Women’s Sexual Health after Transplant

Presenter: Jordan Rullo PhD, ABPP, CST, Mayo Clinic

38 minute presentation, followed by 15 minutes of Q&A

Summary:

Sexual problems are common in women after transplant and can persist long-term without treatment. Learn what you can do to take charge of your sexual health after transplant.

Highlights:

• Transplant does not take away your sexuality, although it may change it.
• More than half of women experience sexual health issues after transplant.
• Treatments are available to improve sexual health and intimacy after a stem cell transplant.

Key Points:

• 02:53  The most common sexual health effects after transplant are low sexual desire and sexual pain. 
• 06:51  Some medications, radiation and chemotherapy can affect hormone levels and sexual desire 
• 08:27  Poor body image, being on chemotherapy, fatigue, stress and depression can affect sexual desire 
• 16:44  Genital GVHD can cause sexual pain after transplant
• 18:38  Treatment-induced menopause can cause sexual pain after transplant
• 21:46: Don’t continue having painful sex.  It reinforces the connection in your mind between pain and sex
• 24:18:  Over-the-counter moisturizers and lubricants may help relieve painful sex
• 27:07  Creating a menu of non-penetrative sexual options
• 28:45  Prescription options for sexual pain after a stem cell transplant
• 32:48  Sensate focused exercises can improve sexual relations
• 42:20  Pelvic physical therapy for vaginal pain during sex
• 50:02  Mona Lisa laser treatment for vaginal pain during sex

Transcript of Presentation:

00:00  Introduction:   Hi everyone. You'll see the slide says I'm at Mayo Clinic. I was at Mayo Clinic when they first asked me to give this talk and I've since moved to Utah, so I'm in Salt Lake City, Utah now.

00:15  Overview of Presentation:  My talk is Women's Sexual Health after Transplant. Learning Objectives. These are the things that we are going to talk about today that I hope that you all will learn: the incidence and type of sexual difficulties in women following hematopoietic cell transplants, the impact of these on quality of life, techniques and therapies available to improve the quality of sexual experiences, the cause of pain during sex after transplant and possible treatment strategies.

 00:37  Nearly half of people experience sexual problems after stem cell transplant:  Nearly half of people after transplant experience sexual dysfunction —nearly half, that's huge. And for women in particular, this sexual dysfunction does not get better over time. So a lot of side effects after transplant will potentially get better over time if they are not treated. But when it comes to sexual dysfunction, that is not the case. If it is not treated, it is not going to get better over time. So let me add this piece, unless treated. So treatment is really important and we are going to talk about that today.

01:10  Sexual problems women can experience after a stem cell transplant: Let's talk a little bit about how transplant impacts sexual health. Most common sexual health concerns when it comes to transplant: low sexual desire, sexual pain, reduction in quality and quantity of sex, poor body image and infertility. Those are the most common causes, or most common sexual health concerns after transplant. We are going to talk about these three. You are also at greater risk for developing these sexual health concerns if you have or are on chemo, if you had total body radiation, if you are on a variety of medications, if you are having any sort of psychosocial distress. So, my guess is most of you are probably at greater risk for a lot of these sexual health concerns that I just mentioned.

01:58  Sexual problems after a stem cell transplant can persist unless treated. These sexual health concerns cause a vicious cycle because what happens is your sexual function declines, perhaps because you are on chemo or the medications you are on. And then you feel bad, right? ‘I feel bad, I don't have desire, I don't want to be sexual with my partner because I don't have desire or I'm having pain’. You feel bad. And then, because you feel bad, then your sexual function declines even more. Because maybe you feel bad, you start to feel kind of depressed and maybe feel a little bit distant from your partner. So then your sexual function declines even more. And then your partner feels bad. And then you think, ‘oh my gosh, I feel bad that my partner feels bad’. And so just this vicious cycle develops and will continue to repeat itself unless it is addressed, unless it is treated.  And then overall, that may cause some relationship discord which reduces -research shows it actually reduces- quality of life when you are having discord in your relationship. So, what do you do? Well, hopefully I will be able to give some answers on what do you do with this.

02:53  Most common sexual health effects after a stem cell transplant are low sexual desire and sexual pain.  First of all, biggest thing is transplant does not take away your sexuality. It will change your sexuality. You will have a new sexual normal but it does not take it away.

There is treatment for the sexual health side effects after transplant. Most common sexual side effects, the ones that we are going to talk about today [are] low sexual desire and sexual pain. We're going to talk about how do you treat these things, how do you navigate your sexual relationship. So perhaps, you know what the treatments are, but you and your partner are not communicating and you are not quite sure how to get back onto a sexual track. So how do you navigate your relationship?

03:30  There are two types of sexual desire: spontaneous desire and willingness desire.  Let's start with low sexual desire. Now, to talk about this, I first have to describe the two different types of sexual desire. There are two different types. They are equally important. First type of sexual desire is called spontaneous desire. And that is the type of desire where you have that internal drive, that internal craving and just spontaneously, you are like ‘yeah, I really want to have sex right now’. So that is spontaneous desire.

Second type of desire is called the willingness desire. With this type of desire, you don't have that internal driver craving to be sexual, pretty sexually neutral, sex really isn't even on your mind. But, the ingredients are in place that allow you to be willing to be sexual. So maybe those ingredients are: you've got good energy, you aren't feeling stressed out, you aren't in any sort of pain. Then your partner initiates and you think, ‘well, I wasn't thinking about sex, it wasn't on my mind, but I would be willing’. And then, typically, women say that once they are willing to be sexual, that once sexual activity actually gets started, they are like ‘oh, that's kind of nice. We should do this more often’. So, spontaneous desire and willingness desire, two types, equally important.

Let me describe spontaneous and willingness desire based on what is called the circular sexual response model. This is typically how sexual response responds. I will walk you through it because it looks a little bit complicated.

