Sexual health during breast cancer treatment

Breast cancer treatment can impact your sexual life in many ways. Chemotherapy and hormonal therapies that put you into early menopause have effects on the vagina that make penetration uncomfortable or even painful. Surgery, hair loss, and weight changes affect how you think about your body, and the practical challenges of treatment may get in the way of the time and attention that helps you connect with yourself or a partner.

Living Beyond Breast Cancer CEO Jean Sachs, MSS, MLSP, spoke with sexuality educator Jill McDevitt, PhD, the resident sexologist for pleasure products company CalExotics about ways to maintain a satisfying sexual life during treatment. Dr. Jill speaks about the reasons pleasure and sexuality are important and different approaches, exercises, and tools you can use to manage side effects and continue having a pleasurable sexual life. She includes examples from the Inspire line of sexual wellness and pleasure products by CalExotics; proceeds from those products benefit Living Beyond Breast Cancer.

Where you can find support on sexual issues:

• Dr. Jill’s practice
• American Association of Sexuality Educators, Counselors, and Therapists

Jill McDevitt, PhD

Resident Sexologist, CalExotics
Dr. Jill is a sexologist and sexuality educator, consultant, and coach on a mission to radically improve the way we think about and treat sexuality, ourselves, and each other in the U.S. She believes that sex should be fun, pleasure is good for you, and shame-free expression of our sexuality is a vital part of being human. Dr. Jill serves as resident sexologist for CalExotics, the pleasure products company. Read more. 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer, Living Beyond Breast Cancer

Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.

Jean Sachs (00:01):

Hi, everyone. It's Jean Sachs. I'm the CEO of Living Beyond Breast Cancer. First and foremost, I hope you're all staying well and taking good care of yourself during this challenging time. Today we have an opportunity to hear from Dr. Jill McDevitt. She is a sexologist, she is a coach, a sex educator, a consultant, and also the resident sexologist for CalExotics. And I want you all to know that CalExotics has been an incredible partner of Living Beyond Breast Cancer since 2008. Over that time, they have donated well over $200,000 to support our mission. We're so grateful for them. And they created a line called the Inspire line that has a whole bunch of products that can be beneficial to those who are struggling with sexuality post a breast cancer diagnosis. And every time those products are purchased, a percent of sales goes back to support our mission, which is really incredible.

Welcome, Dr. Jill, and thank you again for taking the time to join us.

Jill McDevitt (01:06):

My pleasure. Happy to be here.

Jean Sachs (01:08):

Maybe we could start [with] if you could just tell us what is a sexologist? Because I think it might be a term not everyone's familiar with

Jill McDevitt (01:16):

Sexology is the scientific study of human sexual behavior. So it looks at what we do as human sexually and why we do it.

I have a bachelor's degree in sexuality, marriage, and family, and a master's in human sexuality education and a PhD in human sexuality. I just studied sexuality for many years and I get to help people in all different kinds of ways, doing education, doing coaching, consulting. I love my job.

Jean Sachs (01:47):

We know when a woman is diagnosed with breast cancer, it is a medical crisis, it's also a financial crisis, but it's also often a crisis of their identity and can impact their intimate relationships, whether their bodies have changed because they've lost a breast or two breasts, or they have a reconstruction that may or may not be what they wanted. Many women are thrown into early menopause, surgically or medically, and they may have gained weight or lost weight and they struggle. So let's start [with]: Tell us why sexual health is important at all stages of life no matter what you're going through.

Jill McDevitt (02:29):

I say that sexuality is something that we do. It's something that we are, and it embodies a part of our humanity and it's a vital part of our humanity, I believe. When anything happens into our lives, it affects that, it ripples our sexuality and vice versa.

When we're talking about something as impactful as a cancer diagnosis and the changes you mentioned with treatments or losing breasts and things of that nature, it can be a shock and a major disruption to the sexual piece, as well as a human. The way one relates to themselves, the way they relate to a partner, the way they experience their bodies as sexual beings in the world and their gender and how gender shows up, pleasure in their body, all of these pieces come together. To even have this conversation and to acknowledge that these are valid questions and concerns that people might be having about their sexuality and how it's impacted is really important.

Jean Sachs (03:31):

We know breast cancer treatment impacts your hormonal status. You may be experiencing more vaginal dryness, you may be experiencing new pains. What are some of the things could use both for vaginal lubricants or starting to get reconnected with sensations.

Jill McDevitt (03:55):

There's a few things here to address. One is a mindset piece, and that is looking at sexuality and sexual activity through a broader scope. If there are certain things that are no longer accessible sexually, or no longer pleasurable sexually, that can be an opportunity to be curious and to explore new and different ways to experience pleasure if penetration feels really painful, or if there's a certain sex act that feels triggering, or a part of the body that doesn't feel sexual anymore, or what have you, that there can be new and different ways, that sexuality isn't a box that just means A to B and B to C, we can make up our own ways that feel good to us.

So one is getting out of mindset change that there's not really a deficit, there's just a change as far as what sexuality looks like.

With that said, if doing certain sex acts is really important and is something that you really want to explore, to do — for example, penetration of some kind — but that's painful, this is where the CalExotics’ Inspire line comes in to help bridge some of these gaps, to develop the changes.

