Women's Sexual Health after Transplant

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Women's Sexual Health after Transplant

Wednesday, May 3, 2023

Presenter: Cristina Pozo-Kaderman PhD, Dana-Farber Cancer Institute

Presentation is 40 minutes long followed by 17 minutes of Q & A.

Summary: Many women experience sexual problems following a stem cell transplant. A variety of medical and psychologist issues contribute to problems with intimacy and sexual health, but effective treatment options are available.

Highlights:

• The impact of a stem cell or bone marrow transplant on sexuality is often neglected because some healthcare providers are not comfortable talking about sex with patients. Patients, too, are sometimes reluctant to raise issues about sex with their healthcare provider.
• Genital GVHD can cause vaginal dryness or irritation and is often underreported. Left untreated, it can have serious long-term consequences. Care should also be taken to distinguish between vaginal dryness due to genital GVHD or premature menopause.
• Transplant-induced premature menopause can be triggered by steroids which cause hormonal changes and can happen very quickly. Common symptoms of premature menopause include vaginal dryness and tightness, reduced elasticity,  change in blood flow, and severe hot flashes.

Key Points:

(07:59): Chemotherapy for both men and women, regardless of age, impacts a person's sexual life.

(08:45): Graft-versus-host disease affects how one feels physically and emotionally and can impact sexual health.

(09:41): Steroids use to treat GVHD can change physical appearance, emotions, and affect sleep in ways that diminish an interest in sex.

(11:42): Genital GVHD can cause vaginal dryness or irritation and is often underreported.

(15:58): Stem cell transplantation can cause hormonal and body image changes that negatively impact sexuality.

(24:52): Vaginal dryness can be treated with systemic hormones as well as topical treatments.

(29:37): Loss of vaginal elasticity can be treated with vaginal stretching and by seeing a specialist in pelvic floor physical therapy which can reduce pain with sexual intimacy and the anxiety it often causes.

(34:53): Sexual desire and intimacy requires communication between partners. It is not automatic.

(37:33): Approaching intimacy with fun and openness can help overcome sexual difficulties.

(39:11): Consulting a psychologist may also provide comfort with body changes, self-image, and sexuality.

Transcript of Presentation:

(00:01): [Marla O’Keefe]:  Introduction. Good morning. Welcome to the workshop, Women's Sexual Health after Transplant. My name is Marla, and I will be your moderator for this afternoon.

(00:10): It's my pleasure to introduce today's speaker, Dr. Cristina Pozo-Kaderman. Dr. Pozo-Kaderman is the Director of the Young Adult Program and Director of Interprofessional Education in the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute. She has spent over 30 years working as a clinician, administrator, and educator in the field of psychosocial oncology, and particularly with patients undergoing BMT. She has served on numerous professional and community organization advisory boards, with a commitment to serve and provide community education and support. Please join me in welcoming Dr. Pozo-Kaderman.

(00:56): [Dr. Christina Pozo-Kaderman]: Overview of Talk. Thank you so much, Marla, for having me here today, and I'm so excited for this presentation because it's something that I feel so strongly about. And as part of the introduction, I always like to just share a little bit about myself. I've worked in the field of psychosocial oncology for more than 30 years, and early on in my career, I started asking, as part of my intake along with symptoms of depression, if patients had a change in their sexual life. And I discovered all those years ago that often patients would say that I was the first person to ask them about their sexual life. And then they would say that part of the reason they were feeling anxious or distressed was because they thought that "Yes, I'm going to survive from this lymphoma or leukemia, but am I going to have to deal with this change in my sexual life for the rest of my life? So, I'm going to survive but have this major change."

(01:58): And I knew enough to say that "Hopefully, the symptoms that you're experiencing from the treatment, particularly in the sexual realm, will improve." But it was at that time that I decided I needed to get further training. And so, for more than 25 years now, I have seen patients for sexual health and provide sex therapy. So, it's something I feel very strongly and very passionately about.

(02:26): So, let me talk about the learning objectives for today. We're going to talk about how diagnosis and treatment can impact sexual changes. We're going to talk about the common sexual changes experienced after transplant. Strategies to help with these sexual changes. And then the barriers for patient education on sexual changes. So, we're going to start off with those barriers.

(02:52): There are several barriers to getting information about the impact of stem cell transplant on sexuality. So many times, people will say to me, "Why hasn't anybody addressed this with me before? Why is this the first time that I'm getting information about my sexual life?" And I think there's many variables.

(03:05): We know some of this from research, and some of the clinical experience of talking to healthcare providers. Initially, the focus is really on treatment and saving your life. And you all know that. At the moment that you get a diagnosis, the immediate thought is, "Am I going to die?" And so, everything, in terms of resources and focus, is on starting your treatment and saving your life, and that makes sense. You're not going to be thinking about sex a whole lot at that point.

(03:33): Now, once treatment  starts, and particularly towards the end of treatment, this is when you do start thinking about it more, as you're trying to reintegrate back into your life. And I think what often happens post-transplant is that there are so many medical issues going on that the visit times are limited. And so, the sexual issues are not addressed. Limited time for visits. You may be dealing with GVHD. You may be dealing with multiple other medical concerns, and the sexual part does not become a priority.

(04:13): Healthcare professionals are often not comfortable talking about sex with patients. We also know that healthcare professionals often do not feel comfortable talking about sex, and they will tell us, "I don't even know how to bring it up. What do I say? How do I ask?"