04:51  How your body responds when you have a spontaneous sexual desire:  So perhaps your sexual response responds because you just happen to have a spontaneous sexual desire. So just out of the blue, you think, ‘gosh, I really want to have sex right now’. And that leads you to seek out some sort of sexual stimuli. Maybe that leads you to just feel aroused in that moment. And that kick-starts this circular cycle. So that could be one way that your sexual response begins. You just happen to have spontaneous desire.

05:13  How your body responds when you have willingness sexual desire:  The second way that your sexual response might begin is this receptive or this willingness desire that I mentioned. So let's say you are receptive to be sexual and there is some sort of sexual stimuli, which is your partner initiating sex. As long as biologically and psychologically you are feeling okay — so, biologically, you are not in any sort of pain and, psychologically, you are not feeling super stressed or depressed. — what is going to happen first is that your body is going to experience some type of sexual arousal. And then after that, on the coattails of that, it becomes sexual desire. And this is really important. Basically, what I am saying here is that for most women the body gets started first. The body kind of kick-starts the cycle —’okay, this kind of feels good’. Then the mind goes ‘yeah, I'm down for doing this’.

So body gets started, then mind comes on the coattails. That leads to some sort of emotional and physical satisfaction. It could be orgasm, or you could define sexual satisfaction in different ways beyond orgasm that leads you to feel emotionally close to your partner, which leads you to seek out and be receptive toward sexual stimuli in the future. And that cycle repeats itself. So again, two really important things about the cycle. One is that arousal for most women comes first, the body has to get started. And then the mind goes ‘oh, yeah, I kind of want to do that’. And then, two, emotional intimacy is a really important part of this cycle. If you are not feeling close or connected to your partner, you are probably not going to want to get started in this cycle at all.

06:45  How a stem cell transplant can affect spontaneous sexual desire or a willingness to have sex:  Let's talk about how transplant may impact these two different types of sexual desires, spontaneous and willingness.

06:51  Some medications, radiation and chemotherapy can affect hormones and spontaneous sexual desire:  Spontaneous desire. If you are on any sort of medication or have had any sort of treatment — radiation, chemotherapy — that has impacted your hormones and you have had hormonal changes, that is going to impact your spontaneous desire. And I will tell you why: if you think about spontaneous desire having a gas tank, most of the gas that fills that gas tank, that drives that spontaneous desire, is hormones. So anything that is going to impact your hormone level, is going to empty that gas tank. And that means you are not going to have much spontaneous desire.

07:23 “Honeymoon” phase of a relationship also affects spontaneous sexual desire:  There is one other thing that we know typically fills the gas tank for spontaneous desire. That is the honeymoon phase of a relationship, novelty in a relationship. So that honeymoon phase, that is the first 12 to 36 months of a relationship when everything your partner does is absolutely adorable. They can burp and fart and you are like —’That's so cute!’ But we know that that can't last any more than 12 to 36 months. So if you are in the honeymoon phase, you probably have really good spontaneous desire. You have got a lot of gas in the gas tank. But again, after 36 months, that gas goes away.

Again, anything that is going to impact your hormones is going to impact that gas tank for your spontaneous desire. And if you have been in a relationship for more than 36 months, you probably don't have much honeymoon gas in that gas tank, which leaves you with willingness desire, more than likely, as your main desire. Then, what do you do with that? I am going to describe something called the Dual Control Model which doesn't sound fun at all, but it is actually extremely helpful. The Dual Control Model will explain what you do with this willingness desire if that is your main desire.

08:27  Poor body image, being on chemotherapy, fatigue, stress and depression can affect sexual desire:  The Dual Control Model is based on this idea for all of us: our sexual function is made up of a brake pedal and a gas pedal. So things that are going to hit the brake pedal when it comes to our sexual function, our sexual desire or a willingness to be sexual:  if you have poor body image, if you are tired, if you are on chemo, if you are depressed, you are anxious, you are stressed —  those are going to hit that brake pedal. Things that are going to hit your gas pedal: your partner smells good, he looks good, there is novelty in your relationship, you feel connected with him —  that is going to hit your gas pedal.  For all of us, again, we have a brake pedal and a gas pedal when it comes to our sexual function or our sexual response. In order for sexual function to function, in order for you to be willing to be sexual, you have got to have more on your gas than on your brake. That makes sense.?

Most people, when they think about ‘how do I get my desire back, how do I maximize my desire’, they usually go right to gas pedal. They are thinking ‘maybe we need to do date nights’, or ‘maybe I need to wear lingerie’, or ‘maybe we need to light some candles’. But that is actually not that helpful, particularly in the beginning. And it is not that helpful for this reason:  Imagine that this is a car and you have a ton of weight on that brake pedal. You have pushed that pedal all the way to the floor. And then you decide ‘I am going to put my foot on the gas, I'm gonna put some gas on that gas pedal’. What is going to happen to your car? It is going to stall, the wheels are going to spin. It is not going to go anywhere. So if you got a ton of stuff on your brake pedal, putting stuff on the gas pedal is unhelpful, it doesn't do anything. So the first line in treatment is not figuring out how much can I jam on that gas pedal. The first line in treatment is figuring out what is on my brake pedal and then removing as many of those things as possible. Once you have removed as many of those things as possible, then you can think about adding stuff to the gas pedal. Then the gas pedal becomes relevant.

I am going to go through, pretty quickly, the most common things that hit the brake pedal when it comes to sexual function, when it comes to be willing to be sexual. And the most common things that hit the brake pedal, really nicely fit into this thing called the Biopsychosocial Model. So I am going to talk about the physiological and the psychological things, the relationship and sociocultural stuff that hit the brake pedal. These are the most common things.  I want you to be thinking as I go through this list, do any of these hit your brake pedal? And you can even take a piece of paper and jot down, really try to identify '‘which of these are hitting my brake pedal?’ Because again, the first thing you need to do is identify what is hitting the brake pedal, and then think about ‘how can I possibly remove or change these things’.