For instance, one product is the five-piece dilator set. The dilators are designed to help with the elastic changes in the vagina that can take place with treatment. And so here's what they look like. So it's just a skinny little silicone, and lubricated, it would go into the vagina. I have Margot the vulva puppet here to help demonstrate. If you put in and then kind of do circular rotations over time, this is going to help maintain the ability to have penetration. Once that feels comfortable, then you can increase. It comes with a set of five, so you can keep gradually helping the muscles and the elastic skin get more and more comfortable with bigger pieces. This can help significantly with the vaginal pain from penetration that cannot occur. That's one example.

Jean Sachs (06:10):

Dr. Jill, just because I know for some of our people, they might not have ever thought about a dilator. I know what they are. They're really a tool for you to use on your own, right. It's not so much a sex toy or it's not really a vibrator, but it is something to open up the vaginal wall, so eventually you could have penetration if that's what you're looking to do, right?

Jill McDevitt (06:36):

Yeah, it's kind of a preparation tool to help, not only maintain the elasticity that already exists, but to expand its capacity so that, in the future, penetration can be easier. And also things like gynecological exams and things of that nature can also be easier.

Jean Sachs (06:58):

Along with that, a lot of us have heard about the importance of your pelvic floor muscles. It's always an interesting phrase to me, like public, pelvic floor, where is that? And I know that some people call it your core muscles. Tell us about the Kegel exercises. Some people, they think they're doing it right, but they may not be actually doing it right?

Jill McDevitt (07:24):

Great. Yes. Great question. It's all true. The pelvic floor is … a great way to explain it — because the, the scientific word for it is like 19 letters long, I can barely pronounce it’s pubococcygeus muscles I think I might be saying it right or wrong — let's call it the pelvic floor. It's fine.

It's the band of muscles that connect the front to the back to the pubic bone to the tailbone, and then there's this way. It's kind of like a little hammock and it supports all the organs, the intestines and all those things, it holds up. It also is something that impacts the way that we feel sexually, so it's the sensations that happen. With a stronger pelvic floor, the sensations are more easily felt. So it's a health as well as a pleasure component, sexually.

One way to strengthen them, because they tend to become looser over time, because gravity but also it is impacted by losing plasticity and atrophy of muscles as well. So a Kegel exercise is a way to work out those muscles, if you will. And the way they're done correctly is to clench and release the muscle that you would use if you had urinate really bad, but you had to hold it and you have to squeeze.

The key is, and I think people may have heard that kind of analogy before, but the key is the second piece is the relaxing. It's a two-step muscle. Just like I'm thinking about a bicep with a dumbbell, right. If you lifted it and then just kind of held it there, you would strain the muscle, versus the release and the contraction and the release of the contraction. So that's the, that's the two pieces: the clenching of the pelvic floor muscle and then the relaxing of the pelvic floor muscles. That is one complete exercise.

And just like doing our muscles or any other type of physical exercise, it's repetition, and it is time. It's giving yourself the space to not do one of these and think you're going to have bulking biceps, same idea with the pelvic floor. You can do those on your own, just like I described, or again the Inspire line by CalExotics has little vagina dumbbells. There's little weights called Kegel exercisers, and they're little, weighted ball-like pieces that are inserted, and then you gotta clench to hold them in and then release. And so it helps you along and builds a resistance as well.

Jean Sachs (09:57):

And that is helpful to continue to do throughout your life, right? This is something that should just be a regular practice?

Jill McDevitt (10:08):

Yeah. It's something I recommend as a thing to do for vaginal health in general and sexual health in general.

Jean Sachs (10:14):

Is there anything else in that line you want to share with us? I know you might have a vibrator or something else, or to tell us about?

Jill McDevitt (10:22):

There is the vibrator, it's the flickering, intimate arousal and it's not scary, right? It's cute. It's pink. And what I like about it is that it's very ergonomic. You see it fits in the hand very naturally. It makes it very accessible. And then this piece at the end, we'll go over the clitoris. And there's a little flickering kind of piece there that will be like a tongue almost.

So going back to our friend Margo the vulva puppet here so you would just kind of hold it over the clitoris like this, and it has multiple speeds with a button here. And so this is something you can use with yourself to explore pleasure, to give yourself something joyful in this world that can center something positive and connecting back to the body. It's also something that can be used with a partner.

Jean Sachs (11:15):

If someone has never used any of these products, something that they just never thought about how can you help people feel comfortable? Just trying something new, you might not like it, but you might, right?

Jill McDevitt (11:25):

You might. What I like to say is that at first, this feels scary because we're culturally not taught that sexuality and sexual health and sexual pleasure is a valid thing to pursue or to care about. So to go out and search for and find and use tools that will improve your sexual experience is a little counterintuitive in our culture. Saying like, “Oh, this is outside of my comfort zone.” Of course it is because that's how we were raised!

But sexuality is really important and you deserve to feel good in your body and feel good with your partner. I think even the fact that you're watching this video is already a step. And in gaining that comfort it doesn't have to be like “oohoo!”  You can be okay with being a little nervous and meeting yourself, being a little self-compassionate, that's where you are and take it to your comfort.

