Presenter: Kristine Donovan PhD, MBA, Associate Member and Clinical Psychologist in the Supportive Care Medicine Department at Moffitt Cancer Center
This is a video of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium
Presentation is 42:30 min, followed by 11:00 min Q & A
Sixty percent of women report at least one sexual problem after transplant, especially those with graft-versus-host disease (GVHD). Sexual difficulties are a couples’ problem that can be addressed with counseling, medical interventions and over-the-counter treatments.
• A variety of factors influence sexual health after transplant including physical changes, emotional challenges, relationship issues and lack of information or cultural taboos
• Although help is available, doctors and patients often don’t discuss sexual health openly and explore remedies for problems
• Communicating with your partner, flexibility in initiating sexual activity and focusing on pleasure rather than performance can improve sexual relations
02:26 The most common sexual problem after transplant is reduced interest and desire in sexual activity
03:08 Fatigue and emotional problems can reduce interest in sexual activity
02:39 Pain with intercourse is common in women after transplant
04:34 There is often a decrease in emotional intimacy in relationships after transplant
09:48 Rule out physical problems before assuming sexual difficulty is an emotional problem.
24:46 Spontaneous desire for sex may decrease after transplant but you can build responsive desire
30:48 Exercises to help resume intimacy – sensate focus, Kegel exercises
35:00 Lubricants, estrogen therapy and vaginal moisturizers can help maintain vaginal and sexual health
39:00 Vaginal dilators can help with narrowing of vagina. Clitoral stimulators can help blood flow to vaginal tissues
40:34 Mona Lisa Touch®,and oral medications such as Addyi® and Ophena® have helped some women with sexual health issues.
Transcript of Presentation
00:00 Overview of Presentation: I appreciate your attention this morning. We've got a fair amount to cover, so I will try to be efficient in my remarks this morning.
We're going to just review briefly the incidence of sexual problems in women after transplant and the effect of sexual problems on quality of life, the types of sexual problems, and some of the contributing factors or risk factors. Then, we're going to spend a fair amount of time on techniques and therapies available for improving sexual experiences after transplant.
Then, we do want to leave time for comments, questions, criticisms. This young lady here's going to keep me on time.
00:48: Approximately 60% of women report at least one sexual problem after transplant: The research that has been done, there's not too terribly much but a fair amount. There needs to be more. Nevertheless, we know that about 60% of women report at least one sexual problem after transplant.
01:02 Sexual difficulties are particularly high in women with graft-versus-host disease: This won't surprise you to know that patients with graft-versus-host disease report poorer sexual functioning. In fact, 35 to 50% of women are reported to have genital chronic GVHD, so that's one in two essentially. That's quite a high number.
As you probably well know, genital chronic GVHD can lead to vaginal health problems, skin rash, increased sensitivity, which will directly affect sexual activity, sexual response. Then, in addition to that, we also know that chronic GVHD and high dose steroids may cause physical appearance changes, which, for many women and men, but we're going to talk about women today, will adversely affect sexuality and certainly a woman's body image as well, which will then have, if not a direct effect, an indirect effect on women's sexuality after transplant. In a nutshell, it's a big problem.
Common problems after transplant, this initially, I will tell you, was one slide with a whole bunch of things. For purposes of this presentation, I made it two slides, but the point I actually want to make is it's a long list.
02:26 Probably the most common sexual problem after transplant is reduced interest and desire in sexual activity. That's not just after transplant, but that's after cancer, as well, in terms of sexual problems, any kind of cancer.
02:39 Pain with intercourse is common in women after transplant: First and foremost, for many women, and there are some handouts here on that first chair, is vaginal dryness, vaginal atrophy and stenosis, which ultimately will result in pain with sexual activity, especially intercourse. There's vaginal bleeding and irritation, loss of sensation in erogenous zones, changes in physical appearance and body image, and then ultimately an avoidance of sexual activity.
03:08 Fatigue and emotional problems can reduce interest in sexual activity: That's a fairly long list, but I'm going to add to it and tell you that there's more to it than this. This is often times when I encourage patients to think very broadly about sexuality and about sexual activity because, for example, if you're exhausted, you're much less likely inclined to want to engage in sexual activity. If you're experiencing mood changes like irritability, anxiety, or depression, you're much less likely to want to engage in any kind of sexual activity or to feel sexual in any way.
03:45 Urinary and bowel incontinence can reduce interest in sexual activity: The other thing too, this is something that we don't often talk about, is urinary and bowel incontinence. That can be often times as a result of menopause. Women who are postmenopausal will often report urinary incontinence in particular. There are estrogen receptors in the vaginal tissues which will... Okay. Now I'm just thrown here, which will cause urinary incontinence. As you might imagine, women who are experiencing urinary incontinence are not necessarily really enthusiastic about sexual activity.