11:06  Physical factors that can decrease sexual desire:  First, we will start with physiological: total body radiation, that is definitely going to hit the brake pedal; chemo; genitourinary syndrome of menopause (we are going to talk about this in a little bit when we talk about sexual pain, but this causes sexual pain); aging (as we get older, when it comes to sexual function, everything just takes longer and is less intense);  hormones -again, as we talk about spontaneous desire, anything that is going to impact your hormones is going to reduce that spontaneous desire. And fatigue: if I were to ask you, at the end of the day, if I offered you a platter of sex versus a platter of sleep, which platter are you going to take? I hear many of you saying the sleep platter, right? So fatigue is probably something hitting your brake pedal.

11:46  Emotional factors that can decrease sexual desire:  Psychological, emotional factors that most commonly hit the brake pedal: anxiety. When we are anxious, our mind is scanning the environment for threat. We are worried that there is some sort of threat out there that we have to deal with and that makes it very difficult to relax. And relaxation is mandatory in order to be willing to be sexual and to have good sexual function. So, if you are anxious, that is going to be huge on the brake pedal. If you are feeling depressed, depression is difficulty feeling joy, difficulty having motivation. If those are difficult for you, it is going to be difficult to want to be sexual and to be willing to be sexual.  Poor body image. If you are not feeling sexy, it is hard to want to be sexual. History of sexual abuse or trauma. Distraction: if you want to be sexual with your partner but you can hear the kids in the other room, there is not much privacy, that distraction is going to make it difficult to want to be sexual. And substance abuse.

12:44  Factors that can cause relationship discord with your partner:  Now, most common factors that hit the brake pedal for relationships: discord. If you don't like your partner, [you] probably don't want to have sex with him. No emotional intimacy. Remember, we talked about it in that circular sexual response cycle. Emotional intimacy is really important for your response cycle to continue. Partner dysfunction: we actually know that if your partner is having sexual dysfunction, then you are more likely to experience sexual dysfunction. That really hits the brake pedal.  Inadequate stimulation. Perhaps your partner doesn't know what buttons to push so it is not the most enjoyable sexual experience. You are not getting adequate stimulation. And lack of privacy: again, if you are worried that someone is going to come in the room, if you can hear the kids in the other room, it is going to make it difficult to want to be sexual.

13:29  Social and cultural factors that can affect sexual desire:  Social cultural influences, most common social cultural factors that hit that brake pedal: limited sex education, conflict with religious, personal or family values, societal taboos. Let me give me an example of that. I have talked to a number of women who say ‘I couldn't possibly initiate sex. Women aren't supposed to initiate sex’. So some past messages that women are supposed to be a certain way or not supposed to be a certain way sexually, those can hit that brake pedal.

13:55  Create a list of what is causing problems with your sexual desire:  Now, hopefully, as I have been going through this list, you have been thinking in your mind: ‘which of these are hitting my brake pedal’. What I would ask you to do -you don't have to do it right now but you can do it when you get home if you want to- is to basically write out the Biopsychosocial Model on a piece of paper just like this. So you are going to draw four columns. We have got the biological, psychological,  relationship, and life stuff, just kind of that catch-all for those social cultural factors. So, take a piece of paper, write out these four columns. You have got these four headers. And jot down in each of these columns all the different things that are hitting your brake pedal.  So you may have a piece of paper that looks like this. Perhaps you have entered menopause as a result of the radiation that you are on and you are having hot flashes and night sweats and having difficulty sleeping. You are not too happy with your body image, maybe because of menopause and weight gain and you are having some discord with your partner and you are stressed out because you are caring for your elderly parent. So this may be what is on your sheet. And then you ask yourself: ‘of all these things that are hitting my brake pedal, what can I do with these? Is there any way that I can remove any of these or change some of these so they put less weight on the brake?’

The main reason to do this is to try to figure out what ingredients need to be in place, what has to be removed or changed or tweaked off that brake pedal in order to maximize your willingness desire because, more than likely, for most of you, your willingness desire is your main desire. So how do you maximize it? What ingredients need to be in place?  If you want to learn more about this, this is a must read. This book is called ‘Come As You Are’ by Emily Nagoski. It talks about the brake pedal, the gas pedal. It walks you through identifying what is potentially hitting your brake pedal. Read it, read it with your partner if you have a partner. This is a great book that addresses exactly what we just talked about here.

15:56  Sexual desire:  summary:  Take Home Points when it comes to low sexual desire. Remember, two types of desire, spontaneous and willingness, both are equally important. But with hormonal changes, with the treatments you are on, willingness may become your predominant desire. In order to maximize your willingness, figure out what ingredients need to be in place.

16:17  Causes of sexual pain after a stem cell transplant:  Now we are going to talk about sexual pain, the second most common sexual health concern after transplant. Sexual pain, two things that will cause it after transplant. There may be other things but these are the two main things. One, genital graft versus host disease, GVHD. And two, treatment-induced menopause which causes something called genitourinary syndrome of menopause, GSM. So lots of G's. GVHD, GSM. We are going to talk about these two.

16:44  Genital graft-versus-host disease (GVHD) can cause sexual pain after a stem cell transplant:  GVHD, genital graft-versus-host disease. So let me ask you all a question. What percentage of women after transplant do you think develop genital graft versus host disease? Is it 5 to 10 percent? Is it 10 to 20 percent? Is it 40 to 60? What would you all say? Yell it out. 50%. Anybody else?  29 to 49!  Oh my gosh, how did you know that? You are exactly right. Twenty nine to 49 percent of women have genital GVHD. That is a high number. If you have non genital GVHD, you are likely to have genital GVHD. Most women develop genital GVHD by seven months after transplant, but 25% develop it up to nine years after transplant. So you may not have it up to seven months after transplant but you need to keep  going to your gynecologist and having this addressed.  I am having this assessed to make sure that, if it is there, they are treating it.

