Women's Sexual Health after Transplant

Women's Sexual Health after Transplant

July 15, 2020 Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020

Presenter: Sharon Bober PhD, Founder and Director, Sexual Health Program, Dana-Farber Cancer Institute

Presentation is 36 minutes with 22 minutes of Q&A.            Download Speaker Slides  

Summary:  Sexual health is often affected by transplant, but is seldom discussed by patients and physicians. This presentation describes common sexual difficulties women experience after transplant and strategies to manage them. 

Highlights:

• Sexual health for stem cell transplant patients and all women goes beyond the physical intimacy. It includes aspects of mental, social, and cultural well-being.
• There is a wide range of normal sexual health after stem cell transplant but if you are experiencing changes in sexual function, pain or discomfort you should seek help.
• There are hormone and non-hormone based treatments for pain, discomfort and dryness.   (Link to document on Vaginal Dryness: What do I need to know?  from Dana-Farber Cancer Institute Sexual Health Program)
• Vaginal graft-versus-host disease (GVHD) symptoms are similar to menopause symptoms, and stem cell transplant survivors should consult a gynecologist for a proper evaluation.
• Stem cell transplant survivors will need to educate themselves and their partners about their sexual changes and how a partner can support them. You may need to seek out help from a couples’ counselor to help facilitate effective communication.
• It is important to understand that for most stem cell transplant survivors desire is no longer automatic, and it can be helpful to get into the mood with a warm bath, romance novel or hand massage.

Key Points:

02:04     Sexual health is important part of quality of life. It goes beyond intercourse or feeling conventionally sexy, it incorporates physiology, how we think and how we feel.

05:35     Sexuality is one of the first aspects of normal day-to-day life that gets disrupted during treatment and stem cell transplant. Changes in intimacy, relationship dynamics or sexual function, are common and can have long term consequences if not addressed.

10:19     Risk factors for sexual issues after stem cell transplant include a history of anxiety around sex, prior sexual problems as well as younger women who are not menopausal or were pre-menopausal before treatment.

11:48     The process of cancer treatment before stem cell transplantation, chemotherapy and radiation disrupts ovarian function.

12:20     When ovarian function is disrupted there is a dramatic loss in estrogen and effects vaginal blood flow, elasticity, PH and lubrication which cause discomfort and pain.

13:55 Frequent use of over the counter vaginal moisturizers or prescription hormone creams can treat vaginal dryness after a stem cell transplant.

19:54 Blood flow is important to maintain or restore genital health and virbrators can be prescribed for this and other purposes.

21:31 Loss of desire is a common complaint for stem cell transplant survivors and can be overcome through psychological coping strategies and taking the time to cultivate relaxation and stimulate mood.

24:10 Vaginal GVHD is not uncommon for stem cell transplant patients and symptoms include dryness, burning and itching. Effective treatment from a gynecologist can include topical steroids and immunosuppressants.

28:07 Learning to accept your body and turn off the negative thoughts about your physical self are important to foster comfort with sexuality as a stem cell transplant survivor.

Transcript of Presentation

00:00     [Moderator] Welcome to the workshop Women's Sexual Health after Transplant. My name is Mary Clare, and I will be your moderator today. It is my pleasure to introduce you to Dr. Sharon Bober. Dr. Bober is the Senior Psychologist and Founding Director of the Sexual Health Program at the Dana-Farber Cancer Institute in Boston. She is an assistant professor at the Department of Psychiatry at Harvard Medical School. Dr. Bober is also President Elect of the Scientific Network on Female Sexual Health and Cancer. Please join me in welcoming Dr. Bober.

00:40     [Dr. Bober] Thank you so much for having me here today. It's really a pleasure to be here and to share this morning with you all. I am going to be speaking about Women's Sexual Health after Transplant. And it's definitely a broad topic. But the general overview I want to share with you is that I really want to focus on not just what sexual health is, but really how it's related to quality of life. I'd like to think together about the common sexual health side effects that affect the majority of women who go through transplant.

We're going to also think together about really how we can use a biopsychosocial model to derive what we consider an effective model for sexual rehabilitation. And then, should really think about those strategies for sexual rehab and the range of resources and support that would be useful for anyone dealing with distressing or frustrating side effects. So, that's the overview of what we're going to talk about today.

Importance of Sexual Health for Quality of Life

02:04     Let me start by saying that first and foremost, I think it's important just to really define what we mean by sexuality and sexual health. And this is really certainly one of the more life-affirming elements of human experience that really is not just fundamental, but as a part of who we are across the lifespan. And most importantly, sexuality is a multi-dimensional experience so that we are not just talking about whether someone can have intercourse or not, or whether somebody is sexy from a very narrow perspective. But what we're talking about is an experience that ranges from our body and our physiology to how we think and how we feel.

We're also talking about our experience or identity of ourselves, and the values and hopes and goals that we have. Certainly, sexual health is informed by our history. Everybody comes to this place with a range of different experiences. It also revolves around our values and our core understandings of ourselves that are also informed by culture, and the society that we live in. So, very broad topic, but recognizing that sexuality is definitely a multi-dimensional experience.

