Enhancing Intimacy and Sexual Well-Being for Couples after Transplant and CAR T-cell Therapy

Transcript:

(00:02): Marsha Seligman:  Introduction.  Welcome to the Workshop, Enhancing Intimacy and Sexual Well-Being for Couples After Transplant and CAR T-Cell Therapy. My name is Marsha Seligman and I will be your moderator for this workshop.

(00:13): Today's presentation is a conversation with Dr. Catalina Lawsin and Loriana Hernandez-Aldama. Dr. Lawsin is a licensed psychologist specializing in sexual health, intimacy, and relationships, with over 20 years of experience helping couples rediscover connection in the face of complex health challenges. She specializes in psycho-oncology and has dedicated her career to supporting patients and their loved ones through the unique emotional and relational shifts brought on by cancer treatments, including stem cell transplantation and CAR T-cell therapy.

(00:51): Loriana Hernandez-Aldama is an Emmy award-winning journalist, news anchor, and two-time cancer survivor. Please join me in welcoming Dr. Lawsin and Ms. Hernandez-Aldama.

(01:13): Loriana Hernandez: Overview of Talk. Welcome to a special BMT InfoNet podcast. I'm Loriana Hernandez-Aldama. I'm a two-time cancer survivor, a journalist, and a global advocate. I am thrilled to bring you this interview today for a topic that simply doesn't get enough attention, intimacy after cancer.

(01:29): There's no better person to talk to about this than Dr. Catalina Lawsin, a renowned psychologist and sexual health expert known as the Intimacy Doc. Together, we are going to explore this very deeply personal topic, an often unspoken challenge that is facing survivors and caregivers because one, we want you to know that you are not alone, and two, we want you to know that help is available. Let's get started.
 

(01:54): Dr. Lawsin, thank you so much for joining us. I've been wanting to have this conversation for such a long time because survivors reach out to me about this topic and we're all struggling in different ways. The treatment rooms prepare us. We know hair loss is coming. We know nausea is coming, as well as fatigue, and maybe neuropathy, but nobody says, ‘Hey, intimacy after cancer is going to suck. It's going to be very difficult.’ I hate to be Debbie Downer here, but it's not easy and no one is prepared. I think the preparation part is what is so stressful. How do we cope and what do we do? Tell me more about this. Tell me I'm not alone. Tell me my survivor friends aren't alone and that we're okay.

(02:35): Dr. Catalina Lawsin:  Many cancer survivors experience sexual changes and impacts on physical sex and emotional intimacy. You're not alone. We know that anywhere between 40 to 100 percent of cancer survivors are going to experience sexual changes, so much so that I think we need to focus on how cancer impacts intimacy. 

Intimacy isn't just physical sex. It is emotional intimacy. It is connection in the relationship. All of that gets challenged as cancer survivors try to figure out their connection to their body, how they see themselves, and how they see themselves in a relationship. 

Meanwhile, partners witnessed cancer patients go through this long journey while being their caregiver. I think it's unfair to expect that experience not to shift how they're going to feel connected in the relationship thereafter. 

(03:37): Couples often feel they cannot talk to each other about intimacy after cancer treatment. Too often, partners don't have a space to even talk about that shift. So many cancer survivors say, ‘I wish my partner felt like they could talk to me.’ I'm excited for us today to really talk about intimacy in the relationship and how couples together can cope with the changes that happen after treatment.

(03:54): Loriana Hernandez:  Changing from patient/caregiver to wife and husband roles can be difficult. You hit on every single issue because this is your topic of expertise. When talking about couples, I know I have shared and I have friends who have shared, that their partners are quickly thrown into caregiver/patient modem - perhaps my husband is packing my breast wound after my breast cancer diagnosis or he's bathing me during my leukemia battle. I can't imagine how difficult it is for a caregiver to suddenly flip a switch and revert to seeing their spouse as sexy. It’s difficult to go from patient and caregiver back to wife and husband. 

As a patient and a survivor, when I look in the mirror, I realize I don't even have my own DNA. I'm in a mind and a body I don't recognize. I don't feel sexy. You have those two dynamics. A lot of people say, ‘depression is because of my cancer.’ But depression can be from the downfall after cancer. Back up to tell me what you're hearing from couples about this shift in dynamics.

