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Upfront About Breast Cancer Podcast

Episode 35: The Impact of Breast Cancer on Sexual Health: Physical Changes, Lubrication, Pleasure and Libido

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about the impact of breast cancer on sexual health. Sex and intimacy are very personal but important parts of life. Breast cancer and treatment can affect sexual wellbeing and intimacy for each person and their partner in different ways, including experiencing loss of self-esteem due to physical changes to your body.

Joining us for this episode of Upfront is Tess Devèze (they/them). Tess is a clinical occupational therapist (OT) and certified somatic sexologist who works with people living with cancer, chronic illness, and disability to live more pleasurable and sexually healthy lives. Tess was diagnosed with breast cancer three years ago and has personally experienced the severe impacts treatments have on sexuality. Being a member of the LGBTIQ+ community, a sexuality clinician and a cancer survivor has given them the determination to offer support and help to as many as they can around those more ‘intimate’ challenges we face. 

We’ll hear from Tess on their lived and professional experience about the impact of breast cancer treatment on libido, arousal, desire, vaginal changes and sexual intercourse. We also learn about effective ways to restore and enhance intimacy and what options are available to help you manage the impact of treatment on your sexual wellbeing.

RESOURCES:

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Dry July.

Want to get in touch? Visit our website at bcna.org.au, email us at contact@bcna.org.au, or call our Helpline on 1800 500 258.

This podcast was recorded in 2021. 

TRANSCRIPT

KELLY CURTAIN:
Let's be upfront about sexuality and breast cancer. Sex and intimacy are very personal but important parts of life. Breast cancer and its treatment can affect your sexual wellbeing in different ways, from loss of self-esteem due to the physical changes to your body, through to vaginal changes that make sex painful and difficult. Today, on Upfront, we're talking to Tess Deveze. Tess uses the pronouns they/them. Tess is a Clinical Occupational Therapist, and Certified Somatic Sexologist, who works with people living with cancer, chronic illness, and disability, to lead more pleasurable and sexually healthy lives. Tess was diagnosed with breast cancer three years ago and is still undergoing treatment.

Just a reminder that this episode of Upfront About Breast Cancer is an unscripted conversation with our guest. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical option. So please exercise self-care when listening to this podcast, as the content may be triggering or upsetting for some. Tess, welcome to you.

TESS DEVEZE:
Hi Kelly, thanks for having me today. How are you?

KELLY CURTAIN:
Thanks. Yeah, thanks for coming to discuss those taboos. They are like taboos, aren't they?

TESS DEVEZE:
Well, they are. And funnily enough, I just cannot stop talking about them, so I'm very grateful to be here. It's the unspoken thing that so many people suffer in silence about, so I really appreciate this opportunity to help others.

KELLY CURTAIN:
Well, also, the beauty of Upfront, we like to think at BCNA, is it's everything you either forgot to ask or were too embarrassed to ask your health professional, and intimacy and sexual problems during breast cancer treatment, after breast cancer treatment, would have to be high on that list of things that are either too embarrassing or perhaps too shameful to talk about. So, let's do it.

TESS DEVEZE:
Alright. Let's deep dive. Where would you like to start, Kelly?

KELLY CURTAIN:
Well, let's start with say, the physical changes to the intimate parts of the body after having breast cancer treatment, because it's a chemical thing too, isn't it? It changes. It changes everything from thinning of tissues, and sensation, it's a huge topic. So why don't we start with atrophy and pain?

TESS DEVEZE:
Beautiful. So, just quickly. So vaginal atrophy is and also vulva atrophy, so the vulva is the name for all of the genitals that we have. And the vagina is just the internal canal that things like tampons or fingers and toys and penises can go inside of. So you can have atrophy of the vulva and/or the vagina. And that just simply means that the tissues are maybe they're dehydrated or there's changes in your hormones and the tissues are becoming thinner, they're dry.

