. That would absolutely then be a reasonable place to start and say, "Look, I thought that this would make my ability to develop and sustain an erection better. It is not. What other aces do you have up your sleeve?" We've talked about a number of those.
53:07 [Moderator] Last question in the queue, I did go to a sex clinic, and he said because I had MM that he didn't recommendation me doing testosterone therapy. Now, I hear you say differently. What is the case?
53:20 [Dr. Zhou] I'm certainly not recommending that you start testosterone therapy. I am saying that this is something that is commonly used in men low T post-transplant, given your history, if this is advised against, I would absolutely listen to who you saw. It's a potential option. For example, you should not be taking Viagra if you have had a history of strokes and heart attacks because these are very, very serious cardiovascular issues, and we know that by increasing blood flow, you risk maybe exacerbating these issues. So understand that this is not a, you should be doing this. It's a, you should be considering this, and wanting to make sure that you manage this with your medical team appropriately. So please, certainly listen to what your providers are telling you.
54:18 [Moderator] Okay, well, that was our last question. On behalf of BMT Infonet and our partners, I'd like to thank Dr. Zhou for his very helpful remarks, and thank you, the audience, for your very excellent questions.
This article is in these categories: