Women's Sexual Health after Transplant and CAR T-cell Therapy

Difficulty with intimacy and sexual health  after a bone marrow/stem cell transplant or CAR T-cell therapy is common. Help is available,

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Women's Sexual Health after Transplant and CAR T-cell Therapy

April 29, 2024

Presenter: Jennifer Vencill PhD, ABPP, CST,  Mayo Clinic

Presentation is 43 minutes followed by 17 minutes of Q&A.

Summary: Pain with sex and a decreased desire for sex are common in women after cancer treatment. This presentation explains how the sexual response cycle works, medical interventions you can use to address genital health problems after transplant or CAR T-cell therapy, and other strategies you can use to regain intimacy with your partner.

Key Points:

  • Sexual difficulties are one of the most common late effects of transplant. Sexual difficulties tend to persist or worsen over time unless treated.
  • The most common sexual health concerns for women after transplant are genital dryness, pain during sex, low sexual desire, changes in the quality of sexual experiences, and loss of intimacy.
  • Transplant does not take away your sexuality. Help is available.


(04:18) Genital pain and pain with intercourse reported by many women after transplant. They are usually caused by genitourinary syndrome  menopause (GSM) and/or chronic graft-versus-host disease (GVHD).

(06:00): Genitourinary syndrome of menopause is an overall drop in hormones that lead to deterioration of genital tissues

(09:17): Genital GVHD happens in up to 69% allogeneic survivors and can affect both the vulva and vagina.

(16:07): Problems with pelvic floor muscles can cause pain with sex. Pelvic floor physical therapy is the gold standard treatment.

(17:07): The first step to treating pain with sexual intercourse is to stop.  Continuing with intercourse, despite the pain, can make the pain worse over time and reduce sexual desire.

(18:57): There are a number of over-the-counter lubricants and moisturizers to optimize the health of vulvar and vaginal tissues. Vibrators can also help.

(24:32) There are two types of sexual desire: spontaneous desire, which is more common in men, and responsive desire, which is more common in women, particularly after hormonal changes, aging and for those in long-term relationships.

(37:42): A helpful technique to help regain intimacy after transplant is “intimacy dating”.

(40:13): A sex therapist can help partners explore ways to achieve intimacy, despite changes caused by the transplant

(40:51): The goal of sex is not necessarily a having a specific type of sex, but to feel pleasure, feel connected to your partner, and to enjoy each other together. A flexible and open-ended approach to sex can help address pain and increase sexual desire.

Transcript of Presentation:

(00:02): [Marsha Seligman]:   Welcome to the workshop, Women's Sexual Health After Transplant and CAR T-cell Therapy. My name is Marsha and I will be your moderator for this workshop.

(00:11): Introduction of Speaker. It is my pleasure to introduce today's speaker, [Dr. Jennifer Vencill]:  . Dr. Vencill is a board-certified clinical health psychologist, an American Association of Sexual Education Counseling and Therapy certified sex therapist, and an Assistant Professor at the Mayo Clinic. Dr. Vencill's research focuses on sexual health, health disparities, and minority stress in marginalized sexual and gender communities. She is co-author of the new book, Desire: An Inclusive Guide to Navigating Libido Differences in Relationships. Please join me in welcoming Dr. Vencill.

(00:52): [Dr. Jennifer Vencill]:   Thank you so much, Marsha. It's such a pleasure to be here. We have a lot to cover, so I'm going to dive right in.

(01:00): Learning Objectives. We have some learning objectives today. First and foremost, understanding the impact of cancer and transplant on sexual function and really covering some of the main sexual health implications following cancer and transplant. We'll focus a lot today on sexual behavior and sexual desire, libido concerns, because those are two of the most prominent sexual health concerns after transplant. And of course, we're going to talk about some behavioral relational approaches to optimizing sexual health post-transplant. So let's dive in.

(01:31): I work in a menopause and sexual health clinic with sexual medicine providers. I myself am a sex therapist. We hear a lot of different sexual health concerns following cancer treatment, following transplant. I hear from my patients that it hurts too much to have sex and that it feels like I'm being torn. I also hear “I have absolutely no sexual desire, but I don't care if I ever have sex again, but of course, my partner is not happy” and “the doctor says my vagina has closed up since treatment. I can't even have sex with my husband. I feel like a horrible wife. I don't even want him to touch me”. These are very challenging concerns that our transplant survivors face.

(02:15): We know that sexual difficulties are one of the most common late effects of transplant. We also know that sexual difficulties tend to persist or even worsen over time unless there is treatment, and that this tends to be true more often for women than for men, according to the research we have from up to five years post-transplant, that if treatment is not available or is not being sought, sexual difficulties do tend to get worse with time.

(02:44): One of the biggest things I want to make sure that we understand today is that treatment is available. There are many, many strategies to address sexual difficulties, and helping people find the right providers to guide them through that process. Nobody should be suffering with these concerns in silence or on their own, and help is available.

(03:05): So let's start at baseline. What are some of the most common sexual health concerns after transplant? Vulvovaginal dryness, thinning of the vaginal tissues or vulvar tissues. Sexual and genital pain, which might be related to dryness but also might be related to other causes, which we'll talk about today. Low sexual desire, low interest in being sexual, or desire discrepancy with a partner is very common. Another concern is overall reduced sexual quality and quantity or frequency. Many people experience changes in orgasm, and of course with treatment also may come poor body image or feeling less attractive. That may have pre-existed before treatment or may be developed as part of the treatment process after everything the body has been through.

(03:57): What is so important that I want this audience to know is that transplant does not erase your sexuality. It does not have to take away good sexual experiences, whether solo or with a partner, and that help is available. I really hope that we can give folks lots of good information and options here today and of course spend some good time answering your questions as well.