(04:56): Dr. Catalina Lawsin:  Intimacy must be actively nurtured and a cancer diagnosis can complicate this process. We know that a cancer diagnosis doesn’t make it easier for couples who go into cancer treatment with relationship distress or relationship concerns. When we talk Intimacy, it’s something that has to be actively fueled and nurtured, particularly in long-term couples who may already have been struggling with it. When you bring in this third component to the relationship - cancer, and I like to think of it as a third component - many couples don't know how to adapt. 

I always tell people to think about a relationship as two people, and sometimes more if you're in polyamorous relationship. Each person in the relationship must be taken care of. When we talk about sex and intimacy, it’s about how the relationship adapts, and how individual needs, wants, and desires (which have likely shifted)  get addressed individually, while supporting each other in the relationship. Even as I say that, there's math to it. 

(06:36): Loriana Hernandez:  There's a lot to unpack here and I want to break it down. You're talking about intimacy versus sex. There's the mental side, but also a physical side others can't appreciate. Survivors might say to you, ‘I can flip the switch and fake it till I make it. I can say that I feel sexy or that I feel better about myself, even though medication removes sex drive, or chemo caused menopause.’ But physically, internally, a patient doesn’t feel the same because they're not the same.

(07:13): Dr. Catalina Lawsin:  One of the physical things you mentioned is that many cancer survivors of both genders lose sexual desire. You have what we call mismatched libido. It is very common in all couples. While there are special considerations for individuals impacted by cancer, it's also important to normalize mismatched libido whether for cancer, menopause, or any other injury. We must adapt our relationships and our sexuality as we evolve. Cancer is just one of those parties to which we didn't want an invitation.

(08:11): Loriana Hernandez:  There's also guilt. As part of a couple and as a spouse, if I lose my desire, I still want to be intimate because I want to please my husband and have a healthy relationship.  You feel guilty about all those years you couldn't be intimate because your body changed and you feel different. You put them through hell, but they stood by your side. Not everyone stands by your side, so I'll be very clear about that, too. You have the guilt about whether you feel good or not, or whether you feel like you should. There are seasons of life, but there are also seasons of guilt.

(08:52): Dr. Catalina Lawsin: You're pointing out guilt, resentment, and frustration, very common emotions that are going to lead to disconnection. When we talk about sex and we talk about physicality, so much emphasis is placed on, ‘Oh, try this.' Even when we talk about hormone replacement to boost desire, we know that desire and connection should be one. The body must be approached somatically, so it is taught how to reconnect with desire to begin the process of exploring what stimulates it. 

 But your body must feel safe to do so, which means the relationship has to feel safe and secure. 

The way we want to start approaching relationship re-building is, one, by acknowledging the guilt and the emotions in the room, which is not easy. Most people will say communication is key. Most people are actually very good communicators, except when they don't want to hurt their partner or they think their partner might leave them based on what they say..

(10:06): When there's something at risk and it's personal, that's when it's hard. But emotions can't be nurtured if they're not even given space in the room. One of the things that ends up happening is we pathologize the patient because they're the one who had cancer. They're the one who's broken. While it's objectively true that the patient had cancer, when we pathologize one person in a relationship as the problem, we’re never going to get anywhere - all that's going to lead to is disconnection. Instead of looking at it that way, patients should be allowed to feel guilty, while also not taking responsibility for why the disconnection happened.

(11:04): Loriana Hernandez: So what would you say as a survivor?

(11:08): Dr. Catalina Lawsin:  Survivors need to express how their physical and emotional changes may make intimacy difficult, unappealing, or painful. I don't feel any connection with my body. I don't feel any sensation. I know I want to and I just don't. I don't have that gumption. Nothing is stimulating me. Nothing's interesting to me right now. I don't feel sexy. I don't feel close. I feel tight. Do you notice one thing I'm doing over and over and over?
 

(11:39): Loriana Hernandez:  Yes, because you don't want to put the blame on them. There's the emotional aspect. Mentally, I and other patients could still maybe get in the mood despite the medication. But, it's the different internal, physiological changes that you hear about from patients. 

Sex is like a razor. The chemo has removed all lubrication. Physical intimacy is just painful. If it's painful, the patient’s partner doesn't want to hurt them because they’re thinking about the caregiver/patient relationship.  I may hurt him or hurt her. These are the conversations that people come to me about in my role as an advocate, saying, ‘We need to talk about this.’