So, what is genital GVHD? I know there are some talks on GVHD, but I will just give you a brief breakdown of what genital GVHD is. If you are not sexual you may be asymptomatic, you may not know you have it. So it is easier to identify it if you are sexually active, but vaginal dryness is a common symptom. Sexual pain. You are having discharge. Decreased elasticity in the vaginal canal. So typically the vagina is elastic. And with genital GVHD you lose that elasticity. Adhesions and scarring and vaginal stenosis. So basically, vaginal stenosis is when the vagina closes up because of those adhesions and scarring.  It is really important that, again, you get checked out by your gynecologist to see if you are developing any symptoms of genital GVHD because the sooner you treat it, the better the outcome.

18:38  Treatment-induced menopause can cause sexual pain after a stem cell transplant:  Now let's talk about treatment-induced menopause. Again, two common factors that are going to cause pain after transplant. One is genital GVHD, and the other is treatment-induced menopause. So, treatment-induced menopause, perhaps caused by surgery, chemotherapy — but that's going to impact your ovarian function, total body radiation — which will impact your ovarian function.

Treatment-induced menopause is particularly nasty compared to naturally induced menopause because when your menopause is induced, it is a sudden onset versus natural menopause. With  natural menopause, you have had five years for those hormones to fluctuate in your body and your body to get used to that decline in hormones. But with treatment-induced menopause, this sudden onset, your body doesn't have the opportunity to get used to it. Boom, it just happens. So you experience more severe symptoms because your body doesn't get a chance to get used to it. And it may not entirely respond to hormone treatment versus naturally induced menopause.

19:36  Treatment-induced menopause after a stem cell transplant causes a loss of estrogen:  Treatment-induced menopause: what happens is, you no longer have that estrogen in your body, there is a major decline of estrogen in your body. And estrogen is actually really, really important to our bodies. It is critical in preserving vaginal sensation, vaginal lubrication, preventing sexual pain, promoting sexual arousal. So essentially, the easiest way for me to describe it is, throughout our whole body we have tons of estrogen receptors. And when those receptors are being fed with estrogen, lots of stuff is really healthy.

20:06  How loss of estrogen affects the genitals:  Now, if we specifically talk about the genitals, tons of estrogen receptors in our genitals, and when our genitals are being fed with estrogen, our genitals are moist and plump. We have good vaginal elasticity. So that vaginal canal is like a rubber band. That estrogen actually helps facilitate blood flow to the genitals. When you think about what is sexual arousal, sexual arousal is a blood flow to the genitals. So that estrogen is helping bring blood flow to the genitals, you are going to have better sexual arousal. And if you are getting good blood flow to your genitals, that means you are going to have better genital sensation, because then that part of your body where you are getting good blood flow, that part of your body is going to have better sensation. So, lots of great things that estrogen does specifically in the genitals. 

Now, if those estrogen receptors are not being fed with estrogen because you have treatment-induced menopause, those estrogen receptors essentially dry out. So that moistness, that plumpness, that vaginal lubrication, that elasticity, that all goes away. You have less blood flow going to your genitals which means it is more difficult to get sexually aroused and you have less vaginal sensation, genital sensation. So estrogen is extremely important when it comes to sexual function, especially general function.

Without estrogen, about half of women experience genitourinary syndrome or menopause, GSM. GSM is all those things where you have vaginal dryness, where you lose that elasticity, pain with sexual activity, decline in genital sensation. About half of women experience this.

21:34  Recommendations for managing painful sex:  If you are having painful sex, perhaps because of genital GVHD or maybe because of GSM and treatment-induced menopause, I have three recommendations for you.

21:46: Continuing to have painful sex reinforces the connection in your mind between pain and sex:  Recommendation number one: Stop! Stop having painful sex and I will tell you why. I am going to tell you why it is really important to not continue to have painful sex.

 Every time you have painful sex, you are strengthening the connection between pain and sex. Just think about this. Every time you have sex and there is pain, sex and pain get connected. They connect in your mind because when you even think about sex, what is the first thing you think about? Pain. ‘This is going to hurt’.  And then they get connected in your muscles because your mind says ‘oh my gosh, this is going to hurt’. What do you think happens to the muscles in your pelvic floor? They tense and they tighten up because they are prepared for pain. And then you attempt sex and it hurts and your mind goes: ‘I knew it, it actually hurts worse than I thought it hurts’. And then you are just repeating this loop of connecting pain and sex. If you are continuing to have painful sex, you are just strengthening this connection between pain and sex. That is why I say ‘Stop!’ Stop strengthening that connection. When this connection continues to get stronger and stronger, what typically happens is something called an avoidant to sexual dynamic.

This is the most common dynamic I see with couples after transplant or after cancer treatment. And avoidant dynamic goes like this: you say ‘oh my gosh, I don't want to have sex, this hurts’. And your partner says ‘oh, well, I don't want to force you to have sex. I don't want to do anything to you that is painful. So let's not’. So then both people are saying: ‘we are not going to have sex’. And this avoidant dynamic has this really detrimental ripple effect.  So on the first part, no sex is happening. And then the ripple after that is that non sexual physical intimacy starts to decline. So maybe you think: ‘I really want to go up and hug and kiss my partner but I do not want my partner to think I am initiating sex’. And your partner things like: ‘I really want to go over and hug and kiss her but I don't want her to think I am pressuring her for sex’. So that non sexual physical intimacy, that hugging, cuddling, starts to decline. And then over time, there is one more ripple that is very detrimental. The emotional connection between the couple starts to decline. And this is when couples come into my office and say: ‘We feel like we are just roommates’.  So, this is the most common dynamic I see. If you are continuing to have painful sex, you are probably working yourself toward that avoidant dynamic. We will talk towards the end of this talk about how you deal with that.

Step one: If you are having painful sex, I highly encourage you to stop, stop having painful sex.

Step two: Think about if there are any over the counter options which could help alleviate the pain. Perhaps there are some simple solutions to alleviate the pain. Let me give you some suggestions.