(04:18): Genital pain and pain with intercourse are often reported by women after transplant. Genitourinary syndrome (GSM) and chronic graft-versus-host disease are the usual causes. So, I want to cover some of the most general and most common sexual health concerns that we tend to see following transplant. One of the biggest is pain with sex or genital pain. I want to spend a good chunk of our time today really talking through this concern and what can be done to help with sexual and/or genital pain.

(04:42): We know that there can be a couple of different things going on that can contribute to sexual and genital pain in the aftermath of cancer treatment and transplant. A couple of different things can happen in terms of vulvovaginal tissue health changes, so genital tissue health, and we're going to talk about both the genitourinary syndrome of menopause, or GSM for short, and genital graft versus host disease (GVHD). We'll also talk more about the muscle involvement that can happen for many people and contribute to sexual pain in particular. We'll go through each one of these in turn here.

(05:24): Let's start with genital tissue health changes. For many people cancer treatment and transplant puts them into menopause. Others were perhaps already in menopause when they went through treatment. Either way, one of the most common symptoms of menopause is what's known as the genitourinary syndrome of menopause, or GSM. This is actually one of the more common symptoms of menopause, regardless of how we got to menopause, whether that was through treatment, medically, chemically, or even naturally, biologically into menopause.

(06:00): Genitourinary syndrome of menopause is an overall drop in hormones that lead to deterioration of genital tissues. Genitourinary syndrome of menopause refers to the fact that the tissues of the vulva, the outside of the genitals, and right at the opening of the vagina as well, are filled with hormone receptors, estrogen receptors, testosterone receptors, and when we have an overall drop in hormone levels, oftentimes the health of these tissues starts to deteriorate. Unfortunately, with menopause, if we are not adding back hormones, that becomes a progressive issue. What tends to happen over time is that the genital tissues will thin out, they will become quite dry. We might start to see atrophy and inflammation of those tissues, sometimes fusion of those tissues together, where perhaps the labial tissues might fuse or the clitoral hood might fuse to the clitoral glans. So there can be a real change in the architecture of these tissues.

(06:52): I want to draw the audience's attention to this image here. You can kind of see on the left-hand side of the screen what a healthy vagina looks like. Really robust, full tissue health where the dermis, the skin, is very healthy. When we have the appropriate hormone levels and these tissues are healthy, the vulvovaginal tissues are plump, moisturized, happy and healthy. When we have what used to be known as vaginal atrophy or vulvovaginal atrophy, now GSM, you can see on the right-hand side, those tissues start to become thin and dried out, and of course this can contribute to pain with sex and just overall sensations of dryness. So this can occur in up to 90% of patients. It's very, very common and the good news is, it's treatable.

(07:45): Estrogen is essential for genital and urinary health.  Now I will speak on estrogen and sexual functioning. So estrogen is really, really important for the physiological function of our genital tissues, and this actually includes urinary health as well. So when those genital tissues are plump and happy and moisturized and healthy, we have both good sexual functioning, oftentimes lubrication, but also there's a protection of urinary health as well. Those tissues when they're healthy almost act like an airbag around the urethra, which comes out in the midst of the vulvar tissues. And so when those tissues are happy and healthy and plump and moisturized, they protect the urethra from bacteria getting up inside the urethral tract and into the bladder.

(08:25): It's very, very common for women when they start to experience the genitourinary syndrome of menopause to all of a sudden be having recurrent UTIs or irritation of the urethra, for example, feeling like they have to pee all the time, kind of feeling some irritation at the end of the urethral tract. Estrogen is both important for overall sexual functioning, but also our urinary health as well, hence the name Genitourinary syndrome of menopause.

(08:52): Estrogen is really critical for preserving genital sensation, elasticity of these tissues and adequate lubrication, certainly reducing the risk of sexual pain, and improving overall sensations of sexual arousal, sort of physical signs of sexual arousal. No estrogen or lack of estrogen or decreased estrogen often leads to the genitourinary syndrome of menopause.

(09:17): Another vulvovaginal tissue change that can happen with transplant is of course genital graft versus host disease (GVHD). GVHD can happen in up to 69% allogeneic stem cell transplant survivors. We know that if you have non-genital GVHD, you are more likely to have genital GVHD, and of course GVHD can attack many different types of organs across the body, so if you have one form of GVHD, it's likely that you will have it in the genital area as well.

(09:54): For about 70% of transplant survivors, the GVHD is localized to the vulva, which is kind of the outside, external tissue of the genitals. There's another about 20 to 30%, depending on the study you look at, where it's both the vulva and the inside of the vagina that is affected by genital GVHD. Typically, a median onset is around nine months post transplant, but of course GVHD can be acute, it can be chronic, and it can develop even years later for some people.

(10:30): Common symptoms for either GVHD or GSM, patients might find that they're asymptomatic at first. This is why it's really, really important to continue to have regular pelvic exams with your care team, especially finding providers who are really knowledgeable about sexual health changes in the aftermath of transplant and what to look for, particularly if menopause has been part of that process, induced menopause.

(10:58): Vulvovaginal changes can be increased dryness, any sort of pain, genital pain or pain with sexual activity. We know that there can be decreased elasticity of the vaginal canal, that's the internal canal. Adhesions and scarring can occur with GVHD in particular, and there can be what's called vaginal stenosis, where the insides of the vagina essentially starts to close up because of the changes in the vulvovaginal tissue health.

(11:27): Continuing to have sexual intercourse, despite the pain, can lead to even greater sexual health difficulties. What this unfortunately can lead us to, and something I see more commonly than I wish in our sexual health clinic, is that these vulvovaginal tissue health changes are often happening while people are continuing to be sexual with their partners. And so, while the pain and the discomfort often starts from tissue health changes, if we are continuing to have sex that feels painful, that feels uncomfortable, it is not very long before this cycle of pain takes hold. As you can see here, this cycle is both physical in nature and psychological behavioral and relational in nature.