(04:25): Now, even when we provide education and training to help the healthcare professionals ask and bring it up with patients, the next thing they'll often say is, "You know what? Okay, I ask, but now they're going to bombard me with questions, and I don't have the answers. And not only do I not have the answers, but I also don’t have anybody to refer them to."

(04:47): So that makes it really challenging, because what do I do with the information that they're asking about? And I would tell you that that's even the case at a place like Dana-Farber, where we have a dedicated sexual health clinic. But even there, it often takes time for us to get people referred to us because, again, it's not that priority.

(05:11): I see a lot of young patients, early 40s and younger, and many times the parents are present for visits and follow-ups post-transplant. And so, that makes it really uncomfortable for the healthcare provider as well as for the person, the patient, to ask questions.

(05:29): Now, I will say we've made great advances in addressing fertility before treatment starts and even afterwards. But the sexual health component is separate from fertility. They interact, of course, but it's a separate issue. And that's where we're still not quite where we'd like to be.

(05:48): When discussing side effects of stem cell transplantation, potential changes in sexual life should also be mentioned. So, my hope is that, in the future, when you are having a discussion on possible side effects from treatment, when they tell you that you may have fatigue or nausea, hair loss, they'll say you may have changes in your sexual life. And I think, by just planting that seed early on, makes it comfortable to have those discussions at a later point. And I think that, then, not only the providers but you, yourself, as a patient, will feel more empowered to ask those questions.

(06:21): When evaluating sexual problems after transplant, the healthcare provider needs to understand both the medical factors that could be contributing to the problem in addition to psychological issues. So, I wanted to talk a little bit about today about how I approach seeing someone for a sexual health consultation. So, we follow a biopsychosocial model of evaluation and care. I obviously see people individually, and when they are in a relationship, we'll often bring in the partner as well. Today, we'll be focusing much more on the bio part, a little bit on the psycho and the social part.

(06:52): But again, those parts of a person's life are very specific to them, and that's where that individual work can really make a difference. So, when we're looking at somebody, and they come in, we want to look at the biological part, which really means, more than anything, what's happening to them medically. And depending on the type of cancer, then you're going to look at what treatment they've gotten. And in this case, you're going to look at whatever treatment came before transplant, as well as transplant, and take a look and see what factors, medically, could be having an impact on you and on your sexual life.

(07:32): We're going to look at other medications and other medical concerns that you may be coping with as well. And then there are particular issues that also may be interacting with your life, such as fatigue or pain that are physical but are also going to have an impact on your psychosocial part. And here we're talking about the more psychological issues that we all deal with.

(07:59): Chemotherapy for both men and women, regardless of age, is going to have an impact on a person's sexual life. So, when we look specifically at sexual changes after transplant, and we're going to look more at the bio part, we know that chemotherapy for men, women, regardless of age, is going to have an impact on a person's sexual life. Rarely does it not. The treatments are rough. They're going to have an impact on your level of energy, on symptoms that you feel. And if you think about it, even before you ever were diagnosed with anything, if you're feeling sick and you're not feeling all that well, even with a cold or really bad allergies or a GI bug, you're not feeling that sexual. So, when you're going through treatment, and you're feeling lousy, it's hard to feel sexual. So that's part of it.

(08:45): Graft-versus-host disease affects how one feels physically and emotionally and can impact sexual health. Posttransplant, there's graft-versus-host disease. Many people are going to have to deal with that post-transplant. It's expected. And so, when you start having those symptoms, depending on the system in your body that you're having the graft-versus-host symptoms from, you're going to also have that impact how you feel physically, emotionally. If you have GI GVHD, you're going to feel lousy, and you're not going to probably eat as well. And that's going to contribute to fatigue, and that's going to contribute to you losing weight. And so, again, how that has an impact on how you feel about yourself in terms of your body image and how you look at yourself. And so, all of that is going to have an impact.

(09:41): Steroids can change physical appearance, emotions, and sleep in ways that also diminish sexual feelings. And then the treatment for GVHD will often involve, for example, steroids. And what steroids do, as you all know, is that they're going to help with the GVHD, but they also may cause swelling. And so, I have now a young woman who, post-transplant due to GVHD, has been on steroids for about eight months. And so, she has found that her face is very puffy, and she feels now embarrassed to go out because she doesn't feel like herself. And so, as she says to me, "I look at myself in the mirror, and I don't recognize myself." So again, a lot of the work we're doing is making her feel more comfortable with herself.

(10:28): And then steroids, for example, can affect you emotionally. Steroids may interfere with your sleep, which then means you're going to be more fatigued during the day. Or steroids can cause irritability, which then may make you shorter with your partner who's at home with you. So again, all of these variables play a role in how you feel as a sexual being.

(10:50): Steroid use can also trigger premature menopause. And then, of course, for those women that are young and go through transplant, there is premature menopause. So, I have a 28-year-old who, from one day to the other, entered menopause. So 25 years earlier than she should have ever been going through menopause, she has abruptly gone into menopause. And that's going to bring about physical as well as emotional changes.

(11:14): So, all of these variables go together. And so, for most people, regardless of whether they're men or women, there are sexual changes post-transplant. For those who have GVHD, that is associated with less sexual satisfaction and definitely less sexual satisfaction if it's genital GVHD.

