This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now.

Today we're talking about sex and intimacy with Sam Evans and Jane Murphy. Sam is an intimate health and pleasure expert and the founder of Jo Divine, an online company that sells high quality, skin-safe products, including sex toys, vaginal moisturisers and lubricants. And Jane is one of Breast Cancer Now's nurses, who's here to help us with more specific guidance around breast cancer. This was a really great chat. I think one of the things that really stood out to me is we talk a lot about the gut microbiome and what different foods do to our bodies and our overall health, but we never think about the microbiome in our vaginas. And that was one of the things that Sam talked about. If you're to be using products to help with the side effects and symptoms of menopause and breast cancer treatment, then you need to make sure those products are skin safe. The other thing we talked about was communication and how We've really just got to get comfortable with talking about sex and bringing up any issues with our oncology teams. And we also talked about how sometimes we need to not overthink problems with sex and intimacy and actually just look at how a really good conversation could actually help us find the solution of some of the problems we might be having. So I hope you enjoy this conversation with Sam and Jane and I hope it makes you feel that you're not alone in whatever you're going through.

Today we're talking about sex and intimacy with Sam Evans and Jane Murphy. We'll be talking to Sam and Jane about the effects of breast cancer on our sex lives and how it's possible to relieve certain side effects to be able to enjoy sex and intimacy. Sam and Jane, welcome to the podcast.

Thank you.

Thank you.

Let's start by introducing yourselves. So Sam, you founded Jo Divine with your husband, Paul. Tell us about the company and what you do.

So, Jo Divine is an online pleasure product company and we only sell skin-safe and irritant free products and have done so for the last 18 years. But you also have hundreds of sexual health and pleasure articles on our blog with lots of practical advice. So, our blog goes from cancer to kink, your sexual health and pleasure go hand in hand. And they have become resources for many healthcare professionals in the NHS and private practice but I also obviously advise a lot of people about the products that we sell and how they can actually regain their sexual function and reclaim their sex life, which often can be better or different after they've had their treatment.

And Jane, you're one of Breast Cancer Now's nurses. What area do you specialise in?

Yep, so I'm one of the nurses at Breast Cancer Now. I'm the Senior Clinical Nurse Specialist and I manage our national helpline and what we call our Ask Our Nurses service, which is all the inquiries that we get written. So that might be through the forums, it might be through web submission forms, social media, any other departments across the organisation. And I've worked in oncology for around about 30 years now, but specialising more within breast cancer. I've worked with lots of women affected by breast cancer, some men as well, but obviously women. And we hear on a daily basis the impact that breast cancer treatment can have on someone's relationships and sex and intimacy.

Lots of people will be listening to this podcast episode because they're experiencing problems with sexual intimacy during or after breast cancer treatment. Jane, could you explain to us how and why breast cancer treatment can affect us and what sort of side effects someone might experience on their sex life?

Sure. So I think it's really multifaceted. I think there's lots of reasons why someone's sex life and their intimacy can be affected after a breast cancer diagnosis. Obviously being diagnosed with cancer has a huge psychological impact. The treatments that somebody have might include surgery. So this could be breast removal, mastectomy, possibly with or without a reconstruction. Lots of women may need to have ovarian suppression, where their ovaries are shut down. Lots of women will experience fatigue, they'll experience side effects from the hormone therapies that they may need to take. And we know now that some women need to take those hormone therapies to reduce the risk of their breast cancer coming back for up to 10 years. So if those are causing side effects like the ones that we're going to talk about, which they very often do, the thought of that going on for as long as a decade, as someone's naturally ageing anyway, it's going to have a huge impact.

Yeah, I mean, from my point of view, I offer practical advice, but, you know, it's the whole impact of the cancer treatment upon your physical and mental wellbeing and, you know, the physical issues, the psychological issues, the fact is that the breasts are inherently connected to your sexuality. And then if you have surgery, you that has a huge impact upon you. And as you said about the treatments, we want people to carry on with their treatments, but the problem is some people stop because of these debilitating genito-urinary symptoms that they have. And I think if we can do as much as we can to help them with those symptoms, it would encourage more people to continue with their treatments. That is so important because obviously breast cancer can come back if, you know, for some people if they stop their treatment or they don't take it for long enough.

Yeah, absolutely.

Jane, could you briefly explain what menopause and perimenopause are? Because some of this ties into what we're going to be talking about.

So the perimenopause is the transition leading up to someone's actual menopause when they stop having periods completely and they become infertile. So it's that period of building up to where you eventually stop having periods and your ovaries stop working completely. That can take a number of years. There can be a number of different sort of symptoms associated with that, some of which will be like your typical menopausal symptoms. If somebody had had regular periods, they may become irregular. So it's that point of leading up to where somebody does become menopausal or post-menopausal. And the average age for the menopause in the UK naturally is 51. So yeah, the perimenopause is that transition to the menopause.

And what's the difference between a natural menopause and a menopause that's brought on by cancer treatment, whether it be brought on by having chemotherapy or a surgical operation?

