Women’s Sexual Health after Transplant

Sexual difficulties are common for women after a stem cell transplant. Learn what causes low desire and pain during sex and effective treatment options.

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Women’s Sexual Health after Transplant

Monday, May 2, 2022

Presenter: Jordan Rullo PhD, ABPP, CST, University of Utah

Presentation is 40 minutes long with 16 minutes of Q & A.

Summary: Transplant does take away a woman’s sexuality but it can cause sexual difficulties after transplant. There are a variety of effective treatments. Good communication between partners is one important ingredient in resolving sexual difficulties after transplant.

Highlights:

  • Nearly half of women experience sexual difficulties after a stem cell transplant.
  • The top sexual problems reported by women after transplant are low sexual desire, pain with sex, a reduction in the quality and quantity of sex, poor body image and infertility.
  • Sexual difficulties usually do not get better over time without treatment.

Key Points:

(13:30): Biological factors that cause low sexual desire after transplant include total body radiation, chemotherapy, genitourinary syndrome of menopause (GSM) and fatigue.

(15:17): Psychological/emotional factors that interfere with sexual desire include anxiety, depression, poor body image, history of sexual abuse or trauma and substance abuse. 

(17:30): Discord in the relationship with your partner, a partner who has sexual functioning problems, inadequate stimulation and lack of privacy during sex can affect sexual desire.

(22:10): Genital graft-versus-host-disease (GVHD) and premature menopause can cause pain with sexual activity.

(24:16): Estrogen is the gold standard in improving sexual arousal and overall sexual function.

(25:50): Women experiencing sexual pain should stop having penetrative sex before sex and pain become psychologically associated and cause further problems with sexual functioning.

(28:25): Regular use of vaginal moisturizers can help reduce pain with sexual activity.

(30:31): A menu of non-penetrative sexual activities can provide sexual satisfaction without pain.

(31:23): Topical corticosteroids and working with a pelvic floor physical therapist can help women with genital GVHD.

(32:04): Estrogen is an effective treatment for vaginal dryness caused by GSM (genitourinary syndrome of menopause).

Transcript of Presentation:

(00:00): [Sue Stewart] Introduction of Speaker. Welcome to the workshop, Women's Sexual Health After Transplant. My name is Sue Stewart, and I'll be your moderator for today's session. It's my great pleasure to introduce to you, Dr. Jordan Rullo. Dr. Rullo is a board-certified clinical health psychologist and adjunct assistant professor in the Department of Clinical Psychology at the University of Utah. She also maintains a private practice in Salt Lake City, Utah. Her specialty includes sexual health concerns and sexual health related to menopause and cancer. Please join me in welcoming Dr. Rullo.

(00:41): [Dr. Jordan Rullo] Overview of Talk. Thank you. Thank you for that nice introduction. Thank you all for being here. I'm very excited to be here and give this presentation. So my presentation today is on Women's Sexual Health After Transplant. Let's dive right in.

(00:56): A few learning objectives. We're going to talk about the incidence and type of sexual difficulties in women following hematopoietic stem cell transplant; the impact of these on quality of life; techniques and therapies available for improving quality of sexual experiences; and the cause of pain during sex after transplant, and possible treatment strategies.

(01:21): Women’s sexual problems after transplant does get better unless it’s treated. Nearly half, nearly half of people after stem cell transplant experience sexual dysfunction. And for women, this sexual dysfunction does not get better over time unless it's treated. And this is what we're going to be talking a lot about today.

(01:43): The top sexual concerns for women after transplant are low sexual desire, sexual pain, and reduction in quality and quantity of sex. So let's talk about sexual health and transplant and the most common sexual health concerns: low sexual desire, sexual pain, reduction in quality and quantity of sex, and poor body image, as well as infertility. These are the most common sexual health concerns. And in today's presentation, I'm going to be focusing on these three, the top three: low sexual desire, sexual pain, and reduction in quality and quantity of sex.

(02:12): Sexual difficulties after transplant can become a vicious cycle. You are at greater risk of these sexual health concerns if you are/or have been on chemo, if you've had total body irradiation, if you're on a variety of medications, and if you're experiencing just overall psychological or psychosocial distress. And what happens is, there is this vicious cycle that develops because with the treatments you're on, if your sexual function declines, then you feel bad, and then because you feel bad, your sexual function declines even more, and then your partner feels bad. And then that probably causes some relationship discord that reduces just overall quality of life.

(02:55): If this is happening to you, you're probably wondering, "Okay, well, what do I do?" Well, first of all, what I want to say is transplant does not take away your sexuality. It does not take away your sexuality. There is treatment for sexual health side effects after transplant.

(03:16): The most common sexual side effects are low desire and sexual pain. And we're going to talk about both of those. We're going to talk about how to treat them, and then how to navigate your sexual relationship if you're dealing with these sexual side effects.

(03:31): There are two types of sexual desire: spontaneous and receptive. Let's start with the first one, low sexual desire. And in order to start with this, I've got to describe a few important things around sexual desire. So super, super important. There are two types of sexual desire. And a lot of us don't know this. If we did get sex education, it probably wasn't talked about, so most of us probably don't know this.

(03:50): What we hear as sexual desire is probably what we see in the movies. And most of what you see in the movies with sexual desire is what's called spontaneous sexual desire. And that's that type of desire where you have that internal drive, that internal craving, and just spontaneous. You're like, "Oh, I really want to have sex right now." That's the main desire we're probably seeing in the media, that's talked about, we see in the movies, the spontaneous sexual desire.

(04:13): But there's a second sexual desire that is equally important that we're going to spend a lot more time talking about which is called receptive desire. You'll also hear me in the presentation talking about it as a responsive desire or willingness desire. So it has a few different names, but right now we'll call it receptive desire.

(04:30): And receptive desire looks like this. It is not spontaneous. You are not thinking, "Oh, I really want to have sex right now." In fact, you're in a really neutral place. Sex is not on your mind. But the ingredients are in place that allow you to feel receptive to being sexual. And so, maybe those ingredients are, you're having a good enough day. That day, physically, you feel well. There's privacy. You're not feeling stressed out. You're feeling close to your partner. And then your partner initiates and you think, "Oh, well, I wasn't thinking about sex. It's not on my mind. But yeah, I would be receptive."