04:34 There can be a decrease in emotional intimacy in relationships after transplant: Ultimately, though, what we often see is a decrease in emotional intimacy and of closeness in a relationship. You know, we might start with, for example, reduced interest or desire or even let's start with vaginal dryness. What can ultimately happen, what we can ultimately see is decrease in emotional intimacy and closeness in the relationship. We've gone from something relatively straightforward to something that's really much more complex. There's a lot of interrelationship there.
05:08 Pain medications can interfere with sexual health. Just to make it a little bit more interesting, I'm going to talk some about the contributing factors or risk factors. Here, we have, for example, menopausal symptoms, medications, which I'm going to talk a little bit more about later, but everybody... I shouldn't say everybody, but an awful lot of people know those SSRIs, those antidepressants, they often times will reduce sexual desire, delayed orgasm. Well, I'm here to tell you that pain medications are also associated with reduced desire and antiemetics as well. It's not as straightforward or simple as those SSRIs.
05:46 Issues affecting sexual activity before transplant don't go away after transplant. Couple of other things. We've already talked a little bit about some of these emotional issues, relational. I gave you a very brief example.
Had a woman that I saw, actually was seeing her several years ago. She came to me, and she said, "I can't sleep. I go to bed at 11:00 at night. I fall asleep. I'm up by about 3:00 in the morning, and I can't sleep. You know what I do? I exercise. I go outside, and I walk."
Her husband said, "Stop walking outside. I'm going to get you a treadmill." She would then be tired enough to fall back to sleep. I'm like, "Oh, boy. We got to address this sleep thing. This is an issue." Then, I had the presence of mind to say, "Tell me about your sleep before you got cancer." "Well, I'd fall asleep about 11:00 at night. I'd sleep. I'd wake up at 3:00 in the morning, and I'd walk." I'm like, "Okay. Wait. You've had an issue with sleep for years." "Yes, I've had an issue with sleep for years."
The point being if there had been issues in sexual functioning or in the sexual relationship prior to cancer, my money is on those problems persisting with cancer.
06:59 Sexual issues are a couple's problem. Partner dysfunction, though, too. We don't often think about that. The partner may have his or her own sexual problems that we have to factor in when we think about the patient's sexual problems.
Then, there's some social-cultural issues. When we talk about a variety of sexual behaviors, there may be some societal taboos or some personal limits to what a person is willing to talk about or willing to engage in. Ultimately, as a therapist, what I think is absolutely most important is thinking about a sexual problem in terms of a couple's problem. It's not just the patient who really is the issue, if you will. The patient may have the issue, but really in order to address the problem, it's really much more effective and much more productive to think about it as a couple's problem. We'll talk a little bit more about that as we go.
08:02 Talk with your doctor about sexual problems. What I absolutely encourage patients to do when working to address a sexual problem, and I've been in a lot of talks where the presenter says, "As a patient, has anyone talked to you about this?" A lot of people don't raise their hands. I wonder about that because the providers that I work with are fairly persistent or at least they maintain they're fairly persistent in asking about this. Sometimes it's sort of, "Well, I asked," and then it isn't until much later that a patient or a spouse or a partner may bring up the issue or it's sort of done sort of back channels. Nevertheless, I'm not here to say we talk about it because, by and large, we don't, absolutely. What I often encourage patients to do is just begin, in many cases, seeking reassurance that the problem is not unusual. Maybe it is.
We have to ask the question, "Is this something that other people are experiencing? Have you heard about this before?" Then, certainly information about potential problems and their causes. Lots of patients say, "They sent me from the primary care doctor's office to the emergency room to the third floor of the hospital. The last thing I was thinking about at that point was my sexual relationship," or, "They told me I'm going to be in the hospital for weeks. The last thing I was thinking about was my sexual relationship or my sexual functioning." It's absolutely the case that this is very often put on the back burner. It's very hard to anticipate unless we're talking about fertility sometimes where there's some providers that will bring that up.
09:48 Rule out physical problems before assuming sexual difficulty is an emotional problem. For many people, even that's not brought up. Nevertheless, potential problems, the point being are we really in the mindset of thinking about potential problems. Often times, absolutely not. If there is the opportunity, if you do have that mindset, certainly get some information about potential problems. Specific suggestions for overcoming problems, things that you can act upon.
Referral for medical testing. As a psychologist, one of the very first things I learned was rule out the physical. Now, obviously, I'm not that person. I'm not going to be, but the last thing I want to do is attribute a problem to someone's emotional state because very often, maybe think for example of GVHD, it's a physical problem. That needs to be treated, and then some brief counseling or interventions.
That's essentially what I'm going to walk you through this morning, is some of the things that I do with brief counseling.