(12:08): In the pain cycle, you can see here right on step one, this is anticipating that a sexual experience is not going to go well, that it's going to be negative, uncomfortable, painful. That might be because there's been increased dryness or thinning of the genital tissues, commonly so.

(12:24): If we then move into a sexual experience though, and we're anticipating pain, we're kind of going into it with negative anticipation, or anticipatory anxiety is another way of thinking about that, there is often an involuntary reaction in our body where our body clenches up and we tend to tighten our muscles, both our overall body muscles, but particularly our pelvis muscles, which surround the vaginal opening as well. There are over 20 different muscles in the pelvis, and I'll say more about this in a minute, but those muscles can often clench up in and tense when we're expecting something to be painful or harmful to us. And this is a very automatic reaction. It's a survival instinct of our body. Many times we're not even aware of it happening.

(13:05): Of course, moving into step three here, if our muscles are clenching up and we're especially having any sort of vaginal penetration, that might really cause quite a bit of pain for people. We are talking about pain from both the tissue health and the dryness perspective, but also pain related to muscle tension in that pelvic floor musculature.

(13:28): Moving to number four, pain is a really difficult thing. It reinforces very quickly for us. I often talk about this in the context of conditioning and paired association. If you ever had to take a psychology 101 class, you may recall that when two things are paired together over and over again, our brain starts to treat them as the same, and it's very receptive to pain. If something has been painful to us, we learn very quickly that is going to be harmful, stay away from it, and our brain really tries to keep us away from things that it perceives as potentially harmful or painful to us.

(14:02): What that tends to do is move us into five and six, right? So bracing of the body, where not only do we have perhaps tissue changes, where there's dryness and thinning of the vulvovaginal tissue, but now our muscles are kind of chronically bracing because we've learned that this is going to be a painful experience, and that's happened enough times that our brain thinks, oh, sex now means pain.

(14:25): Of course you can see here the ending result at number six is usually behavioral avoidance, and that makes good sense in the context of pain, actually. I often tell my patients that low desire in particular is a rational response to pain with sex. Our brain is not trying to encourage us to go do something that's going to hurt us. And so it's very common to see low libido, low sexual desire with pain. Avoidance. You might as well cross that out and put low libido. It is essentially the same thing, when pain has been part of the picture. So we'll come back to this in concept, especially as we're talking about getting out of that avoidance cycle later on today.

(15:07): A few additional notes about the pelvic floor muscles. You can see kind of an underneath image of these muscles, so this is looking at the bottom of the pelvis with the hips on the right and left side. Like I mentioned, there are over 20 different muscles in the pelvic floor, and these are responsible for a whole lot of our day-to-day functioning, including bowel and bladder function, just providing musculoskeletal support to our hips and our lower back, keeping all those pelvic organs in the right place.

(15:38): Pelvic floor tension and dysfunction of these muscles is very, very common for a lot of reasons. Even just being somebody who has a menstrual cycle puts you at a higher risk of having muscle dysfunction, much less if you're somebody who has had some pregnancies, if you've had any sort of surgery in this area of the body in the pelvis, that can really create dysfunction in the muscles pretty quickly. This is very, very common, but unfortunately quite under-recognized in our culture and still unfortunately to a degree in the medical world.

(16:07): We know that problems with the pelvic floor muscles, whether they're too tight, too tense, or too weak can really affect bowel and bladder function, and certainly, as we've been talking about, sexual function. This can lead to pain in this area of the body, both sexual pain as we've discussed, but also low back and hip pain. If the muscles are tense, that can contribute to constipation. So there's a lot of things that can happen when your pelvic floor muscles are not as healthy as we want them to be.

(16:37): For those that are not aware, pelvic floor physical therapy is the gold standard treatment. If you have any sort of concern with your pelvic floor muscles, whether that's overly tight, tense pelvic floor muscles, or pelvic floor muscles that are maybe weak and not as strong as they need to be, kind of the opposite side of the spectrum, where we might see things like leakage and incontinence, pelvic floor physical therapy is the gold standard treatment and we work very closely in our sexual health and survivorship clinic with our pelvic floor PT's. They are fantastic and a critical part of our team.

(17:07): Continuing with sexual intercourse, despite the pain, can make the pain worse over time. With all of this information what do we do if sex hurts? Step number one, stop. Please do not continue to have painful sex over and over and over again. As you saw with that sexual pain cycle, every time we have painful sex, the links in that cycle get reinforced and they get a bit harder to break, because our brain starts to associate sex and pain together. So not only does that really harm libido over time, but we can actually be making the pain worse by damaging the tissues and by reinforcing to the pelvic floor muscles, oh, this is going to be a bad experience, start to tighten up. As we discussed, this leads to avoidance pretty quickly.

(17:56): Step two, we need to be assessing both aspects that we discussed. Let’s look at vulvovaginal tissue health. Do we need to be treating genitourinary syndrome of menopause? Do we need to be treating graft versus host disease in the genital tissues? We need to assess those pelvic floor muscles. Treating the tissue health is a different process than treating the muscles, but not everybody needs both things, and so a good assessment, good medical evaluation is really, really critical here.

(18:25): Step three is from a behavioral, psychological, relational perspective, and we'll talk a lot more about this to the end of today's presentation, what we want to be doing is exploring pleasurable, non-painful sexual activity. We don't want to continue to reinforce that avoidance cycle. We still want to maintain a connection, particularly with our partners, but we need to do so in a way that's not just reinforcing pain over and over and over again. And we'll come back to this with some specific strategies in a bit.