And essentially, what that can feel like is people use words like 'sandpaper' or 'burning' or 'glass shards'. And so, say if you're having penetrative-style sex and you're using lubricants and it's still uncomfortable, that might be an indication that you do have a form of atrophy. And just quickly, disclaimer, it's OK, because you can just, you can use internal moisturisers and you just need to chat to your treating team. There actually are things that you can do for vaginal atrophy, but you have to ask, that's the thing. Your...

KELLY CURTAIN:
And most don't do, they? Because most suffer in silence.

TESS DEVEZE:
Oh, you know what? I'm the sex therapist, and I suffered in silence. Learn from my mistake. I was at the point where I actually was unable to walk. My vulva atrophy was so bad that underwear and pants and sitting, were so painful. And for some reason, I had it in my head that this was something that was unique to myself, and that it was, I just had to put up with it. And then I hit breaking point. I was actually on my apartment floor crying, and I just went, this is ridiculous. And I reached out to my Booby Buddy. Sorry, my breast care nurse. I call them my Booby Buddies (LAUGHS), my angels, my life saviours. And of course, I got an email back, booked you in with the oncologist, we can totally work on this. I was like, "Oh my God, all of this pain for absolutely nothing. So please know, if you are experiencing vaginal atrophy, there are things that can be done to help. And if you have hormone positive cancer, it's very important you talk to your team because there's just some things that you shouldn't do. So it's really, yeah, it's all about the conversation.

KELLY CURTAIN:
So when you say, 'vaginal atrophy', what are the symptoms of?

TESS DEVEZE:
So, commonly... So, what, the language I see, I have a support group globally, thousands of people with cancer, and the words that they use are, I'm having sex and I'm using so much lube, and it still hurts." It's this burning feeling, it's like a sandpaper feeling, Why is the lube not working? And I think this is a really awesome opportunity for me to say that lubricants are just a liquid that makes two surfaces that are rubbing together slippery, to reduce friction. Whereas... so a lubricant isn't going to heal damaged tissue, but moisturisers do.

So, imagine, just like we moisturise our hands when they're dry, we can actually moisturise our vaginas and the vulva tissues like the labia and the vaginal entrance around that. It's just a case of, so lubricants just make things slippery. So, when you're having penetrative-style sex, it's not going to hurt. But if you are experiencing pain while you're using a lubricant, that would indicate that the lubricant isn't gonna help, you might need an internal moisturiser. And seriously, they're just on the chemist shelf. You just pop it inside you when you're going to bed, let it sit inside you overnight, and it's actually quite and, you know, it's not an easy experience. It's never fun, but it's not as bad as other treatments and medications we have to take, that's for sure.

KELLY CURTIN:
And is that what they're called? 'Vaginal moisturisers'? What are they called?

TESS DEVEZE:
Yeah. 'Vaginal moisturisers' or 'internal moisturisers' I think they're actually on the shelf called 'vaginal moisturisers'. And they're very, very, I think there's two main brands on the chemist shelf, and they're very easy to get without hormones. So if you are worried about, or if you cannot have oestrogen-based things, it's very, very easy to get. And you have some choice.

KELLY CURTAIN:
OK. So, is there anything else that you can do to help repair thinning tissue?

TESS DEVEZE:
This is gonna sound so strange, but walking (LAUGHS). So, blood is everything. Blood is a human... The human body, the way that it heals and recovers, is through blood flow. So when we're exercising, we're actually getting blood flow to the areas of our body, say the muscles and all of the tissues that perhaps, when we're sitting down, you know, when we're not moving, we don't get blood to that area. So I'm talking about the deeper areas of our pelvis. Having a bath gets blood flow, and the muscles relax. Self-pleasure, but I don't mean internal pleasure. I mean, external pleasure.