Yeah, so Like I say, with the natural menopause, most women, you the average age is 51, but that is very much an average. With the breast cancer treatments that we have now, which we know are very advanced and very sophisticated and very personalised to the individual woman, there can be different impacts on someone's fertility and their ovaries working. So some younger women who are diagnosed with breast cancer may need to have what's known as ovarian suppression. So this is where they'll be given injections to shut their ovaries down, to stop them from working. And that can happen if the doctors, the treatment team, want to prescribe a certain type of hormone therapy, because that's only effective in women who have passed their menopause. So some women will have their ovaries shut down medically with this injection. Some women less commonly but may have ovarian and oophorectomy so their ovaries are surgically removed. The other treatment of course is chemotherapy that can also shut your ovaries down and some people's ovaries will never recover depending on what their age is when they have their treatment. But yeah it can be that they are, there's less of a transition, it's a more sudden hit into menopausal symptoms definitely.

Sam, what do you hear from patients in terms of, do you notice a big difference in people who use your products and services who have gone through your breast cancer treatment versus those who are perhaps naturally menopausing?

It almost feels like sometimes it's overnight, and they sort of, it's one bam, and they're hit with this. And actually often the genital urinary symptoms are probably the last thing that are actually discussed. And also menopause, perimenopause comes with a myriad of symptoms, doesn't it? So we're It's not just hot flushes and night sweats, there's so many other things. And I think that maybe people aren't prepared enough about the sexual impact that their treatment has because they're dealing with everything else that's actually going on, all the other symptoms, the joint aches and pains and the brain fog and they get chemo brain fog as well. So that's what I hear is it's like, wow, no one really told me about this, I think. That's why we're here.

Exactly. And obviously one of the things we talk about is HRT, hormone replacement therapy, which most people with breast cancer are not able to have because of the associated risks. Could you just tell us what HRT is, what we're missing out on for those of us who can't have it?

So HRT, hormone replacement therapy is a form of a tablet, a patch, a gel, which women who've got menopausal symptoms can use to help manage those symptoms because it's sort of a replacement of your natural oestrogen. It's a sort of synthetic form of oestrogen that your body will absorb. So those kind of side effects that we're talking about, the symptoms of the menopause, they either go or they're much better managed. So women are less likely to suffer with the vaginal dryness, perhaps the mood swings that can sometimes come with the menopause, any of the other sort of hot flushes like we talked about, the fatigue, and even with the menopause, you can get kind of a cognitive impairment with that. So HRT can help to replace that oestrogen that your body's naturally losing through the menopause.

I'd also add to that with vaginal oestrogen. So a lot of women will use just vaginal oestrogen and not use hormone replacement therapy. I use both. I have a spray and a tablet and I use vaginal pessaries. And I don't think enough people know about the benefits of vaginal oestrogen. And I think, you know, we're actually now looking at more research for breast cancer patients about the use of vaginal oestrogen, because it's such a miniscule amount of oestrogen and it's about quality of life. But obviously many of them can't have HRT. But then there are alternative medications they can take for hot flushes, have not some new medications coming, you know, have been brought out. And also the whole diet and exercise and supplements and, you know, cognitive behavioural therapy. There's lots of things that people can do to help to manage their treatment, their symptoms, even if they can't have the replacement hormone therapy.

Wow, I've never thought of cognitive behavioural therapy as being something that could help with symptoms of menopause, perimenopause, and things like vaginal dryness and sexual issues as a result of breast cancer treatment. How does that work?

I think it just helps people to look at their behaviours and actually how they manage things, how they manage, the mental health side of things predominantly, the rage, you know, being upset, I spent a lot of time in tears, you know, being sad, just these emotions that bubble up from nowhere. And also when you've gone through, you've got breast cancer treatment, you're dealing with a cancer diagnosis too. And it's actually about you taking time for yourself. And there's all sorts of things that people can actually do like breathing exercises and techniques. I mean, that helps things like palpitations that are a menopausal symptom. And it is offered as a treatment and alongside hormone replacement therapy and other medications. The problem is we've got a huge waiting list in the NHS. So as much as we can say, yes, this is something that can really help you. And it works for some people, it doesn't work for other people. There are a long waiting list for it. So, you know, it's about exploring whatever might work for you. And if it doesn't work, maybe you could try something else. But it is offered. It's in the menopause guidelines and it is offered, know, the British Menopause Society. It's on their website.

So what solutions do we have to help with low or no libido following cancer treatment? Or during cancer treatment?

Low libido is quite complicated. It's not just the fact, obviously the treatment impacts upon your libido. You'd be sent into menopause, but it's the impact upon your relationship, how your relationship is with your partner. If you've got children, if you've got teenage kids, if you've got elderly parents, we often talk about, sort of if you're in midlife, you're stuck, you're this sandwich generation. And obviously then if you're a younger person, you have the impact of the treatment on fertility. So that can affect your libido and how you feel about yourself. Also stress, anxiety, busy lifestyles, trying to work, finances. This affects anybody with low libido. And I think it's quite hard for people to say, just don't feel like having sex. But I think the problem is people always focus on penetrative sex, if that's the type of sex they're having. Or that sort of intercourse, whatever they're doing. And I always say to people, well, it's about the kissing and cuddling. Let's get back to basics. Let's talk about being intimate and actually having a hug, that connection, holding hands, going for a walk, because it can be really quite hard. People going through treatment can often reject their partner because of the way they feel their partner doesn't understand it. They feel like they no longer love them. And people obviously struggle with body image issues. So it's quite complicated. And I think sometimes having psychosexual therapy can really help people talk through that. Again, there are long waits in the NHS. We work with a lot of psychosexual therapists. Not everybody needs that, but I think it should be available for them if they want to talk to the therapists on their own or they're happy to go with a partner. So it is quite complicated to, you know, there's no quick fix for it. You know, it's about working through it and finding what works for you and regaining that connection with a partner or with a new partner.