(11:42): Genital GVHD can cause vaginal dryness or irritation and is often underreported. Now, genital GVHD initially can often present as like vaginal dryness or irritation. And we know that vaginal GVHD is under-reported and under-diagnosed. And that seems to be partly because women may feel these symptoms, but when they go in for their follow-up visits, they don't think to report those symptoms. And so, it is not diagnosed, and it isn't treated oftentimes early enough.

(12:14): So that's one of the things that I'm hoping that, as part of this talk, you start realizing that if you have these symptoms, you need to really discuss it with your healthcare team, and you need a gynecologist to see you. Because again, you may, through genital GVHD, have ulcerations. You may have some narrowing at the vaginal canal. There may be discharge.

(12:37):  Sometimes it's very mild symptoms that are more than anything, perhaps associated with premature menopause. And that's what you're thinking it is. And it doesn't mean you haven't gone through premature menopause. But in addition, you may be struggling with genital GVHD, and it is very common to happen even for young girls that have gone through transplants. So important to bring this up to your healthcare team.

(13:07): Left untreated, genital GVHD can have serious long-term consequences. And obviously, these types of issues are going to impact how a woman feels in terms of sexual desire, arousal, and ability to have an orgasm. If these symptoms, particularly of premature menopause, are not treated, or genital GVHD is not treated, it can really lead to vaginal atrophy, stenosis, and more long-term consequences. So important to address these concerns.

(13:38): Sexual health cannot be evaluated in isolation because many medical, psychological and social factors interact with each other. This is a different slide to show the same thing that we were talking about how all these different parts of who we are as people interact to impact sexual health and to really take a look at it and see how they all are interrelated. And you can't really look at sexual health in isolation. Sexual health is part of your overall life and overall sense of well-being. And so, again, if you look here and you're feeling anxious, well, that may then impact how you feel about your relationship or intimacy because you're feeling so stressed out all the time that you're not feeling like you want to connect. And so, those two things can have an impact on each other.

(14:28): You can see how if you're going through pain, that may make you feel more anxious or depressed, which then may impact your relationship. And then, of course, there's the sociocultural variables, which I'll talk about a little bit in the next couple of slides. But again, this is just to show you that when you're dealing with sexual health, many variables interact with each other, and that's what I will look at when I see somebody individually and make it really an individual consultation. So, I just want to highlight that when you're looking at the psychological and sociocultural variables, emotional changes in and of themselves without any diagnosis of or treatment, or transplant in and of themselves can cause an impact on your sexual life.

(15:18): So, for somebody who's just out there in the community that's depressed, one of the symptoms of depression is reduced interest in sexual activity. So, if you're very anxious or stressed, that's going to impact. I often say if we get busy with our lives if you're young and you have kids and you have a job, sometimes you're just so stressed out without any treatment for cancer or anything like that that you forget to make time for your sexual life. If you're older, and you have aging parents, and you have a job and you're trying to manage so many things, again, just the stress of regular life can interfere with your sexual life.

(15:58): Stem cell transplantation can bring hormonal and body image changes that negatively impact sexuality. Now you've gone through transplant, and you're going to probably have some hormonal changes, and that is definitely going to have an impact on you in terms of your sexual life. But emotional changes. Many of my younger patients will say that as a result of premature menopause, they notice they're more irritable. They're more easily stressed. They'll say, "You know what? I'm watching a commercial, and all of a sudden, I'm crying, and I don't even know why. It's just like this chronic hormonal difference that maybe I used to get before, right before my period, but now it's there with me all the time." And with some of these hormonal changes, you may get hot flashes, which interferes with sleep, which then contributes to fatigue and irritability.

(16:42): Again, body image. When you've gone through transplant, many of the people I see will say to me, "You know what? I don't have the same muscle tone, and I look at my body, and it's so different. I'm either thinner or heavier, and my hair is taking a long time to grow back." So, a lot of what we often have to talk about is how do you get to feel more comfortable with your own body before you can even start to really approach that part of getting back to sexual intimacy. And then, I want to address here the cultural, religious, and spiritual views and changes that may occur. So, we know that people, depending on their age, may have very different views of themselves as sexual beings, right.

(17:27): Generational and religious differences can also influence our reactions to sexual changes after transplantation. So, there may be... And they're generalizations, but it's important to just sort of look at that. Somebody from the 60s may view things differently than somebody from the 80s than younger people today. And so, important to sort of go into that and think about how that is impacting you as a sexual being. And then religious views can have quite an impact there as well. So, all of that, I think, interacts with each other to get to that point of how you feel about yourself. So, when we're looking at your sexual life, I think it's important to look that restoring sexual health is in concert with overall health and well-being, and going back to the previous slides, it's part of your overall health.

(18:14): During this talk, we're going to really focus a lot on the mechanics because that's something that hopefully we can go through some specific information that can start to help you with your vaginal health and your overall whole-body health. We'll talk about some of those medical factors and really the importance of embracing lifestyle and behavior change, whether it's diet or exercise, to, again, get yourself to a better place. So, for young women who go through transplant, they usually will go into premature menopause. That is very common. So again, here you are at 28 years old going through menopause, which shouldn't have happened to you for 25 years. And as some of my young women will say, "I'm a 28-year-old in a 55-year-old's body, I feel."

(19:10): Transplant-induced premature menopause involves sudden hormonal changes and can happen very quickly. Because what happens when you go into premature menopause is that often, as a result of treatment, it happens very abruptly, unlike somebody who goes through it naturally, where there's a gradual decrease in those hormone levels, and it's a gradual process. For the young person, where this happens, it's abrupt, and often, the symptoms that you feel are exacerbated by that suddenness of going into premature menopause. It really is a decrease in your estrogen levels that happens very drastically and testosterone levels. Women do produce low levels of testosterone. Ovaries produce low levels as well as your adrenal glands. And when you go into premature menopause, that drastically reduces as well.