What is Considered Normal Sexual Function after Stem Cell Transplant

03:11     And on that note, I just want to say that there is a very wide and varied range of normal. So, what's important is to recognize that the goal here is not and should not be the same for everyone. Because there are really different levels of meaning and importance for each individual or for any couple. But what is important is that if there are any changes with sexual function, with sexual health, that are bothersome or that are distressing in any way, then it deserves attention. So that it's not so much about trying to reach some particular place of what is normal or necessarily going back to what things might have used to be, but really to think about where you are right now. And if you're feeling any sense of bother or distress about changes in sexual function, just to know that it deserves attention. And that this is a part of quality of life that we need to attend to.

So, on that note, people often say to me, less now, because I think we're getting more attention to the topic, but certainly years ago when I started doing this work, and people would say, "Well, why sexual health? Aren't there other things that are more important when it comes to life and death issues?" And I think that the key point here is that sexuality and sexual function and sexual health are important elements of quality of life.

Quality of Life is Connected to Sexuality for Stem Cell Transplant Patients

04:45     And we know certainly, I think there's a more universal understanding in terms of even organizations like the World Health Organization that recognize that in a very fundamental way in terms of what human rights are and in terms of what quality of life is, that sexuality is a part of that. And it is probably one of the most unaddressed elements of quality of life. And we also know that when sexuality or sexual health gets disrupted, or gets off track in some way, we also know that sexual problems are associated with increased anxiety, with frustration, with depression, and with relationship stress. So, there are lots of reasons why it makes sense to attend to this aspect of our experience.

Sexual Changes during and after Stem Cell Transplant

05:35     So, when it comes to transplant, and when we think about transplant in particular in sexual health, we also know that sexuality is probably one of the first aspects of normal day-to-day life that really gets disrupted after diagnosis and treatment. We know that changes in intimacy, whether we're talking about relationship dynamics or sexual function, are probably some of the most common, the most distressing, and actually the most long term consequences of transplant when they are not addressed. When we asked folks after transplant about their experience, women overwhelmingly say that they were not really prepared for dealing with some of these changes. So, that is pretty universal.

And this is a quote, a real quote that I'd hear probably, I would say, on a regular basis in clinic, people say to me, "Look, when it comes to sex, I just didn't hear much about it." And I do want to take a moment just to acknowledge that this isn't just about transplant or even just about cancer, but we live in an interesting and a little bit of a crazy culture when it comes to sex. And that is because on one hand, we live in a culture that is actually saturated with graphic sexual images. You can't watch a TV show without seeing a commercial or a movie without lots of graphic images around sex, and comments in that direction. But ironically, there's very little real conversation or frank conversation about real sex across the board.

Taboos and Misinformation about Sex can be Obstacles to Care

07:25     And that's certainly the case in almost all medical settings as well. I think there's an enormous amount of misinformation and unrealistic assumptions around sexuality. For example, I think in particular, when we're thinking about women's sexuality, so many of the assumptions and information that we get about sexuality as women is all modeled around being about 25 years old. And we have very little conversation about what real sexuality looks like for women as we move through life toward midlife or through midlife or through menopause. That's just something that never gets talked about.

And I think that there's still a number of taboos. So, if a clinician worries that if they ask about some of this, that they might seem like they're being intrusive or might be uncomfortable, that's a real problem. We also know that providers get very little training around this aspect of care. So, actually, just speaking with one of the moderators, we just published a large survey of hematology oncology fellowship directors in which people across the board talk about how it's much easier to talk about and teach about fertility, for example, than sexuality. Providers often aren't sure what to say if a patient asks about this topic or acknowledges a problem. And that's certainly something in the field of medical education that we certainly have to address as well.

Typical Sexual Changes after Stem Cell Transplant

8:52       So, given that as the prologue, where does that leave us? Well, what we do know is that there are certain changes around sexual health that are really common. For women, changes in sexual response such as arousal, changes in vaginal health, and we'll talk a lot about that such as dryness, loss of natural lubrication. Often, women talk about a shift in orgasm. Often, orgasm is either more difficult to reach climax or climax is more muted. And often, women are talking about pain and discomfort. So, those are very common problems which we will address.

And there are also changes in desire and motivation. And again, we'll talk about that as well today. But low desire is probably one of the most common problems that women struggle with across the board, not just after transplant. And also after transplant, women often talk about just decreased body image, loss of sexual self-esteem. And that's a real issue that often doesn't get talked about. And lastly, in particular, after transplant, we really have to address and acknowledge vaginal GVHD, which is, again, not uncommon, and often not diagnosed appropriately.

Risk Factors for Sexual Issues After Stem Cell Transplant

10:19     So, let's see, next slide. I will just say that for women in general, we know that some women are at some increased risk to struggle with some of these issues. So, anyone who has struggled with sexual problems before diagnosis and treatment are more likely to be struggling as they move through diagnosis and treatment. We know that younger women often are at greater increased risk, women who were premenopausal before treatment. Often, that does not get, again, addressed or acknowledged because the assumption might be that if someone is younger, perhaps they're more resilient when it comes to sexual health and that's not necessarily the case.

Anyone who has struggled with a history of depression or anxiety may be more likely to have sexual issues. Certainly, anybody who's dealing with relationship stress or relationship difficulties around sexuality, they do not self-resolve and can become heightened after transplant.