24:18:  Over-the-counter moisturizers that may help relieve painful sex:  Moisturizers might be able to help. So, moisturizers are what I call face cream for your vagina. Just like you may wake up in the morning and you have got this routine of I put on my Oil of Olay® or I put on my particular face cream and you do it every day, that is the same thing with moisturizers. They are something that you put on the vulva and vagina multiple times per week and the cumulative effect of putting them on, the repeat effect of putting them on, is what traps moisture into the vulva and vagina.

So moisturizers are something that you put into your routine and you do them at least three times a week, it just becomes a part of your routine. So that can trap moisture in the vulva and vagina and that can be very helpful for alleviating pain. A couple different types of moisturizers: Replens®, Hyalo Gyn®. Replens® can be irritating to some women. Hyalo Gyn® is my favorite but you have to buy it online so it is a little more annoying to get, but it has shown to be quite effective with cancer survivors in particular.

25:08  Lubricants, which are different than moisturizers, can help with sexual pain after a stem cell transplant:  Lubricants are different than moisturizers. Again, moisturizers are something you put in your daily routine and the cumulative effect is what makes them beneficial. But lubricants are as needed in the moment for friction reduction. This in the moment. Many different types of lubricants but I am going to talk about the two most common and give you a little bit of background on them.

25:29  Using water-based lubricants after a stem cell transplant:  Water-based lubricants. Water-based lubricants are great. Their base is in water. Most people really like water-based lubricants. There are no contraindications for having them.  The only annoying part of water-based lubricants is that -because they are based in water- they evaporate pretty quickly. So if you are using a water-based lubricant, you are going to have to put it on frequently, perhaps multiple times during a sexual encounter. What you can do is take a little glass of water, put it on a nightstand. If you notice the lubricants are starting to evaporate, dip your fingers in that water, touch the lubricant and it will reactivate that water-based lubricant.

26:04  Using silicone-based lubricants after a stem cell transplant:  Second type of lubricant is a silicone-based lubricant. Women really like silicone-based lubricants because they are silicone based and they last a lot longer. This is something you probably will not have to reapply. But there are some annoying things about a silicone-based lubricant. One, if you have a male partner who has any sort of erectile difficulties, it is going to make it more difficult for him to keep his erection because a silicone lubricant is so slippery. So there is really a loss of friction. Two, if you use any sort of sexual device, let's say a vibrator that is made of silicone, that silicone vibrator and that silicone lubricant, they will interact and you might ruin your silicone vibrator. So there is something about the interaction between the two silicones that could ruin your sexual device.  Three, silicone lubricant stains. So if you get it on the sheets, it is going to stay in your sheets. But the benefit of it, it is very long lasting, it brings a lot of friction reduction and it is really good in water. So if you would like to be sexual like in the shower, it is really helpful.

27:07  If moisturizers and lubricants don’t help with sexual pain after a stem cell transplant, consider non-penetrative sex: Step one: Stop. Step two: Are there over the counter options that can alleviate that pain? If there are not, if you are trying these over the counter options and you are finding that they are not alleviating pain, consider developing a non-penetrative sexual menu. Non-penetrative sex, sexual activity that does not involve penetration, in which penetration is probably the thing that is causing the pain. So can you develop a sexual menu that has nothing to do with that particular sexual activity that is painful?  What I will do with the clients that I work with is, I actually have created a sexual menu of all different non-penetrative sexual activities. It is double sided. And so, I will see a couple, I will give them the menu, they each get a menu and I will say: ‘Go in your separate corners and complete this menu’. At the top of the menu is a rating scale. One, I would love to do this activity. Five, no way. They rate their willingness to engage in all the different activities. Then the couple comes together, they compare their ratings. Everything they rated really highly, that is their new sexual menu.

28:02  Web site, mojoupgrade.com, provides menu of non-penetrative sex options:  Because you don't have access to the menu that I've created, this is a great website, mojoupgrade.com. It is an online menu.

Now, it is not just non-penetrative sexual activities, it is lots of different stuff. You can actually decide what you get on the website, how adventurous you want to be. You can choose like really adventurous but not so much. But it gives you a whole list of different sexual activities. You log in, your partner logs in, you both indicate your willingness to do these different things and then it gives you a printout of just the things you both agreed on being interested in doing. So that can help you develop a new sexual menu.

So step one, stop. Step two, are there some over the counter options to alleviate the pain? If not, consider having a different sexual menu, a non-penetrative sexual menu.

28:45  Prescription options for sexual pain after a stem cell transplant:  And step three is talk to your doctor about some prescription options. There are prescription options, there are medical treatments for both of these issues genital genital GVHD and GSM. So treatment of genital GVHD, a topical corticosteroid, prophylactic dilator use, so a dilator could be acrylic or could be silicone. It's a phallic shape. You insert it into the vagina and it can help reduce the likelihood of your vagina having that vaginal stenosis. So you can keep the vagina open and you do it twice a week to avoid the stenosis and the adhesions.

And then a routine gynecological exam, really important. Like I said, for some women, they are developing this nine years after transplant. So make sure you are seeing your gynecologist.

29:28  Vaginal estrogen can help treat menopausal symptoms and pain with sex after a stem cell transplant:  Treatment of genitourinary syndrome or menopause: vaginal estrogen is the most effective treatment. It can increase that blood flow to the pelvis. It can increase the lubrication, the elasticity, it increases that sensation. Basically everything we talked about: the dryness, the loss of elasticity, moistness, plumpness. It reduces all of that, because now you are feeding those estrogen receptors, you are giving them estrogen back. You have got a bunch of options for vaginal estrogen: there are creams, there are rings, there are tablets. Talk to your doctor, your gynecologist, your oncologist about what options might be good for you.

30:06  Summary of presentation on sexual pain after transplant:  What is the take home for sexual pain? Two main causes after transplant for sexual pain: genital GVHD and GSM. Stop having sex is step one. Two, are there any over the counter options? If not, consider a different sexual menu. And step three, talk to your physician about prescription options because there are medical treatments.