(20:00): Common symptoms of premature menopause can be vaginal dryness and tightness, reduced elasticity,  change in blood flow, and severe hot flashes. We do look at menopause today as a genital, urinary symptoms which impacts sexual health, and even for women who go through natural menopause, this that we're talking about today applies to them. I do think in our society, women's health doesn't focus enough on menopause, whether it's premature or not, and these slides apply to anybody that's in menopause. So, if you get diagnosed later and post-transplant, you are in menopause. Not that you went into it prematurely, but you were in menopause, and now you're still having to deal with it. This applies to you as well. So the common symptoms that we see with menopause really are vaginal dryness and vaginal tightness.

(20:47): There is reduced elasticity. We know there's a change in blood flow, and that affects sensation in the genital area, the vaginal area. With this premature menopause, there's often hot flashes which can be quite severe, often really interfering with sleep. I have young women who tell me that they find that they're going to sleep and the hot flashes are so bad that they have to change out of the clothes they're wearing. Again, changes in mood, as we talked about. Fatigue is a very common part of just regular menopause. In this case, it's going to be exacerbated as a result of all the treatment and continued treatment, perhaps for GVHD.

(21:29): Premature menopause can also contribute to fatigue, sleep problems, and chemobrain. And so, fatigue is going to be there. Sleep difficulties. And then chemobrain. One of the things that happens during menopause for women is that there are sometimes this sort of brain fog that happened. And then when you've gone through treatment, there is that chemobrain, but now exacerbated by the hormonal changes. And what women will describe is that their attention isn't as good. Their concentration may not be as good. They also may report word-finding difficulties. They may go into a room and then forget why they're going there and have to walk back. And this is very distressing. It is something that happens. There is documentation and research for this, and there are things that can be done, but this will have an impact on how you see yourself.

(22:17): I have another young woman who's very high-powered attorney, and this has had a major impact on how she views herself. As she says, "I always counted on being very quick and going to court and being able to respond quickly. And now, post-transplant, I'm really struggling because I'm not as sharp." That can improve. But again, it's affecting how she feels about herself as who she is, given that being an attorney was part of her definition. And then again, decreased libido or sexual desire can happen. And again, I want to make the point that sexual desire there's more to it than just hormones. So, keep that in mind. If you go into premature menopause, it is important to talk to your healthcare team about having your hormone levels checked.

(23:08): Systemic hormone therapy can treat symptoms of premature menopause. And if you are in premature menopause, having a gynecologist see you and starting systemic hormone therapy. It can be started soon after transplant. There is no reason, which this still happens to me when I see a 32-year-old that has been in premature menopause for two years and now has major changes, vaginal changes that are really having an impact on their sexual life. They're not struggling with GVHD. They're doing quite well, but nobody addressed this part critically to have your healthcare team refer you to a gynecologist who can start, if indicated, systemic hormone therapy, be it pills, a patch. This needs to be addressed. And so, the vaginal changes that you may be feeling and noticing may be due to premature menopause, but they can also be genital GVHD.

(24:04): Vaginal changes can arise from premature menopause or genital GVHD and must be accurately diagnosed and appropriately treated.  And again, it is a gynecologist exam that is going to really find that and be able to diagnose and let you know what is going on. The treatment for genital GVHD is very different than just going through premature menopause. And you may have both. They both may be occurring. You're in premature menopause, and you have genital GVHD, and both need to be addressed. And I really want to make this point. Advocate for yourself. Ask for that gynecologist exam. So, when you go through either premature menopause, you're in menopause, there are vaginal changes that are going to occur, and those vaginal changes are going to impact. You're going to have some dryness. You're going to have some reduced elasticity.

(24:52): Vaginal dryness can be treated with systemic hormones as well as topical treatments. And then you're going to have a change in sensation due to decreases in blood flow. So, we are going to talk here about the importance of dealing with dryness and moisturizing reduced elasticity and focusing on stretching and then changes in sensation due to blood flow and ways to try to help with those. So even if you are on systemic hormone therapy, [inaudible 00:25:18] going back two slides, you may still find that there is dryness in your vagina and there is still vaginal dryness. That could still be there. And the reason to deal with getting systemic hormone therapy and then dealing with vaginal dryness has nothing to do with sexual activity. Will it help sexual activity? Yes.

(25:42): And sexual intimacy, yes. But this is important for you to deal with as a woman, as part of your vaginal health, whether you are in a relationship with a partner or not. If you don't deal with this, that vaginal dryness leads to further irritation. It will lead to discomfort where it may become very painful to have a gynecologist exam. [inaudible 00:26:04] it will become painful to ride a bike to wear pants that are even slightly tight. So, you do need to deal with your vaginal health. Systemic hormones may help, but if they don't, then you do need to address for topical treatment of vaginal dryness. And for this, there's two steps.

(26:23): For vaginal dryness, moisturizers should be regularly applied internally and externally. So, the first step to deal with vaginal dryness and moisturizer... moisture is to find a way to moisturize your vagina. And this must become part of your routine. Just like brushing your teeth every day, this is something that needs to be addressed. And I'm showing here that there are several moisturizers that are water-based, glycerin free, over the counter. You can buy them at CVS, Walgreens. I put here Replens because, again, easy to find, not expensive. And you'll see that part of Replens says moisturizer, but when you go buy it, Replens has different products, and you want to buy the one that says long-lasting. And these are, again, water-based, glycerin free. They're over the counter. They're not hormonal. You can just buy these.