And also, just want to comment that women who are not partnered often are struggling with many of these same issues, and really don't get any attention because often, assumptions are made around people not being sexual if they are not partnered. And we know that that is absolutely not true. And it really does a disservice to women who are single or widowed. And that's important to acknowledge.

How Stem Cell Transplant Disrupts Ovarian Function

11:48     So, diving right into some of the specific issues and then some of the every woman really needs to know, I wanted to say that any treatment for cancer and in certainly, transplant that disrupts ovarian function, really needs to also be a red blinking light for us to say what does that mean in terms of vaginal health. So, whether that is a chemotherapy-induced disruption to ovarian function or radiation-induced disruption.

Vaginal Discomfort Due to Loss of Estrogen and Hormone Changes in Stem Cell Transplant Patients

12:20     When that happens and ovarian function is disrupted and results in a dramatic loss of estrogen or what we think of estrogen deprivation, there is going to be an immediate impact on the vaginal genital tissue. So specifically, in terms of genital tissue, we see that there is a decrease of a natural blood supply. There are changes in pH values. The vagina can lose elasticity, the natural stretch, as well as lubrication.

That very commonly is going to then often lead to discomfort or pain with any, not just sexual activity, but often with just movement. We'll hear from women who talk about it being uncomfortable to walk or exercise or ride a bike because of these kinds of changes. Women may be more prone to urinary tract infection, infection, inflammation. And there are also vulvar changes, external vulvar changes.

That tissue becomes thinner, we have a loss of collagen. And when that ovarian function is disrupted, it's also important to acknowledge that we lose about half of our testosterone. So, those are very real bio hormonal changes, biochemical changes that have an impact on genital tissue. And when any woman goes through transplant and there is increase in dryness and estrogen deficiency, we know that we have to be very proactive about addressing vaginal health.

Treatments for Vaginal Dryness, Pain and Discomfort in Stem Cell Transplant Patients

13:55     So, this slide is a very simple slide because it really distills these three elements that need to be addressed, right? Women need moisture. Women need to have stretch. And women need to have good blood flow to that vaginal genital tissue in order to keep the genital tissue healthy. And again, these elements are not able to self-replicate or are able to improve over time unless we are proactive about it.

Non-hormonal Moisturizers for Stem Cell Transplant Patients

14:24     So, when it comes to vaginal dryness, that's probably one of the most common issues. That's the case for women of all ages. We also know that the good news is that we can do something about it. We are able to replace moisture. But we need to do that in a systematic way. So, women really need to be educated about vaginal moisturizers as well as vaginal lubricants. That is not a distinction often made.

Vaginal lubricants, something like Astroglide or K-Y Jelly, is not held in the tissue and does not absorb moisture in the tissue. But a lubricant is really meant to be something to keep the reduced friction during sexual activity, but it is not moisturizing. And so, natural moisturizers, in contrast, really hold water in that tissue and that it's important often to moisturize on a regular basis. So, this slide really gets at the idea that there are essentially both hormonal and non-hormonal moisturizers on the market. Non-hormonal moisturizers that are over-the-counter have been shown to be very effective.

Often, women will use moisturizers three to five times a week. And they can balance the pH and can help with maintaining good pH levels. We also know that sometimes, women use coconut oil and other kind of, again, over-the-counter lubricants as I said, to help them reducing friction with sexual activity. But the moisturizing piece is very critically important. For some women, the non-hormonal moisturizers are adequate.

Hormone Moisturizers for Stem Cell Transplant Patients

16:24     Often for women, the non-hormonal moisturizers help but are not adequate enough. And that's where it is possible to talk with your gynecologist, talk with your primary care doctor about the idea of a hormonal-based moisturizer.

There are now a number of different options on the market. There are certainly a number of delivery systems for hormonal vaginal estrogen that is not hormone replacement therapy that is local. Vaginal hormone that stays within the genital tissue and that can be delivered whether that's with a small ring, with a suppository insert or cream.

There's also now a new product on the market that is a form of DHEA. So, number of different options for vaginal moisturizing, both hormonal and over-the-counter non-hormonal. But just a really important first step for anyone who's dealing with any pain or discomfort or dryness, because I would say none of the other kinds of strategies that we have will be particularly helpful or effective if vaginal dryness is not addressed.

Pelvic Floor Rehabilitation for Stem Cell Patients

17:20:    So, moving along in terms of other pieces to the puzzle around vaginal health, we also, in addition to replacing moisture, have to really think strategically about helping women also get stretch or elasticity back to that tissue. Often, that tissue can become atrophied over time. And so, what we see is that there's actually an incredible amount of effective strategy by doing pelvic floor rehabilitation.

Thinking about a mechanical use of pelvic PT in order to both increase stretch to help women systematically gently increase capacity by using what are called vaginal dilators. You can see those are graduated set of cylinders.

But we also know that women often develop a secondary issue about the pelvic floor where the muscles become too rigid or too tight. Any woman who's had any sexual activity that is painful, or often in the setting of estrogen deprivation, find that the pelvic floor muscles are over-engaged all the time.

I often note that for anyone who's had a baby, the only time you ever really care about the pelvic floor is people tell you to do Kegel exercises. Kegel exercises are really meant to help women learn to tone or tighten the pelvic floor. And actually after transplant and estrogen deprivation, often the pelvic floor muscles are too tight or I would say what happens is that they lose the flexibility, or we lose that capacity to flexibly be able to keep them engaged or tight when we need them to be. So, for example, you're not going to pee when you cough, or jump, or laugh.