So, the beautiful thing about a vulva, is that we have this amazingly pleasurable and sensitive part of our genitals called the clitoris. And so we can have extremely arousing and pleasurable experiences through clitoral stimulation, which gets blood flow to the vaginal area and all around it and engorges those tissues. And it is so healthy. It's very rare that you'll find a sexuality, like, therapist or clinician that does not recommend self-pleasure. Blood is everything, and essentially pleasure is about blood flow. And so, you know, I think about how a penis gets erect because of blood flow goes to the penis, our genitals are inside of us, so we can't see. But what happens when we're getting aroused is our genitals also get erect and engorged, but it's internal, so we just can't see that. So it's the exact same system, just kind of, one's inside and one's outside.

KELLY CURTAIN:
So, it has double the benefit.

TESS DEVEZE:
Yes! (LAUGHS). I'm always recommending toys to people. Do you have a bath? OK, you don't have a bath. OK. So, there's this thing called a clitoral vibrator.

(LAUGHS)

People think I'm a little crazy. And also with lubricants, I do want to say, with a vaginal atrophy, water-based lubricant is not the be-all and end-all. When I actually want to put it out there that water-based lubricant is actually not going to help you very much. So you have so many types of lubricants, you have silicone-based lubricants, oil-based lubricants, wax-based lubricants, and you have water-based. Now water-based is just that, that type that you find on the supermarket shelf. K-Y Jelly. Very cheap. I have a saying. I say that lubricant is like an aeroplane ticket, you get what you pay for. A little bit more money on a lubricant, I think is really worth it, because we don't wanna put chemicals inside of us, you know.

So, I recommend organic coconut oil. Honestly, what you would buy for cooking is amazing for vaginal atrophy because it's oil-based. It doesn't get absorbed into the body. Our body is like a sponge, and if we have vaginal atrophy, we're dehydrated. And if we put water-based lubricant inside of us, it just gets (SLURP SOUND) absorbed like a sponge. And then if we are having penetrative-style sex, what will happen is, the lubricant is gone, because our body's absorbed it. And then we have that friction, and we have that rubbing, and it's just going to make the atrophy worse. So using an oil-based lubricant or a silicone-based lubricant is essential, because it lasts longer and it stays slippery longer.

SPEAKER:
BCNA's My Journey online tool is a new resource that gives instant access to trusted and up-to-date information, which is relevant to your breast cancer journey. For more information, visit myjourney.org.au.

TESS DEVEZE:
So, can I say a few brands? I don't have money in these brands, I promise.

KELLY CURTAIN:
(LAUGHS) OK.

TESS DEVEZE:
But Uberlube is amazing. And so is Liquid Silver, an organic coconut oil. Go organic because you don't want to put chemicals inside of you, especially if you're having sensitive tissues, but they're really amazing. Now there are a few people out there in the universe who do experience thrush from organic coconut oil. And a way that you can test that, is if you just put a little bit on your finger and then pop some on your inner thigh or on your altar labia, and just wait five minutes. And if your skin goes maybe a bit pink, or if it feels a bit itchy, that's probably an indication that the oil might not be right for your body. And that's OK, you can just use a silicone lubricant. But if you don't notice any reaction, I'd say you're good to go with the coconut oil, and it's pretty amazing stuff. It has healing properties, too.

KELLY CURTAIN:
Now, not so long ago, there was some thoughts that depending on which type of breast cancer you had, you should stay away from certain types of lubricant. Is, has that view changed?

TESS DEVEZE:
Honestly, I'm really not sure about which lubricants they were saying to stay away from, so unfortunately, I can't comment on that.

KELLY CURTAIN:
So in your opinion, is apart from getting what you pay for, and perhaps staying away from the water-soluble ones, anything, what about scented, flavoured, all that sort of variation?

TESS DEVEZE:
Looking at the ingredients, if it's coloured, if it's flavoured, if it's scented, please don't buy it, because it's got the chemicals in it that, you know, create those flavours, create those colours. You can buy 100% purely organic lubricant, too. And you'll see on the labels, it's, it can be a bit overwhelming, but people will advertise. This is, you know, this is a 'tested safe', you know, 'no chemicals will harm'. They have a lot of warnings on them and also those safety labels. You have reminded me, we have been talking about vaginal atrophy, as a side effect of breast cancer treatments, but there's another big one too, which is for people that have surgeries, the loss of sensation, and the loss of erogenous zones.