(27:19): The way that I recommend is you use them every other night right before bed. Why right before bed? Because if you start walking around, it'll leak out. And then not only do you insert [inaudible 00:27:30] inside your vagina, but you also take some, put it on your fingertips, and spread it out, your labia, your clitoris. You need to make sure that that moisturizer is not only internal but external as well. If after doing this for three or four months and you're doing it every other night, you don't find that it's helping, then talk to your oncologist and go see your gynecologist and have them prescribe a topical or local hormonal moisturizer. And I listed some there.

(28:01): For sexually active women with vaginal dryness, lubricants like Good Clean Love should be used. But again, it is very important to make sure that this just becomes part of your life from now on. Now, if you're going to be sexually active, then you're going to want to use a lubricant when you're sexually active. And here again, I've listed some of the most common ones that people talk to me about. I usually prefer Good Clean Love. It just has no irritants. It's very mild. That would be my preference. Again, available at any pharmacy. Even get it on Amazon. I listed here K-Y because a lot of women use that. I particularly don't like it. I find that it's too thick and doesn't feel natural. But again, you need to try different ones to see what feels good to you.

(28:48): So, I’m making that point so that you try different ones and see what agrees with you. I want to say also that if you are in a relationship with a man and you are going for sexual intercourse, you need to apply the lubricant liberally, not only to yourself but for the man's penis. If you're using any type of sex toys, you need to apply them there as well so that, again, there is as much moisture there as possible. And then again, just check for these things. There are other medications you may be taking that are going to affect vaginal dryness. You may still need to take them, but just keep in mind allergy meds don't only dry up your mucus membranes but may affect your vaginal dryness, and then avoid anything that can cause irritation.

(29:37): Loss of vaginal elasticity can be treated with vaginal stretching and by seeing a specialist in pelvic floor therapy. Now the second step is vaginal stretch. So, when we talk about vaginal stretching, what I'm saying here is that you have a loss of elasticity that's the result of having less estrogen. And it would help greatly for you to then see a physical therapist who specializes in pelvic floor therapy. Yes, there is a lot out there that you can get on the internet for you to do pelvic floor on your own, but I do believe that getting a couple of sessions with a pelvic floor therapist is critical to getting the best results long-term, even if it's just for a few visits. They will specialize. They will make the treatment specific to you.

(30:20): And again, more and more women are getting this, even women who are going through natural menopause because this can help with you sexually, it can help with you to try to avoid the urinary incontinence that often comes with menopause, and I think it's critical to see that person individually whenever possible. Your insurance does cover physical therapy for pelvic floor. Just make sure you get a prescription. And then oftentimes, if there is already a lot of vaginal narrowing or some atrophy, then the pelvic floor specialist will prescribe to you to use dilators. Again, you can learn a lot about this. And Memorial Sloan Kettering, my alma mater of training, has a great resource on this.

(31:10): Pelvic floor therapy can reduce pain with sexual intimacy and the anxiety it often causes. But I do encourage you to go through a pelvic floor specialist who will then again individualize the treatment for you. And part of why pelvic floor therapy is so important is because, again, for many women, what they will report to me is they've tried to be sexually intimate, and when they've tried to be sexually intimate, it has been painful. And when you or I or anybody gets pain, we start to get anxiety about it. So, you start to fear that you're going to be sexually intimate, and is that going to cause pain? So, you tend to avoid it because who wants to do something that's painful? And then the more you avoid it, the less sexual activity you have, and the less activity you have, the less desire because who wants to engage in something that is painful?

(31:58): Vaginismus is a tensing of vaginal muscles in reaction to painful sexual penetration that can trigger a negative feedback loop. And we know that if you try to engage in sexual activity with any type of penetration and you've already had experiences where it's been painful, your vaginal muscles are going to tense up. That's called vaginismus. And as soon as those vaginal muscles tense up, if you try again, that's even going to bring back more pain. So, it becomes these very negative feedback loop in a sense where the more you avoid, the more pain, the more pain, the more you avoid and less desire. So again, it is very important to have that pelvic floor exercises and go to a therapist. And often, when you go through menopause, there is a decrease in blood flow to the vaginal area and to the clitoris.

(32:48): Using a vibrator can increase clitoral blood flow and restore sexual sensations. Oftentimes with that decrease in estrogen, you can see that the clitoris and the sensation you feel there is much less. And so, one of the things that we recommend is a couple of times a week for a few minutes to use the vibrator. We're not even saying that this is sexual. If it's sexual, that is much better for you, and you can start to figure out what feels good, what doesn't feel good. You may need to use a lubricant. But use a vibrator to try to increase the blood flow to your clitoris and see what feels good and doesn't feel good because, again, there can be less sensitivity, and you want to take a look and see what feels good and what doesn't to you.

(33:29): One of the things that I see many people for is that they're single. And so, it's this whole idea of dating. "When do I say things? How do I say it? How do I present it?" A lot of my young patients that I see have very limited dating histories. I see 19, 20-year-olds who will tell me, "I've dated very little, so I don't even have any experience sexually, and very limited. So how do I approach this whole landscape? And we do talk a lot about how to deal with this. How to get on some of the dating sites. And that's a big part of, again, the psychosocial part that I'm talking about in terms of sexual health.