But on the other hand, we need them to be open and relaxed, and we want to be able to have sexual activity. So, the capacity to be able to flexibly react and respond to the pelvic floor is important. And that's where the pelvic floor PT is an incredibly important tool in the toolkit in terms of rehab. So, again, whether that's using vaginal dilators, whether that's actually working with the PT, either in person or doing some coaching to learn how to use some of the trigger point release, really important and often undervalued asset.

Use of Vibrators to Increase Blood Flow for Stem Cell Transplant Patients

19:54     And the last piece I want to comment on is about blood flow. Certainly, we know that we can enhance vaginal health by increasing blood flow to genital tissue. This is something that we don't talk a lot about. But I know certainly at the Dana-Farber Cancer Institute, when you go to the boutique where you buy sunscreen and wigs and prosthetics, you can also get a vibrator as well as a vaginal moisturizer because it's part of self-care.

And so, I would say that anything we can do to get blood flow to that genital tissue and get nerves firing is going to be helpful. So, I'm a big fan of "prescribing" vibrators. Basically, any clitoral stimulation that feels good is also a proxy for blood flow and nerve stimulation. So, that is something to also consider.

There's a little device. You can see a small picture on the left-hand side of the screen. There's one FDA device that's been approved. That's a little vacuum pump that sits over the clitoris and generates blood flow. But honestly, any good vibrator will do the same thing. So, that's also another piece to consider.

So, I would say that's the overview around thinking about genital health and vaginal health. And then, at this point, I know there's some questions about that, I'm happy to get to that later. But I want to move on to thinking about some of the other topics.

Loss of Desire in Female Stem Cell Transplant Patients

21:31     So, loss of desire is probably one of the most frustrating problems that is very common and often doesn't get addressed. I would say that loss of desire is really like a recipe with many ingredients. Certainly, when we think about changes in how we feel about ourselves, our bodies, the integrity of our sense of self, changes in function and hormones, and certainly changes in body image, all contribute to a loss of a desire.

And when that happens, what often happens is we want to really avoid anything that's going to trigger a feeling of either guilt or sadness or frustration. And often, there's a complicated loop that develops in which, we are trying to avoid or distract ourselves from anything that's going to make us feel frustrated or upset. And loss of desire is something that is not easily dealt with, there's no pill for that. Right? Let me just say, there is no magic bullet for that. That's something that really comes from a place that is, because it's linked to so many different factors, it's not something that we can just solve overnight.

The good news about loss of desire is that, alternatively, we can absolutely learn to cope with the changes. But one of the key pieces around loss of desire is that for most women, we have an understanding that desire should be automatic, like a light switch, especially when we are premenopausal and hormones often are strong triggers that will get us in the mood in a quick, automatic way.

One of the key pieces around moving through this is recognizing that desire is an experience which can be cultivated. It does not have to be automatic. In fact, for most women through midlife, even without transplant, desire is not something that maintains a sense of being automatic at all. But desire really becomes an experience that we need to attend to and cultivate in the same way that we think about something like exercise, or something like overall health and well-being. So, learning about how to focus on pleasure and how to cultivate an experience around what feels good. And it's a very different aspect of desire than just assuming what can we do to make it feel like a light switch again.

Vaginal GVHD in Stem Cell Transplant Patients

24:10     I'm going to come back to that in much more detail in a few minutes. I also just want to talk about vaginal GVH because I think, after transplant, what often happens is that, for women in particular, there's a lot of education information about GVH, but often, the vaginal GVH piece is not focused on. And certainly when donor cells are attacking tissue, this can happen to the vulva and the vagina, as much as any other part of the body. So, that is not uncommon.

Symptoms of vaginal GVH include dryness, burning and itching. Often, there can be pain or discomfort from anything from urination or wearing a pair of leggings to not just sexual activity. And the symptoms are often similar to the genito-urinary symptoms of menopause.

But they really do need to be diagnosed by a GYN who's knowledgeable about vaginal GVH. And most importantly, there really are effective treatments. That may include topical steroids, topical immunosuppressants, but it is treatable. And so, really important to make sure that if you're having any of those symptoms that you do get checked out by a gynecologist.

Addressing Physical and Mental Needs to Renew Sexual Function In Stem Cell Transplant Patients

25:25     So, I want to just give you a quick schema of how we think about sexual health and renewal at the Dana-Farber. Really putting the pieces together that are mental, physical, social, and cultural. What does that really mean in terms of rehab?

So, you had a sense of what I was talking about when we started talking about vaginal health. I do think we have to start with physical health and body integrity as a starting point. Sexual health is part of overall health and well-being. If we don't address the mechanics like pain and dryness, there's no way that we're going to be able to address things like desire, right?

It's a funny thing. And I, full disclosure, am a feminist, for anyone to say, "Well, how do I have desire if sex is going to hurt?" That seems crazy to me, right? We really have to deal with the pain piece first. We also need to understand that feeling good about our bodies and regaining a sense of body integrity that has impact for sexual health also is connected to the overall lifestyle and health and well-being.