(05:07): And then once the sexual activity gets started, once your body starts to feel sexual arousal, then you're like, "Oh yeah. You know what? I'm glad we're doing this. Why don't we do this more often?" That's receptive desire. Okay. So two different types of sexual desire, spontaneous desire, and receptive desire.

(05:24): And I want to show you receptive desire pictorially. So this graph, which looks a little bit busy. This model is called the circular model of sexual response. And so, let me explain this. This is the model or the pathway in which women respond sexually. If your main desire is this responsive desire, you're going to respond like this.

(05:49): Spontaneous sexual desire is an immediate response to sexual stimuli. And I know you're like this, "What is this? This is a really complicated slide." So let me jump in. In the middle of the slide, you see that spontaneous sexual drive, that green box right in the middle of the slide. If you happen to have spontaneous sexual desire, you're one of those people that just randomly has that desire, that's going to kick-start the cycle. And you see three arrows coming from that box. So one arrow points down to sexual arousal, one arrow points over to sexual stimuli. So if you just happen to have spontaneous sexual drive, maybe you just happen to feel aroused in that moment, and that kick-starts this cycle. Or maybe you just have a spontaneous sexual drive and you just seek out some sexual stimuli. You want to go turn on Bridgerton or read a steamy novel. That may be one way that kick-starts your sexual response. You just happen to feel that spontaneous sexual drive.

(06:37): Receptive sexual desire follows other pathways to arousal and then desire. Now, the other way that can kick-start this cycle is, again, that receptive desire. So you can see in the upper right corner, it says being receptive to. So perhaps you're not feeling any spontaneous drive, but you happen to be receptive. All those ingredients are in place that allow you to be receptive. Now, if we follow this arrow down, so let's say we're in the upper right corner where it says, "Seeking out and being receptive to," through the upper right corner. Let's follow that arrow down. So you're receptive to some sort of sexual stimuli. Maybe that's your partner initiating. So partner initiates, and then let's keep following that arrow. As long as biologically and psychologically, everything's in check, biologically your body's feeling good, psychologically, you're not too stressed, you don't feel depressed, then let's keep following the arrow. The next thing that happens is sexual arousal. And let's keep following the arrow, and that arousal eventually leads to sexual desire.

(07:27): Now, I want to pause for a moment and really highlight what's happening here in this cycle. What this is saying is that for most women, if their main desire is that receptive desire, not that spontaneous, but that receptive desire, what has to happen first is arousal has to happen first. That means the body has to get aroused. The body has to feel sexually aroused. And then, on the coattails of that arousal comes desire. So the body gets started, the body gets kick-started, and then the mind just says, "Oh yeah, this is nice. I like this. I want to do this. Why don't we do this more often?" The body gets started and then the mind comes on the coattails of that.

(08:10) Some women define the satisfaction they get from a sexual experience as orgasm, while others define it as emotional satisfaction. So then, let's keep following that arrow up. That leads to some sort of emotional and physical satisfaction. Some people describe the satisfaction they get from the sexual experience as orgasm, but a lot of people don't. They find satisfaction in other ways. They find emotional satisfaction. Again, keep following the arrow around, and that leads to feeling emotionally intimate or emotionally close with the person you're being sexual with. And then keep following that arrow. And then that cycle repeats itself. If you feel emotionally close with your partner, then you seek out, or you may be receptive to some sexual stimuli in the future. And again, that cycle repeats itself. We will come back to this because this is really important. So remember this model, we'll come back to it.

(08:52): Medication or treatments that impact hormones can alter spontaneous sexual desire. Now, if you are on any medication or have any treatment that impacts your hormones, that is going to change your sexual desire. It's going to change that spontaneous desire. Now, spontaneous desire, you think about it as having a gas tank. Most of the gas that fills that gas tank is hormones. And then the rest that fills that gas tank is that honeymoon phase of a relationship. We know the first 12 to 36 months of a relationship is that honeymoon phase where your partner can burp and you think it's adorable. And that's often where a lot more sexual activity is happening. But again, that cannot last any more than 36 months. I don't think I've ever worked with a couple where they've been in that honeymoon phase for more than about six months to a year.

(09:36): Longer term relationships can also alter spontaneous sexual desire. So if you are on a medication that's impacting your hormones, and you are in a relationship that's longer than 12 to 36 months, so you don't have that honeymoon gas anymore, what that leaves you with is your main desire is likely that receptive or responsive or willingness desire. Now, if this is you, and you're saying, "Yeah, that's what I've lived. with I don't have that spontaneous desire that I used to have before. I used to think about sex a couple times a week, but now, I don't." If this is where you're at, let's talk about the next steps. What do you do with this?

(10:12): Sexual desire can be viewed as a combination of a “brake” and a “gas” pedal. To discuss what to do with this, I've got to describe something that sounds really nerdy, but it's incredibly helpful. And it's called the Dual Control Model. So the Dual Control Model is based on the idea that for everybody, so for women in particular, but for everybody, their sexual function is divided into a brake pedal and a gas pedal. In order for your sexual function to function, in order for you to have desire, you need to have more on your gas than on your brake.

(10:38): For example, things that hit the brake pedal might be, if you're not feeling good about your body image, if you're tired, if you've had chemo, maybe you're feeling depressed, anxious, or stressed, those all hit the brake pedal. Things that hit the gas pedal, your partner smells good. They look good. There's novelty in the relationship. Maybe you have a strong emotional connection. So like I said before, you have to have more on your gas pedal than on your brake pedal in order to have a sexual desire.

(11:08): What's most important between these two pedals is actually the brake pedal. A lot of times when I see couples in my office, they say that they have low desire. They've tried everything they can to step on the gas pedal. "Well, we've tried date nights, and we've tried lingerie. We brought in toys." But that's actually, at least at the beginning, not very helpful. And the reason is, if you really think about this brake pedal and gas pedal as the brake pedal and gas pedal of a car. If there is so much on your brake pedal, so much weight on your brake pedal, that your brake is pushed all the way to the ground, all the way to the floor, and then you decide you want to put your foot on the gas pedal, what's going to happen to your car? It's not going to go anywhere. I mean, maybe the engine's going to rev a little bit, maybe the tires might spin a little bit, but that car is stuck. If you have a ton of stuff on the brake pedal, then the gas pedal is pretty irrelevant.