(34:12): I want to talk about intimacy and desire. We tend to think of desire as something that is automatic. We tend to have this view that it is immediate and automatic. It's what we see in the movies, right. It is sort of like, "Oh, it's this passion that overtakes you, and it's just got to be there." And we do know that that isn't the case. That desire, perhaps early on in our relationship, may be automatic. But as time goes on with changes in our life with the stress of life, even for people that don't go through any type of treatment or transplant, you have to work and cultivate desire and intimacy.

(34:53): Sexual desire and intimacy requires communication. It is not automatic. That idea too that we see in the movies that, "Oh, the romantic thing to do is to go out for a dinner and drinks." And that's what constitutes a romantic dinner, right. And so, that is contrary to what we would want for being conducive to sexual activity. You go for this romantic dinner, and you come back, and you're full. You've had alcohol, which dulls us some, and so, you're less likely to respond sexually. And when you're full, and you've had this huge meal, you often feel like a beached whale. So again, these ideas we see in the movies really are not conducive and are not really reality.

(35:38): You need to communicate with your partner and sort of see what makes you feel pleasure. I often tell couples, "Don't focus so much on the goal of orgasm. Let's focus on pleasure. Let's take away that goal. What feels good to you?" The importance of making time for intimacy. Maybe just touching is a good place to start. If you've gone through treatment and your body just doesn't feel so good, what feels good to you? Most people enjoy holding hands. Maybe that's a good place to start and just having that intimacy, maybe a massage, but maybe not because that doesn't feel good right now. If you have some rash in your body and GVHD, that may not feel good.

(36:21): Keeping a desire diary may help identify positive sexual triggers. So, what feels good to you? Start keeping a desire diary. Are there times when you feel more like being sexually intimate? For example, people often think about sex at night, but you may be too tired at night, so maybe desire is better in the morning. And what are sexual triggers for you? They're different for everybody. And the sexual triggers that you had before treatment may have changed. I think it's important to give yourself time to get in the mood. Maybe it's watching an erotic movie. Maybe it's reading erotic literature to each other or maybe just reading erotic literature yourself.

(36:56): And maybe that helps you to get more in touch with your own sense of sensuality. And oftentimes, it's really focusing on yourself first before even going in terms of a relationship. Maybe it's really, again, just starting to dance or listen to music together. Taking a tub bath or a shower together without that focus of the goal being orgasm, just having that intimacy. You know, extra time for foreplay, touching. And again, so important to communicate if something is painful, doesn't feel good, And so, important to communicate. And all these things can help cultivate desire.

(37:33): Approaching intimacy with fun and openness can help overcome sexual difficulties. I always say to try to approach this with some fun and openness, particularly after you've gone through such a difficult time through treatment, right. So, keep an open mind on ways to feel sexual pleasure, experiment with new positions. If you've not been into self-stimulation very much, masturbation, maybe that's the place to start. And as I said, with that vibrator therapy, part of it is to increase the blood flow, but maybe that's something where you can start to see what feels good to you.

(38:04): I put a lot of these with question marks because for some people they will say to me that acupuncture does help them in terms of their desire. So again, everybody's specific in terms of what helps them. Just make sure you talk to your healthcare provider before you try anything that's medication or herbal because they can interact with treatment. But again, research may not be there to back it up. So just make sure you talk to your healthcare team. And I always say, approach it with fun and try to be open to exploring.

(38:37): I'm going to skip the slide and go to the importance of looking at your sexual health as part of your overall healthy lifestyle. I do think it's important to acknowledge the losses and that that loss does result in pain and may result in you not feeling good for a while. And you do need to accept that and not just sort of say, "Well, it happened," and just be okay and positive about it. There is an importance there of realizing, yes, this is a loss. It is a change.

(39:11): Consulting a psychologist may also provide comfort with body changes, self-image, and sexuality. And then, exploring ways to change with that, ways that you can maybe find comfort with those changes in your body and body image. And maybe again, they're talking to a psychologist about what messages you are giving to yourself and learning to appreciate your body and how do you deal with those changes and getting active and moving and exercising. That's important for your overall health, but it can make you feel stronger in your body and better about your body image. And then again, that may help your mood.

(39:42): Sexuality is one part of our life and is affected by our overall health. And so, all of that interacts with how you feel about yourself sexually, you know, approaching with getting better sleep, eating properly. So, it's approaching your sexual health as part of your overall health and then keeping sex in perspective. It is just one part of your overall life. So with these slides, you're going to get some of the national sexual resources that are out there that you can access. And I really just want to thank everyone for being here with me and for BMT InfoNet for having me and paying attention to this very important part of life for all of us. Thank you.

Question and Answer Session

(40:30): [Marla O’Keefe]: Thank you so much, Dr. Pozo-Kaderman, for this excellent presentation. We will now begin the question-and-answer session. Our first question is, "I went to a urogynecologist who found my bladder had lost sensation to fullness post-transplant. Have you ever heard of this?"

(40:58): [Dr. Christina Pozo-Kaderman]: Yes, I have. Unfortunately, that does happen, and I hope that that person that you saw was able to give you some things that may be able to do to help yourself. I also think that pelvic floor exercises and seeing a pelvic floor therapist specifically for this might be helpful. So yes, unfortunately, I have heard about that a number of times. Yes. And again, we go back that these hormonal changes that you go through post-transplant are... it is a genitourinary symptom that women will experience. Yes.