30:27  Male model of sexual relationships is often different than the female model:  Last part of the talk, we are going to talk about the sexual relationship. A few important things here. We have talked about this circular sexual response cycle. For most of you, this is the cycle that is going to fit you when you think about your sexual response. But this may look different than the cycle of your partner. So whether your partner is male, does not have, has not undergone transplant, doesn't have any chronic health concerns, your partner may have a different sexual response cycle. And let me describe the cycle that your partner probably has.

This is called the linear model. A lot more simplistic than the circular model. Here is how this goes: It starts with desire: ‘I want to have sex’ and then it goes to arousal. So ‘now I am physiologically aroused’, reaches orgasm and then, resolution phase. Again, pretty simple: ‘I want to have sex, my body is aroused, reach orgasm, resolution’. Which is a lot different than, we'll go back to this one, than this one. This does not start with ‘I want to have sex’. I mean, it might. Let's say you just happen to have that spontaneous sexual drive. But for most of you, this is not going to be your main drive. Your drive is going to be that willingness. So, you are not just going to randomly think: ‘yeah, I want to have sex right now’. Instead, your body has to get kick-started first, which is different, perhaps, from where your partner is at, where your partner is just straight up saying kind of ‘want to have sex right now’. So these are different cycles. One is not better than the other, one is not right or wrong, they are just different. And so, if you and your partner have different cycles, it is important to recognize those differences and figure out how to navigate them.

32:00  Talk with your partner about differences in the ways you initiate and respond to sex:  So your sexual response may differ from your partner's and your partner may not understand this, may not understand that your response cycle differs, may not understand this concept of willingness desire. So talk with your partner about willingness desire and about the ingredients that need to be in place to maximize your willingness, and that emotional intimacy is one of those key ingredients. Talk to your partner about the fact that your cycle is probably kick-started with arousal, where your partner's cycle may just kick-start with spontaneous desire. Again, different. You may say: ‘That's great and lovely, but we have been in an avoidant dynamic. I have no idea how to initiate this conversation with my partner because we are avoiding sex’. If you are in an avoidant dynamic with your partner, let's talk about how to avoid the avoidant dynamic or how to get out of it if you are in it.

32:48  Sensate focused exercises:  Sensate focused exercises. This is my absolute best suggestion, this is what I do with couples that I work with to break or get rid of this avoidant dynamic. And let me tell you what sensate focused exercises are.  They were developed in the 1960s by Masters and Johnson. We still use them today in sex therapy. Masters and Johnson were sex researchers in the 60s. So here are the basics. These are generally touching exercises. So in a private space for 20 to 30 minutes, you and your partner engage in full body touch. You are nude to whatever extent feels comfortable. No sexual activity is allowed. These are just touching exercises.

Why do you think that's important? Why do you think it's important that there's no sexual activity allowed in these touching exercises? Yell it out there.  Yes, manages that expectation. If you think in your mind: ‘oh my gosh, this is going to lead to sex and sex hurts’, or ‘I don't really have much desire to do this’, you are probably not going to want to even do the sensate focused exercises. So all that pressure that this has to lead to sex, or this has to be penetration, or your body has to respond a certain way, we get rid of all that pressure. This is just touching. And the whole purpose here is let's get rid of that avoidant dynamic with a non-pressured activity that just gets you to touching again. So no sexual activity allowed. You do this every 48 to 72 hours to maintain momentum. And there are about 10 phases and each phase builds off each other. So I'm going to describe to the first phase.

Phase one is no touching of breast, chest or genitals. Those traditionally erogenous zones are off limits because, again, we are really trying to set these exercises up, not as sexual exercises, just as touching exercises. So, if these more traditional erogenous zones are off limits, that means that your partner has to touch the entire rest of your body, right? There is more to you than just those erogenous zones. In between your toes, behind your ears, behind your knees, right? The whole body gets touched. Again, no sex, I can't say this enough.

You are not talking during these exercises, you are just touching. Full body touching and you take turns. So let's say you decided we're going to set aside 30 minutes to do this sensate focused exercise. That means for 15 minutes your partner's touching you all over, then your partner says switch and then for 15 minutes you touch your partner all over. So you take turns touching. And you use your hands and fingers only. I have some clients that I work with that try to get crafty and they are like: ‘Can we touch with our tongues?’ No, this is just hands and fingers only.

Your whole job while you are doing the sensate focused exercise is to focus on sensations. That is why these are called sensate focused exercises. Focus on sensations and three sensations in particular. So imagine you are being touched or you are touching your partner and you are focused on temperature (Is this warm? is it cool?) as you touch your partner. Pressure: Is this firm? Is this soft? Texture: Is this rough? Is this smooth? TPT: temperature, pressure, texture. Those are the three things you are focused on as you are touching and as you are being touched. And the reason for these three sensations is they are vivid. They can really immediately capture your attention and they are reliable. Temperature, pressure and texture are always there to focus on.

36:10  Will2Love is helpful web site for cancer survivors:  If you are interested in doing this and you are like: ‘I don't know how to get this started’ or ‘I think we might need the help of someone’, Will to Love is a phenomenal website. Will to Love does a few different things. It is a website specifically created for cancer survivors and sexual health and fertility. One, it has a great self-help module where you can learn all about how do you negotiate this with your partner, how do you communicate through this. And two, it provides telehealth. I'm a little bit biased because I do telehealth for Will2Love. So you can actually talk to an expert and have a telehealth session with them with you and your partner. So Will2Love.com.

36:45  Summary of presentation on sexual relationships:  What is the take home for the sexual relationship? You and your partner's sexual responses may differ. Your sexual response may need sexual arousal as a kick-start. Emotional intimacy is likely a necessary ingredient for your sexual response. If you are in an avoidant dynamic, consider sensate focused exercises. And if you need additional assistance or want to work with someone who is an expert in this, potentially think about telehealth with Will2Love.com.