(12:04): The first step in improving sexual health is to identify the things that are reducing sexual desire. The first line in treating and managing a sexual health concern and trying to improve your desire is figuring out what is on your brake pedal and then removing as much as possible off that brake pedal. And then, once you've got some weight off that brake pedal, then you can start thinking about putting your foot on the gas. Then you can start thinking about adding things to the gas pedal. But when that brake is to the ground, the gas pedal is pretty useless.

(12:29): Four types of problems can affect sexual desire: biological problems, emotional problems, relationship issues and cultural factors. What I'm going to go through are the main things with transplant, and in general as well, but the main things that hit the brake pedal. And we're going to divide these things that hit the brake pedal into four areas. We call these four areas, the biopsychosocial model because there are biological or physiological factors that hit the brake pedals. There are psychological or emotional factors that hit the brake pedals. There are relationship factors, and other social-cultural factors, all that hit the brake pedals.

(12:59): As I'm talking through this, if you fit the category of what I've been describing, if you feel like your desire is low, you're more in that receptive category. Maybe there are a lot of things hitting your brake pedal. As I'm talking through this, I really want you to think, "Oh, how do I fit into this? Is that hitting my brake pedal? Is that hitting my brake pedal?" Really have a running list or even grab a piece of paper and jot down, "Yeah. What are the things hitting my brake pedal when it comes to my sexual function?"

(13:24): Okay. We're going to start with the physiological and biological factors that typically hit the brake pedal, especially transplants.

(13:30): Biological factors that interfere with sexual desire after transplant include total body radiation, chemotherapy, genitourinary syndrome of menopause (GSM) and fatigue. Total body radiation absolutely is going to hit that brake pedal and how it impacts your body, your health, your hormones. Chemotherapy, again, the same thing, how it impacts your body, your health, your hormones, fatigue, energy.

(13:42): Genitourinary syndrome of menopause, which we're going to talk more about toward the end of this presentation. I'll refer to it later as GSM. It used to be called vaginal atrophy. And it was when the vulva and vagina dry out, loses its elasticity, penetrative sex becomes painful. But they changed the name to GSM or genitourinary syndrome of menopause. One reason is women were tired of being told that their vagina had atrophied. So this is a much more accurate way to describe the system because it's not just about the genitals. It's also about the urinary tract. So GSM genitourinary syndrome of menopause, basically the vulva and vagina are in a state where any sort of penetration can be really painful.

(14:29): Menopause and aging can lead to less vaginal lubrication, painful intercourse, and problems with orgasm. Aging, as you get older, when it comes to sexual function, everything just takes longer and is less intense. It takes longer to build arousal. There's less vaginal lubrication. It's more difficult to reach orgasm, or orgasm is less intense. Hormones, and like I mentioned before, anything that's going to impact hormones is going to impact that spontaneous sexual desire. And there are a lot of treatments when it comes to transplant that impact your hormones.

(14:57): And fatigue, again, I keep mentioning this as well. Lots of treatments related to transplant that are going to impact your energy level. And at the end of the day, if someone offers you a platter of sex versus a platter of sleep, then you're saying, "Oh, I will take the sleep platter any day." Well, that says that fatigue is probably something hitting your brakes.

(15:17): Psychological/emotional factors that interfere with sexual desire include anxiety, depression, poor body image, history of sexual abuse or trauma, and substance abuse.  Okay, so next category. Psychological/emotional factors that hit the brake pedal. Anxiety. Anxiety is a big one. What happens with anxiety is it really shuts down sexual function because in order to have desire, in order to get aroused, you need to be in a relaxed state. You need to feel safe and relaxed. But when you're anxious, you're scanning the environment for threats. So imagine, let's say maybe you have your doctor's appointment every six months. Every six months, you've got your appointments. And I'm sure a month before, weeks before, you're starting to get really anxious, you're worried about what the future holds. You're scanning the environment for threats. It's probably a really difficult time to be sexual because you're not in a place where you feel safe and you feel relaxed and calm.

(16:07): Depression. What depression does is it takes away motivation and makes it difficult to enjoy the things you typically enjoy, makes it difficult to be more connected with your bodily sensations. And so that really hits the brake pedal when it comes to sexual functions.

(16:22): Poor body image. If you're not feeling sexy, it's hard to want to be sexual. History of sexual abuse or trauma. So if the sexual activity you're going to engage in triggers a history of sexual trauma that you've had, you probably don't want to be sexual.

(16:41): Oftentimes, I'll ask... When I'm trying to really assess someone's level of desire, the desire in their mind. Because there's physiological arousal, vaginal lubrication, blood flow to genitals, but there's also the arousal in your mind. And so, I'll ask, "When you're actually being sexual, what is going through your mind?" And oftentimes what I will hear is, "Oh, I'm thinking about the to-do list, or I can hear the kids in the other room, or I've got this deadline." So if your mind is distracted and you're thinking about everything else, except for sex when you're being sexual, that is definitely going to hit that brake pedal.

(17:17): And then substance abuse. A little bit of alcohol could be helpful to reduce inhibition. But when it comes to more than that, then you're really reducing your ability to be aroused.

(17:30): Other factors that can affect sexual desire include discord in the relationship with your partner, a partner who has sexual functioning problems, inadequate stimulation and lack of privacy during sex. Now, interpersonal relationship factors. Discord. If you're not happy in your relationship, you probably don't want to be sexual with that person. If you're not feeling emotionally close to that person, probably you don't want to be sexual with them. Think back to that slide that I showed you, that circular model. One of the main ingredients for that sexual response model to continue was emotional intimacy. So if there's no emotional intimacy, that's a huge brake in that circular model.

(17:56): Partner dysfunction. What's interesting is research consistently shows that if your partner, if they themselves have their own sexual functioning issues, it is going to make it more difficult. It's really going to hit the brake pedal for you.

(18:08): Inadequate stimulation. So perhaps just the right buttons aren't being pushed. So the sexual experience isn't that enticing or exciting for you.

(18:17): And lack of privacy. I cannot tell you the number of times I have worked with people and I've asked them, "Hey, when you're being sexual, what's in your mind?" And they'll say, "Oh, I'm so worried about the kids coming in the bedroom." And then I'll say, "Oh, well do you have a lock on the bedroom door?" And the answer is, "Oh no, we don't even have a bedroom door." What? If we think about the treatment plan being removing as many things off the brake pedal, then step one is go to Home Depot or go to Menards to get a door.