(18:57): How do we optimize vulvovaginal tissue health? There's a lot of over-the-counter stuff that's available to us, which is wonderful. Things like hypoallergenic, body-safe lubricants, there are many different types of lubricants. These can be water-based or silicone-based. There's some others as well, like hybrid-based or oil-based, but we typically recommend a water-based or silicone-based. These are things that you can get over-the-counter, but you do want to be cautious and avoid products that have things like preservatives, glycerin, things like that, that actually can irritate the genital tissues.

(19:32): Over-the-counter vaginal moisturizers are really, really helpful for folks that cannot have vaginal estrogen for whatever reason medically. So vaginal moisturizers are different than lubricants. Lubricants are really used specifically for sexual activity, versus a vaginal moisturizer, where it kind of sounds like what it is. You're applying this product, usually on the vulvar tissues on the outside, and kind of right at the opening of the vagina, right where those hormone receptors are, to keep that skin nourished and moist and start to kind of undo some of the damage that can happen with the genitourinary syndrome of menopause and graft-versus-host disease in the genitals.

(20:13): Our patients are really surprised to learn is the role that vibrators can play in optimizing vulvovaginal tissue health. We certainly live in a culture where vibrators are considered sex toys and sexual aids and often really for pleasure and perhaps orgasmic functioning, and that is definitely true for people. Where I work in my clinic, we often are talking about vibrators, however, as rehabilitation for the genital tissues. So if there has been GSM or genital GVHD, vibration actually helps improve blood flow to the genital tissues. It can help bring blood flow, which in turn brings more oxygen to those tissues, and if we've had dryness and thinning of those tissues, more blood flow and more oxygen is a good and positive thing.

Vibration can certainly feel pleasurable, and that's not a bad thing, but we actually think about vibration as more of kind of a medical rehabilitation for these tissues as well. Vibration, of course, can also help relax the pelvic floor muscles. So we see vibrators as this very important therapeutic intervention for both vulvovaginal tissue health, but also pelvic floor muscle health as well.

(21:25): There are certainly things we can do at a prescription level. Vaginal estrogen is topical estrogen. This is not systemic, so this wouldn't be like a pill or patch. This would be a vaginal estrogen, typically a cream. There's a couple of different ways that this can show up and be prescribed. This would be prescribed by a physician, of course. This can be very, very useful for GSM and GVHD. For genital GVHD in particular, topical corticosteroids might be a treatment of choice depending on the patient, and of course, that would be also something you would need prescribed by a medical provider.

(22:07): I wanted to make sure, one thing that is something that's a little bit of a limitation for me as a psychologist, as a sex therapist, I'm not a prescribing provider. I work with a whole slew of incredible sexual medicine providers, physicians that specialize in sexual health and sexual medicine who prescribe things like vaginal estrogen and corticosteroids for GVHD. For me, I'm more on the relational and behavioral and psychological side of things, and we work together as a multidisciplinary team with, again, our pelvic floor physical therapists.

(22:39): I find that it's often hard for patients who maybe are visiting us at Mayo Clinic, who then are going back to another state or even another country, to find sexual medicine providers. I wanted to make sure I provided us today with some resources on where to find folks like this that can help become part of your sexual medicine and sexual health team, because for many patients, it requires providers from different specialties, psychology, sexual medicine, pelvic floor physical therapists. So what you have here are links to several different professional organizations where you can search for specialists in this area. I hope that that can be helpful for those of you that are looking to assemble your care team to work on improving sexual health.

(23:24): Here are some take-home points for sexual pain. Three main causes here, treatment-induced menopause resulting in the genitourinary syndrome of menopause, genital GVHD, and pelvic floor muscle tension. Transplant survivors might have one or all three of these things, so it really ranges and it can be quite a case-by-case basis.

(23:45): What do we do if sex is painful? Stop having painful sex. This is really, really critical. That does not mean that all sexual activity has to stop, but we really have to stop reinforcing that pain cycle. Instead, we want to pivot to explore what feels good, non-painful, perhaps non-penetrative sexual activities, especially as the pain is being medically assessed and treated. We don't want to lose that connection with our partner, but we don't want to keep forcing through pain either. That is never a step that's going to reduce pain in the long term. Step two, optimize that vulvovaginal tissue health. Step three, assess the pelvicfloor muscle health, treat any of those things as needed with your care team.

(24:32): All right, so another big impact of cancer treatment and transplant survivorship is loss of sexual desire or low sexual desire. The terms libido and sexual interest are synonymous with sexual desire, so you'll hear me using all of these terms interchangeably. I find that many of the patients I work with have no idea that there's actually two different types of sexual desire or libido, and it's a really important starting point to have an understanding of these two different types of sexual desire so we can decide what we're working on or what we might need to work on with treatment.

(25:15): Spontaneous sexual desire is a bit what it sounds like and I find that this is what most people think about when they are thinking about libido or sexual desire. This is being interested in sex and simultaneously having some physical arousal, whether that's lubrication or erections or genital swelling of some kind. It happens like a lightning bolt, kind of this moment of turned-on feelings, this moment of interest that's not necessarily clearly driven by anything or caused by anything, at least nothing obvious to that individual. It happens kind of out of the blue.

This tends to be a very powerful experience for folks because it includes that bodily arousal, but it's important to note that physical arousal, sexual arousal like lubrication, genital swelling, the heart rate going up, that's actually a different thing than desire. Desire is psychological. Desire is an interest in sex. For people who are more spontaneous in their desire, both things tend to happen at once, the physical arousal and the mental interest.

We know that spontaneous sexual desire is impacted by hormone levels and some of the chemistry in our brain - so neurotransmitters like dopamine and  norepinephrine - so there is a biological underpinning for spontaneous sexual desire for many people-so there is a biological underpinning for spontaneous sexual desire for many people. This means that this can decrease with things like menopause or reduction in hormones.