(12:25): Recently, I had a survivor, a friend of mine who was on my hall when I went through leukemia, call me and say, "I told my husband, just go cheat on me because I just feel like I'm never going to make him happy sexually." My heart broke. Personally, I would never say that to my husband. Everyone has their own dynamics. What made me sad is that she felt like she wasn't good enough after cancer. It made me want to cry.  I don't judge how people handle physical intimacy post-cancer. There's no rule book about it. We're turning to you to give us a rule book about how we navigate this journey.

(13:10): Dr. Catalina Lawsin:  I appreciate that you're saying every couple gets to decide what are the rules and boundaries in their relationship. I believe rules are meant to restrict, while boundaries are meant to provide guidance and support. 

I've worked with several couples on adjusting and opening their relationships, remembering that intimacy isn't just physical. One of the things that oftentimes happens, particularly with women, is that when they experience physical pain, sexual pain, particularly upon penetration, they become re-traumatized with every occurrence. The trauma gets worse and worse and worse, which is why they end up with an aversion to the experience.

(14:02): Loriana Hernandez:  At that point, you feel like a failure because you feel like you've let them down over and over again. Then, the whole mood is gone.

(14:15): Dr. Catalina Lawsin:  There are all those pressures, all those norms. There are a lot, particularly when we're talking about heterosexual couples. There are so many norms about how a woman is supposed to be available. To be fair, women’s sexual pleasure hasn't been part of the norms. I'm saying that realistically because on average, cancer patients are in their late fifties.

Given that, it's acknowledging the difficulty of how we begin to negotiate this situation. It has to start with acknowledging where we are at. I think that's one of the hardest things for patients to acknowledge is, one, I do feel guilt. But, I also don't want to have sex, and don't know if I ever will. 

(15:10): To be clear, I want everybody to know there is no right amount of sex to have. There's no, ‘Get 12 grams per day of semen.’ There's nothing like that. There isn't. So, even when we talk about low desire, it's not as if we have this desire barometer. Desire is relative to the partner. That's it.

(15:37): Loriana Hernandez:  As you said, it's not just sex, although some men or some people may roll their eyes. There's the intimacy, the handholding, and just the physical touch, snuggling, all of that. One would hope that there are steps to take. As I've shared with my husband, "I feel like when I went through my bone marrow transplant, my DNA wasn't even the same. Then, I went through breast cancer, I felt like I looked in the mirror, and said, "Who the hell are you because I don't look like me. I don't feel like me”. I even told my husband, "We should get married again because I want you to remarry version 2.0. The first version you married isn't here anymore. I don't even have her DNA. Let's just get remarried." I couldn't fit into my dress after all the steroids, anyway, it just turned into a joke after that.

(16:34): Transplant survivors may not even feel like the person they have always been, also making intimacy difficult. There is so much truth to not feeling like who you are. One thing you pointed out when we talked is that you need to first be at peace with yourself, which is very hard. Another thing you talked about is feeling at peace with your body - you yourself, alone.

(16:53): Dr. Catalina Lawsin:  Yes, I always say self-pleasure is the best pleasure, and that doesn’t just mean masturbation. A great example is when breast cancer survivors reacquaint themselves with their breasts. Throughout our entire lives, up until when we pass, there's a focus on our breasts. There's so much pressure around that focus. The reality is, so many women experience zero sensation in their breasts post breast-cancer. 

(17:26): Loriana Hernandez: This can happen when they lose their breasts. I lost mine, as many do. Then  it’s like, ‘Okay, now what?’

(17:34): Dr. Catalina Lawsin:  Much of what we know is that it's not necessarily the what, it's the how. It's not necessarily what you're doing with your body, it is how you are experiencing the sensations. 

We always want to start externally and concretely - what feels good, when we touch different parts of ourselves, staying away from the genitals. We want to start this process on our own and then with our partners, where we explore what sensations we experience. Once you just say, okay, this is what I'm feeling, then you lean towards what's truly pleasurable. I always encourage both patients individually and then as a couple to stay away from the genitals. They’re little land masses on our bodies. Our bodies have so many others sensors.

(18:40): You talked about how people miss holding hands, miss cuddling. Much of that is because there's this perception that if I start but I don't get to intercourse, then I'm not going to start at all. That's why couples end up sleeping on opposite sides of the bed and not being as intimate because there's either a fear of rejection or a fear of pressure. If I start, it must go straight to intercourse. 

When we are reacquainting individually and then as a couple, we want to take the pressure off sex. I don't care if it seems counterintuitive. If you haven't had penetrative intercourse for a long time, you're not messing up that party anyways. Take the pressure off and build up trust individually. When we talk about vaginal dilators for women...