(18:49): Sociocultural influences like lack of knowledge, values, and taboos are a final weight on the brake pedal. And then last is sociocultural influences that hit the brake pedal. Limited sex education, conflict with religious, personal, or family values, societal taboos, all of these things that hit the brake pedal.

(19:03): Defining the issues that are “hitting the brake” on sexual desire is the first step in addressing the problem. I had said before to really think about these things that hit the brake pedal and think about any of these things hit the brake pedal for you. And if they do, I mean what would be helpful is to take a piece of paper and draw these four columns: biological, psychological, relationship, and life stuff. Life stuff fits that whole sociocultural category.

(19:24): Take out this piece of paper, draw out these four columns and then start to really fill out, what are the things in each column that are hitting your brake pedal? So maybe some of you would say, "Well, biologically, yeah, I've had treatment-induced menopause because of the medications I'm on so I'm having hot flashes and night sweats and I'm tired and I'm not happy with my body image. And I've been having more arguments with my partner. And I'm stressed out because I'm in that sandwich generation where I'm taking care of kids and taking care of my parents." So maybe this is what your daily brakes are on your brake pedal. But whatever they are for you, really write them out and put them in the different categories. Because the next step is to determine what can possibly be alleviated or removed.

(20:09): Again, we think about that Dual Control Model, brake pedal gas pedal. The first step is what's on the brake pedal, and what can possibly be removed off that brake pedal. Don't even think about gas until you've removed things off that brake pedal. If you are left with receptive desire, being your main desire, again, the next steps are, what is hitting the brake pedal, and what possibly can be removed or alleviated off that brake pedal?

(20:36): This is a really, really good book. It's called Come as You Are by Emily Nagoski. It is a great book that talks not only about the brake pedal but also the pieces of the brakes that impact your overall sexual function. It talks about negative messages about sexual health. This is hands down, the best book I've ever read on women's sexual health. And if you are really interested in this topic and improving your sexual function, I would recommend you reading this book. It's not transplant-specific, but there's so much information in here that you will probably find very, very beneficial.

(21:10): Okay. So what's the take home on low desire because we've been talking all about low desire. Two types of desire, spontaneous or willingness. Again that has a few different names, willingness, responsive, receptive. There are two types of desires. With hormonal changes, that willingness or responsive desire may become your predominant desire. Right? That spontaneous desire does not have really much, if any, gas in that gas tank anymore, so you're left with that willingness, a responsive desire. And so really what you need to do is maximize your willingness to figure out what ingredients need to be in place for you to be willing.

(21:46): Sexual pain can be due to several causes. Okay. Now we're going to shift to sexual pain because that is the second most common concern after a transplant. The sexual pain in transplant can be caused by a couple of different things. Most commonly it's caused by genital graft-versus-host disease and treatment-induced menopause, which in turn causes GSM (genitourinary syndrome of menopause). Remember I talked earlier about the genitourinary syndrome of menopause. So these are the two things that we're going to talk about.

(22:10): Nearly 50% of women have genital graft-versus-host-disease (GVHD). Let's start with genital graft-versus-host disease. Okay, a little bit of a quiz. And I know you all are on mute, so you can't answer this quiz. But try to answer it in your mind. From what percentage to what percentage... What's the range of percentage of women who have genital graft-versus-host disease? It's a 5 to 10%. Is it 30 to 40%? So what it is, is 29 to 49% depending on the research study that you look at. But nearly 50% of women have genital graft-versus-host disease. And if you have non-genital GVHD you are likely to have genital GVHD. Most women develop genital GVHD by seven months, but 25% of women develop GVHD up to nine years after transplant.

Dr. Jordan Rullo (23:02): Genital GVHD can cause vaginal dryness, pain, discharge, and vaginal scarring with sexual activity. And typically, genital GVHD is asymptomatic if you're not sexually active. So you may have non-specific symptoms initially with just vaginal dryness. But then, if you do become sexually active, you're going to experience sexual pain, discharge, you're going to experience decreased elasticity of the vaginal canal. So the vaginal canal should be like a rubber band. It should have the elasticity of a rubber band. But with GVHD it loses that elasticity. There are adhesions and scarring of the vaginal canal that can be vaginal stenosis which is significant scarring.

(23:38): Treatment induced menopause has sudden onset and can be another cause of sexual pain. The second cause of sexual pain is treatment-induced menopause. And treatment-induced menopause can be caused by surgery, chemo, total body radiation. Treatment-induced menopause is different from natural menopause in the way it impacts women. Because treatment-induced menopause has this sudden onset. So you begin treatment and then boom, your body just doesn't have those hormones like it had before. As a result of that sudden onset, the symptoms are much more severe and the symptoms may not entirely respond to hormone treatment.

(24:16): Estrogen is the gold standard in improving sexual arousal and overall sexual function. So really the gold standard in treating treatment-induced menopause is estrogen. And estrogen not only helps the whole body, but it helps with sexual function. So estrogen really helps maintain the physiological function of the genitals. It is critical in preserving vaginal sensation, vaginal lubrication, preventing sexual pain, promoting sexual arousal. So the way I think of it is, the vulva and vagina have tons of estrogen receptors. And when you undergo a treatment that impacts, changes, reduces the level of estrogen in your body, those estrogen receptors in your genitals, basically, they dry out. They're not being fed with estrogen. And then what happens is when those estrogen receptors dry out, everything gets dry. You lose that elasticity. You're not having that same lubrication. There's less blood flow to your genitals because those estrogen receptors actually helped promote blood flow to your genitals.

(25:15): And if you think about sexual function or sexual arousal, sexual arousal is blood flow to the genitals. So if you're not getting that same level of blood flow, then that means arousal is going to be much more difficult. And if you don't have that same elasticity, if you don't have that same moist plump, vulva, then that means penetrative sexual activity is going to be painful. So estrogen is incredibly helpful in getting that sexual function back to your genitals. Without estrogen, about half of women report that they experienced genitourinary syndrome of menopause.

(25:50): Women experiencing pain with sex should stop before sex and pain become psychologically associated and cause further problems with sexual functioning. Okay. So if you are having painful sex, what do you do? Step one, stop. And it may sound silly that I'm just saying stop. But it is incredibly important that you stop. I have worked with so many women that say, "Well, I just feel like either I have to because it's important to my partner," or "Well, isn't it okay that sex just hurts a little bit," or "I can get over it. I can use some ice or just take a break for a couple of days afterward." No. Stop. And I'll tell you why it's so important to stop.