And what happens if you're doing the kissing and the hugging and you're getting to the point of a bit more intimate sex and then there's just too much pain caused by the vaginal dryness or other sexual symptoms?

So that's when you grab your lube!

Tell us about that.

So basically your natural lubrication is impacted by the fact that your oestrogen levels have depleted because of the treatment and you've gone into menopause. And so that affects your own natural lubrication and how you produce it. And anybody can experience vaginal dryness. You can be as aroused as anything and actually still feel dry because it's not just cancer treatments. It could be stress, anxiety, breastfeeding, side effects to medication this time of year, antihistamines. And a lot of us in menopause do take antihistamines for itchy skin. And so all those things can actually impact upon your natural lubrication. So by using a really good irritant-free lube, and I'm going to reiterate this many times, if you take one thing away from this podcast, that you will now be going out and checking all the ingredients on any lubricants that you're using or buying or have been prescribed. And a good lubricant can make such a difference because it can enable you to get going. You can put it on yourself, your partner can put it on yourself, you can put it on a toy. And it's actually a really good way to make things feel a bit more comfortable and enable you to enjoy pleasurable sex. If penetrative sex is the sex that you're having, but obviously if you're with a partner and playing with fingers, with toys, again, lubricant's really, really important.

It's really interesting what you say about the skin safety because I've become quite obsessed. I'm very into food and I work with food as part of my job and I read a book about ultra-processed foods and there is an app called Yuka where you can scan products in the supermarket and it will tell you how good they are on a scale of 1 to 100. But you can also scan it for skin products, for skincare, shampoos, conditioners, and it will tell you if the product has irritants or pollutants and things like that. And it's not something that all of us necessarily think about in terms of how our skin might be affected. I mean, what are the potential dangers? Because I've never really thought about, thought much about, you know, what I'm putting on my body versus what I put in my body.

Well, I always say to people, if you care about what you eat and what you put in your skin, face and hair, think about what you're using on your vulva and your vagina, on a penis and inside your anus. Because actually your vagina is highly absorbent. So it's actually going to absorb whatever you put into it. There are so many different sexual lubricants out there at the moment that we now have far more research and we know the ingredients that are irritants. My own intimate health was destroyed by well-known lubricants because of the irritating ingredients and I experienced issues for 20 years, which is why I do what I do now, partly. But you'll need to be ingredients detectors. You'll need to be looking for glycerine, glycols, parabens, dyes, perfume, alcohol, glitter. Those are what you don't want, that's list of things you don't want. CBD lubes, we don't know what CBD does to the microbiome of the vagina, that's your friendly bacteria, we want to encourage those, they keep the friendly bacteria, your friends, and they keep everything happy and healthy, moisturised, lubricated, it prevents infections. And so basically you need to be this ingredients detective, because glycerine is a well-known irritant and it can cause thrush. And it's seen in a lot of products because it's cheap, it makes the product feel very, very sticky. I'm talking about water-based lubricants now. These are more problematic. Propylene glycol is a well-known vaginal irritant. And it's actually the ingredients that when you first put on the lube, it can cause that itching or stinging. And that's not just on your vulva, it could be on a partner's penis too. Parabens, they are preservatives in a lot of products. They're being removed from a lot of skincare products now and body care products. So why would we want to be put something inside our vaginas that contains parabens and dyes. Nobody needs a bright pink vulva, perfume. You don't need to smell of vanilla. Oral sex is great. Oral flavoured lubricants are great for oral sex. There are some safer ones out there now with natural flavourings, but I always say to people, but wash them off if you're gonna have penetrative sex and use your irritant-free lube. Alcohol, that's very drying to the tissues, and glitter. I don't know, ready for the festival, I'm not quite sure. So I always say to people, be an ingredient detective, but the problem is a lot of brands use different ingredient descriptions. So I say, you don't know what it is and you're in the shop there, just Google it. And you'll often find it's one of those culprits that will pop up. But don't get me wrong, it's about finding what works for you. And if you've got a lube, and this lube's absolutely fine, that's fine. But actually, I advise so many people who've been either prescribed something by their GP that's caused thrush or irritation, or they've been given a sample or they've gone to the supermarket and they've bought something off the shelf and they've used it and they've ended up with real problems. And then that puts people off using lube because they assume all lubes are the same and they are absolutely not.

So just going back to something you said before, so we have the gut microbiome in our gut, in our body, which has kind of been a buzzword over the last few years, but you're saying that we also have a microbiome in the vagina or in the vulva.