(26:41): That being said, I meet a lot people who have never had spontaneous sexual desire. It's just never been kind of their style or their type of sexual desire, and that's really important to know, because unfortunately, spontaneous sexual desire is really the only thing we see represented in our culture. It's in the movies and the shows we watch and the books we read, where all of a sudden the characters have this kind of lightning bolt, spontaneous moment of sexual interest and then perhaps they go act on it in maybe an unrealistic way in the movie you're watching. It's very common for people to be comparing themselves to this kind of cultural standard of spontaneous sexual desire, without recognizing that there's a totally different type of sexual desire that might actually be a better fit for them, and something that might have been more of their style all along, or perhaps something that they've moved into with age, with treatment, etc.

(27:33): That would be responsive sexual desire. Responsive sexual desire refers to that fact that body arousal, physical sexual arousal is different than mental interest. For people whose sexual desire is more responsive in style or type, they find that their body really has to get aroused first before their mind clicks in, before they're like, oh yeah, this feels good, I'm happy to be here, let's continue on with this experience. The body arousal, that physiological arousal really has to be on board and happening before the mind gets into things, hence the term responsive, that the desire responds to body arousal. That means we have to be focusing on body arousal first.

(28:26): I won't go through every piece of Basson's circular model, but I do want to kind of acknowledge her incredible influence in the field of sexual medicine, sex therapy, where Rosemary Basson, who was a gynecologist and a physician really kind of acknowledged and started conceptualizing for the sexual medicine field these two different types of sexual desire. You can see here in the middle of the graphic, spontaneous desire, as we just discussed, that interest in sex that's often occurring at the same time as physical arousal, kind of comes out of nowhere, kind of starts on its own. And so her model, which she published in the year 2000, really recognizes that traditional thinking around spontaneous desire, what we often think of culturally as desire.

(29:14): The circular portion, however, around spontaneous desire is what she went on to describe as responsive sexual desire, what we just talked about. So this idea that for many people, sexual arousal, the body arousal has to happen first, which you can see down there on the lower right-hand side, before responsive desire kicks in.

(29:36): Then of course, the sexual experience, the touching, whatever is happening, it has to go well. There has to be satisfaction, there has to be pleasure for that cycle to continue on. You can see there, emotional intimacy, sexual neutrality. These are also other places that people who are more responsive can get into a sexual experience. So you might start at a sexually neutral place, but be more open to sexual stimuli. There are lots of different ways that we can enter the cycle, which was a really important thing that Dr. Basson introduced to the field, and it helps us understand the complexity and how individual sexual response and sexual desire can be for people.

(30:18): I already mentioned that there are biological influences to spontaneous desire, like estrogen, testosterone, dopamine in the brain, and of course, as we know, both of those things are often impacted by cancer treatment. For many people, they end up in a more responsive desire place, or perhaps as they're thinking about the difference between spontaneous and responsive desire, recognize that, oh, maybe my style of sexual desire has always been more responsive. That's something that unfortunately comes up a lot in my office, where people have been comparing themselves to spontaneous sexual desire all their lives, and that's never really been their type of libido.

(30:59): There are four requirements for responsive desire to happen, and this is something that is covered in a lot more detail in the book that I co-authored with Dr. Lauren Fogel Mersy, but I do want to take a second to talk through some of these four requirements today.

(31:16): So we mentioned that for responsive desire to happen, the body has to get going first, and so in order for that to happen, we're usually thinking about some sort of touching, not necessarily genital touching or sexualized touching in any way, but some sort of physical touch that is feeling good, right? So pleasure is part of that. If the touch is painful, if the experience is just sort of neutral, responsive desire is going to be difficult to come by. So of course if there's pain, responsive desire is going to be quite difficult.

(31:48): On that upper left-hand side, consent is a big piece of this, so I use that in the most broad sense of the term. If you're not willing to be touched by a partner or to be in that experience with them, if you're sort of doing it because you feel like you need to or you should, it's going to be difficult for a responsive desire to arise with touching, if you feel like you're having to kind of force yourself into it. That is not a fully consensual experience, and it's something that can be addressed oftentimes in therapeutic settings.

(32:21): You might be very willing to be engaging with your partner, touched with your partner, the touch might feel really good, but if you're not able to focus on it, if you have kind of a busy brain, if you're distracted by something, the to-do list, the noise down the hallway, whatever that might be, it's going to be really difficult to create responsive desire, because your brain's not actually focused on the sensation that your body is getting.

(32:45): Then, of course, time. You could have all the most pleasurable, willing, focused touch in the world, but if it's only lasting 30 seconds, that's probably not enough to create responsive desire. This can take a bit of time for people, especially if they struggle to focus or if they struggle to find touch that feels pleasurable to them. So each one of these four components are pieces that we may need to work on. Typically, these are things that come up within a sex therapy or relationship therapy type of environment.

(33:16): Another piece of this is that if you have different libido styles, we often need to shift our framework of sexual initiation. The way we tend to initiate sex is, "Hey, do you want to have sex?" Or, "Hey, do you want to head to the bedroom?" Some iteration of that initiation. And what that really is, without us realizing it, is a spontaneous sexual desire initiation, not, are you willing to see if this works? Are you willing to do some touching and see if that happens?

(33:49): We often encourage partners to start to use a 0-10 scale, what we call the willingness scale, where they can kind of gauge for themselves, zero being, yeah, no, I'm not having spontaneous sexual desire, but I'm not even really in a place where I'm willing to try to see if responsive desire can happen either, to ten being, yeah, I'm not having spontaneous sexual desire, but I am rested, I feel like I can focus. I'm definitely willing to do some touching and see if we can get something going.