(19:35): Loriana Hernandez:  I was just going to bring that up.

(19:36): Dr. Catalina Lawsin: For women and for men, all of those are rehabilitative tools. But, I don't want people to think of them as chisels and tools - because literally, that's what people start thinking about with dilators: ’Oh, we're stretching.’ Instead, think of them as a tool that we can move at our pace, to feel how our body is reacting, and begin to build back our relationship with our body, knowing how do we want it to be touched. 

(20:10): Loriana Hernandez: So, you are good with saying to a woman, get dilators?

(20:16): Dr. Catalina Lawsin: Yes. Generally, you want to do it after your body is fully healed, so at least four or five months after radiation or after primary or secondary treatment. But again, that can be daunting for a lot of women, particularly a lot of women who haven't played with many sex toys. Most women haven't. It can be very intimidating.  But it also can be very empowering. 

On my website, I have a lot of resources. I have educational videos for patients that I've created for studies on vaginal dilators, penile pumps, penile injections, for all these tools that we know. There's so much research showing they help. 

I think that the big thing couples need to remember is that it is not a linear process. It's very common to make some progress, then have something happen and just go forward and backward, so be patient. This is a journey. Just like penetrative intercourse shouldn't be the goal, orgasm shouldn't be the goal. The goals should be focusing on the ride. Ultimately, how we experience something is regardless of the physicality. Our body is just the vessel through which we are experiencing something.

(21:53): Loriana Hernandez: I want to add to that I did speak to somebody else on another podcast who said to get vaginal suppositories. There's a brand out there that does not raise hormone levels. It's  coconut oil-based that helps with dryness from chemo. I want you to explain the physiological effects of chemo, so patients know it is not their fault, that chemo does have bodily impact.  It dries up the skin on your face, for instance. Can you break that down so patients don’t have guilt that they’ve brought these side effects upon themselves when the drugs caused them.

(22:25): Dr. Catalina Lawsin: Yes. I hate the term vaginal atrophy that we use when the vagina narrows, shrinks, shortens, and dries in women and patients who I've seen.  We know that that dryness can lead to chafing so much so that it hurts to walk. Unfortunately, vaginal dryness is a reality that so few women feel that they can talk about but is something with which a lot of women will still have penetrative intercourse - because of that pressure to do so. 

The biggest recommendation I can give is to acknowledge it's not your fault. Our bodies are not broken. We are mortal and they are going to constantly change. We are benefiting, particularly in oncology, from advancements in medicine.  There are miracles every day. Honor that we are trying to fight what is natural. The treatments for cancer can also hurt our bodies.

(23:51): Take care of our bodies to support ourselves. In taking that care, have compassion for ourselves. You can use lubricants or if you're using any type of hormonal aids regularly, the administration of them offers opportunities to feel your body. Use these strategies to not only give something to your body or for lubrication, but also as tools to measure how the applications make you feel. How is my body welcoming them? How do I want it to welcome them?

(24:37): Loriana Hernandez:  There are several reasons why issues of sexual intimacy are rarely discussed with oncologists. But, here's my question, to back up, why aren’t these issues discussed with an oncologist?

(24:47): Dr. Catalina Lawsin:  When we talk about transplant and CAR-T, in particular, these are very intense and prolonged treatments. Many patients feel so lucky to have survived them that they question, why they would bring up their sex lives. They think, ‘I'm alive; I should be grateful for what I have.’

On the provider side, there is embarrassment and assumptions based on personal biases about whether sex is important to this patient - particularly if this person is from a marginalized group, their sexuality is indeterminate, their relationship status is unknown, or their age is a factor. On top of it, physicians don't like to ask questions that they can't answer or for which they can’t provide a referral. So, what you see is this disconnect. 

It is shocking that gynecologists, particularly, are not trained to address sexual concerns. Yet, who are we supposed to go to? Urologists are going to give a pill for men as the number one remedy. If there is distress, a pill is just not going to work. The distress should be supported. 

Oftentimes, you have this silent divide between patients and providers because of all their assumptions, all the things we just talked about. On top of it, the patient isn't getting support from their provider and they're also not getting support at home. The partner has no one to talk to. They think they are being a jerk, no matter their gender, because they're not being supportive. 

(26:28): You have all these factors, and what they end up leading to is silence - that's why the answer is to have conversations. So much of what I teach clinicians is literally how my research showed that one question opens the conversation – ‘how sexually satisfied are you?’ We found that this question covers relationships, sexual satisfaction, overall quality of life, distress, and physical functioning. It was such a key indicator of overall well-being. When sex is part of the conversation, you normalize the statement, ‘You can talk to me about anything.’