This is a given. I saw this slide again this morning as I was looking at my slides, and I thought, "Well, no kidding." This actually is really much more important for providers, really respecting the fact that you need to have good rapport with the patient. You need to be comfortable with addressing the issue. I've had providers kind of elbow each other, one in particular who happened to be a GYN oncologist. His colleagues joked and said, "Just mention the issue, he's the first one out of the room." That's unfortunate, but, again, I think these are all things you know as patients. That really is important to have some rapport with each other to begin to approach this topic. Some brief sexual counseling. Again, I'm going to kind of walk you through these things.
11:40 Addressing sexual problems begins with knowing your body. Here are the elements of things that I do with patients, some basic sex education, the role of hormones, for example. Appreciating what has changed when it comes to sex and intimacy.
Very often I've heard patients or spouses and partners say, "When's it going to get back to normal?" or, "When is it..." I'm like, "Oh, boy. It's not. It's absolutely not," and it being anything and everything - our lives, our sexual relationship, what have you.
I know. We've got to come up with a better term than new normal because I'm hearing more and more that patients hate that term. If you've got something better, by all means, I'm all ears. Certainly, suggestions for managing changes, ideas for resuming sexual activity. Sometimes it can be fairly straightforward and something that the patient simply hasn't thought about. I've had patients say, "Well, why didn't I think of that?" Because you're thinking about so many, many things.
Then, information about specific therapies. Again, we'll get to some of that as well.
Sex education, knowing what to expect, your own anatomy. Just really honestly sometimes it's basic kind of sex education 101, but how many of us had sex education 101? I went to a Catholic school. My mother doesn't even know I'm talking about this today, and I'm an adult.
Your own sexual, and here your sexual response cycle. What works for you? What doesn't work for you? If you had any sex education, there's the old Masters and Johnson, but it's relatively straightforward. There's desire, arousal, excitement, orgasm, but that's the textbook. What is it that actually works for each of you? What doesn't work for you? Certainly, the effect of disease and treatment on function, the role of hormones.
13:41 Understand the role of female hormones in sexual response: The more and more that I work with women, the more and more we don't know anything about hormones. We know a little, but there's a tremendous amount I think that there is still to be learned that the medical profession, because I'm just a psychologist, but that we really don't know.
I see time and again with women who have chemotherapy-induced menopause who are undergoing endocrine therapies. The role of our hormones in our mood, in our physical well-being, but especially in the work that I do, I don't think we can begin to appreciate the effects that our hormones really do have. Then, certainly just the effect of aging and menopause on function. Menopause absolutely, whether it's chemotherapy-induced, prematurely induced, or whether it's a natural menopause, there are significant changes that we absolutely have to recognize.
14:47 Understand your sexual response cycle. I'll walk a person through their own sexual response cycle. I've asked women, for example, "Are you able to have an orgasm?" "I don't know. I haven't tried since the transplant." That's sometimes I give them a homework assignment, "Well, go home and see if it still works and see, what does it take, what's involved."
Often times, before you've engaged with a partner, absolutely, you need to re-familiarize yourself and become comfortable with your own sexual response cycle, your perhaps altered or changed sexual response cycle. Get to understand it, appreciate it before engaging with your partner. If you don't know what your sexual response cycle is, my money is on his not knowing what your sexual response cycle is either.
15:45 Menopausal syndrome and sex. Just some basic education. The menopausal syndrome, how many people are not familiar with the menopausal syndrome? The thing that I like to call people's attention too, though, again is this urinary incontinence. I think we hear a fair amount about hot flashes and night sweats. We hear some about irritability, that people think that those of us are irritable.
Nevertheless, we know about those things, but they absolutely, they're real. They need to be taken into account and appreciated when it comes to sexuality. Even if it's that loss, for many women, whether it's premature menopause or natural menopause, you've been through natural menopause, there is a change that is absolutely a significant life event that you're experiencing.
16:43 Addressing some of those menopausal symptoms. Where I work, systemic hormonal therapy is pretty much across the board contraindicated. Alternatives to hormone therapy, just really some lifestyle factors, some behavioral issues. You know, sleeping in a cool room.
This one I like, exercise. I had a woman say, "Well, I'm sweating when I exercise, so I might be having a hot flash, and I'm just not as aware." I had another woman who said when she had a hot flash, she'd put her head in the freezer. That really seemed to work. She put her head in the freezer. Then, they bought a new freezer. It was one of those ones on the bottom. She said, "Now, my head's in the freezer, and my rear end is in the air, but it still works." Acupuncture, there's some evidence that acupuncture is helpful for menopausal symptoms. Certainly, we know about the typically low dose antidepressant medications. Then, I can't see it, but antihypertensives can be helpful for hot flashes in particular.