KELLY CURTAIN:
And that's clearly very real.

TESS DEVEZE:
It can feel like... So, you know, our breasts are an erogenous zone. It's a pleasure point on our body, and I, I really do help, and I'm experiencing this myself, by the way, I say I'm helping people through blah blah blah, but I'm also helping myself through this, I'm my own sex therapist, but which is not ideal at times, but I have people coming to me and they're so sad. They're like, "I feel like I've lost a part of my sex." I've had a mastectomy, I've lost my nipples. There's no sensitivity. I feel like I can't really get going anymore". And I do want to speak to that because it is loss. It is a loss of a part of ourselves. And firstly, I want to say, please give yourself time to grieve. It's very important that we understand, like, no this is not something that you should just get over.

This is a very, very big deal and it's important to you to have time to process. But I also need you to, give you a glimmer of hope in this, in that pleasure is plastic. Pleasure is like a bicep. You know, we can actually create other erogenous zones. So, we've lost sensation. I'm gonna use 'I' statements. I've lost sensation on my breast. I have no nipple. It's, you know, pointing in that weird different direction than the other one, and it's hard. And, you know, just all of those wonderful things that I, you know, that I have to deal with now. But my breasts were my main erogenous zone. And so now I've completely lost that. But through actual slow-touch practices, and mindfulness, and it's called neuroplasticity, which I'm gonna talk a lot when we get into the topic of libido. But you can create other zones on your body that become hypersensitive and hyper-pleasurable, and kick in an arousal response. So...

KELLY CURTAIN:
What, that weren't before?

TESS DEVEZE:
Yes, yes. So, it's like a bicep so the more, you know, you go to the gym and you work on your bicep and the bicep gets stronger. You can do the exact same thing with your pleasure pathways. It's, but it takes time. Neurologically rewiring your body does take a little bit of time, but it's possible. So I just wanted to give that glimmer of hope for everyone that's lost their chest erogenous pleasure zones, and they're numb, and they feel like they have a loss of their sex. There is hope, you know, so some people, one person now it's her ears and her neck, and they are just, if her partner softly breathes on her neck, she is just, she's there. You know, she's like, "OK, this is amazing. This is better than my breasts. Oh, my god, how did I do this?” And another person, it's their inner thighs and someone else, their lower back and, you know.

So they're like, we have pleasure capacity all over our bodies. And I guess without the breasts, it's an opportunity to find others. And I guess it's not an ideal opportunity, but I do just wanna give that sense of hope that you can still have incredible amounts of pleasure, even if you don't experience sensation on your chest anymore.

KELLY CURTAIN:
OK. So you mentioned the neck, the back.

TESS DEVEZE:
Yes.

KELLY CURTAIN:
And, was it the thigh?

TESS DEVEZE:
Yeah.

KELLY CURTAIN:
And there are some others.

TESS DEVEZE:
Yes. Someone else I know, it's just kissing. She, all of a sudden she just, if she starts to really slowly and softly kiss her partner. That in itself is, really triggers a huge arousal response for her. So all of these things tie back to going quite slowly. Yeah, I'm not sure if you notice that you know it's not, yeah grab the boobs and off we go' kind of thing. It's like, touching the body and having time to relax, and then the brain can relax, and then you get comfortable. And then there's blood flow because your heart rate's down and you're feeling safe, and then all of a sudden, your arousal response kicks-in and you're like, (MOANS SURPRISEDLY) I haven't had that in a while! That's lovely!" So, I think that...

KELLY CURTAIN:
It's not an instant thing, though, clearly.

TESS DEVEZE:
No, but it can be. With practise. It's that bicep, yeah. Pleasure is a bicep, you've got to exercise it.