It's in the vagina, so we have a vaginal microbiome and the problem, we need, it's good bacteria and we need that, but often some people can have an overgrowth of, know, sort of bad bacteria. That could lead to things like thrush and bacterial vaginosis. That's the fishy smelling discharge that requires antibiotics for it. And the thing is by using poor lubes, but also all the intimate hygiene products, the washes, bath bombs, I call them thrush bombs, they're awful. Bubble bath, if you shampoo your hair in the bath and then you jump in the bath, you know, it's those things because shampoo contains sodium lauryl sulphate which is very drying to the tissues and it's all these things. We've got perfume, menstrual products and scented condoms and you know, and sex toys that made from jelly latex and rubber, they're highly porous materials, they absorb bacteria, they leak out chemicals, they perfume some of them because to conceal the smell which is why it's important to use skin-safe sex toys. We need to look after this friendly bacteria and so we don't destroy it. The problem is you get into a cycle of I've got thrush, so I'm going to use Canisten, I'll name it because it's obviously the most well-known product and it's available over the counter now. Treat it, it goes away, I'll go back to using my lube or my intimate wash or whatever, oh I'll get thrush again. And it's a vicious circle and so. And also, if your thrush isn't going away, sometimes it may not be thrush. There are other genital skin conditions that happen in menopause and at other times that need to be checked out. So, you know, this is really important. Don't put up with it or just assume, well, I've got thrush because you need to be checked. You need to be swabbed. But also check all the products that you're actually using and check those ingredients, you know, and if you're using something, do a skin test on your labia, on you know, on externally. and just see if it feels okay. And obviously anything that stings it, or burns, wash it off.

So we shouldn't be using those intimate washers?

No, because you can't, your vagina's self-cleaning and basically you just wash your vulva with water.

And what's the difference between a lube and a vaginal moisturiser?

So a moisturiser's designed to use sort of every two to three days and we can use it every day, know, if you want to, inside and externally on the vulva. And then obviously a lubricant is designed to be used for any form of sex play, be that on your own, with a partner, with toys. Having said that, SUTIL Luxe can be used as a moisturiser too. They contain hyaluronic acid. And some people use the YES oil-based lubricant as a moisturiser. They use it externally on their vulva. And a really good tip with the YES oil-based, I do, if you're going swimming in the sea or chlorinated water, pop it on your vulva, because it'll protect those tissues. And it's great lip balm. Lube up your lips.

Hang on, are you talking about the face?

Yes!

OK!

Jane, are you able to tell us a little bit about what happens when the oestrogen goes away in terms of our vagina?

So oestrogen receptors are sort of throughout different parts of our body. When somebody has a breast cancer, they may have an oestrogen receptor-positive breast cancer, so they'll be put on a hormone therapy, a form of hormone therapy, so that might be tamoxifen or aromatase inhibitor, and that reduces or blocks the amount of oestrogen in their body. And because you can get oestrogen receptors in normal cells as well as breast cells, they were also within the urinary, genitourinary tract. So if you have a depletion of that oestrogen in your body, because the drugs you're taking are systemic, so it's going to affect oestrogen wherever it is. It's going to reduce oestrogen everywhere in your body, not just in certain parts. The oestrogen helps keep the vagina sort of plump and healthy and moisturised and naturally sort of, you get natural fluids and wetness when you've got a good amount of oestrogen. And if you've got low amounts of oestrogen because of either the natural menopause or because you're in a treatment that's reducing your oestrogen, then that's gonna dry out those secretions, why also sort of it can affect people's hair, skin, nails. So it's all various sort of body parts that can be affected by low levels of oestrogen.

And if you've tried all the vaginal moisturisers and the lubes and you're still finding penetrative sex really painful, where do you go from there?

Well, if you're able to have vaginal oestrogen, and as I said our thinking is changing on that now, we've had new research come out, then that actually can be really transformative. There's a brilliant doctor called Dr Alison Macbeth, I know who you've worked with, and she recommends it to all her patients, whatever breast cancer they've got, because her view is it's about your quality of life, and we want to encourage people to carry on with their treatment. We don't want them to stop because they've got genitalia, any of these symptoms. And like Jane said about, you know, it affects, keeps the vagina plump, but also it affects your urinary tract and your bladder. So that's why people get recurrent cystitis and UTIs, you know, I'm one of those former sufferers, thrush, UTI, cystitis. And, you know, there's nothing more debilitating than that as well. So that's why a smidgen of oestrogen can actually really help those tissues because, there's nothing, having recurrent UTIs and that sense of feeling like you need to go to the lube because you've got your urethral irritation, there's nothing worse than that, in addition to having a very sore vulva and vagina. And the tissues dry out and they split and they can bleed and also that makes the vagina tighter too because the vagina, the tissue shrink and that actually can make penetration feel very uncomfortable or not possible.

Unfortunately, there are patients who still can't have the vaginal oestrogen. I know my team don't advise it because with secondary breast cancer, sometimes it's just, it's not advised. So do talk to your team, listeners if you're, if you're thinking of, if it's something you're thinking about, but as you say, it is also about weighing up the balance of life and quality of life.

It's balancing those risks and benefits, isn't it? I mean, we certainly speak to lots of women that if they know the information, they feel it's their decision, quite rightly. With the topical HRT, if someone's on tamoxifen, then that's usually okay because the tamoxifen, the way that's absorbed and the way that works, it's thought that any oestrogen that were to be absorbed would be kind of mopped up by the tamoxifen, if you like. The British Menopause Society have got a consensus statement on HRT and breast cancer. So, it looks at sort of risk and also women who've had a diagnosis of breast cancer.

What about the more psychological effects from breast cancer treatment, like loss of confidence, change in body image, depression, anxiety, and maybe body hang-ups that make people reluctant to even get naked with their partners?