(34:19): An important part of using that willingness scale is exploring breaks and accelerators. It's worth noting that accelerators and inhibitors, or gas pedals and brake pedals, are the things that can make us more or less willing to engage to see if responsive sexual desire occurs, and that these are very person-dependent and even context-dependent. Something that might be a gas pedal for one person could be a complete brake for another.

(34:49): Anxiety is a good example of this. For some people, when they feel anxious, when they feel stressed, that's actually a gas pedal. They're more likely to be willing to seek comfort, physical touch with a partner. For other people, when they're anxious, when they're stressed, that's a brake pedal in a big way. They're like, nope, can't even think about this. Can't even focus. And so, this could really go either way depending on the person and the context.

(35:14): A couple of really critical resources here for more information on the different styles of libido, we could spend four hours in a workshop talking about this. It's quite a nuanced and complex topic, as you can probably tell, but I want to make sure you have some really good resources for at home reading and for further exploration of this topic, including some books with some really great exercises for partners to explore.

(35:39): The take home point around sexual desire is that it is really critical to recognize that there's two different types or styles. You may have been spontaneous and moved into a more responsive style, or you may have always been more responsive, or perhaps you're having spontaneous desire and not quite sure how to initiate, now that things have changed after transplant.

(35:59): Responsive libido often becomes a predominant style, particularly with hormone changes, aging, and in long-term relationships. We can optimize responsive sexual desire by understanding those four requirements, consent, pleasure, focus and time, and understanding your own personal brakes and accelerators through the willingness scale.

(36:23): So quickly, in thinking about addressing an anxiety avoidance cycle, I want to talk folks through a tale of two different approaches. Oftentimes in a sexual environment, we have a very linear script for how partnered sex goes, something that we like to call the sexual staircase, pictured here. The sexual staircase is a very prescriptive way of being sexual and it is very goal-oriented. It typically ends in our culture with penile vaginal intercourse and orgasm being kind of a last thing on the list.

(36:56): For many folks after transplant, and frankly for many other reasons, this is not the most helpful script for sex and we need to start moving into a more open-ended, more flexible style of being sexual with a partner, where there are lots of different options and we can kind of choose our own adventure. This shift can be really tough if you're used to relying on the sexual staircase for all of your relationship or perhaps all of your sexual life, as many, many folks in our culture do.

(37:23): Moving to more of this wheel model, this more open-ended model, however, is a wonderful way to stay more flexible and more connected, especially if certain types of sex, for example, painful intercourse, need to come off the table for a little while. There are lots of other ways to feel pleasure and connection with a partner.

(37:42): A helpful technique to help regain intimacy after transplant is “intimacy dating”. A really common exercise that we do to help partners get off the sexual staircase and thinking more flexibly about their physical intimacy is what's called the intimacy date exercise. This is something that's outlined in a lot of detail in the book that I co-authored, Desire. This is intentional time to kind of practice that more open-ended, pleasure-focused wheel model of partnered intimacy.

(38:08): I want to be really clear here that planning intimacy date is different than scheduling sex. So when we think about scheduling sex, what most people tend to have in mind is that staircase. So okay, we're going to schedule sex once a week, and it's going to be intercourse, and maybe that's painful, but that's what we feel like we have to do. As we've talked about, sexual pain shouldn't be happening. We need to stop. Planning an intimacy date, however, uses the same concept of kind of going to a restaurant. So if you are making a reservation at a restaurant, you hold the day and time, you know when you're going to be there, but you don't generally order your food before you get to that day and time, right? It's only when you get to that restaurant reservation that you sit down with your partner and decide, oh, do we want to do a full three-course meal? Do we just want to do appetizers? What about if we just skip and have dessert tonight, right?

(39:01): We think about the intimacy date, very much like that restaurant analogy. I want partners to have scheduled time together, protected from all the stressors and responsibilities of life, an hour a week just to spend on each other. But what you do in that time, we want to decide when we get to the time, rather than thinking about, oh my gosh, this has to be the staircase. We're going to have intercourse. It's going to be painful and pressured, creates a lot of anxiety for folks. If we use the restaurant analogy, once we get to our intimacy date, we can then focus on what is it that we feel open to today? Maybe we didn't sleep very well last night, but we still want to have some touching. We still want to have some stimulation. We still want to connect with one another, but we need to kind of modify what we do.

(39:46): I have a sample menu here, which I will let you read at your leisure. So lots of different options, again, with the goal, not necessarily of a specific type of sex such as intercourse, but really the goal here becomes feeling good together, feeling connected together. And frankly, there are many, many ways to do that. Oftentimes that requires some creativity and some exploration if this is a new concept for you.

(40:13): A sex therapist can help partners explore ways to achieve intimacy after transplant, despite changes caused by the transplant. There are many other behavioral approaches for improving sexual relationship and connection in this way. Unfortunately, we don't have a ton of time to go into those today, but I will put a plugin for considering seeing a sex therapist if you need additional support. I find that a lot of patients really struggle to get out of that sexual staircase mindset where it's very focused on a specific type of sex, really to the detriment of pleasure and feeling good together. And if that's a script that you struggled to get out of with your partner, it could be really beneficial to work with sex therapist for a little while to help with some of that flexibility and that exploration.

(40:51): The final take home points here are really important, if we're feeling that anxiety, avoidance cycle around sex, it is really important to get off that sexual staircase, to really reassess what the goal here is. The goal is not necessarily a specific type of sex, but the goal is to feel pleasure, to feel connected to your partner, to enjoy each other together. A flexible and open-ended approach to sex really helps to address pain. It actually helps us to build that responsive sexual desire, and really address those sexual anxiety and avoidance concerns. It helps us to reconnect with our partner and disrupt that kind of avoidance pattern that so many of us can get stuck in, especially when things have changed with our bodies.