KELLY CURTAIN:
OK. It's good to know. So I guess just like personal preferences, it's different for everyone, and it's a case of trial and error maybe.

TESS DEVEZE:
It is, and so I always talk about, there's a game I play, called the two-minute game (LAUGHS). I recommend this game to everybody. So for anyone that's listening, who knows me, they're like, Oh God, Tess, the two-minute game again. But I swear by this. You set a timer on your phone for two minutes and you sit across like, you have your partner, or your date, or whoever, and you say, OK, for two minutes, I would like you to softly touch my back. Really softly." That's it. And so you start the timer, and then you do that thing and then the timer goes off, and then you stop.

And then it's the other person's turn to ask for something for two minutes, like, OK, I would like for you to hug me and tell me why you love me for two minutes." And then you go, and then the timer, you start the timer, and then as soon as that timer goes off, you stop and then you switch again. And so what it does is, it's this really incredible, it's kind of like a guilt-free way of saying, I really want to explore my body and I'm not sure what I like." So I'm gonna just explore all these things. But it doesn't matter because even if I don't really enjoy it, the timer is going to go off and I don't have to worry about it going somewhere. There's, you know...

KELLY CURTAIN:
So the rules of engagement are that it doesn't lead to sex. It can only be the two minutes or can you go off? Can you go off?

TESS DEVEZE:
Oh, yeah, there was that one time!

(BOTH LAUGH)

But I think the two minutes is a safety net because when we have 'should brain', or if we, if sex is something that we're not enjoying and if it's something that we feel like we 'should' do, we are not going to enjoy it, and we're not going to want it. So that two-minute timer is, it's an amazing pressure release. It's an anxiety release, and it actually can allow people to really drop into their body and actually help people really understand what their body, their after cancer treatment body does like or does not like. And if you do wanna stop that timer and then have some fun, that is amazing, but never have that as the agreement because you don't want that... Is this going to lead somewhere? It's the sex escalator. Oh you wanna kiss me? But that means then you're gonna wanna touch me and then you gonna wanna touch me. And then that's gonna mean that you're gonna wanna touch my genitals and then it's gonna lead to this.' So...

KELLY CURTAIN:
So it's a safe two minutes.

TESS DEVEZE:
Yeah, yeah. Yeah.

KELLY CURTAIN:
Well, as you just mentioned, sometimes there is that fear, which is... that fear of pain of sex. If you are experiencing that, or just not wanting sex because of, you know, the ordeal that is breast cancer, fatigue, pain, lots of things can affect you both emotionally and your desire, as well as your physical. How do you even begin to get back into that after such, and in varying degrees, such a big overhaul?

TESS DEVEZE:
Desire and... So I call desire and libido the same thing, it's that wanting, it is a complicated beast. And I'm all about the visual analogies, so I apologise for the neurodivergent folks listening who struggle with visual analogies. But imagine that, you know, libido is like an, it's an onion, it's the centre of an onion. And there's these layers around it because there are so many things that impact libido. Libido is the number one thing that gets impacted by cancer treatments, any cancer treatments, any cancer, any gender, because of, and I'll go into these layers.

So you have the physical layer. So that could be things like pain, dryness, fatigue, all the types of pain that there are. Maybe you have, like, hypersensitivity on your skin, maybe you have changes in your weight. There are so many things that impact libido. So, when sex hurts, when we're exhausted, we're not gonna want it. It's just how it works. Another layer is the psychological layer. So then there's the guilt of not wanting sex anymore, the guilt of not having sex anymore, the anxiety around sex because it hurts. The anxiety because you know that you feel like you should. You should be offering your partner thing. By the way, your partner can have sex with themself any time. It's not, you know like there is...

KELLY CURTAIN:
I guess there's also that sort of inner pressure to try and get back to normal, to get back to the way it was, which is not gonna happen, really is it?