(26:19): Because what happens is, every time you have painful sex, sex and pain start to get paired together. So when you even think about sex or your partner comes up and touches you and hasn't even said sex, but just comes up and touches you or hugs you or holds you, your mind goes right to, "This is going to go to sex, and this is going to hurt." So again, anytime you think of sex, you think of pain. So over time, those two just get connected. When you think sex, you think pain and then you start avoiding sex. And then you start avoiding your partner touching you.

(26:49): The “avoidant dynamic” of associating sex with pain can then affect non-sexual physical affection which also declines. If you continue to have painful sex, a really damaging dynamic is going to get created over time. So stop. Stop having painful sex if you're currently having it. The term for this in the research is called the avoidant dynamic. The avoidant dynamic is you are avoiding sex because you don't want pain. And then your partner's like, "Oh, okay, well I don't want to initiate sex because I know it's painful for her so I'm just not..." So now both of you are not initiating any sex.

(27:18): And then what happens is your partner, that non-sexual physical affection, touching, hugging, cuddling, that stops because every time your partner goes and touches and hugs and cuddles you, you think, "Oh gosh, is my partner initiating sex? That's going to be painful. I don't want it." So now you start to pull away or flinch. And then your partner's like, "Well, every time I go up and touch her, she pulls away. She flinches. She's not touching me anymore. I'm tired of being rejected. I'm not going to touch her anymore." So now that non-sexual physical connection, that starts to decline.

(27:50): The ripple effect may then undermine emotional connection. And then there's this ripple effect in the emotional connection. And this is where overtime when there isn't sex, when there isn't that non-sexual physical connection, then that ripple effect goes to the emotional connection. And this is where partners and couples come to me in therapy and they say, "We feel like we're just roommates." So if you continue to have painful sex, that is taking you down the potential pathway of developing this avoidant dynamic, and the longer you ride that avoidant dynamic, the more likely it is that you two are going to end up in a place where you just feel like roommates. So stop having painful sex.

(28:25): Regular use of vaginal moisturizers can help. Step two is really consider that there are some over-the-counter options to address sexual pain. Moisturizers are... I have a colleague that she calls moisturizers, face cream for your vulva or vagina. Just like you wake up every morning and you probably put on some face cream, that's what moisturizers are. That's something that you use every day or three times a week, and they are... And so you rub them on the vulva, in the vagina, and they help trap moisture to the vulva and vagina. And it is the cumulative effect of using them that is helpful. So you can't just use a moisturizer once. It's using them on a daily basis, making it a habit that traps in that moisture. So it just reduces that daily vaginal dryness. But using a moisturizer is really helpful as just a daily maintenance to keep the vulva and vagina more plump and moist.

(29:17): Lubricants are an in-the-moment accessory to sexual activity. Now moisturizers are different than lubricants. Lubricants are as needed, in the moment, for friction reduction. They're not something that you use every single day or multiple times a week. It's just an in-the-moment accessory. There are water-based lubricants and there are silicone-based lubricants. Water-based lubricants are... Most people like water-based lubricants. There's no contraindications to having a water-based lubricant. The only thing about a water-based lubricant is because its base is water, it can evaporate quickly. So you are often reapplying it during a sexual experience.

Dr. Jordan Rullo (29:50): Silicone-based lubricants last a lot longer. Because its base is silicone, you probably do not have to reapply it, but a couple of contraindications to silicone lubricants. One, if you have a male partner and that partner has any erectile difficulties or just difficulty keeping his erection, then the silicone may be so slippery that it's hard for him to maintain his erection. And two, if you use any sexual toy that is made of silicone, it's possible this silicone lube can counteract that silicone toy and ruin your toy. So those are two reasons you might think against using silicone. So water-based and silicone are a good option though.

(30:31): A menu of non-penetrative sexual activities can provide sexual satisfaction without pain. Next, so you've got one, stop having painful sex. Two, over the counter options to try to alleviate some of that pain. And also think about having a non-penetrative sexual menu. If what is mostly causing the pain is penetration, can you engage in other sexual activities unrelated to penetration? To create a new sexual menu consider non-penetrative sex. On my website, which I'll give you a link at the end of this talk, I do have a sexual menu you can download of all non-penetrative sexual activities. There's also a website called Mojoupgrade.com. It's not exclusive to non-penetrative sexual activities, but there's a ton of different sexual activities that you and your partner can each log into the website and rate your willingness or interest to engage in different things. But consider creating a new sexual menu that doesn't rely on penetration if penetration is what's painful.

(31:23): Topical corticosteroids and working with a pelvic floor physical therapist can help women with genital GVHD. Okay. So you've got step one. You've got step two. And the final step is prescription options. Now, I'm not a physician, but I'll tell you typically what physicians do to treat these issues. For genital GVHD, a topical corticosteroid. You can also do prophylactic dilator use two times a week to try to avoid stenosis and adhesions. There are physical therapists called pelvic physical therapists. Their specialty is the muscles that impact the vulva, the vagina, the pelvic floor. And so, you could work with a pelvic physical therapist who will help you get dilators that work for you, who will help you create a plan on how to do those dilators a couple of times a week.

(32:04): Estrogen can be an effective treatment for vaginal dryness caused by GSM (genitourinary syndrome of menopause). And then, of course, routinely having a gynecological exam. Treatment of GSM or genitourinary syndrome of menopause, vaginal estrogen is that gold standard treatment. Again, GSM is a result of those estrogen receptors drying out. Well, then how do you treat it? You feed those estrogen receptors with estrogen. It increases blood flow, lubrication, elasticity, increases genital tactile sensation. You feel more when you have that estrogen. And there are different ways to take it, a ring, a pill, a tablet, those are all different options. I'm sorry, not a pill. I want to go back to that. A ring, a tablet, or a cream. A pill is a totally different way to take estrogen. If you take it as a pill, you take it systemically, it goes throughout your body. But this is estrogen just to the vulva and vagina, just to that specific area of your body.

Dr. Jordan Rullo (32:57): Here's the take-home on sexual pain. There are two main causes, genital GVHD and treatment-induced menopause, which is called GSM. Stop having painful sex. Use over-the-counter behavioral options and prescription options. If step two is not helpful enough, talk to your doctor about prescription options.