(41:47): [Marla O’Keefe]: "What is a recommended time, or is there a recommended time to start sexual activities again post-transplant? Does my CBC or immune system have to look like anything in particular?"

(42:02): [Dr. Christina Pozo-Kaderman]: Well, that's a great question. So, I think that for most people, if you're at high risk for infection, so if you're at high risk for infection, and again, ask your healthcare team. If you're at that point where it's high risk for infection, I think you just need to be a little bit more careful. Make sure you use a barrier method when you're sexually intimate, and that may be a condom. And so, just being careful, being careful that your partner at that time doesn't have any type of infection because, again, any kissing or anything like that, if they have an infection and your immune compromise could be an issue.

 I also think that during those times, you want to be sure that if your partner has any type of sexually transmitted disease that may be there and it's active like herpes, that you just make sure you communicate because, again, you're at higher risk for infection. But if those things aren't there, and you blood counts are in a good place, and you're not at high risk for infection, it's fine if you feel up to it. I would also say that you need to make sure your platelet counts are at a good place because that can be a problem. Any type of anal sex is usually, again, contraindicated when your platelets are down and you're at higher risk for infection.

So, I hope that answers. And usually, one of the questions I get, but this is not so much with transplant. But when people are going through chemo, usually chemotherapy clears out of your body within 72 hours, but again, that's most, and so, you want to ask your healthcare team in terms of the particular treatment that you're on. But again, I'm just going to repeat. If your counts are in a good place, if you're not at high risk for infection, if your platelets are okay, talk to your healthcare team and then go ahead.

(43:59): [Marla O’Keefe]: “Is there a difference between using Premarin versus Estrace®? And is a product like Replens® better than using something like Aquaphor® for vulvar rash or dryness?"

(44:19): [Dr. Christina Pozo-Kaderman]: Okay. So, in terms of whatever you decide to use, so Premarin, which I'm assuming you're talking about taking the pills, that is systemic treatment, And so, that's great. And if that's doing it for you and you have good vaginal lubrication with systemic oral treatment, that's fine.

Some women will say, "You know what? I am on the systemic oral treatment, but I still find that I have a lot of dryness in my vagina." And then, at that point, they may want to use whether it's an over the counter or a topical like Estrace®, they may want to. So again, there's variability there in terms of what each woman feels that they may need. And the other part of the question was about Replens. Can you ask me that again? I'm sorry.

(45:16): [Marla O’Keefe]: Sure. She wanted to know if a product like Replens® was better than using something like Aquaphor for vulvar rash or dryness.

(45:26): [Dr. Christina Pozo-Kaderman]: I tend to think so because, again, something like Replens®, it's water-based. It is glycerin free. So again, it's not as sticky. It is not... I would recommend that you use something like Replens® topically better than an Aquaphor® or Vaseline®. Those things are usually contraindicated from my perspective just because they're so thick, and they can increase the risk of sometimes having some type of infection or something like that.

 But again, if that is for whatever reason why your gynecologist prescribed it, then I'm obviously not going to interfere with that because there may be specific reasons why you're being prescribed that or that's being suggested for you. And again, you can either use something topically that's over the counter like a Replens or you can talk to your gynecologist about something that's more hormonal that's also topical that may be better indicated for you and would help with the dryness and the itching better than an Aquaphor type of thing.

(46:36): [Marla O’Keefe]: "How do you determine if your symptoms are due to premature menopause or GVH, as the symptoms seem to overlap?"

(46:47): [Dr. Christina Pozo-Kaderman]: Yeah, that requires a gynecologist exam. They will be able to see when they do their exam if you have genital GVHD. There are signs that they can see, and they will be able to diagnose it. So that's why it's so important to get that gynecologist visit in there.

(47:12): [Marla O’Keefe]: "Which doctor should I see for help with hormone replacement, sexual dysfunction, and early and menopause? Is it one doctor or three?"

(47:23): [Dr. Christina Pozo-Kaderman]: Well, I think usually, if you see a good gynecologist who specializes in people who've gone through cancer treatment, preferably, even if they're a specialist in post-transplant, that's even better. Some of the regular gynecologists may not always be in the best situation to treat things because they don't know, right. They haven't seen a lot of the genital GVHD. And so, you want, whenever possible, to see a gynecologist who works closely with your transplant team. That is ideal.

If they don't have somebody, and if you're in a community that doesn't have that, then obviously go to whoever you can find in your community that can work with your transplant team to help diagnose what's going on, start you on the systemic treatment if indicated, start you on local treatment if that's indicated. And then, if you're still having some of those difficulties, you may want to see, again, a sexual health expert.

And the sexual health experts that work within the field of psychosocial oncology are oftentimes psychiatrists, psychologists, social workers, mental health therapists that's gone ahead and gotten that specific training to work in the area. And so, if you can get somebody like that, ideal. If there isn't somebody like that in your area, then maybe seeing a psychologist that has an interest in the area would be helpful as well.

(49:05): [Marla O’Keefe]: "What is your opinion of using coconut oil as a lubricant?"

(49:12): [Dr. Christina Pozo-Kaderman]: I think if that works for you, that's fine. And I do have a number of women who feel that that's what they like, and they decide to use that, and if that works for them, that's fine. And I want to just go back. I know that some of you may be from areas where you don't easily have access to all these practitioners, and that's why at the end of the talk, there's a list of resources that you can go to who may be able to find within your community or close by practitioners that you can then reach out to help address some of these concerns.