TESS DEVEZE:
Well, you can rehabilitate libido. Yeah. But again, so you've got these layers, you got the physical stuff, you've got the psychological stuff, that 'should brain', the pressure, the awkwardness. Cause jeez, it's awkward when there's no sex and we're not taught how to communicate around this. You know, it's a really difficult situation with, for many people. Then there's the neurological layer as well. And that's when I was talking about how pleasure is like a bicep. So I have training, clinical training in neuroscience and I've worked in neurological rehabilitation for stroke and spinal cord injury and sexuality.

So I'm gonna do my best not to go into too much of a nerdy-neuro speak here, but I really do nerd-out. So imagine that... So that bicep. So imagine that your libido is that bicep. And so, when things like 'should brain' and pain and guilt and anxiety, when sex is something that we don't have, so we stop going to the gym, the bicep gets weaker, so our libido gets weaker. Imagine those connections from my genitals to our brain that create pleasure. They get smaller and smaller and from a six-lane highway, they become this little dirt bike track that's got little weeds growing over it, again with the visual analogies, I apologise (LAUGHS). But what...

KELLY CURTIN:
Now it's a feeling.

TESS DEVEZE:
(LAUGHS)

And then, so what we want is, we want that to become a six-lane highway again. But the only way we can do that is, we need to look at those three layers. If we're having sex because we 'should', our brain is going to associate sex as something that is a chore. It isn't...and we don't want stuff we don't like. If you force yourself to eat cake every day, you're not gonna like the cake every day. It's the exact same thing with sex. So what we wanna do is, you need to create positive associations for your brain, in regards to sex. And this is going to sound very strange. But my number one thing is take sex off the table. To get to the sex, you need to remove the sex. I'm saying sex so much.

KELLY CURTAIN:
So, stick to intimacy and other forms.

TESS DEVEZE:
Yeah, you need to build a bridge, so imagine that your goal, like sex is on the other side of a river. You've got to build a bridge, and the bridge needs to be things like managing your pain, managing your fatigue. And then we need to look at body shame, body confidence, understanding sensation, understanding arousal, communicating with your partner, learning how to check in with each other, asking what you would like. And if all you're thinking about is every time you start to connect with your partner in an intimate way and touch in affectionate ways, and if all you're thinking about is “Oh god, is this gonna lead to sex? Do they want this to lead to sex? I don't want this to go to sex”. It's actually not gonna have a neurological benefit at all.

So, strangely enough, I have actually created an online course for couples, because it's a complicated beast, but you can do it over time, and it's all about removing that pressure. And then you kind of, just baby steps. You know, you reconnect with each other intimately. You have touch, you have affection, you kiss for the sake of kissing, and all of these little baby steps. And after a while, people start to realise like, oh, I actually really want you to touch me, can I touch you? I want to touch you. And it's that wanting that you're actually trying to build.

SPEAKER:
Want to connect with other people who understand what you're going through at any time of the day or night? BCNA's online network is available for people at different stages of their breast cancer journey, as well as family and friends. For more information visit bcna.org.au/onlinenetwork.

TESS DEVEZE:
So strangely enough, it's like, it's kind of like rehab for your want.

KELLY CURTAIN:
So the more you have...Yeah. So it's creating, it's like, 'if you don't use it, you lose it' type thing.

TESS DEVEZE:
Yeah, exactly. That is the neuro-plastic motto. 'Use it or lose it.' But I think people interpret that as, use it or lose it, I have to have sex.' But if it hurts, it's actually going to make you want it less and less. And that's gonna unwire your neurological pathways, your pleasure pathways even more. But, so, when, for libido, to exercise your wanting, you have to kind of baby step and go like, "where can I feel safe? Where can I feel comfortable? And what do I enjoy? And how can we start to integrate that into life?" And so with things like, again, the magical word intimacy, not sex, intimacy, affection, connection, like really slowly getting these things in. And remember, if your partner is desperate for sex, they can have sex with themselves any time. It's not about sex, it's about reconnecting because you're not gonna want something that is a source of anguish. And to get rid of that anguish, you kind of have to work together, you know, but there are ways with a little bit of neuroscience.