(33:19): For most women, receptive desire means arousal happens first and then leads to desire. Okay. So lastly, I want to talk about the sexual relationship and the impact of these sexual side effects on the sexual relationship. Now, I already went through this circular model before. A couple of things to remind you about. For most women, their main desire is that receptive response, willingness desire, not that spontaneous desire. Arousal has to come first in order to tap into that desire, your body's got to get aroused. The right buttons have to get pushed, and then your mind says, "Oh yeah, this is nice."

(33:47): And if you look at the top of this circle, emotional intimacy, you got to feel close to your partner in order for this cycle to be able to continue. Now this cycle, if you have a male partner, your male partner cycle is going to look a lot different. And I'm going to show you the typical male cycle.

(34:07): Men are more likely to follow a linear model where spontaneous desire then leads to arousal. For men, this is called the linear model. It looks more like a rollercoaster. So let me describe this. It starts with desire, for most men, for about two-thirds of men, their sexual response starts with the desire, meaning that they think, "Oh yeah, I really want to have sex right now." Right? They have that spontaneous desire. "I really want to have sex right now." That leads to arousal, which then leads to orgasm, and then leads to that resolution phase, which we could talk about as kind of cuddle time afterward.

(34:34): But the important thing I want you to take from here is for two-thirds of men, their sexual response starts with desire. "I want to have sex," then arousal. And if we go back to the previous slide, for most women, for two-thirds of women, especially for women who have had transplants, their sexual response does not start with desire. It starts with arousal. Their body has to get started, and then their mind says, "Oh yeah, this is nice. We should do this more often."

(35:08): Talking about different sexual response cycles in heterosexual relationships can be beneficial. And oftentimes, if you're in a heterosexual relationship, if you have a male partner, your partner's not going to understand this. He's going to say, "Well, why don't you have spontaneous desire the way I have spontaneous desire?" Because your sexual response is different. So oftentimes, just having this conversation and realizing that the way you each respond is different can be enough to go, "Oh. Well now, we can try to figure this out." So your sexual response cycles may differ, and your partner may not understand that your desire is that willingness or receptive desire. Your desire is not going to look like your partner's desire. So talk with your partner about what ingredients need to be in place in order for you to be receptive, in order for you to be willing. Right?

(35:47): What needs to be taken off that brake pedal for you? And remember that emotional intimacy is one of those key ingredients. Your cycle is going to kick-starts with arousal. And if you have a male partner, more than likely, your partner's cycle is going to kick-starts with spontaneous desire, which is spontaneously having desire.

(36:05): An avoidant sexual dynamic can be treated with sensate focus exercises. Now, what if you're both in an avoidant sexual dynamic? And I described that dynamic earlier. Here's how to avoid an avoidant dynamic, with these exercises called sensate focus exercises. And I'm a certified sex therapist. I teach these exercises quite often, and I'm going to give you the brief gist of these. But you can get a printout of the first two phases of these exercises, again, from my website.

(36:29): These are non-sexual touching exercises. So sensate focus exercises, the basics of these, these are touching exercises. There is no sex involved. You set aside time for a private space. Set aside 20 to 30 minutes of full-body touching. You two are nude to whatever extent feels comfortable. No sex. You do have to agree that in order to do this exercise, you will not have sex.

(36:51): You do them every 48 to 72 hours and there are phases, and each phase builds off the next phase. Now here's phase one. And again, you can get this on my website. There is no touching of breast, chest, or genitals. Those traditionally more erogenous or sexual zones are off-limits. They're off-limits in this first phase to really set these exercises up as just touching exercises, not sex. Again, no sex. You actually don't even talk during these exercises. You touch each other all over. And let's say you set aside a half an hour, for 15 minutes, your partner touches you, and then you say, "Switch." And then, for 15 minutes you touch your partner. Use your hands and your fingers only. And while you're touching, you're focusing on sensations. That's why they're called sensate focus. Temperature, pressure, texture, is it firm, is it soft, is it rough, is it smooth? These sensations are always there. They are vivid sensations. They're reliable sensations. You're always going to have TPT when you and your partner are touching.

(37:50): What's great about these sensate focus exercises is if an avoidance dynamic has been created, this is a really nice guided protocolized way to say, "You know what? I know we haven't been touching. I know we haven't been having sex. I just want to touch again. Can we follow these instructions and just do this a couple of times a week just to touch again? It'd be really nice to touch and be touched." And since sex is off the table, all that pressure and worry that there might be pain is off the table. There's not going to be any pain. There's no pressure. You two just get to touch.

(38:22): Here's the take-home on the sexual relationship. You and your partner's sexual response differs. Your sexual response may need sexual arousal as a kick-start. Emotional intimacy is a necessary ingredient, and if you're in an avoidant dynamic, really think about sensate focus as a way to get out of that avoidant dynamic.

(38:41): Transplant does not take away your sexuality. Now here's the overall take-home message of the entire presentation. Transplant does not take away your sexuality, so really maximize your willingness, your receptivity with the right ingredients and share these ingredients with your partner. Remember, try to get things off that brake pedal.

Dr. Jordan Rullo (38:56): Conclusion. If you're having painful sex, stop. Try moisturizers. Try lubricants. Try creating a non-penetrative sexual menu with your partner. And then talk to your doctor if you have GVHD or GSM because there are prescription treatment options.

If you're in an avoidant dynamic, consider sensate focus. So if you go to my website, which is my name, Jordanrullo.com, go to my blog, you'll see a blog post that was just posted today on this talk. And you'll be able to download not only a non-penetrative sexual menu but also the first couple of phases of the sensate focus exercises. Thank you so much. And I believe we're going to be moving into questions in a moment.

Question and Answer Session

(39:37): [Sue Stewart] Thank you, Dr. Rullo. That was a wonderful presentation. I learned a lot from it, and I'm sure others did as well. Let's start the question and answer session now. The first question. Is it possible to have penetrative intercourse with vaginal GVHD, and if so, how is it achieved when the tissue is fragile, and the vaginal canal is narrower and there's pain? What can help a spouse who longs for penetrative sex when I have vaginal GVHD and pain?

(40:22): [Dr. Jordan Rullo] Such a great question. Hopefully, the presentation answered this, but I'll just highlight some of the things that I mentioned in the presentation. I mean, is it possible to have penetrated intercourse? Yes, it is. And it is likely going to be painful. So what I mentioned before is ideally, you're avoiding sex and pain. Because again, over time, if every time you have sex, there is pain, then you're just going to drive yourself into that avoidant dynamic with your partner.