Yeah, absolutely. And we hear from lots of women on the helpline who, you might think of those more obvious treatments like surgery and hormone therapy, but even things like radiotherapy can cause skin changes. We speak to so many women that say, I feel like I've aged like 20 years. I'm 50, but I feel like 70 or 80. And it can have this real sort of ageing effect, not necessarily physically, but psychologically because they get the joint aches and pains with hormone therapies, because they have all the menopausal symptoms and the vaginal dryness and irritation and UTIs and yeah, the impacts on their hair. So there are some, obviously there are some physical impacts, but yeah, certainly there's a massive psychological impact as well.

What about the effect of that psychological side on the physical side? So let's say you're experiencing depression, anxiety, maybe you've got secondary breast cancer and all you can think about is death and your illness and understandably for a lot of people the last thing on your mind will be having sex or getting intimate with your partner. But you might want to because you might feel like that's part of your relationship that you want to kind of get back on track. What can those people do?

I often hear from people saying it's the normal part, the thing that's only left, sort of just having that kiss and a cuddle with their partner. And that's why I always say, you know, haven't got to go swinging from the chandeliers and jumping off the wardrobe, you know, to enjoy your sexual pleasure. It's just those intimate moments that you can actually have with your partner. And communication, talk, and I always say this to, you know, my whole menopause community, but to anybody actually who I'm talking to, communication is key. And if you're feeling like this, you need to talk to your partner and most partners will be understanding, don't get me wrong, there are partners out there who really struggle too. And actually there are partners out there who don't want to be intimate with you because they're worried they're gonna hurt you. And actually you need to say, no, it's actually fine, I'd like to. And it's a really fine balance to actually get that right. And also they may go to, have penetrative sex with, they may lose their erection because they are so worried about hurting you or you might sort of wince or you know, but if you take things slowly and then that creates a complication because you might think, oh they've lost their erection, they don't fancy me anymore, know, because my body's changed, I haven't got my, I've lost my breast, you know, I've lost my hair if I'm going through treatment, you know, they don't find me a sexual being and it's absolutely not that, it's the fact that the stress and anxiety for both partners can be like that. And obviously there are people who don't have partners and this negotiating a new relationship, you don't have to go in all guns blazing, I've had breast cancer and everything, you can just say, you are gonna have sex and say, I really like, know, I'm using condoms, but I really like using this lube. It's a non-negotiable, you just do it, you know, and that should be in any relationship anyway, with a new relationship. And then if you want to, I mean, obviously you've had a mastectomy and you haven't had a reconstruction, that's pretty obvious, but you might want to wear a t-shirt or something. But I think talking to somebody, talking to your partner is so important because they'll often say, oh, I didn't know you felt like that. I've done this with my husband, actually, you know, and we've been together for 35 years or something, probably longer. And we work together every day. And yet there were still things now and he'll go, I didn't know you felt like that, you know, and so even in long term relationships, people need to talk to their partners and even though they may find it hard to talk, but you can just try and start a little conversation. And if you are really struggling, this is where psychosexual therapy can really play an important part in your relationship because that therapist is this sort of objective person and they can actually help you to start talking to each other.

How do you start that conversation?

I think you just basically have to be very honest and very brave. I know it can be quite difficult and do it at a time that's calm. You haven't got kids around, you're not being annoyed by somebody calling from work or you having to answer emails or the dogs barking. It's actually maybe going on a walk or going out for dinner somewhere quiet and just starting this conversation at a time that is actually right. So if you're just sitting on the sofa of an evening and you know, you might want to turn off the TV and actually just say, oh, can we have a chat? And it's amazing when you actually open up that conversation. So many people say to me, I spoke to my husband now and actually he had no idea I was feeling like this. And I didn't know he felt like that. And it works for the vast majority of people when they do have these conversations.

We've talked a bit about having a partner, long-term partner I guess. We've talked about male-female relationships obviously all of this also applies apart from the erection part to female-female relationships or any kind of relationship. But what about a lot of people go through breast cancer treatment single. I went through mine single and I've written a book single bald female about dating after breast cancer and being single. It's a bit of a minefield to know how to approach a new relationship when you have breast cancer or when you've had breast cancer because there are certain things that you're experiencing that you don't know whether to be open with them about it. What would you say if someone is either going through or coming out of breast cancer treatment and they are experiencing problems with vaginal dryness or other intimacy issues?

Well, I think if you just automatically going to use the lube, then that's absolutely fine. Or you might find that you want to use a little bullet toy because that helps you to enjoy an orgasm. You those are things that people do anyway, going through cancer treatments or not. So in any relationship, you know, it was Lauren Mahone, I did a talk with her for another event and she just said, yeah, I've got my little bag, I've got my lube, I've got my condoms, I've got my little bullet. And I just remember thinking to myself, yeah, and that actually, that's what you should have. But anybody would have that. But obviously, to quite a confident person as well. If you're not so confident, I think it's up to you really. You don't want to open that conversation as I said and say... Sometimes I think that maybe you should say, you know, there are things that I would quite like to do this. I like to be touched in this way, you know, but that's like with any relationship, but you may not want to do something, you know, just hold me, just stroke me or, you know, cuddle me or kiss me or, you know. I know, and if they are a nice person, hopefully they will be around and if they can't cope with it, some people can't. They can't cope and it's very, very difficult because we're all human, we're all unique as well and people's coping mechanisms are different. But until you say to them, this is what I've been coping with or this is what I'm dealing with, you'll not know and actually you might be very surprised and then you end up being with them for the rest of your life, I don't know.