(27:09): Loriana Hernandez: What does that say? If sexual health makes everything better, then we need sexual health and we need to work on this issue.

(27:18): Dr. Catalina Lawsin: We know that sexual satisfaction is associated with frequency, but it's not the highest correlate to frequency. We know that sexual satisfaction is about the quality of connection. Plenty of asexual individuals feel sexually satisfied because there is not a right number. It's about focusing on how someone feels sexually connected to their bodies. I believe that our sexuality, our sexual energy, is our life force. 

(28:08): Loriana Hernandez: I can't share all the conversations I've had with my husband because he might freak out. But I remember being frustrated with him when it wasn’t happening the first time and saying, "You have no idea what I've been through.” He responded, "Oh, yeah, okay. I only slept at your side for an entire year. I took care of you. I bathed you. I did all of this. So yes, I know what you've been through. I see you're hurting and I don't want you to be in pain because you've already been through enough pain." Then I was wondering about our marriage. We had to go through counseling and work every day at changing the dynamic from patient/caregiver to wife/husband.

(28:52): Dr. Catalina Lawsin: What I encourage is not to think that memories necessarily must have separate identities. They are parts of ourselves. The caregiver role that your husband played is a part of him. When we think about all these different parts of ourselves, it's not that one part should be let go. I hate that phrase, ‘let it go.’ Instead, integrate. Maybe that caregiver part doesn't have to come out as frequently. Maybe that Playboy part wants to come out more. Who knows? But there's all these parts of ourselves that all need to be nurtured. 

Sometimes that caregiver, that protector, side comes out more because it needs to. What are the other parts of ourselves that can say, ‘Hey, I get it. You're trying to protect. You're trying to do good. Hold on. I'm here now, too. I'm going to sit with you until you're ready and then I can take over.’ The playboy part can come out. All these different parts can be honored.

(29:59): Loriana Hernandez: As we wrap up, do you have one or two takeaways? I can tell you what I think your takeaways are and then you can tell me if I'm wrong. I feel like the number one takeaway would be to communicate, to say, ‘Here's how I'm feeling.’ 

Open the door for your spouse because if there were communication issues in a relationship before a cancer diagnosis, they will be magnified afterwards. Have a conversation about how both of you are feeling. Do you feel angry or resentful that I have cancer? Do you feel this? Tell the other person, ‘here's where I want to go.’ Communication seems to be your number one takeaway.

(30:35): Dr. Catalina Lawsin:  Communication is key. But I think it's very important to appreciate that the reason people don't communicate is because they don't feel safe enough to do so. This is why I tell people, ‘Just try saying this.’

It’s different if I tell a doctor, ‘Try saying this,’ because they've had lots of communication skills training. They talk to hundreds of patients all the time. They've got lots of practice.

(31:02): In one relationship, it can be very hard. I want to honor that when people don't feel safe enough in a relationship ( I'm not just talking physical abuse) and they really are worried or not used to having emotional conversations, it's about meeting themselves where they are. 

Don't open the door to talking about sex if you can't even talk openly about not wanting to go to this place for vacation. Start with less threatening things to begin building up trust and safety in your relationship so you can eventually talk about how you feel and assert your needs.

(31:45): When people come for sex therapy, we're not focusing just on sex at the start. We start by

building up the skills in the relationship, the trust, the safety to begin having those more sensitive conversations.

(31:59): Loriana Hernandez: I'll say this, and I would love your insight. I was very blessed that my husband waited for me to open the door and say, "We need counseling. I've learned a lot at these conferences. I'm not the only one. We should go to counseling." We went together. But, if he had said no, I was going to go by myself because I felt like I needed to come to terms with who I am, which is a struggle as it is. I'm not a doctor like you, but if your spouse says they're not going, it's still a good idea if you have access to counseling. It’s a big issue to see a therapist of any kind, first to help you to cope with your cancer recovery - go whether your spouse is going or not. It was helpful that my husband came with me.

(32:51): Dr. Catalina Lawsin; One hundred percent. We know that when one person in a couple goes to therapy, there's relationship change. Oftentimes, inherent in therapy, women are more presenting in therapy. To be fair, women are also the initiators of change in heterosexual relationships so yes, at least one person in the relationship should go to therapy. It does take the dynamic. You can't make anyone change orgasm or love you - always remember that. You can't make anybody do that. But you can change. We can only change ourselves. 