37:14  Take home messages:  Transplant does not take away your sexuality. Maximize your willingness desire by getting those right ingredients in place and share these with your partner. If you are having painful sex, stop. Try moisturizers, try lubricants. Perhaps create a non-penetrative sexual menu and then talk to your doctor about the treatment options for genital GVHD and GSM. And if you are in an avoidant dynamic, consider sensate focused exercises or perhaps telehealth or some additional help at Will2Love.com. Thank you very much.

Now, we have time for questions if anyone has questions.

37:56  Question from audience about estrogen and blood clots:  You said that estrogen is one of the things that could be used. What is its history of blood clots?

38:04  Dr. Rullo:  Even if estrogen is contra-indicated, ask your doctor about localized estrogen to the vagina: If estrogen is contraindicated, I still want you to talk to your doctor. And the reason is, there are two different ways you can get estrogen. One is systemically. So you take a pill, you put on a patch, and it goes through your entire body. But the other way is what I mentioned, just local. So you are just getting estrogen right there to the vulva and vagina. And what we have with research, what research says currently is that local estrogen that just goes right to the vulva and vagina is not in any meaningful way systematically absorbed throughout the rest of the body. So oftentimes women who are told by the doctors you can't be on estrogen, you actually can be just on this local estrogen. Again, just to the vulva and vagina. But I'd want you to talk to your oncologist, your physician and make sure that you would be okay for that. There is a possibility you could be.

38:48  Audience comment about E-ring:  Well, a doctor did put me on the E ring and I ended up with a blood clot six months later.

38:52  Dr. Rullo:  Options if you can’t even take localized estrogen:  Oh, so even that localized estrogen. That is a bummer because that is the most effective treatment if you have any sort of vulvar, vaginal discomfort or pain. So then really what you are left with are the moisturizers and the lubricants. And I would highly recommend that Hyalo Gyn®, you have to get it online, but the Hyalo Gyn®, and then making sure you have a lubricant. And with a lubricant, it is kind of trial and error to figure out how much lubricant you need in that moment. You don't want too much or it's like a slip and slide. But you don't want to little because you want it to be effective. With the lubricant you want to put it on yourself or have your partner put it on you, your vulva, vagina, and you put it on your partner. So both of you get a dollop of lubricant and maybe something that you continually apply throughout sexual activity, but you got to kind of experiment together with it.

39:36  Audience question about talking to doctor about needing estrogen:  How do you talk to your doctor about needing estrogen? It's been a while but they said I didn't need it.

Dr. Rullo:  Question is, how do you talk to your doctor about needing estrogen? If you are experiencing any of these symptoms, it sounds like you are needing estrogen. So I would just be really clear with your doctor. ‘Look, I'm experiencing these things’. And if your doctor says: ‘No, not touching it with a 10-foot pole, not touching estrogen, go get a second opinion’. Good question.

40:09  Audience question about how to know if you have GVHD or menopause:  How do you know for sure what is GVHD and what is the quick menopause? How do you know for sure the difference?

Dr. Rullo:  That is a great question. I do not know that answer. I would say ask someone with a medical degree on that one, that is a great question. There is a lot of overlap in the symptoms but they are treated much differently.

40:28  More discussion about finding a doctor who knows how to deal with sexual problems after a stem cell transplant:  I would just second what you said if your doctor that you originally didn't have [experience with sexual problems] — find somebody else that does or ask your transplant team to recommend an OBGYN that deals with it. I had that same experience where the doctor just said: ‘All women in their 40s go through this, you are perimenopausal’, even after he knew I went through transplant. I tried to give him a chance but it was time to find somebody else. I am glad I did because, of course, first thing she did was checked my hormone levels and I had no estrogen. So hormone replacement was a good option for me and it has helped a lot.

Dr. Rullo:  That's a really good point. Unfortunately, so many healthcare providers are too embarrassed or don't ask the question because they don't know what to do. They do not talk to you all about sexual health and it is their responsibility to do so. And if you get up the gumption to ask your provider about sexual health, so often I hear a provider, I hear clients come to me and say: ‘I brought it up to my doc and my doc said 'that's not my thing' or 'it's not a big deal' or 'it'll go away’ because they don't know what to do or they are uncomfortable. So, it is like ‘I got up all the nerve to ask and I got shut down!’  So, get a second opinion. So many healthcare providers out there do not get training in this so they don't know what to do. So ask around. If they say: ‘I don't know what to do’ or they try to dismiss you, say ‘you got to find me someone who does this, find me a specialist’. It is their job to find you someone who specializes in this. Isswsh.org,

The International Society for Women's Sexual Health, I think it's I-S-S-W-S-H, isswsh.org has a whole list of sexual medicine providers that work with women who are familiar, who know how to do this stuff, who are experts and specialists in this stuff. So that is a great place to find a physician or a medical provider.

42:20  Audience question about pelvic physical therapy:  I didn't hear you speak on this, maybe I missed it. Have you heard, or do you recommend vaginal physical therapy?

Dr. Rullo:  Yes. I didn't talk about it but that's extremely important. So there is physical therapy, pelvic physical therapy, is that what you're referring to, pelvic physical therapy?

Audience:   Yes.

Dr. Rullo:   So this is fascinating. When I was at Mayo, I worked with a team of pelvic physical therapists. I didn't even know before I went to Mayo that it existed. There are physical therapists where their specialty is that pelvic floor. There are over 30 muscles alone just in that pelvic floor. So, if you have had some sexual pain —  remember we talked about how that connection between pain and sex can get strengthened. — so when you even think about sex, the first thing you think about is pain and then that basically tells your muscles to do, what? Clench up. 

So it can get to the point that if you have had sexual pain for so long, that you have basically trained your muscles to be what is called hypertonic. So you've trained those muscles to just be constantly clenching. And when that happens, just like when any muscle on your body is not working well, you got to go to a physical therapist, and they teach you ways to treat those muscles.