17:50 We need to acknowledge that things change after transplant that can affect sex: This used to say the new normal, but I changed it. Absolutely, absolutely, we have to appreciate that things have changed. One of the examples I give, I had a 40-year-old woman who no desire. She was married, had a young son, no desire, painful intercourse. She came by herself to see me.
"Your husband, where is he?" "He's at work. He works." "Great. Let's talk about your sexual response." The cues were, "Take your clothes off," or, "Lock the door." That was okay. It used to work. It used to induce some responsive of desire in this person. Well, lo and behold, it wasn't working anymore. She was postmenopausal. She was tired. It wasn't working anymore, but her husband wasn't willing to change those cues. He's like, "Well, you're finished. When's it going to be back to the way it was?"
Well, I only saw her once, not because I didn't think that I could help her, but because there was an impasse there. Her husband did not want to participate, and she really was confident in his inability to adapt and his inability to change how he engaged with her in a sexual manner.
Really, as I've already mentioned sort of the loss and grief, they're natural expected reactions. Physical recovery and healing absolutely takes time. I saw a woman the other day who has been through transplant. Yes, she's actually on her way to CAR T at this point. She says to me, "My husband says, 'You're finished,' and I'm still so tired, and I have some pain." I'm like, "Okay. How long ago did you finish chemotherapy?" "Two weeks." I'm like, "Whoa. Wait, wait, wait. Wait a minute. Wait. Wait. Please."
20:00 Communication with your partner is important: I've also had women say, "Listen, I'd be okay if I never had sexual activity again," and I'm very quick to say, "Don't take it off the table. It absolutely can be, often, very much is a very positive aspect of your quality of life. Let's not jettison it yet. Let's do some things to see if we can't get some of that back for you." Certainly, each person likely has his or her own fears and anxieties.
Communication is absolutely key because your partner has his or her own concerns. "My wife's not well. She's been frail for so long. I don't want to hurt her. I'm even afraid to hug her. I'm afraid if I hug her, she's going to think I want something more, so I don't hug." Then, we have that loss of intimacy. It's absolutely important to acknowledge that things are different. Because things are different, I encourage patients to keep an open mind and literally practice some of these things.
21:07 Have flexibility about when to initiate sex: Flexibility in initiating sexual activity, again, "He used to hug me, and then I kind of knew. Well, I'm afraid now if he hugs me," or, "I'm afraid if I hug her now, she's going to think..."
Again, really that communication is so important. Certainly, focusing on pleasure rather than performance, a variety of sexual behavior, feeling sexually attractive despite physical changes, maintaining a positive attitude despite setbacks.
I'm not suggesting these are all easy to do, but even this pleasure rather than performance, I talk often times about sexual cues. "Take your clothes off. Lock the door," well, there are other better sexual cues. I had a woman say, "You know what? I was sick for a long time, and the last place I have any desire to be sexual is in my bed."
That took some thinking about and that took some communication because her husband, "Okay, that's not working." They found that actually with just some communication that if he initiated some intimacy on the couch, she was much more receptive. She was equating the bed with not feeling well. Makes sense, but sometimes we have to talk about these things.
I've had lots of couples say, "We've never had to talk about it before. It worked well, but now we don't have the words. We've never had to talk about it. We're not sure how to talk about it." Again, sometimes just initiating the conversation between the partners and being open and honest with each other about the physical changes and the emotional changes as well. Again, reconsidering sex and intimacy. I won't go through these in detail, but, again, it's like those cues.
Being affectionate with my partner always has to lead to sex. Sometimes we need to articulate that, "No, no, no. I really want a hug. I really want a hug. I don't want anything," or, "You know what, honey? I'd really like to hug you, and I don't want anything else, just so we're more comfortable with that, just the hug itself."
I've heard these sorts of things. If one doesn't experience an orgasm, it's not real sex. It's not satisfying. We'll talk more about sexual satisfaction in just a moment.
23:33 A variety of factors influence sexual desire: First, sexual desire. Consider that desire may be influenced by the quality of the relationship with your partner, absolutely. Your feelings about your own body, your emotional well-being, symptoms such as pain and fatigue. Again, here I'm asking patients to think very broadly about sexual desire.
Again, I've already noted the medications, the anti-nausea medications, pain medications as well as the antidepressants, but I also work with patients who... I'm an advocate of antidepressants. I'm certainly not an anti-advocate. Okay, there may be some sexual side effects, but I see patients who are fairly depressed.
We did have one patient who said, "I don't want to be on an antidepressant because it has sexual side effects." The psychiatrist and I both had the same reaction, "But you don't have a partner, and you're depressed." Well, there are bigger issues at stake. Again, there absolutely is a role for all of these things, pain medication obviously, antidepressants as well. Again, thinking very broadly about sexual desire. Here, this is awfully important.