(41:32): Things like intimacy dates and other behavioral exercises are often really key, at the same time as perhaps medical treatment is happening. So for example, for GVHD or GSM or pelvic floor muscle tension, these are behavioral exercises that you and your partner can still be doing together while we're working to get your body in a healthier place for sexual activity. Of course, consider sex therapy for further support.

(41:58): Another take home point is that transplant does not take away your sexuality. Help is available. If sex is painful, please stop and talk to your doctor. Optimize that genital tissue health and those pelvic floor muscles. We want to make sure all of those things are healthy. Try things like moisturizers, lubricants, vibrators that are over the counter, and thinking about moving into that more non-painful, flexible type of sexual approach, getting away from the staircase.

(42:31): It's really critical to understand the two different types of sexual desire, aka libido, and for many people, especially after transplant, to maximize their responsive sexual desire. If we're stuck in an avoidant cycle with our partner, feeling anxious about sex, feeling like we want to avoid that, got to get off the staircase. We can do that with intimacy dates and other behavioral exercises, things like sensate focus and working with a sex therapist, people who specialize in this work with partners for further support.

(43:05): All right, thank you so much for your attention and for your time. If you want to connect with me, you can find me online on Instagram, @drjennifervencill, and I'm very happy to spend the next 15 minutes or so answering your amazing questions.

Question and Answer Session.

(43:22): [Marsha Seligman]:   Thank you, Dr. Vencill, For your wonderful presentation. We will now begin the question and answer session. The first person, the question is, how do I handle a partner who takes Cialis and always wants sex, and I don't due to post-menopausal painful changes, not to mention my high-risk, multiple myeloma treatments? We are 70 and 67. Hormone replacement therapy is not an option.

(43:58): [Dr. Jennifer Vencill]:   A wonderful question and such a challenging situation. Thank you for asking. So certainly from a physical and medical perspective, we've got to get that pain dealt with. So I hope that you're able to find a medical provider that can help address the pain piece, because as we've discussed today, what should not be happening is painful sex over and over again. That is certainly not going to help with your libido or your interest in being sexual if you're just worried about sex hurting every single time.

(44:25): So that has to be, I would argue, a really important piece of this conversation with your partner that we should not be having painful sex, but I do wonder if there are ways to get off, again, that kind of staircase, that pressure around penetration that sounds like it would be quite painful, and start to do backing up and starting to do some connection physically in non-penetrative, non-painful ways. Thinking about something like an intimacy date. That may mean that he needs to back off of the Cialis for a while, but that's of course a conversation that the two of you would need to have together.

(44:58): If this has been a tough topic to talk about, which I think is very common for folks, this is not a topic that we're really encouraged to talk about very openly in our culture, you really might benefit from working with sex and relationship therapist to start to navigate this kind of stuckness that it sounds like you're feeling.

(45:17): [Marsha Seligman]:   The next question says, my partner has been my medical caregiver for many years. What are some ways to nurture a more sexual relationship, especially when we have young kids and libido was already a challenge prior to cancer treatment?

(45:34): [Dr. Jennifer Vencill]:   Yeah, wonderful question, and I think the good news is, the answer is really the same across these various situations. We have to get off the sexual staircase. I find, and I suspect that this audience member, what's not being said here is that there's sort of a script around sex historically in their relationship, and that is something that has to be undone in order for us to kind of reestablish positive and pleasurable sexual experience.

(45:59): So intimacy, date exercises, things like sensate focus can be really, really useful here, and just starting to get back to basics. What is it like to touch one another and to feel good without the pressure and anxiety that perhaps comes with, oh, this might "lead to something." We have to kind of unlink those behaviors, both in our behavioral approach with our partner, but also mentally, because we have this sexual staircase really deeply embedded in our brains in this culture.

(46:31): And so, starting to recognize that touch can just be touch, whether that's genitally focused or another part of the body, but really starting to think about how we can optimize pleasurable touch and connection without the pressure of it "leading to something." Usually that means penetrative intercourse. That oftentimes really needs to be taken off the table for a while, so that folks that are working to establish responsive sexual desire feel safe to explore without pressure.

(47:03): [Marsha Seligman]:   Can you discuss how to deal with vaginal canal narrowing after too long without penetration?

(47:10): [Dr. Jennifer Vencill]:   We want to make sure those tissues are healthy, so we might be talking with our providers about using a vaginal moisturizer, perhaps vaginal estrogen cream or something to treat graft versus host disease if those are at play. But also, working with a pelvic floor physical therapist on what's known as dilator therapy.

(47:32): So vaginal dilators come in various sizes. We start very, very small and kind of work our way up to really help continue to keep those vaginal tissues open when stenosis has taken hold. And that's a gradual process. We want to do that slowly so we're not sort of just pushing through pain. Again, that's not something we ever want to be doing. But working with a pelvic floor physical therapist for dilator therapy can be very, very effective for folks.

(47:57): Oftentimes, that doesn't necessarily mean seeing a pelvic floor physical therapist week after week. You might have a session or two with them and then they'll establish a home program for you. I realize it's not always accessible for folks to see somebody on a consistent weekly or bi-weekly basis, so perhaps seeing a pelvic floor physical therapist, bring your dilators with you to that appointment, and then they will establish, typically, a home program for you to be helping with that stenosis.

(48:26): [Marsha Seligman]:   What is happening from a body, physical point when orgasm builds but never rolls off the top? It is like standing on a curb with your foot in the air, ready to walk across the street, but I never step off the curb.