There's places to purchase online. If that's more comfortable for you, CalExotics website offers all of these and ships directly to your door. If you're concerned about asking questions or things like that in an in-person setting, that's an option as well. Then there's people like me in the world that if you do have questions, you can ask.

So lots of opportunities and resources to find the products in a way that feels safe and comfortable for you.

Jean Sachs (13:00):

Right. That's helpful. And I do think these products come in unmarked boxes, they don't scream out sex toys. and keep in mind some of your most family-friendly retailers, from Walmart to other places, sell these products. So there there's many ways to get them. And while CalExotics has a line we think works well, if someone is looking, are there certain things they should be looking for or any recommendations that you have?

Jill McDevitt (13:34):

I think being reputable is really important. There's a lot of things out there that are made of materials that aren't very vagina friendly or so there's certain things that you want to really make sure it's a reputable manufacturer to reputable retailer, that it's an original product that the company stands behind the products — CalExotics offers one-year warranties on the products.

Silicone is a better material than some of the other materials because it's nonporous. So it makes it easier not only to keep the lubricant that you want to use in place, but it's not porous, so it doesn't get bacteria and things like in the material. It's just a more hygienic nicer experience with silicone.

Jean Sachs (14:24)

So that brings up two other questions. I have. One is for many women who have hormone receptor-positive breast cancer, they can't use any kind of lubricant that has anything estrogenic. So looking for recommendations on that. And also, how do you clean and care for these products?

Jill McDevitt (14:34):

Great question. So the products: Silicones, again, are easier to clean because there's no little microscopic holes, so they can just be either rinsed with a warm water or use with a specialized toy cleaner, it usually comes in a spray. You can just spray them down and wipe it down. They're super easy to clean.

As far as the lubricant, the silicone lubricants tend to, again just like silicone material, are not absorbed. They kind of stay slick on the skin. If you put something water based on your skin and you rub it, eventually it will dry into the pores of your skin. Silicone molecules are larger than skin pores, so they stay slick on the surface of the skin until you wipe it off. So that might be an option. There are organic lubricants as well. And you can always ask a manufacturer to be more specific about the ingredients, but they're all listed. It's like food and they will show what's in it, so you can make an informed decision.

Jean Sachs (15:50):

That's great. These are really good ideas. If anyone is interested in trying to use some of these products, that might be helpful.

On the higher level Dr. Jill, I know you're based in California. If someone is looking for a therapist or a coach or someone to help them with some of their sexual issues, what would be the place to find someone who has the right credentials?

Jill McDevitt (16:14):

There's a few organizations that certify people in my field aasect.org is the American Association of Sexuality, Educators, Counselors, and Therapists. They have a directory that you can search by area. Same thing with the [World] Association of Sex Coaches. And I also work with people all over the country because I do everything by phone and by an app, which I've done even before the pandemic. So luckily I was able to fit right into this new model of how we work with clients. So that's a resource as well, but those two organizations can find you someone maybe in your area.

Jean Sachs (17:00):

That's really helpful. And we will make sure to link all the resources on our website so people can find them.

We know a lot of sort of intimacy and sexuality is also just how you feel about yourself. Your brain is such a big part of this, and also your skin is your largest organ. And sometimes we forget to connect, to discover other parts of your body. I just think for our audience who might be struggling with body image issues, self-esteem issues, if there's just a few takeaway messages you want to give them about feeling better about themselves and trying to reclaim this part of their life.

Jill McDevitt (17:41):

I think sometimes when we're facing something really huge, we look at this big thing and it is so overwhelming. I don't even know where to start kind of feeling. What I like to remind people of is the fact that you’re even hearing this conversation right now is already moving forward. Like you're already past the start line, you've already started taking actionable steps to make these positive changes in your sexual life and your intimate life. Just by the fact that you're here. It can feel overwhelming, but you've already taken the first few steps. And I think that that can feel really powerful and really motivating.

I think also my framework for folks is there's not a problem to fix, it's an obstacle to outgrow, and that can feel very different. If people want to call someone like me or one of my colleagues to get some one-on-one coaching or some help, and if they're feeling like, “Well, this means I'm broken,” or “What does it say about me that I need to call a sexologist,”  and it can feel like I'm really negative.

And I look at it like, how can we grow your experience so that you're kind of overstepping these problems? So these are in your past and you've outgrown them? And that feels really positive to people. I think my takeaway message here is this is hard stuff, but you're doing it and you're already doing it and is something that can be really successful and happy for you in the end.

Jean Sachs (19:18):

Thank you. This is a lot of really great information. And we know whenever we cover the topic of intimacy and sexuality, it is among our most popular topics. So you are not alone if you are struggling with these issues. Please know there's a lot of resources, which is great. Thank you so much for joining us.

We encourage everybody to stay in touch with Living Beyond Breast Cancer. We have closed Facebook pages, just log on to LBBC.ORG and we will connect you with those pages. You can connect directly with other women who've been diagnosed with breast cancer and have real time support. Thank you so much for listening and take good care.