24:46 Spontaneous desire for sex may decrease after transplant but you can build responsive desire: A decrease or loss of desire, as I mentioned already, it's very common after transplant, but often times what we think about in terms of sexual desire is spontaneous desire, the desire that you may have had when you first met your spouse or partner.
For many men, I'm not pointing fingers, but when you were 16, spontaneous desire, when you were 18, spontaneous desire. Well, that really has, for many people especially after transplant, that's kind of gone by the wayside.
We talk about responsive desire, the idea that motivation follows action. If you begin to engage sexually and you begin to enjoy that, you begin to get some positive feedback, like the touch feels good, just having a massage, that physical touch feels good, you may be able to respond, have a responsive desire to that. Again, if we wait for spontaneous desire, for many people, that's not going to happen.
I encourage patients not to wait but to really begin the activity with the idea that you can build responsive desire. The other thing I actually will ask patients to do this is take them through an exercise and ask them, "What motivates you to be sexual, alone or with your partner? What motivates you to be sexual?"
I've heard some very interesting things. Sexual with my partner, "I want to reward him. It puts him in a good mood. I want to reward him because he's been such a fabulous caregiver." I've heard this both ways, "She's just in a much better mood. Our house is a more pleasant place to be." Again, though, some motivation and really to begin thinking about it and to articulate what it is that leads you to want to be sexual, either alone or with your partner. That's sexual desire.
I'm shifting here. I'm moving to response cycle, sexual desire. Let's talk a little bit about sexual arousal. I can't say enough that sexual thoughts, sexual fantasy, and you don't have to share your sexual fantasies with each other. The example, it's true, the research shows that most couples have sex on Saturdays and on vacation.
Let's think about Saturday. It's Saturday night, and you've got teenage kids, and they're out. They've got the car. One of them got the car. The other one's with a friend, and the phone rings. Where does your mind go? Immediately, the kids are out. You've got to be able to focus the mind. Again, ways, and we'll talk a little bit about ways to do that.
27:49 Sexual satisfaction may depend on other factors besides an orgasm: Sexual satisfaction, again, I encourage patients to think very broadly about this. Satisfaction may depend on other factors besides an orgasm. Relationship factors, the importance of sex.
I work with older couples who, because of various issues, prostate cancer, transplants, that like we think about it, sexual intercourse is no longer an option. But I've had one couple describe themselves as very sexually satisfied. They're very intimate. They lie in bed. They hold hands. They share their memories. The first time I heard that or the time that I heard that, I was like, "Wow. That's intimacy." They would describe themselves as very sexually satisfied. Let's not measure ourselves against what we think is happening down the street or on TV.
Satisfaction may involve, as I've already mentioned, that closeness and comfort and even safety between partners. Ingredients for satisfying sex. I'll actually ask patients to identify, "What are your ingredients, what do you need for satisfying sexual activity?"
The 16-year-old, again, I'm stereotyping, the 18-year-old might say, "I need an orgasm." The 48-year-old may say, "I need 30 minutes of uninterrupted closeness, physical contact with my partner." It's important that you identify what those are for you and for your partner and for you as a couple. Then, I'll ask people to actually do this exercise on their own and then to share it with each other. Ingredients for a satisfying nonsexual experience and then a sexual experience as well.
29:48 Suggestions for resuming sex: Then, some suggestions for resuming sex. Some of these, I'm certain that you would have heard before. Substitute caressing and massage for intercourse. Increase the frequency of intimate activities.
I had one transplant patient who, she and her husband, they had small children. She described, as an intimate activity, her mother-in-law watch the kids, and she and her husband went, got sodas at Walmart, and sat in their truck in the parking lot. It was quiet. They each had a cool drink. That was an intimate activity for them.
Again, you've got to think about what works for you. I've already mentioned being affectionate outside the bedroom and absolutely trying things more than once or twice. Think about raising children, "Oh, I tried that. It didn't work." How old is he or she? How many times? Eight times, nine times. Maybe not eight or nine times, but certainly more than once or twice.
30:48 Exercises to help resume intimacy – sensate focus: Then, resuming sexual activity with a partner stepwise or gradual fashion. If there's one thing you take away from this presentation this morning, I would encourage it to be this, sensate focus. If you Google it, you'll see what it is but also variations on a theme here. It's the idea of resuming physical intimacy and emotional intimacy. It's a series of exercise that occurs in stepwise fashion.
Is anybody familiar with sensate focus? All right. I've done my job. We can all go. You take turns. Over the course of several weeks, let's say you set aside an hour in a given week, one hour. You take 30 minutes. You're the recipient of touch, no talking, and your partner provides that touch. Then, you change roles. Then, you're the toucher for 30 minutes. No talking in that first stage.