So, if we are exhausted, if we're not sleeping well, if we don't have a capacity to exercise, or our diet is crappy, and you don't feel good, it's also going to have an impact on a sense of vitality and overall well-being, which is very much also going to impact our desire. And certainly, if there are relevant medical factors or issues such as being on an antidepressant, which has an impact on the capacity to have an orgasm, or if we're having any changes in physical function or mobility. We really need to be able to consider those, to brainstorm around how to strategically work with those issues in order we should be able to have a good starting point for talking about sexual health.

I also want to acknowledge from a mental psychological point of view that being in our bodies without feeling anxious is an experience that's not obvious when you go through something as traumatic or invasive as transplant. I think that it is critically important to be able to acknowledge the change and to potentially acknowledge the loss. Whether that's loss of fertility, whether that's loss of menopausal status, a feeling of things are different now, it's important not to try to pretend that things are the same when they're not the same, right? But to be also able to simultaneously acknowledge some of the change in loss, while we can simultaneously focus on strength, when we can still simultaneously focus on gratitude, when we can simultaneously focus on commitment and attention to things we value, these do not work. They are not in contradiction.

Accepting Your Body After Stem Cell Transplant

28:07     And I think that being able to acknowledge change and loss while we also can focus on gratitude and appreciation helps us begin to be able to be in our body, fully in our body, without a sense of heightened anxiety. I think anyone who's gone through transplant never gets to a point of being completely not having some vigilance around health and well-being because of course, that's just part of the deal. But being able to be in the body in a more relaxed way, is a very important goal. And that also means that sometimes, we have to be able to tune in and to talk back to some of the negative automatic thoughts that are often very common, but often something we're not even aware of, sort of at the top of our brain.

So for example, tuning in to our physical experience, our bodily experience without judging, without self-criticism is something that we often don't do automatically. And being able to tune in and feel like you're not just hitting play on that tape loop that says, "I'm never going to be able to have sex again, my partner's never going to find me attractive again. I just feel like an old woman and I'm never going to feel young again." These become almost mantras that almost get automatically ingrained when we are thinking about intimacy or connection. And it's really important to be able to acknowledge, to be able to become aware of some of those automatic thoughts. And to more importantly, not just notice them, but also to be able to develop a way to gently talk back to them, to gently challenge some of those thoughts.

I often will comment or notice that for all of us mere mortals, when we have an automatic negative thought, and it makes us upset, right, it brings a lot of feeling and automatically, there's an intensity of reaction. Sometimes, the intensity of the reaction reflectively makes us think, "Oh, well, it must be true," right? Because it feel bad. It feel intense about it. And actually, thoughts are just thoughts, right? They are not necessarily true at all. Sometimes, they're true. Sometimes, they may be true. Sometimes, they're not true. At the level of thinking about our body, thinking about how we feel about ourselves, thinking about the assumptions we make about our partners or about what intimacy or sexuality looks like, it starts to become very important to not just be able to identify some of those automatic tape loops, but to be able to really be able to sit back and in a very gentle but persistent or consistent way, be able to talk back to them.

Communicating with a Partner about Sex after Stem Cell Transplant

31:03     So, we want to have a, on that note, comment that relationships, the big piece of all this for people who are partnered. Partners often have absolutely no coaching on how to do this either. Lots of times, partners aren't sure how to approach or if to approach or when to approach. In the context of women who are not partnered, I think that we don't do a lot to often give people coaching or help around dating or disclosure.

How do you tell someone you've been through transplant, or when, or do you tell them on the first date, or don't you? And being able to seek some counseling or therapy with someone who can give you some guidance or feedback about some of this, I think can be really helpful. Being able to educate a partner about what it means to go through premature menopause or estrogen deprivation, often, partners have no idea.

And knowing when, as a couple, you need some support or coaching is also important too. Because sometimes the communication piece is not obvious. I will say that lots of couples are comfortable talking about sexuality. And lots of couples never really had to. When things are worked well enough, you don't really have to talk much about it. But when things then get off track, it becomes more of a challenge to talk about something if you haven't had a lot of experience with that previously.

Ways to Cultivate Desire after Stem Cell Transplant

32:28     So, reaching back to the issue around low desire, I really want to come back to that again, because, as I said, it's a common issue. And the good news is that we really can do something about it when we recognize that desire does not need to be spontaneous, and that we're able to cultivate that experience through cultivating increased attention, intention, curiosity, and commitment. Those aspects, those elements really allow us to open up a whole new way of thinking about desire.

So, when we become less goal-oriented, and when we really recognize that the focus can be really on just what feels good, what is pleasurable, what experience can you have that allows you to feel either close or connected to a partner, or just a sense of sensual pleasure in one's body, whether it's by yourself or with someone else, that when you have an experience that feels pleasurable, we often notice that if you just move in that direction, interestingly, motivation often gets jump-started and you can go along for the ride.

So, the basic idea here is that instead of needing to wait to have desire as if it is something like a light switch where the starting point is desire, we take a very different approach. We say, "Listen, if the starting point can be what feels good, what allows you to feel both relaxed and a little bit aroused, whether that's getting your hand massage or whether that's getting a warm shower and a bubble bath, or whether that's being able to read a book that allows you to have a sexy thought, all of these kinds of varying experiences allow you to harness your attention to something that feels pleasurable, that feels interesting or exciting."