The next thing you know, the relationship dynamic naturally changes. I tell everyone to understand that there's only so much space in a relationship - think of it as a container. When one person is pushing, pushing, pushing, the other person has no choice but to get smaller and pull away. It's honoring that if you don't push so hard, there's more space for the other person to wiggle around. They're going to naturally change. It's about focusing on what you can control, which is only yourself first, then looking at how to nurture the relationship. There are two individuals in the relationship and then the relationship itself. All those parts need to be nurtured.

Loriana Hernandez (34:21): I always say, you must be your own hero. No one's going to do it for you. If your spouse or your friend, your partner, does not want to go to counseling, you go to counseling for yourself to heal what you need to heal. You can be your own hero in this process.

Dr. Catalina Lawsin (34:36):  For this audience and everyone who is listening to this right now, the reason I focus on relationships and sex and the reason I've been studying, researching, and working with cancer patients for over 25 years on this subject revolves around why we are prolonging life. Why are we going through hell and back to prolong our lives if not for the relationships? That's why we're doing all of this. 

It's about remembering why you actually did this. In and of itself, you did not have to. The longer we live, cancer becomes a natural occurrence. It's natural. It makes sense. It's unfortunate. It sucks; but, if you're going to fight through it, then you deserve to have your needs, wants, and desires be exactly what you want. Everyone deserves that.

(35:50): Loriana Hernandez:  Amen to that. On that note, we'll leave it at that. Dr. Lawsin, you've been amazing. I’m working on a book and I know you're working on a book that's going to be coming out. You'll have more on your website. I want to send people to there. Tell us where people can find you, read more about you, and learn some of the strategies that you offer.

Dr. Catalina Lawsin (36:12): You can certainly follow me on socials, on YouTube, TikTok, and Instagram. I'm @theintimacydoc. You can go to my website, theintimacydoc.com, where I have lots of resources. I have different programs, and lots of different educational videos that I've created where patients can learn about this subject, find support, and learn about what questions to ask. If you are looking for additional information, you can reach out to me for support for both individuals and couples. If I can’t support you, then I will help you find somebody who can, including finding gynecologists for pelvic floor health, finding urologists, and working holistically to get your needs, wants, and desires met.

(37:06): Loriana Hernandez: We forgot to get to that. You're right. Okay, so communication, pelvic floor therapists, dilators, vaginal suppositories. This is on your to-do list to research. I don't remember what you said for the male side, but I can recap the women's side because I've heard it before from my doctors.

(37:25): Dr. Catalina Lawsin:  There are all these things, and it's important to remember that these are just tools. They're supporting us in how we connect to our bodies. At the core of it all, our body knows first. Our body is reacting. We want to take somatic approaches to improve our connection with our body -  including how we see ourselves and how we experience ourselves, starting from the outside and coming in. That's why so much of my work is somatic and then also includes a lot of contra.

(38:07): Loriana Hernandez: Thank you so much for joining us. You've been so insightful. I love your energy and that you match my energy. We bring that same level of energy to make a difference. Dr. Catalina, the intimacy doc, has provided some very insightful information and you can find her and everything you need on her website. Thank you.

(38:24): Dr. Catalina Lawsin: Thank you.

Question and Answer Session

(38:30): Marsha Seligman: Thank you Dr. Lawsin and Ms. Hernandez Aldama for this open and honest conversation. We will now begin the question and answer session. The first question:  Would you discuss how to deal with vaginal canal narrowing after too long without penetration?

(38:59): Dr. Catalina Lawsin: That's a great question. I spoke to that a bit in my conversation. You want to begin by starting outside and relaxing your body - learn how with breathing exercises and behavioral exercises that teach you how to relax your body. 

Oftentimes, with vaginal changes, our body tenses up when anticipating that there might be penetration. What women can do is work with a physical therapist who does pelvic floor therapy. I also recommend working with a psychologist or therapist to learn somatic exercises that teach you how to gain control over total body relaxation. You can then combine those learnings with pelvic floor exercises that strengthen the pelvic floor to gain more pelvic control so you can then begin to use dilators. 

As I mentioned in my conversation, use dilators as a tool to reacquaint yourself with your body. Taking time to rebuild that connection with yourself is generally what I recommend. There's been lots of evidence that this approach works. I've trained so many women using this approach, but I also like the addition of working with a PT, as well as a therapist.