The next week, no genital touching, no intercourse. It's just to establish awareness of physical sensations.
Then, stage two, so second week or third week, there's the mutual touching. Again, nonverbal communication, no expectation of sexual response. Subsequent stage is you continue.
Ultimately, you may progress to intercourse, but it does take time, but I would encourage anybody to engage in this exercise because, if you're patient, you're essentially becoming not only reacquainted with your partner's body as a partner but of your own body. It's not a needle stick. It's not a nurse touching you. It's reacquainting yourself with your body and enabling your partner to become reacquainted as well. I strongly encourage some further investigation into sensate focus.
32:57: Find time for sex when pain and fatigue are at a minimum: Then, simple things. Finding time for sex, sexual activity when things like pain and fatigue can be minimized. If pain is an issue, take your pain medication. By all means, 30 minutes before, take your pain medication.
33:10 Explore new positions: This is where, again, simple things like changing position can be helpful. "We've never done it that way." Well, you've never had a transplant before or I hope we're talking about this after your first transplant and not your second.
33:35: Focus on pleasure versus performance: Some additional therapies, relaxation training. Again, that focus on pleasure versus performance, some anxiety reduction, certainly dealing with an altered body image.
33:41: Kegel exercises and increase blood flow to the genital area to strengthen pelvic floor muscles: The sexual problems and urinary incontinence. Anybody not familiar with Kegel exercises? I thought so. Men can do Kegel exercises as well, by the way. The idea is to increase blood flow to the genital tissues to strengthen the pelvic flood muscles. We have therapists where I work who do pelvic floor muscle therapies, not typically for transplant patients, but for women who've had some gynecologic cancers specifically.
34:12 Rebuild intimacy slowly: Some additional solo activities. Again, this solo activity and partnered activities, I've had couples say, "Listen, we've got it all planned. We've got a vacation. This is when it's going to be great." I'm like, "Oh, no. It's not. Don't do that." A little bit at a time and don't create the expectation that you're going to get away and you're going to engage sexually like you used to because it's probably not going to be the case. Again, just beginning to build intimacy, rebuild intimacy slowly to where you ultimately may engage in sexual activity. You may not.
35:00 Lubricants for vaginal dryness: Some specific therapies, if you are going to engage in things like intercourse, some self-care to reduce vaginal dryness, irritation, and pain.
Most women, if they've ever had a female exam, and I would say if you've had a transplant, you have, are familiar with lubricants, water-based lubricants, silicone-based lubricants.
Silicone has more staying power. It's a little bit messier, but it does have more staying power. These are typically for sexual activity, a female exam, so kind of a one-time thing. I've listed some there for you that have had some good effects.
The key, of course, is staying away from anything with scents or the extras. All you're going to do is induce an infection and irritation. There are some good ones there. Vaginal moisturizers, this Hyalo-GYN is fairly new. I remember when I was first reading about, "Oh, this is it. Our problems are over." Then, I had a patient who said, "Oh, yeah. I tried that, and it burned." I thought, "Okay. That's a good lesson for me."
36:18 Vaginal moisturizers: One thing is not going to work for everybody, so you do often times have to try different things. The vaginal moisturizers work differently. Vaginal moisturizers are really like moisturizers for the hands. You use them say three times a week but systematically over the course of many weeks, where that's very different from the lubrication, where you're using it say that Saturday evening, for example, where you're using it with sexual activity. We're really talking here then about good vaginal health.
Forget for a moment about sexual activity. Let's call this a commercial for good vaginal health, the moisturizer.
37:01: Vaginal estrogen therapy: Then, local vaginal estrogen therapy. Here are some I've listed. The systemic absorption is pretty minimal. We have a lot of patients in our cancer center who are provided with local estrogen therapy even if they've had, depends on the cancer, but breast cancer.
Our GYN oncologists have said to me, "The systemic absorption is minimal. It's okay, but we can't get our medical oncologists to believe us."
Nevertheless, a lot of women who've had transplant, that shouldn't be an issue, absolutely not. This really is going to be the most effective to reduce the dryness, the irritation, address some of the postmenopausal symptoms.
37:58: Vibrators to enhance sexual health: Then, here's some additional things. I was talking to a medical oncologist yesterday who said, "We need more research." I said, "Well, you might imagine..." Somebody told me this several years ago. I didn't come up with this, but this woman who worked at the NIH at that time said, again, sorry... It just so happens that most of our congressmen happen to be men. She said, "Men do not want to fund a randomized control trial of a vibrator versus a vaginal dilator." Can you imagine the name on that grant?
Nevertheless, the idea here is to enhance blood flow, absolutely, and you can. I talked about earlier about understanding how things work now that you're posttransplant, is increasing your own familiarity with arousal, lubrication, those potential alterations in orgasm. That is a particularly good one.