And then, that can then jump start an experience around desire, which is a very different approach than feeling like you just have to be in the mood in order to want to have an experience which may result in some physical pleasure. So, that's really the point of my last slide around pleasure and pressure. Really important to take the pressure off and to really think of this as a process of discovery. And to really focus on this, as I would say, a creative endeavor, where we can replace the notion of spontaneity with planning.

And with planning in a way that's exciting and interesting and fun. So, that is certainly the point of my last slide. Again, as I said earlier on, being able to acknowledge the changes, the losses are real. And at the same time, recognize that this then becomes an opportunity for a new chapter. And certainly, we have found over now many years of working very closely with hundreds of survivors and certainly the program where we are, what's exciting is that we know we can make this better.

So, I would say, most importantly, we're at a time now where there are more resources, more supports than ever, more interests than ever in sexuality after cancer. There are now materials both written and online. There are websites. There are now a progressive number of professionals getting training in this area, both in private practice and connected to major cancer centers and hospitals across the country. And very happy to be a resource for all of you.

So, that is my talk for today. I see that we have some questions. And I'm going to stop now so we have some time for those. I'll let you help me with moderating the questions. So, thank you all for being here today. It was really my pleasure to talk with all of you.

36:21     [Moderator] What a wonderful presentation. Thank you so much. That was unbelievably valuable. And we do have quite a few questions. As a reminder, if you have a question, we welcome that. And please type it into the chat box on the left side of your screen.

36:38     [Moderator] Okay, our first question is, what are some examples of over-the-counter vaginal moisturizers? Brand names, they're looking for.

36:46     [Dr. Bober] Sure. So, I would say there are a number of over-the-counter moisturizers. Brand names that you might recognize are Replens is an over-the-counter moisturizer.

 I will say that there are now two types of over-the-counter moisturizers that are hyaluronic-based moisturizers. Hyaluronic acid is a molecule that holds water in tissue and has been used by dermatology companies for many years. Two over-the-counter hyaluronic-based moisturizers. One is Hyalo Gyn, H-Y-A-L-O-G-Y-N.

There's also a product called Revaree which is a suppository insert, also hyaluronic-based. Again I think if you get online and do some looking, there are a number of products that worked as over-the-counter-based moisturizers. We are partial to the hyaluronic-based moisturizers because I think they are probably some of the most effective non-hormonal moisturizers on the market. But I'm routinely surprised at how many more moisturizers are on the market on a regular basis when you go to CVS. So, hope that helps.

38:12     [Moderator] And it should say on the packaging if it's a lubricant or a moisturizer. You should typically see a difference, is that correct?

38:22     [Dr. Bober] I think that's right. I mean, there are a couple of products that bill themselves as both. In general, lubricants are not moisturizers. I think that's the more important point. That a lubricant is really meant to reduce friction during sexual activity, but it does not hold moisture in the tissue. Yeah.

38:43     [Moderator] Got you. Okay. Thank you. Our next question is, do you recommend having your sex hormones tested?

38:51     [Dr. Bober] Yeah. So, that's actually a really good question. I mean, this is a common question. And there are certainly certain tests that can determine whether a woman is in menopause or not. I would say that there is a fair amount of controversy around this because there are many clinicians in private practice who have whole practices based on sex hormones and compounding of hormonal remedies. These are not recognized or recommended, typically, not approved by FDA, and certainly not universally agreed on or consensus recommendations from, for example, the North American Menopause Society. So, I do think you have to be careful with this notion of sex hormone testing.

There are certainly a range of normal levels in both testosterone and estrogen for women in general. So, I guess, my primary point here is that I would want to be selective about who I'm going to. And I would be inclined to want to see a clinician who is maybe certified as a menopause practitioner. Certainly, through the names in North American Menopause Society website, there are practitioners who are certified in managing menopause.

I just would caution people to be careful about that. Because I think that, like I said, there are definitely people who have whole practices around sex hormones and compounding remedies, which are it's not always clear what snake oil and what's not. So, I'm not being critical across the board, but I think you have to be careful about making sure you see someone who is well-trained in menopause management.

41:09     [Moderator] Absolutely. Okay. Our next question is, it seems like vaginal GVH symptoms are very similar. The other issue-

41:18     [Dr. Bober] Sorry. Can I just go back to that piece? One thing I will want to-

41:19     [Moderator] Oh, please, yes, yes.

41:20     [Dr. Bober] Sorry, I do want to answer that. One thing I really have noticed though, I will say, is that often, there are so many things going on after transplant and people are discharged from the hospital and have so many things to think about and clinicians have so many things to think about that menopause is often not on the list. I will say that many women I have had the frustrating experience over many years. I have seen women who should have been put on estrogen replacement, who went into premature menopause and really should be on some estrogen replacement at least until the age of natural menopause, and we're not because it was more just like an oversight. Does that make sense? Because there's so many other things to think about. So, I would just say that if you have gone through transplant before the age of natural menopause, let's just say under age 50, and have not been put on any estrogen replacement, and are having distressing genital urinary symptoms, it is important to actually go back to your team and ask about hormone replacement therapy. So, that is something that often is not contraindicated, but sometimes gets just lost in the shuffle. And it does need to be addressed.