(40:43): Marsha Seligman: Where do you suggest starting if you've lost libido of any type since transplant?

(40:54): Dr. Catalina Lawsin:  When we think about desire, it's important to remember that desire can be either spontaneous or responsive. When most people think about desire, they think about spontaneous desire. I want to have sex and bam, my body responds to it. I'm in the mood and I experience arousal. 

After cancer, most individuals at some point or another will experience more responsive desire, which is when our body needs to be in neutral. It needs to be open to sex, to sexual activity. From that open, neutral point, it begins to explore what stimulates the body. That stimulation isn't just physical. It can be emotional. It can be intellectual. 

We know that women can be stimulated emotionally and intellectually up to 24 hours before sexual activity - that helps build arousal. Much of building arousal starts with fostering safety and security in the relationship - having fun, feeling relaxed together so that your body is in a place where it can explore what stimulates you - physically, emotionally, and intellectually to build arousal.

(42:25): Building arousal isn't linear. Oftentimes, I tell patients to try different things. Go into building arousal as an opportunity, particularly if you've been with your partner for a long time. Give yourself the space. The biggest thing is to take the pressure off intercourse, regardless of your gender. If you haven't experienced desire, too often the expectation and pressure for penetrative intercourse for both women and men can be too much of a leap in terms of going from zero sexual activity to penetrative intercourse. 

Focus on relaxing the body, enjoying yourself out of the bedroom, then in the bedroom, and begin to explore what physically stimulates you. Keep the focus away from genitals - just begin to relearn your body and as partners, explore each other’s bodies. In giving and exploring, partners should see a benefit in pleasure for themselves.

(43:42): Marsha Seligman:  Is Replens better to use for vaginal dryness rather than something like Aquaphor?

(43:50): Dr. Catalina Lawsin: Yes, absolutely. I do not recommend any patient use Aquaphor, ever - ever, ever, ever. Too many clinicians are referring Aquaphor to patients. It's not a great product and it's not great to use down there. There are so many different reasons. 

Replens balances the pH levels in the vaginal area, whereas Aquaphor is used for on-the-spot issues. There are so many great lubricants out there, whether you're buying them on Amazon or elsewhere. I recommend going to a sex shop and trying out different ones, whether you like water-based or other types of lubes based on consistency and the feel of them. 

The thing with Replens is that you need to take it regularly. You need to apply it regularly, so compliance can be a concern. As with so many of the strategies that address vaginal dryness, there's a lot to consider. One of the most important things I tell women is to be open to trying lots of different strategies to see what works in terms of commitment, how they want to feel with it, and what works with their lifestyle.

(45:27): Marsha Seligman:  Someone is asking about using testosterone pellets to regain hormonal benefit. They had bad side effects, no blood clots, but bad side effects, so they can't use testosterone pursue that anymore. Are there any other options beside testosterone pellets for hormonal benefit?

(45:46): Dr. Catalina Lawsin: There are many other options. In general, hormonal avenues are seen as a last resort after trying both behavioral and more on-the-spot strategies. I can't stress enough how beneficial it can be for both women and men to improve sexual function by doing somatic exercises. With these somatic exercises, you're going to start by learning different breathing techniques. You're going to focus on inter-reception, which is basically your awareness of your internal perceptions, your internal sensations. When we focus on our internal sensations, that's when our brain experiences pleasure. Working from the inside out, rather than from the outside in, is how we can improve desire.  We can improve potency, as well as improve vaginal control. There are a lot of behavioral somatic strategies that I recommend people do first.

(48:22): Marsha Seligman:  I have a comment before the next question. Somebody wrote in and wanted to thank you for being so honest and straightforward. Their experience with their oncologist wasn't as open and straightforward. Their oncologist had no advice on sex at all. It was as if he was never asked about these questions after chemo or a transplant, so they appreciate your open, honest, and straightforward conversation. 

The next question is: What should someone expect intimacy wise from a husband with prostate cancer?

(49:04): Dr. Catalina Lawsin: With prostate cancer, men can experience erectile dysfunction, difficulties achieving, as well as maintaining an erection, dry ejaculation, changes to the sensation, and difficulties  reaching climax. There's a whole host of things that can change for prostate cancer survivors. For their partners, I think it's important to understand those changes. 