(40:47): What I talk about with women when removing that sexual pain is just not a possibility, maybe the treatment for the GVHD, like the topical corticosteroids or the treatment that your medical provider is offering, maybe that's not working as well as you want it to. What I'll say to my clients is, "Okay, as you're creating your sexual relationship with your partner, ideally create a non-penetrative sexual relationship. So there's not going to be that pain. And then, can you two talk about sometimes pain?"

(41:17): So sometimes, if penetration is incredibly important to both of you, can you plan the environment of, okay, sometimes, once every couple of months you will have penetration, but you two talk through it. Maybe you know that next day you are going to be hurting. And so, you are ready. Take the day off work. If you have ice to be able to ice your vulva. And so, you two really talk about it and plan for it if it's that important to you to have that act of penetration.

(41:45): But ideally, you're doing the medications, the prescription medications your providers offered. You're doing that prophylactic dilator that I talked about a little bit earlier, and you're doing all you can to try to prevent any pain with penetration, and you and your partner mostly have a non-penetrative sexual menu.

(42:04): [Sue Stewart] All right, next question. Depression is present in this woman's family and she just had sertraline increased. And she knows that it tends to affect her sexual desire and arousal. She's wondering if there's an antidepressant that has less sexual side effects.

(42:23): [Dr. Jordan Rullo] Yeah. That's a great question. Absolutely. There are a number of antidepressants that are known to have less sexual side effects. Sertraline is one of those that has higher sexual side effects. If you go to my website, again, it's my name, Jordanrullo.com, and I have on my website a list of all of the articles I have published. You can download this article. There's an article on antidepressants and sexual side effects specifically for women. Download that article and there is a chart in there that tells you which antidepressants have the least sexual side effects.

(42:55): But I'm glad you're bringing this up because so many people don't realize that their medications could impact their sexual function, and their medical provider didn't tell them that would be a side effect. I'm glad you're recognizing that there's side effects and you're right, there are other medications to be on that have less sexual side effects. But check out my website and download that article on antidepressants and sexual function.

(43:18): [Sue Stewart] Great. Thank you. All right. The next question is from a 75-year-old-woman who has no fear of getting pregnant. She wants to know what protection you need when you're taking Revlimid. She's interested in protection for both oral and intercourse.

(43:37): [Dr. Jordan Rullo] Ooh. You know what? Since I am not a medical doctor, I would not be the best person to ask that question. I wish I had the answer. But I'm just not the right person to answer. I'm sorry. I have to pass on that one.

(43:52): [Sue Stewart] Not a problem. All right, next question. Is a general gynecologist going to be knowledgeable enough about genital GVHD and GSM, or do I need to go to a specialized gynecologist?

(44:05): [Dr. Jordan Rullo] Oh, that's such a great question. I wish the answer was that a general gynecologist would be knowledgeable enough about these issues, but sadly, the answer is most general gynecologists aren't. If I can move my slides back. Okay. So you see on the slide that says sex therapy referrals, the third bullet, International Society of the Study of Women's Health, ISSWSH.org. Their website, I believe, is isswsh.org, and you can find a provider. ISSWSH is mostly comprised of medical providers versus therapists. ISSWSH.org would be a great website to go to find a provider. If someone is a member of ISSWSH, more than likely, they know how to treat these more advanced genital sexual health issues.

(44:55): One of the things I want to say repeatedly is, "Do not take no for an answer from a medical provider." So if you have your gynecologist or whichever medical provider, you say, "Look, I'm having sexual pain," or, "I need better treatment for GVHD" and they say "Oh, I don't know, I don't specialize in this. I don't know much about it" then the follow-up needs to be, "Then please get me a referral." It is your medical provider's obligation to connect you with someone who could help you. "Please get me a referral. Who can you refer me to? This is important to me." Don't take no for an answer.

(45:29): As a sex therapist, I so commonly see clients, and it's especially women, who have repeatedly been dismissed and ignored by their medical providers when they have a genital vaginal sexual health issue. In fact, there's a research study that came out in the past five years or so that said that a woman with sexual pain sees, on average, six different medical providers before she gets an accurate diagnosis for her sexual pain. So, unfortunately, we just need to be persistent and demand a referral. Demand someone who does specialize in this, or who they can refer you to, because a lot of providers just don't know. But yeah, that's such a good question, and I wish that was not my answer.

(46:13): [Sue Stewart] All right. The next question's a little lengthy. The woman says, "I can't have vulva vaginal touch because of pain. I had both the stem cell transplant and breast cancer at the same time. I can't use vaginal estrogen, and I'm also on Arimidex, so I'm very, very atrophic. I want sexual intimacy, but I just can't even tolerate touch. What do I do?"

(46:42): [Dr. Jordan Rullo] Oh, first of all, I just want to say, "Oh my goodness. You have been through the wringer." So what I would say is really if a vulva vaginal touch is painful and there are no options and you can't take vaginal estrogen. one thing I want to throw out there is to check with your oncologist just to be sure. And again, if they can't give you a good solid answer or they don't know the research, say, "Please connect me to someone who does." But check with your oncologist just to be sure vaginal estrogen is not an option. Because what the research shows, and I can't stress enough, I'm not a physician, but my understanding of the research, estrogen just to the vulva vagina, not systemically, not throughout the whole body, estrogen that is just to the genitals has very little uptake throughout the rest of the body. So even women who are told, "Because of your breast cancer, because of your cancer, you can't be on hormones", if they speak to a specialist, a specialist says, "No, actually, it's okay if you just are on local estrogen, localized to the genitals." So I just want you to double-check on that because that really is the gold standard treatment to help reduce that pain for the vulva vagina.

(47:51): Now let's say you've double-checked on all of that, and for sure, estrogen is just not an option for you, then it really is tapping into... I talked about the sensate focus exercises, full-body touch. Your vulva and vagina are not the only erogenous, sensual, intimate parts of your body. So can you and your partner set aside time and just explore full-body sensual touch. Perhaps there are other areas of your body where you can really get that intimacy and connection. Is it going to feel the same or as sexually arousing as the genital? Probably not. But it will bring some of that intimacy back.