And I would say perhaps if you're in a new relationship or dating someone and you're scared to tell them about having breast cancer or having had breast cancer because you're worried they might react in a certain way, then perhaps you need to be questioning whether they are the right person. Because if you don't think, if you don't automatically think that they're going to be nice about it, then it sounds like there's something not right there anyway. But at the same time, depending on who you are and who the person is, it's probably worth having that conversation because actually you might be, you know, with anxiety and with going through breast cancer, it's all such a minefield that actually you could make up a story in your head about how someone's going to react. And actually it's not how they would react at all. And actually they may, might've been through something similar. They might have their own hang-ups, it might lead to a conversation where they say, do you know what, you've opened up about that, I'm now gonna open up about this and actually, you know, who hasn't got their own body hang-ups and other issues. So it might make you closer in some ways.

We've actually got a really good article on the website about breast cancer and body confidence written by a fantastic person called Darlene. And she was dating, you know, sort of, I think, just going through breast cancer, so in her 40s and 50s and trying to date again and how difficult, it was an absolute minefield to navigate. But she talked about her body colour, she had fantastic tattoos and there were flowers and they all meant something, family members, and that was beautiful. The way she's written it, she actually said this was really difficult, was kind of like I'm a work in progress and I will keep looking. This was several years ago, but it's a beautiful article and she also did the photography for the article too. I think it's good to read something like that, think, well, this person's obviously, you know, she struggled with her confidence and the way she felt and that she was an older woman and having to date again, but actually, you know, thinking, yeah, there's hope and there will be somebody out there. And you've just mentioned they might have their own issues, but also they may have had family members who've gone through breast cancer treatment and all cancer treatment. Let's face it, most of us have been touched by somebody either has had cancer, you know, or they've had a relative or a friend. And I think, you know, maybe there's more understanding now. I think, really be honest, I think that often is the best way to go. And I think you probably don't want to invest a lot of time and effort into somebody if they aren't going to be exceptional. So you're better off knowing that relatively early on. So you can think, well, OK, this isn't for me, rather than sort of perhaps spend a lot of time and sort of waiting until you do kind of have that conversation and then realising that they're not for you. So yeah, perhaps the earlier on you feel able to, the better.

So Sam has come to the studio with a table full of what I can see, lubes, we've got some lots of pink, silicon-looking objects. We've got what I think is a dildo. Why don't you talk us through some of the magic stuff on your table?

So at Jo Divine, we have a health brochure, which we created with our local hospital in Tunbridge Wells with a consultant urogynaecologist in the pelvic health physio. This is to help their gynae patients and their gynae cancer patients. So it contains slim sex toys, clitoral stimulators, because we, majority of us orgasm through clitoral stimulation, and we don't get enough of that, which is why then we do orgasm dilators, so some patients will be using plastic medical dilators available on the NHS, but we have lovely silicon dilators and the lubricants too and a fantastic little gadget which is on the dildo and it's a set of four stretchy rings and basically it prevents deep penetration. So as I talked about the vagina shrinking because of the depleting oestrogen levels but also it, the vagina can become shorter too and actually then penetration can feel quite painful. So it's a really stretchy ring will fit any size penis and basically you pop it on a penis and it just reduces the length of the penis so that you can't be penetrated too deeply. And I always say to people with penetration as well, think about the positions, be on top that enables you to control depth of penetration. Maybe a spooning position. I think things like doggy style, that's actually often deep, quite deep penetration. So it's about you finding what works for you, might find lifting your hips with a pillow or something really, really helps. So yeah, but start with something really simple. As I said, I've got this bullet in my hand. It looks like a lipstick.

It really does.