(49:48): [Marla O’Keefe]: "What is your thoughts on saliva as a lubricant?"

(49:57): [Dr. Christina Pozo-Kaderman]: Saliva works fine. I mean, if that is enough, that works fine as a lubricant. If that works fine for you, again, it's very individual. So, for some women, they will say that they really need more lubrication that's going to last longer than saliva, which may not last as long. So they will want one of those over-the-counter lubricants that I mentioned on the slide. But if saliva works for you individually, and that works, that's fine. So again, it's whatever worked for you as an individual.

(50:31): [Marla O’Keefe]: "Is there any management for urinary stress and urge incontinence which occurred only after my transplant?"

(50:41): Right. Again, that's where I would say definitely see a pelvic floor physical therapist and definitely see a urologist who will specialize in this area specifically. And I think, hopefully, with that team, you can find a way to deal with this. That urinary incontinence and that sort of sensation urgency to go with premature menopause happens.

And I think that's where you need that team approached to deal with it. Unfortunately, it does happen. I have young women where they'll tell me that sometimes when they laugh, it'll happen. And then other times, it's just they start to feel full very quickly and can't quite make it to the bathroom in time. And so, working with the team to approach this from different angles is the best way to deal with it.

(51:40): [Marla O’Keefe]: "Should I expect greater frequency of urinary tract infections post-transplant?"

(51:49): [Dr. Christina Pozo-Kaderman]: It can happen, particularly if you haven't... if you're in premature menopause, you haven't started to treat it yet. I think that that does sometimes happen. Now again, if you go and you see the gynecologist, they start you in premature menopause. They start you in systemic treatment, hormonal treatment. You deal with topical changes in moisture. You do the pelvic floor. All of that together should definitely help to prevent the UTIs. But if all of those things aren't being addressed, then, oftentimes, women do report more UTIs. Yes.

(52:31): [Marla O’Keefe]: Sure. "Should a woman well over 45 who has had reactivation of HPV-related general warts that are treatment resistant have an HPV vaccination?"

(52:47): [Dr. Christina Pozo-Kaderman]: That one I am not going to answer. That's not my area of specialty. So there, I do think you need to talk to your transplant team, and they will provide information in terms of vaccinations. As many of you know, when you go through transplant, there's a whole process in terms of your vaccinations. And so, I think that's something that I would refer to the healthcare team.

(53:11): [Marla O’Keefe]: "If a woman is not sexually active and not bothered by dryness but does have GVHD changes such as labial fusion, is it still important to use measures such as topical steroids and estrogen to control the GVHD?”

(53:29): [Dr. Christina Pozo-Kaderman]: Yes. Yes. Because you're not sexually active, you're well over 45. I still think you need to treat GVHD. You would treat it if it was in another part of your body, so why wouldn't you treat it if it's genital? So, it still needs to be addressed. You still need to make your healthcare team aware of it and let them decide what needs to happen. I would also say that even if you're not sexually active, I do think it's important to take care of your vagina because, as I said before, if you don't take care of it, it gets to the point where having a gynecologic exam becomes painful to impossible.

If you want to ride a bike, that can become very challenging. And then I have women who will say even wearing like yoga pants becomes so uncomfortable. So again, I understand there's a lot of individual differences. And if you feel okay with it in terms of, in general, just being in menopause and not having to do anything in terms of moisture or vaginal stretch [inaudible 00:54:45] GVHD, definitely make your healthcare team aware of it. And hopefully, you'll even decide to take care of your vagina and its health just as part of your overall health. So you don't get to that point where you have the atrophy, and just even, like I said, regular activities become uncomfortable and painful.

(55:06): [Marla O’Keefe]: "Can you do hormone replacement therapy while on Prednisone and other medications for chronic GVHD?”

(55:16): [Dr. Christina Pozo-Kaderman]: Yes, that can happen. And we do have patients that are on steroids and on hormone replacement. And again, I think that that's where you want to talk to your healthcare team, your transplant team, and figure out the best timing to start the hormone replacement. Sometimes you do have to wait eight or 10 months to start it or a year.

Sometimes you can start it earlier, and a lot of that will depend on your transplant team and when they feel that it's indicated. But can it be both? Yes, it can. And I think there's that area where you just need to make sure that your transplant team is okay with it. So, to answer your question, yes, you can be on both. And I think that it depends on when based on what your transplant team feels is indicated for you as an individual.

(56:17): [Marla O’Keefe]: Thank you. And this will have to be our last question. "You had talked on, I think it was slide 21 about other things besides sexual intercourse. Are you familiar with sensate focus exercises, and what are your thoughts on those?"

(56:31): [Dr. Christina Pozo-Kaderman]: Sure. I think if that works for you, a lot of what I do initially is sort of a sensate focus. It may be even less sensate focus. So yes, I think sensate focus works really great. I sometimes start off with just really holding hands with just laying together and so, even less in sensate focus and gradually getting to that.

But yes, I think that that can work really well. So, anything that encourages intimacy and closeness, I encourage. And I think the key is, if you are with a partner, is to communicate with your partner, and anything that encourages that and some physical intimacy when you feel ready and comfortable, I think, is great.

(57:20): [Marla O’Keefe]: Closing. Thank you. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Pozo-Kaderman for a very helpful presentation and you, the audience, for your excellent questions. enjoy the rest of the symposium.