KELLY CURTAIN:
As you mentioned, there's, obviously you're gonna need some really good communication here because the person who has breast cancer, male or female, or whoever has breast cancer, quite often they might have gone down to the dirt track. But the partner has still got the six-lane highway that they're hoping for. So, what would your recommendation be to start that? Because we are not mind readers. And whilst the person with breast cancer is down on the dirt track, with everything else going on, what are some of the things that you could say to a partner to make them understand, I guess?

TESS DEVEZE:
Listening to this podcast is probably one step.
(BOTH LAUGH)
It's, we are not educated on how to talk about sex, we are not educated on how to talk, full-stop on how to have a vulnerable conversation. How to not get defensive when we're challenged.

KELLY CURTAIN:
And I think that's a really good point, because a partner can easily become, Well, I didn't...it's not that I wanted to have sex", or maybe they're fearful to touch their partner.

TESS DEVEZE:
Fear is huge. Fear of hurting their partner because they have been through so much or fear of touching the scars or the surgery areas. It is huge. And so I'm going, so what I do is with, in this, in my course to rehabilitate libido and desire, is, you know, you take sex off the table and then you practise communicating. But again, what do you know, there's a timer involved and you, clothes on, you actually just touch a part like, pick up your partner's arm and you just slowly touch it, and then you practise communicating, “What's that like for you? What's that speed like? Does this feel nice? Would you, how could you enjoy this more?" You know, little things like that. And then you stop.

And the rule is, if a partner desperately wants to have sex, they can go and have sex with themself. Maybe the, you know, they can have self-pleasure, but you can lie next to them naked, and just be there with them. But it's not about sex between the two of you, because again, to want the thing, you have to want the thing, and you can't want it when you're forcing yourself to have it. And it's uncomfortable.

Things like, you know, this is going to sound overly simple, but it's actually extremely powerful. Having a good night kiss every night. So you just kiss each other goodnight. Could be one peck on the cheek and a word of love, you know, something that you love about each other. Do, you know, integrating little things like intimacy and connection. If you're at the point where you don't know how to, if you have a partner and you're so distant with each other that even that sounds difficult, I really recommend thinking about some form of counselling, who is experienced in cancer treatments. It might just be that you need a third party to help get that conversation flowing. Because again, we're not taught how to talk about our feelings openly.

KELLY CURTAIN:
It's, and like you said, it's so not talked about, and yet just about everybody is going to be affected or their intimacy and sex life affected in some way by cancer treatment. And again, no one talks about it. So, for those that are further down the track, it can be really embarrassing that it sort of got to this.

TESS DEVEZE:
Oh, and of course it has. You've had cancer. It is so hard. No one is good at cancer. That just doesn't exist. And I feel like we put so much pressure on ourselves to do it well, to cope better, Oh no, but these side effects, I shouldn't be so debilitated by this pain and I am struggling. I'm three years in and I'm hating every day. The cognitive dysfunction, the genital pain, the fatigue. I'm still, like, I'm currently again after my treatment, rehabilitating my libido because I'm on endocrine treatments right now. I'm doing the exact same stuff every time, but it's just, you know, it is work. And I think it's funny because yes, I'm a sexuality clinician and I work in, like, libido rehabilitation. But the primary component is communication. Like, I teach really basic, accessible ways for people to check in with each other in a way that's non-shaming where anyone can be hurt. And it's like, "Thank you so much for letting me know, how about we try this instead? How about a hug?

KELLY CURTAIN:
Is that the number one step? Is that the first step, is it A, talk to your partner, and talk to a health professional about it, because you don't have to suffer.

TESS DEVEZE:
Yeah, you really don't.

KELLY CURTAIN:
And, you're not alone.

TESS DEVEZE:
Oh, you're so not alone.