39:00: Vaginal dilator therapy for narrowing of the vagina: Then, vaginal dilator therapy for vaginal stenosis, for narrowing of the vagina. I had a doctor say, "I tell all my patients to use them three times a week, so I know they use them one time a week." Then I saw one of her patients. I said, "How often are you using it?" "Well, not as much as I should. Well, I've never really used it." "Okay. Thanks." It can be painful for some. For example, for women who've had pelvic radiation in particular, can be painful. Nevertheless, it's helpful.
It's very clinical, and the results absolutely depend on patient compliance. Typically, again, three times a week for 15 minutes. Some women need to use these for a long time, sometimes indefinitely. The idea here again is that stretching the vaginal tissues will enhance the blood flow and kind of increase the health of the vaginal tissues.
40:11: Clitoral stimulator to enhance blood flow to vaginal tissue: Then, an additional one, the clitoral stimulator. This actually is FDA approved now. Excuse me. It's been FDA approved for quite some time. Insurance actually will cover it now. Again, the idea is that vacuum suction is enhancing blood flow to the vaginal tissues. Again, three times or more a week, five minutes at a time.
40:34: Mona Lisa touch – a laser procedure – helps some women: Then, some additional things. Anybody heard of Mona Lisa Touch? Did you do it? Was it helpful?
[audience] It wasn't a cure-all, but it helped.
It's not been FDA approved, which I've had other women say it's helpful. The woman that most recently said it was $1,200. It's pretty pricey, but the women that I've talked to, and they tend to be younger women. I don't know if that's a factor, but it's a laser procedure that, again, we've heard some good things about.
41:13: Oral medications – flibanserin (Addyi®) and ospemifene (Osphena®) to promote sexual activity: Then, some oral medications. This one here was initially developed as an antidepressant. The challenge here is you have to take it every day. When it was FDA approved, they pushed it because there really isn't anything out there for women. They pushed it through essentially, but the outcome in the study was one more sexual encounter over the course of a month than the placebo or the control. Yeah, not much.
Then, this here, this last one, Osphena, is designed for... This, you take every day. You can't drink with it, and you hope you have one more sexual encounter in the month. This one is for vaginal tissues. Expensive. Not a lot out there yet as to whether or not, how effective it is. My time is up. That's actually my last slide. You do have these in your packet. Thankfully, a lot of resources. I direct your attention to those things. Then, thank you very much for your attention.
Question and Answer Session
42:30 Thank you, Dr. Donovan. We will now take questions, but for audio recording sessions, so we ask you use the microphone so patients who weren't here today can then hear your questions. We'll walk around for questions. Who had a question?
42:53 [audience] Advice for single women about confidence with sex when dating: I'm not sure if I'm in the minority here, but what about somebody who is single and doesn't have a partner who loved you before and can be more understanding with you with how things are now? How you are supposed to feel confident when you don't even know if it's going to hurt or not? How would you even address this in the dating scene these days?
43:21 [Donovan] Well, there's a couple of things. One, and you don't have to answer this question, are you going to partner with... Let's assume for a moment it's a man. Are you going to sleep with the guy on the first date?
43:36 [audience] No, of course not.
43:39 [Donovan] As a rule of thumb, I've had patients tell me that maybe after the third date they'll actually reveal their cancer history. We're not even talking about anything other than, "I have a history of cancer." There's that.
The other is you said, "I don't know whether or not it hurts," well, there are some things that you can do like using a vibrator and what have you to find out more about your own sexual functioning and your own sexual response cycle. I would absolutely encourage you, anybody, to do that. I'm not advocating sex ed or anything because I can't. I'm not allowed. No, I'm kidding. We don't know enough about when we engage with, even if it's somebody... You think back, and you've been married 34 years, when you first engaged sexually with your partner, how familiar with you with your own sexual response cycle? Probably not all that much.
44:50 This is just really quick.
44:52 [audience] Can you go in a swimming pool or any ocean if you have this? Because I'm nine years out, but I haven't been in a pool or in the ocean because I'm afraid of germs from an immunity standpoint. You do? Okay. I mean, I was told not to do any of that.
45:20 [nurse in audience] That's an individual. I'm sorry. I'm going to jump in here as a former nurse. That's an individual question as far as what immune suppressions you're still on. If you have line accesses, there's several things, so that would definitely be a speak with your physician. You very well at this point may be able to do those type of activities. It's just there's several factors that would make for each person whether they could or not.
45:44 Thank you. Absolutely.
45:47 [audience] Question about fertility: My question is for a female who cannot have a period any more but she still has the period symptoms and ovulating and all that. How does she go about the fertility part of this?