42:40     [Moderator] Okay, that's really helpful. Okay. So, our next question is, it seems like vaginal GVH symptoms are similar to some of the other issues you mentioned like dryness and pain. What is the difference? And how do you know if it's GVH and not menopausal or other post bone marrow transplant issues?

43:00     [Dr. Bober] Yeah. So, I actually think that a lot of times, you can't tell the difference just in terms of how you feel in terms of symptomatology. I think the thing that's important is that a gynecologist, if I'm not mistaken, can do a biopsy, can look at that tissue up close and be able to tell the difference. And the reason why that nuance is important is because if you may need something like a topical steroid or immunosuppressant, you're not going to necessarily get that if you're just treating it as if it's only about needing of a, for example, a vaginal moisturizer.

So, I would say that if you're having those symptoms and you are, for example, using a good moisturizer, and it's not getting any better, one, you would want to go to GYN appointment for that. And the other thing is that if you're having GVH anywhere else in your body, right, it's also very possible. And then, if you're having those symptoms in terms of vulvar or vaginal tissue that you would have up there as well. So, that would be another clue.

44:07     [Moderator] Okay. Our next question is if you are already using estrogen cream, can you also use a moisturizer?

44:15     [Dr. Bober] Absolutely. And actually, a lot of women find that they need to use both. For people who are really having a lot of dryness, a lot of women will alternate days, use a cream estrogen-based versus a non-hormonal moisturizer. So, they're using something on a daily basis. Many women will alternate or use both. And lots of women find that they really have to use some moisturizer on a daily basis. So, that is not uncommon at all.

44:44     [Moderator] Okay. The next question is how soon after transplant can you take hormones?

44:51     [Dr. Bober] So, that is a good question. I think that is probably a better question for one's treatment team or for one's gynecologist. I guess the implication there is wondering how do you know if your own estrogen or your ovarian function will return after transplant, or there'll be some change in natural function. I think that that would probably be a better question. There's probably a variability in that answer. And I would start with one transplant team with that, and if they aren't sure, that would be a question I would take to my gynecologist or to somebody who's a menopause practitioner.

45:33     [Moderator] Okay. This is a great question. Actually, I have my-

45:36     [Dr. Bober] I'm sorry, but just to say, the short answer is not long. There isn't a minimum amount of time where somebody has to wait for years to figure out whether they're in menopause or not. You do not have to wait. There doesn't have to be months or years of time that goes by before you're able to replace some of that hormones and certainly, especially, vaginal hormones. That might be something that you do right away, so.

46:06     [Moderator] Excellent. Okay. So, the next question is reappearance 33 years post-transplant of HPV, is it related to transplant? And I can speak a little bit to this because I had my booster for Gardasil yesterday and I'm 42. And that is new with our treatment plan is to now have the vaccine for HPV. Can you talk a little bit more about that and relate it to transplant and HPV?

46:31     [Dr. Bober] So, I'm not sure of the answer to that question. I would say that anything that reappears 33 years later, it would be hard to say that that was because of transplant that you had a reappearance over three decades later, right? There are all kinds of things that can reappear 30 plus years later because of some shift in the body's immune system, right? It also has to do maybe with just changes.

So, I would not say that that would be something you can assume has to do with transplant. If you're thinking going through transplant and not having any issues with HPV for over 30 years, I wouldn't assume that that is transplant related. Although, it may well be that whatever issues are in play are heightened by the fact that one's immune system is always slightly less robust. So, it's possible.

47:42     [Moderator] Got you. And then, just a follow up, as far as the Gardasil vaccine, is that now standard of care for all transplant survivors, or is there a specific cohort or age range that that's suggested for?

47:56     [Dr. Bober] I don't know the answer to that. That's a really good question. This is where I would say that I'm a clinical psychologist. So, I do not know the question about Gardasil. I know that there is a recent change in the age until when you can get that. I believe it is indicated through age 45. So, question about whether it is relevant in a different way after bone marrow transplant, I am not sure about that. I think that will be worth asking your team.

48:33     [Moderator] Okay. All right. Let's see. A year after transplant, I had to have TAH BOS. I'm not sure.

48:42     [Dr. Bober] That's hysterectomy.

48:48     [Moderator] Okay. And their gynecologist initially put them on estrogen. But they did not like the effects. And now, on Revaree. They find it hard to find the right spot. Is there a tool you can recommend that can be helpful to get that suppository in the right spot?

49:11     [Dr. Bober] In the right place. So, that's an interesting question. I am not sure about that. But I do wonder if the issue is that it's hard to get the Revaree in the right spot,. I do wonder if that you might want to switch to the Hyalo Gyn which is applied with a very small tiny applicator. And it is more of a cream than a suppository. It is based on the same hyaluronic formulation. But it's not a suppository. You just basically have to insert with a small applicator. So, as opposed to trying to find an instrument that gets the Revaree in the right place, I guess my thought is you might try the other hyaluronic-based product which is applied with an applicator called Hyalgan.

50:00     [Moderator] Okay. The next question is, I recently heard about Ohnut.

50:05     [Dr. Bober] Yeah, that's awesome.

50:06     [Moderator] Do you recommend this product?