KELLY CURTAIN:
And there's stuff that you can do. There is always something you can do, and it might be different for everybody, but there is something you can do.

TESS DEVEZE:
Yeah. And I think because even though sex sells, we're not supposed to talk about it. You can't have too much, you can't have too little, and it's behind closed doors and it's depicted in movies incorrectly and unrealistically, and don't get me started on porn. It's impossible.

(CROSSTALK)

Like, it's, like we are not a culture that this comes easy, it's easy for me because I'm trained in it, but I, before I became...

KELLY CURTAIN:
And you still had to take a step back and look.

TESS DEVEZE:
Yeah, and my partner also works in sexuality and we... wow, we really worked hard, and if we had to work so hard, this is why I created the online program for couples because I was like, There is no way people can do this by themselves'. Like, we worked so hard. Yeah. You are not alone. There are so many people out there suffering in silence. Your oncologist, your breast care nurse. Find me. There's Facebook support groups where you can even just see other people sharing their experiences and you can know that you're not broken and that you're normal and your body is reacting to treatment. And if you don't want sex, that's normal because you are going through the most stressful experience of your life. Like, cancer is so stressful and stress is the number one thing that impacts desire. The number one thing.

KELLY CURTAIN:
So, as a person with breast cancer and with this expertise, what would be your key top three tips for someone who has, you know, got that big weight of, oh my god, sexuality and intimacy' hanging heavy on their shoulders.

TESS DEVEZE:
Goodness, there's so many. I think the biggest is to reach out and to find support. To know that you're not alone, and to get ideas and brainstorm and learn from others. Peer-based learning is incredible. So, I have a Facebook group of people all over the world with cancer, and they just share their experiences. We give each other advice, and it's an extremely powerful space. And there are a lot of groups out there, mine specifically on cancer and intimacy. But the amount of people that are just so grateful to realise that they're not alone. So find your breast care nurse, Google for support groups. And if you bring the topic up, you will... Someone else will just go, 'oh, thank god, you brought that up. Oh, my god.' Like, everyone's thinking it, no one is saying it. So, reaching out and finding supports.

I think the second thing is, know that you're normal, that what you're experiencing is normal. Your body is reacting, think about, how horrific treatments are. You know, we have body parts removed. Endocrine systems are switched around and changed. We have toxins put into our body. We have radiation on our bodies. It makes sense that we, our arousal responses change. It makes sense that we experience pain and fatigue and try and get rid of that, 'should brain'. I 'should' want sex more. I 'should' be doing this. And I want you to think about your libido and your pleasure. Think of it as something like, 'I've hurt my wrist and I need to rehabilitate my wrist.' Think of your pleasures the exact same way. It takes a little bit of time and a little bit of work, but I promise you it's easier than you think. It's just some basic neuroscience and some touch activities, and you can actually get back what you lost. There is hope. There is hope!

KELLY CURTAIN:
Thank you, Tess, for all those wonderful tips. And like you said, reach out, you're not alone, and you don't have to suffer. And there's no shame either.

TESS DEVEZE:
Yeah. Breast care nurses are the angels of the universe, and if you have, you know, and they know all about the supports and they are just the most incredible people in the world. So please, if you're ever lost, just ask your breast care nurse.

KELLY CURTAIN:
And on our share notes we'll have ways for people to find you and some other great resources to deal with sexuality and intimacy following breast cancer. Thank you, Tess. Thanks for joining us.

This podcast was brought to you with thanks to Dry July, BCNA's My Journey has a range of resources about the impacts on sexual health and well-being related to breast cancer treatment. Sign up and visit myjourney.org.au.

BCNA's online network is also an online peer-to-peer support community where you can connect with others going through a similar experience just like Tess's Facebook Group.

BCNA's Online Network is an online peer-to-peer support community where you can connect with others going through a similar experience. To join, visit the BCNA website.

Thanks for joining us on Upfront today.

I'm Kelly Curtin, it's good to be Upfront.