46:03 Wait a second. Say that again. Dr. Plosker is going to be talking about this kind of thing next up. He's a reproductive... Sorry. Absolutely, absolutely because those are actually medical issues that you have to address. Absolutely.
46:34 [audience discussion] Question about Mona Lisa Touch: Hello. I actually saw you at Moffitt, but the Mona Lisa Touch, I didn't really understand what that was and what it's good for.
46:50 Yeah, please.
46:53 [other audience] It is you go into... I had an OBGYN that did it, kind of like a pelvic exam. They put a very small, honestly, the prep is probably the worst part of it because they numb you. They put this smaller than I would say it looks kind of like a dilator or something, but a small little laser thing in there.
It basically lasers around your inner area where it's most sensitive. I don't know what it really does, reveals the tissue probably, but you do a series of three treatments initially. That's approximately around the $1,200. We had a few months in between each.
I will say that first day it hurt like hell. It felt like a burning down there. It was a very bad burning. By the next day, I felt nothing. It did definitely help me. Once you do those three cycles, which takes three or four months to do, you only need to do it annually and then it's like two or 300 bucks I think is what they charge. I mean, it depends on who the doctor.
48:12 What is it for?
48:17 My vaginal wall is completely, it's atrophied.
48:22 Yes. It does not help with dryness, at least not for me, but it did help with the atrophy because I couldn't even get a medical exam before that, and now I can actually do that, and the sex component is better. I'm glad my husband isn't here, but it did help. It really did. It's not covered by insurance.
48:51 We have time for one more question.
48:54 This is very, very enlightening, so thank you so much.
48:56 Well, good.
48:56 [audience] My question is: Are there any particular sexual activities that partners should no longer engage in after the transplant process?
49:07 If the coordinator, excuse me, the bone marrow transplant coordinator, because that is really, that's a medical immunity issue.
49:16 [nurse coordinator] Again, speak with your physician specifically about what immune suppression components you're still on. Also, platelets, those kind of things are very important. Especially if you have anal sex, your platelets have to be at a certain level for it to be safe for you to have different types of sex.
Also, as far as oral sex, and those kind of things again, speak with your physician specifically. Everybody's immune suppression in this room is very different and what at points you're able to, once you start tapering immune suppression, may be different than... Definitely speak with your physician. There are probably no restrictions at this point if you're totally recovered on your blood count and medications, but each patient is going to be a different situation. If it's a quick one, we do have time for one more.
50:13 [audience] Hi. On the moisturizers, are they just over-the-counter?
50:20 I'm sorry. They are. They're over-the-counter.
50:20 They are.
50:20 They sure are.
50:24 [audience] Then, the estrogen therapy, what does that do exactly? Is that...
50:30 [Donovan] It acts as if... Well, it replaces the estrogen that you no longer have in those tissues if you're postmenopausal. If you're not postmenopausal and the estrogen is still very much circulating, then you need to have some medical tests done to see the levels of hormones. Then, you may need some additional, but there's some different delivery systems. It essentially will improve... Again, I really think about it in terms of good vaginal health. It won't be as fragile. It won't be as irritated. It won't be as dry.
51:28 But it does nothing as far as like your sexual desire or does it?
51:33 Well, to the extent that you find sex painful and that affects your desire, it absolutely will help in that respect, absolutely. Will you have this spontaneous desire because now you have more estrogen in your vaginal tissues? No.
51:48 Okay. Thank you.
51:51 [audience] Comment about KY lubricant: I one really quick thing to add. We're talking about a lot of lubrication. A lot of patients, they're like, "That's external. That's not helping me on the inside." There's actually and, Dr. Donovan, you may be familiar, I'm sure you are, but there's actually a KY product that actually has an ovule that actually you insert into the vagina. Then the capsule dissolves. Then you have lubrication higher up into the vaginal canal. A lot of times, you just have that external, but higher up still needs that. There is a KY product that is in a capsule that actually has a little insert that you put higher into the vaginal canal to help with some higher lubrication. Sorry. Just wanted to add that.
52:38 The estrogen, though, all the applicators, it's internal. Go ahead. Please. You had a comment.
52:45 [audience] Audience question about moisturizers and lubricants: on the moisturizers. For the moisturizers, you're saying you use those three times a week, but I guess would that be a better option for impromptu sex because I'm using the lubricants?
53:05 You actually use both.
53:07 [crosstalk 00:53:07] Oh, hey. I have to stop and get the lubricant out.
53:12 If you think about it sort of building a baseline or a foundation, use the vaginal moisturizer independent of anybody. Whether you're ever going to have sexual activity again or not, use a vaginal moisturizer. Then, if that's sufficient, you might not need lubricant, but if it's not, you will need lubricant in addition to.
53:32 Thank you again, Dr. Donovan, for being with us today.
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