(48:39): [Dr. Jennifer Vencill]:   Yeah, so frustrating. There can be many, many things going on here. Without a good sexual health history, it's hard to give a specific answer. However, a couple of really common things. Something that I see a lot is that if the vulvovaginal tissues or the pelvic floor muscles are not healthy, from a physical standpoint, orgasm will be compromised. So if the genital tissues aren't healthy, we tend to lose a bit of sensation, and that feeling of arousal might kind of get stuck and plateau. That kind of feeling of I'm almost there, I'm almost there, but I'm not. So too, if the pelvic floor muscles are tense, overly tight, it might actually be difficult for the body to physically release those muscles and have an orgasm. So that's from the physical standpoint.

(49:24): I'm a psychologist and a sex therapist of course, so a lot of times I'm working with folks on both optimizing what actually feels good. Do we need to change what we're actually doing, in terms of stimulation with our partner or by ourselves? But also, mentally what's happening in those moments of stimulation. Many people get stuck in what we call ‘spectatoring’ in the sex therapy world. Spectatoring is essentially becoming a spectator of yourself during a sexual experience, where you're kind of judging yourself, often being pretty critical of why isn't it happening? Why is it taking so long? This isn't the way it used to feel like. Is my partner upset? Are they bored? What's going on here? If that is sort of a running train of thought that you're having, chances are high that you're spectatoring.

(50:06): The thing about spectatoring is if we're doing that during a sexual experience, whether that's by ourselves or with a partner, it is going to make building arousal to orgasm very, very difficult, because we're so focused on that running thought train that we're not able to really be present in our body for the arousal to build and climax. Mindfulness approach is very, very effective here. Sex therapists are really, really well-versed in working with folks through spectatoring experiences, but we've got to get out of that kind of distracted thought process from a psychological perspective,

(50:42): [Marsha Seligman]:   Being immunocompromised with GVHD for years now, risk of infection has always been a fear when initiating penetrating sexual activities. I understand that there are other activity options, but this is something that is just not an option... But is this something that is not an option until I am no longer immunocompromised?

(51:08): [Dr. Jennifer Vencill]:   If I'm understanding the question correctly, this person's asking about whether penetration needs to be put on hold until immunocompromisation is gone, is that...

(51:23): Okay. I want to be clear here, again, I'm not a medical provider, and so this is absolutely a question that if you have not asked your medical team, your care team, absolutely I would encourage that. I will say that there are ways to reduce the risk of infection with penetrative sexual activity, things like barrier methods for example, and so that is a piece of this that needs to be explored, but really with the guidance of your medical team. If they're saying to you, we give you the green light to do this from a physical and medical perspective, then of course that's an answer. If you're hearing that but still not able to overcome the anxiety about it, that actually might be something that's worth working with a sex therapist on, because that's then not necessarily about infection, it's more about sort of the fear and anxiety about infection.

(52:13): [Marsha Seligman]:   Someone would like to know, where do you suggest starting if you've lost libido of any type since transplant?

(52:25): [Dr. Jennifer Vencill]:   First and foremost, we want to make sure that things are healthy with your body. So if there's been any sort of pain, dryness, any of those things that we sort of discussed today, with potential GSM, genital graft versus host disease, pelvic floor muscles, make sure the body's healthy first.

If this is an audience member who's like, nope, no pain, no dryness. Physically, my body is in good shape. This is really specifically about low sexual interest. That is typically where we are working with a sex therapist, because as we've talked about, sexual interest, libido has some biological underpinnings, but we think about that as predominantly psychological and relational in nature.

(53:04): I gave a couple of important reading resources there. Those can be really helpful. Not everybody has access or time to see a sex therapist. That's something that we're very well aware of in my field, and so there are wonderful books “Come As You Are”, like “Desire”, that are really meant to take some of the foundational knowledge that sex therapists teach to their patients and their clients and really put them out there for a general audience so that you get some of that initial important information. And sometimes that's enough to be helpful for folks. Sometimes you need additional care, and so I would start with some of that kind of at home, reading, bibliotherapy kind of work, but potentially thinking about seeing a sex therapist as well.

(53:48): [Marsha Seligman]:   What is the recommended time to start sexual activities after transplant? Does my immune system have to completely recover first?

(53:58): [Dr. Jennifer Vencill]:   Yeah, I think we've already answered this. So this is a really important question for your medical team. Everybody's going to be a little bit different, and it depends on how the transplant itself went.

(54:09): [Marsha Seligman]:   Is Replens better to use for vaginal dryness rather than something like Aquaphor?

(54:18): [Dr. Jennifer Vencill]:   This is certainly something that I would encourage you to ask your care team. I can speak for just the clinic that I work in. We no longer recommend Replens because it's irritating to many patients because of the preservatives that are used in that product. So we are typically looking at vaginal moisturizers that come from companies like Good Clean Love, Sliquid. Those are products that we sell in our clinic because we know that they are body safe, they're hypoallergenic, and they are less likely to irritate people's genital tissues. So those are the brands that we tend to go with in the clinic that I work.

(54:56): [Marsha Seligman]:   This will have to be our last question because we are running out of time. The comment for the next question was, I am immunocompromised and more susceptible to infection. So this is another infection question. Is this a concern with sexual intercourse? My platelets are also below a hundred thousand. Is sexual penetration an option or something I should be careful with after the lubrication and pelvic floor issues have been resolved?

(55:25): [Dr. Jennifer Vencill]:   Yeah, I think it's definitely an option. As I've said several times, we need to check with our care team, just make sure we have the medical clearance, but if the tissues are healthy, the muscles are healthy, from that perspective, for sexual penetration or vaginal penetration, we should be an okay place. From an immunocompromisation or kind of infection standpoint, we always want to check with our care team about that, the medical team, just to double check. But generally speaking, that's pretty safe.

(55:58): [Marsha Seligman]:   On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Vencill for a very helpful presentation, and thank you, the audience, for your excellent questions. Please contact BMT InfoNet if we can help you in any way.

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