If you've got that out in a restaurant, no one would suspect a thing. Pop that in your handbag, you know, and no one knows. You can take it on a flight and no one's going to take it off you at customs. There are a lot of countries now where you can't take your sex toys to. But the thing about these toys is they're pleasure products, but they will help you to regain your sexual function. So they'll help with that vaginal tightness. You can massage the entrance of the vagina here with the Jo Divine IMMY, which is our most popular toy. Just a little bullet operated toy with a silicone cover on it. And a lot of our healthcare professionals recommend it, but it's also a good toy for anybody who's never used a sex toy. I think a lot of people sort of going through cancer treatment, know, be that breast cancer treatment or any cancer treatment, and then oh going by yourself a vibrator or a dildo, and like people go, I've never bought anything like that. Where do I go? Where do I buy it from? What should it be made from? know, what's reputable? What should it look like? Which is why this little booklet gets given out across the NHS now and in private practice, you know, which is brilliant, because also it helps healthcare professionals to open up the conversation about using a pleasure product. And, you know, but there are different size toys. They've all got the dimensions on them. There are sort of toys that don't even look like sex toys. This one's just a little bullet. One of my favourites. It's like a pebble. Absolutely gorgeous. And this is our most popular, the LELO Sona 2. It's a sonic wave. It uses sonic wave technology. These types of toys have transformed orgasms around the world in the last few years. But I find this toy particularly helpful for people who have decreased sexual sensations. you you're going through treatment, you're actually sort of rediscovering your sex life again, you're masturbating or you're using your favourite toy and actually you're really struggling to reach orgasm. So these toys work in a different way in that they send sonic wave sensations through the clitoral tissues that are beneath the surface. What you see on the outside is just the tip of the clitoris. And basically it's a slow build up, it stimulates those tissues and it enables you to have an orgasm, I've got people having orgasms who've never had one before or just saying this works really well for me. And also they're good toys to use to get in the mood as well. They also promote the blood flow to the tissues of the vulva vagina. It plumps them up, that actually boosts your arousal and your desire. You know, use them in the bath or the shower. You can use them with a partner. Some are app controlled if you're brave enough to give the phone to your partner, let them control it. And obviously if you're on your own as well. So it's about sex toys being used as a tool to help you regain that sexual function, but also pleasure. It's actually about you regaining that sexual pleasure too. Vibrators can be great for stretching the vagina, promoting the blood flow. If you've got vaginal tightness, massaging on your lube, massaging on your vaginal moisturiser, and obviously use on your own, you know, use with a partner, use beyond penitentiary sex, if that's not the sex that you have. It's about having fun because they feel nice, you know, and people have been through treatment. Some people go through treatment for a long time. Some people are on ongoing treatment and it's actually, you know, about you enjoying fun that it's not clinical, you know, to have a, you know, a nurse whip out the Jo Divine in me or have it on the work surface in her clinic. And people are curious, and a lot of my healthcare professionals will hold it in their hand and people go, what's that in your hand? And then it opens up this conversation. It's a very natural thing to do. And what it is, it means that healthcare professionals are normalising sexual pleasure, you know, beyond, it's not being, it's not clinical. Lots of people feel like, you know, their bodies have been hijacked during cancer treatment, you know, and they no longer feel like that their body is theirs again. So it's about them reconnecting with their body and their sexual being as a sexual being as well. It's important. But the health brochure has been transformational really. We created it quite a few years ago and I love when I hear, well yeah, I leave it out and then the patient goes, oh, what's that? And it's great because it gives healthcare professionals the confidence to talk about pleasure products and knowing where they can signpost people to, they can actually show products to patients and dispel that myth that not every sex toy is a rampant rabbit, thank God.

So is the bullet the sort of entry-level toy, you'll pardon the pun?

Yeah, I was saying the bullet, you know, the pebble toy, any small toy, you don't have to buy the biggest sex toy on the website or in the shop, you know, and actually bigger is not necessarily better. It's about the power of the motor, its function, because some will thrust, some will rotate, some mimic oral sex, you know. There's just so many lovely things. A lot of the toys don't even look like sex toys if you're worried about, you don't want to use something that's phallic shaped. I just picked up the pebble. If you left that on the bedside table, no one would know what it was.

It almost looks like an AirPods or EarPods holder. Or one of those massages for your face, for your skincare. And the purple one that you had in your hand before that you were talking about looks sort of like a pumice stone. crossed with an ear thermometer. It looked like I kept thinking you were gonna put it in your ear.

Maybe you could, who knows? And if someone just has no idea where to start with sex toys, there a questionnaire on your website that will tell them what sort of thing to go for? No, there are lots of articles though. And basically there's an article called Sex After Breast Cancer. So I have actually talked about everything that happens to you during your breast cancer treatment and why these things affect your sexual health and sexual function and pleasure. And actually then I've signposted, I've recommended certain toys that actually will really help you. They have different functions as well. You know, we always start off with lube. That's your first thing that you should be doing and making sure that it's skin safe and irritant free. But yeah, I always say to people, start with a small toy, you know, and then, you know, some people will start with a small toy. Some people will go for a classic vibrator which they can use internally and externally on their clitoris as well. And I always say to people use the toy on your own first, use them in the bath or the shower because the majority of them are waterproof. Get used to how it feels on your body and you know and then you can introduce it to your partner if you're in a relationship. But I just think just find different ways. I often say with the bullet toys I mean if you've actually got still got nipples or a nipple, you know, you can use bullets on nipples, can use sex toys on nipples for nipple stimulation, but also on a partner's clitoris up and down the shaft of the penis, on the testicles, on their nipples. It's about having bit of fun with a fairly inexpensive little bullet, you know, and the most important thing is that you are having fun because sex is meant to be pleasurable and fun and have a giggle about it. That's what we're trying to do at Jo Divine is that actually bring back the fun and the pleasure into your relationship when you've gone through or are still going through cancer treatments.

Jane, understandably oncologists are there and oncology teams are there to deal with the breast cancer. Cancer is the main issue to tackle and then there are all these problems that come around it whether they are side effects from the treatment, menopause caused by the treatment, depression, anxiety, everything else. But sex is often the last thing that's talked about, sex and intimacy. If a patient doesn't feel they can talk to their oncology team about that, where can they go? Who can they talk to?

Well, they can certainly talk to us, the nurses at the helpline or email us at Breast Cancer Now, our Ask Our Nurses service. It's something that we are approached a lot about and people do ask us a lot about this and again it's that don't suffer in silence but any side effect is important to report. We encourage everybody to report any side effect they've got from their drugs to their treatment team and obviously for lots of reasons sex and intimacy or issues around sex and intimacy are less likely to be sort of talked about because the patient might feel uncomfortable, might be a bit, their treatment team might not have time to talk to them or the expertise. As Sam says, some healthcare professionals are really engaged with this aspect of living with and beyond breast cancer. But certainly I would say give us a call. You can speak to us on our helpline, on our forums. We've got a section that's a closed forum, but you can join, which is about sex and intimacy. We have a range of other resources that I can sort go through now or later where people can get support and information and connecting with other women, think that's one of the most important things, that peer support of women coming together and saying, that's exactly how I felt and, oh, right, okay, so I'm not alone, this isn't just me that's suffering like this and experiencing this, so what can I do? And women helping each other with what helped them and just spreading the word and talking about it openly. I think that's the most important thing.