The pelvic floor physical therapist will actually teach you ways to relax your pelvic floor. A few things that they will teach you:  they will teach you diaphragmatic breathing, that is a really great way to learn to relax the pelvic floor. They will teach you restorative yoga exercises. Not like the typical yoga you see where someone's like this. Restorative yoga. If you Google it, you will basically look at images of people, it looks like they are napping. But the physical therapist will show you a position to land that will help stretch and relax those muscles and you will have wedges and pillows, so you can stay in that position for at least 90 seconds. So it is just yoga poses that help you relax those muscles.  And then you may actually have to do dilators as well. We talked a little bit about dilators. So a dilator inserted into the vagina that helps those vaginal learn to relax around an object. Yes.

Audience comment:  I did that. I did the therapy.

Dr. Rullo:  You did pelvic floor physical therapy?

Audience comment:  First thing they do is see just how tightened your muscles are.

Dr. Rullo:  They’ve got to do an exam.

Audience:   Yes. You know those EKGs, they put them not on your private area but around it. In between your thigh and your private area. And they ask you to clench. What happens is chemo, rape, and women who had sex later in life, like in their late 20s and stuff, first time sex with them, it will tighten up that vaginal  wall. And so anyway, they put these on you to see how tight you are and you can see the graph of how you can't hold it. If you are normal, you don't have any of that, you should be able to hold it way up high on the graph. But what you see, and you find out a lot about yourself, is that as she still saying, ‘hold it, hold it, hold it’, your graph's going down because your vaginal walls are so tight, they are not responding. 

So she did a massage, and a lot of women are not ready for this, but you got to open your mind up if you want to open your heart up and stuff. She actually massages your vaginal walls. And you relax and what she is doing — as she is massaging- she is adding the blood flow, the blood starts flowing. Then the next time you come back, you get that like the EKG hook up. You can see the difference. You will actually be able to see the difference.

And then there is a tool that this company makes, they only make it for this reason and that is for you to go home and massage your vaginal wall. And the more you massage it and the more you will get blood to it, the more it will start responding.  Like you said on there, where some women felt, all of a sudden, ‘I feel like ‘I want to have sex’. Well, you might be looking at TV and something sexy comes on and your body's responding. And if you have had cancer and stuff, you are like, you know, ‘yeah, it's working’. And actually you get your life back. It was easier for me but I didn't have a lot of the GVHD things. So I know it isn't for everybody but if that could be for you, try it! Don't shy away from it. This is all about you. Not that partner, you. Yeah, it's about you first, then it's about that partner.

Dr. Rullo:  So glad you shared that. When you think about pelvic floor physical therapy, a couple different things. If you are potentially interested in it, best place to find a pelvic floor physical therapist, APTA, apta.org and the other website is Herman & Wallace [hermanwallace.com]. Those are the two web sites where you can locate and search for a pelvic floor physical therapist. Often they are called just women's health physical therapists. You don't just want to see any old physical therapist. A lot of physical therapists have been trained to treat incontinence and they will teach you to do kegels, which is a strengthening exercise. But if you have a pelvic floor that is already really tight, that is the last thing you want to do. You do not need to strengthen, you need to relax. So you want someone who specializes in this because, if not, they may just say do some kegels, and that is actually going to make it worse.

Second thing you mentioned, they do kind of an assessment. So pelvic floor physical therapists will take one or two fingers inside the vagina and they are going to push on, and they are going to palpate, the entire pelvic floor. And then they are really going to assess what parts of these muscles (there are over 30 muscles on the pelvic floor) are really tight, what parts of these muscles are not as tight. So they are going to assess that, and that is how they determine what exercises or what restorative yoga poses they are going to recommend. So again, they are assessing.

The tool you mentioned, it may be the crystal wand.  So crystal wand could be plastic or glass. You are recommending to get the plastic. So crystal wand, kind of just looks like a wand. It has a little divot in it. But essentially, it goes inside the vagina. Your pelvic physical therapist will show you what is called trigger points. So just like when you sit at your computer maybe and after a while you're like: ‘oh, I got this knot in my back up here’, and then you got to push on it and kind of work on it. We get knots in our pelvic floor. Pelvic floor physical therapists call those trigger points. So that crystal wand is a wand you put inside the vagina. You can use it to push and massage those trigger points and then you are massaging or relaxing and getting blood flow and getting those trigger points outside of your pelvic floor.

Audience comment:  Stay away from 12 o'clock and six o'clock.

Dr. Rullo:  She is saying stay away from 12 o'clock and six o'clock. So they'll tell you where to put the wand on your pelvic floor and what to massage based on a clock. So you need to massage here at 12 o'clock, you need to massage here at six o'clock. For you, 12 and 6 maybe a no go, for other people... So, the moral of the story is you don't want to upset anything in the vulva, vagina and pelvic floor. So make sure you get very specific instructions from your pelvic floor physical therapist about  where you need to touch and massage and what you need to address. Thanks for bringing that up.

50:02  Audience question re: Mona Lisa laser treatment:  Have you ever heard of the Mona Lisa?

Dr. Rullo:  I have heard of the Mona Lisa. So there are vaginal laser treatments which actually, you know, you had said earlier, if you can't be on estrogen, what are some options. I didn't mention that. Laser treatments could be an option. So, relatively newer research showing that these lasers — and this is my rudimentary knowledge of how they work — essentially, they make tons of tiny little cuts. So imagine a laser in your vulva and vagina that makes tons of tiny little cuts with the laser and then your vulva and vagina heal and bring more collagen. With that healing comes more collagen which is that elasticity. There is limited research on lasers. I think the longest research study we have thus far is just over 12 weeks. So, after doing the laser, what's the benefit after 12 weeks? And what we are finding is that it is working. Women who can't be on estrogen are finding these lasers are working. They are pretty pricey. You are talking into thousands of dollars to get these laser treatments because insurance doesn't cover them. But if you can't be on estrogen, it actually is an option to take a look at.

Well, it's 11:53, we've got seven more minutes. I'll be here if you have any questions. And thank you all for coming today.

This video is a recording of the workshop conducted at the 2018 Celebrating a Second Chance at Life Survivorship Symposium. It is a 30-minute presentation followed by a 20-minute Q & A session.