There are many different ways to be physically intimate that don't require penetration. Unfortunately, because the heteronormative model of intimacy puts so much emphasis on penetrative intercourse, there’s a lot of pressure on men. I think that it's important for partners to understand that these side effects exist. I think the dry ejaculate and incontinence are not talked about enough. It's important for prostate cancer survivors to appreciate that when a man ejaculates, it provides pleasure feedback to their partner. When that feedback disappears, there is impact to the partner, as well. 

Honor these changes while also supporting the relationship to explore different alternatives. There's lots of information out there as far as what to expect.  For the majority, it's pretty much guaranteed that there will be some type of sexual change when a man undergoes prostate cancer and treatment - acknowledge that while also being supportive because there are many strategies to improve sexual well-being.

(51:29): Marsha Seligman:  What is happening with my body from a physical perspective when orgasm builds but never completes?

(51:40): Dr. Catalina Lawsin: This is more common with women than it is with men. With men, it increases with age. Orgasm can be learned. Unfortunately, there are a lot of different reasons why some people may or may not come to climax, just as there are several factors that explain why people have multiple orgasms, or internal orgasms - including men. 

There are two sides to the spectrum. I think it's important to normalize that never coming to orgasm is incredibly common for both women and men. Oftentimes, what ends up happening is that there is so much pressure on orgasm and seeing orgasm as the goal, that the body is too tense and tight. It's as if you're driving on the road, you're trying not to hit the middle line, but you end up swerving over it. It's the same thing here where you want to have it, but you're trying too hard. We know that instead of tightening as our arousal builds, our body benefits more from relaxing.

(53:04): In relationships, there's oftentimes pressure because the person who isn't orgasming is frustrated. Then, maybe their partner feels guilty about not pleasing them adequately. This dynamic exacerbates the pressure. 

The number one thing I tell people is that orgasm isn't the goal. It's about the journey. As I said previously, take the pressure off penetrative intercourse and orgasm. Sexual activity can be so much with or without an orgasm. An orgasm is just a marker that sexual norms dictate we have. Otherwise, something's wrong. That's just not the case.

(54:00): Marsha Seligman: The next person is asking about using Estradiol cream. They used it for about two weeks and had frequent hot flashes. They would like your input.

(54:17): Dr. Catalina Lawsin: With the creams and when you're using any type of hormonal therapy, it's important to realize that one to two weeks is often not sufficient. If the hot flashes were extreme, that's an indicator to try something else. 

When it comes to hormonal therapy, there are a lot of options that you can try. It’s important to know that you have to work with a physician, preferably a gynecologist, who has been trained to work with cancer patients, is aware of any contraindications, and is going to give you tailored treatments, i.e., they're going to give you smaller doses at the start, look for side effects, and titrate you up gradually. That’s important. 

My biggest recommendation is to try other things. I recommend patients start behaviorally. Start with psychological, as well as behavioral strategies, to improve desire, which will then improve arousal and pleasure.

(55:42):  Marsha Seligman: This is going to be our last question. Someone asked, "My partner has been my medical caregiver for many years. What are some ways to nurture a more sexual relationship, especially when we have young kids and libido was already a challenge prior to cancer treatment?"

(56:02): Dr. Catalina Lawsin:  I feel like we spoke to this, so definitely go back and listen to more about that. Our identities change throughout our lives. After cancer, many patients talk about how they feel like a patient and their partners feel like caregivers. What I recommend is to integrate those identities into who you are now, rather than saying, ‘I now need to be this sexy god or goddess or this stallion in the bedroom.’ Honor a side of you that you both experienced and figure out how you integrate that identity into how you show up now. 

For some people, it helps to shift things up and explore other parts that they want to show up. Nurture emotions and memories that may come up or get triggered, such as being a caregiver - remember that these emotions are physiological reactions to memories held from the past. Those memories of being a caregiver, the images you have, the emotions you experienced, make sense. It's important to nurture those in the present so that you can choose to be open to exploring different sides of yourself now. 

Everything I'm saying sounds simple, but it isn't always easy. There are many strategies. The biggest thing I want people to take away from this is that the process is not linear. It's not one size fits all. There's rarely a quick and dirty, and it doesn't need to be that way - that's not what we want anyways. This is an opportunity to explore pleasure, to explore your sexuality anew.

(58:12): Marsha Seligman: Closing. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Lawsin and Ms. Hernandez Aldama for this very frank and open conversation about intimacy. And thank you, the audience, for your excellent questions. Please contact BMT InfoNet if we can help you in any way.

(58:32): Dr. Catalina Lawsin: Thank you everybody. Thanks so much for having me.