(48:31): [Sue Stewart] All right, next question is, how do I know if GVHD is the cause of my problems?

(48:39): [Dr. Jordan Rullo] Ooh. That again would be a medical doctor question. I mean if we go back to... Let me go back to the slide that talks about GVHD. Okay. So oftentimes, asymptomatic, but some of the things you're going to notice, vaginal dryness, if you are having penetrative sexual activity, sexual pain, discharge. So really if you're having vaginal dryness, if penetrative sex is something that you're engaging in, and there's pain, if you're having discharge, that is different than usual. all those are signs that something is going on. And so, then it would be talking with your doctor to actually get it assessed. Is this genital GVHD? Is this genitourinary syndrome of menopause? But if you have any of these symptoms, it is time to get it checked out.

(49:37): [Sue Stewart] Last question, I guess, because we're getting close to time. I feel an anxiety from catching germs and infections when being intimate and close to my husband. He's a teacher and he meets many people. And I feel that my brain has been conditioned to avoid infections in order to survive. I do catch infections, and I just want to avoid them. What do you suggest?

(50:01): [Dr. Jordan Rullo] The first thing that pops to my mind hearing your question is... And I'll make a comment and then I'll pose a question. Oftentimes people feel anxiety about like, "Ooh, I don't want to get sick or germs." But the question I have for you to think about is, is that anxiety high enough or significant enough that you really are avoiding physical connection? That fear of catching germs, is that high enough that you are preventing yourself from doing things that otherwise it would make sense for you to do those things? Yeah, there's a risk, but your mind is inflating that risk. I guess, generally, here's my question, is your mind inflating that risk? And if so, I absolutely would want you to work with a therapist to help manage some of that anxiety.

(50:48): Anxiety in many ways is helpful. Of course, if you're dealing with transplants, you do not want to be getting sick, so you need that level of anxiety to keep you safe. But is that anxiety much higher than it really needs to be? And that would be working with a therapist to really assess that. And then the other thing I would just add is if you haven't already had conversations with your partner, having conversations with him about, "Okay, I've got this fear. How can we find a way to be intimate, where I'm feeling more safe, and I'm feeling less likely that I'm going to catch something or get something." Is he following guidelines or rules or is he putting in place the ingredients that you need to feel safe?

(51:27): [Sue Stewart] I think we can squeeze in another question here. Someone has asked that you repeat where on your website they can find alternatives to penetrative sex.

(51:38): [Dr. Jordan Rullo] Yes. Yes. Great question. Okay. So go to my website, Jordanrullo.com. Go to the blog. And there is a blog post that I just posted this morning. When you go to the blog, you'll see the big logo for BMT InfoNet and go to that blog, slide down to the end of the blog. And that's where it's going to say, "Hey, do you want a sexual menu? Do you want the sensate focus exercises?" Just enter your email address, and then you get to download that PDF.

(52:02): [Sue Stewart] And if we can squeeze in one more, someone has just commented that there's a product for women who can't have penetrative sex due to adhesions or tightness. It's called Ohnut, O-H-N-U-T silicone rings that go on the penis and decreased penetration depth. Are you familiar with that?

(52:21): [Dr. Jordan Rullo] Yes. Ohnut, it's a great product. So imagine it's... I love the name Ohnut. Because it's like four little donuts. So four little silicone donuts that all nest in each other to create one big, long sleeve or long donut. And for anyone who's having pain with deeper penetration, you have your partner wear one, two, three, or all four of the donuts, and then it's like a bumper. So then the penis can't go in very far. And the thing about penises is that the most sensitive part of a penis is the head of a penis. So if the shaft of the penis is being engulfed in those bumpers and the only thing that's penetrating is just the head of the penis, that will still be really sexually stimulating for your partner because the head of the penis is getting the stimulation. So you are not getting that deep penetration, and he's still getting the head of the penis being stimulated.

(53:21): [Sue Stewart] Right. One other question, because I think this is not on the topic we already discussed. I underwent a transplant as a teen, I was fairly recently in my 20s, and I was diagnosed with primary ovarian insufficiency. I'm devastated about the possibility of having difficulty getting pregnant. And I already feel like the dating pool is shallow for me because my hair never grew back. And I barely date. I don't know when to bring up the fact that I'm wearing a wig. When dating someone, when do you bring up something like possible fertility issues?

(53:58): [Dr. Jordan Rullo] This is such a great question, and there is no right answer. You just got to think about what works for you. I've worked with so many people that like date one, they want to get it out there. "Hey, look, these are the things I'm dealing with. If you can handle these things, then I'm interested in going on a second date. But if you can't, then we're not going to work." There are some people that say, "Nope, I want to spend some time, create a relationship with this person, see if I even feel comfortable being vulnerable with them, and then a few months in when I am feeling comfortable and we've developed a much stronger connection, then I want to tell them." There is no right or wrong answer. There's no best way to go about it. So it really just is up to you on what you feel most comfortable with. I mean, you may not feel comfortable with either of those choices, but those are the two main options. So what seems to fit best for you?

(54:51): [Sue Stewart] All right. I think we will do one last question. And that is, can dilators be picked out at a sex store with your partner, or do they need to be prescribed by a sexual health physician?

(55:04): [Dr. Jordan Rullo] Ooh. Great, great question. I mean the easy answer to that is yes, you can get dilators over the counter at a sex store online. The deal is if you go to your local sex shop, they're probably not going to have a very good variety of dilators. And there are so many different types of dilators. There are silicone dilators. There are acrylic dilators. Acrylic is a lot harder plastic, and if your genital tissues are very thin and can rip and tear, and are sensitive, you do not want that hard plastic acrylic dilator. You're going to want more... a softer silicone dilator.

(55:42): The dilators I really like are Soul Source. So if you Google Soul Source dilators, those are a nice silicone set of dilators. So long story short, yes, you can pick them up in your local sex store, but they're probably not going to have a very good variety. I recommend you get a softer dilator, like a silicone dilator, or check your insurance because insurance companies may reimburse you.  Soul source.com.

(56:35): [Sue Stewart] Closing. Okay, great. Well, with that, we unfortunately are going to have to end the session. It's been very educational. Thank you so much on behalf of BMT InfoNet and our partners, I want to thank you, Dr. Rullo, for some very thought-provoking remarks. And I want to thank the audience for the excellent questions. They really were wonderful. If you have any other questions, please contact BMT InfoNet.

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