50:08     [Dr. Bober] So, I love Ohnut. It's one of my favorite products in the whole wide world. So, the Ohnut is basically a small silicone bumper that can fit around the base of a penis. So, essentially, it is in the context of women who are struggling with painful sex, painful intercourse. For anyone who is struggling with painful intercourse because a partner may be too large, or partner length is uncomfortable, the way the Ohnut works is it almost is like they're interlocking pieces so you can make it thinner or wider. And it's a silicone band or bumper like a doughnut that fits at the base of the penis and basically takes up space like a spacer. So, there's less penis to have to enter a woman. So, the Ohnut is great.

But I think it really depends on what you're using it for. So, we find, for example, a woman who has gone through a hysterectomy, and they may actually have the vaginal canal is actually maybe shortened or if you've had radiation and there's a shortening and your partner is large or long. It's just a great workaround like a mechanical workaround in order to make sex less painful. The thing about the Ohnut, just to clarify, is that it really has an impact on the length, not, as you could imagine, the diameter of the partner. Does that make sense? So, if you're having pain or discomfort that comes from lack of capacity to stretch in terms of diameter, that's really where we think about doing that work with pelvic PT in terms of using dilators or pelvic floor physical therapy to help a woman gently systematically get stretched back to that tissue so you can comfortably insert something in terms of diameter, not just in terms of length. But the Ohnut is a great product and wonderful young female entrepreneur in New York who created that in order to help women manage painful sex. So, it's a nice resource.

52:29     [Moderator] Oh, that is a genius product. Okay. So, a couple more questions. I'm curious how do you start the conversation with your partner? And what can be their role in your treatment?

52:48     [Dr. Bober] Oh, actually, so I'm just looking at the question about Gardasil, question going back to what you asked me about. There is actually a study ongoing looking at that right now in women between ages 18 and 50 at least three months after transplant in order to determine safety in this population. So, I know you said that you just had that. This is there in the study that is recently looking at that, and I would imagine that that's something that people are certainly are studying right now.

Question about how do you talk with your partner. So, I think the first thing I would say is don't start that conversation at 11:00 at night in bed. I think it's helpful to think about a time and a place where you can say to your partner, "I've been really thinking a lot about our connection and sexuality and intimacy. And I wonder if we could find a time to talk about it," right? So, planning to have the conversation instead of just jumping into it, I think it'd be helpful.

And to be able to say, "This is something that's been on my mind and that I'd love to be able to ask what it's been like for you because I know that it hasn't been easy for me." And I think it's important the set up, I think is important. Does that make sense? Able to really set up the conversation for success rather than ambush someone when they're least expecting it. And then, I think the other question or the other piece to starting the conversation is to saying, "I definitely miss being close." "I know things are different. And there may be things that are permanently different. But I would like to be able to find a way to work together on some of the challenges."

And so, the first thing to do, I think, is that you want to see, right, to full stop and see what your partner says when you say that. To just gauge where they are. To get a sense of what they might be feeling worried about or frustrated about, right? And then, at that point, to be able to say together, "Let's make a plan for how to put some time into this in a systematic way."

I guess that's the other piece, I think. What often happens is that the assumption is that, "Oh, we can plan a romantic weekend six months from now and everything will be fine." And really, when I think about it, working on renewing one's sexual life with a partner isn't any different than figuring out how to get in shape and focusing on exercise and planning for it and doing it regularly. It doesn't happen overnight. And partners probably need to be able to say, "Listen, we need this to attend to this. We need to put this on our radar." So, it's not something that just happens last minute or when somebody least expects it. But we plan on a weekly basis to say," What day or what night or what point this weekend can we take an hour to really just have time for the two of us," right? "Where we turn off our phones. Where we turn off our cell phones. Where we're just really focusing on connection."

It doesn't necessarily have to start with sex. It may start with something like just being together and not distracted, right? Or just having a conversation about what each other's goals are or what the values are. But I think that figuring out how to really be able to commit yourself to time where you as a couple are engaged and troubleshooting and being creative together is a very important starting point.

56:27     [Moderator] Thank you. That is so helpful. And our final question is, I think we addressed this a little bit, but I think we might be able to go into more depth. Where can people get vaginal moisturizers?

56:39     [Dr. Bober] Yeah. So, vaginal moisturizers are definitely available online. They are absolutely available at Walmart, at CVS, in the area that has the tampons and personal products. There are now a number of products. And you can see they're directly written as being vaginal moisturizers. And they are pretty readily available. If anybody wants to send me an email directly through the Sexual Health Program email box on the Dana-Farber website, I'm also happy to send anyone our resource list that we have that has a number of names, products and details in terms of ingredients and that thing. I'm happy to send that to anyone who emails me for it.

57:30     [Moderator] Excellent. And then, I just want to draw everybody's attention to the website for Dana-Farber and the Adult Survivorship Program that has more information about sexuality and cancer. That's right at the top of the slide right now.

57:46     [Dr. Bober] Thank you.

57:46     [Moderator] Some very great resources there. Yes.

57:47     [Dr. Bober] Right, and we do have, I was going to say we also have these products at the Dana-Farber boutique. And I believe people are able to get some of that by mail right now as well. And they have a website too. So, thank you.

58:03     [Moderator] Excellent. Okay. Well, thank you so much. This has been a very enlightening presentation. And I'm so glad for all the questions that we had. On behalf of BMT InfoNet partners, I would really like to thank Dr. Bober for her very helpful remarks. And thank you again to the audience for those excellent questions.