There's certain cultures where it's even more taboo to talk about sex and intimacy and you know, certainly in South Asian cultures and a lot of other cultures it's even more taboo. What can those patients do if they're feeling even more sort of isolated but unable to talk about it?

I think it's really difficult because even with things like the menopause that was really taboo until you know, it's much more openly discussed now thanks to various crusaders and celebrities who've sort of really shone a light on this. I mean, my mum called it the change, you know, it wasn't even called the menopause, was the change, you know, and I didn't know quite what this change was until I got older. But yeah, I think it's even more difficult for other communities where sort of even health, sometimes even breast cancer is not something that can be talked about in certain communities. So it's really about how we can get the message across to all women, whatever their ethnicity, whatever their background, their socio-economic situation, it's trying to empower all women. And often it comes from within the community, is my understanding, I think. It's these questions, how do we reach, how do we make sure that what we're saying is something that all women can access, can think about and consider and put their sort of health, physical and emotional health first. Again, that's something that doesn't happen for lots of women across all backgrounds. They don't consider themselves a priority in their family. We often get that. We get partners phoning up on behalf of their female partner who is too embarrassed to talk to us. So we give them advice about lube, we tell them about the toys, you know, they might have a brochure, we've got the Jo Divine brochure that gets sent out, we've got the health brochure. And actually, it's not because that partner is desperate to have sex with their partner, they just want to help them with these debilitating symptoms. But yeah, I think, you know, I live in a menopause bubble, and I often, I did this talk the other day, my first talk locally in Margate, with a lovely practice nurse, and I suddenly realised, gosh, these people just don't know stuff. You know, and these were the women who'd come to the talk as well. One lady was struggling to get vaginal oestrogen. She was stuck between the oncologist and gynaecologist who said yes, and her GP who said no. So she was going back all determined and she was going to laden herself up with all the guidelines and research. But I think that, you know, sometimes I assume that why don't they know about these lubes then? And it's like, well, no, they don't because they've never used a lube. And why would they know that they really should be choosing something that's irritant free? But the conversation has changed and I think we have ambassadors within the communities. There's a really good doctor called Dr Nygaard who does a lot of work within her community. And also she translates leaflets into different languages because a friend of mine actually said, some of these words don't even exist in Punjabi. So how on earth can we actually talk about people's gynaecological health or their intimate health when the word doesn't exist? We can't actually say it and we don't even talk about the basics of periods, oh you know, it's really difficult. So it's about having, as you said, people in the communities to actually go out and be ambassadors and faces on, you know, with your charity as well, representing those people. Because I often do think like the menopause community, middle-class, white woman, that has changed, is changing, but it is, you know, and I come from a position of I think, you know, I have a nursing background, I'm educated, I've educated myself about menopause, I've been lucky to be surrounded by lots of menopause doctors and experts, but the average woman isn't like that. So, you and then if English isn't her first language, then, you know, we've got an even higher hill to get over, which is why it's important to have these fantastic people within the community, the cancer community and the menopause community who can actually, you know, these people, these communities can relate to and identify with. I think that's important. And talking about young people as well, we've talked about obviously there's a lot more younger people being diagnosed with breast cancer, but we've got a lot of young people going through menopause, not just because of cancer treatment. And again, let's dispel the myth. We talked about the average age is 51 for a natural menopause, but know there are a lot of people going through menopause at a much younger age. And so we need to change that dialogue as well because I think some people have found that the information that used to be provided didn't really apply to them or the images that they saw. People are still using the old lady, but actually, you know, we're not, I mean, the menopause community, people look after themselves, they're on HRT or they're looking after their diet, they're exercising. We're no longer the 50-year-old that maybe, you know, my mum's generation or my nana's generation was, you know, it's actually changing the face of what people going through cancer treatments and menopause looks like because there's a lot more younger people going through these experiences.

What resources would you recommend?

So books, podcasts, websites, TV programmes? Obviously Jo Divine, because there's loads of information there. You can email us, call us, DM us for any advice. And I'd rather people do that. They're not sure what they should be buying or would want to buy, so they get something that they enjoy and something that is useful. But I'm always signposting people to pelvic health physiotherapists if you're having a problem with your pelvic floor. Incontinence is common, it's not normal, and that happens post-treatment and in menopause, the pelvic floor muscles weaken, and so you might find you're putting up with it, you don't have to. So they are your experts. Psychosexual therapists, we work with the Contemporary Institute of Sexology. And there's the College of Sex and Relationship Therapists. Again, I can signpost people to people we work with and to the professional bodies so they can find somebody. And obviously, GPs can actually refer patients within the NHS, but there are long wait times. Menopause and Cancer, you know, Dani Binnington, who set up that charity, which is absolutely amazing. And she's got a brilliant podcast too. Dr Liz O'Riordan, who had was a breast surgeon who had breast cancer. I was on her podcast. Again, she's written several books and the content that she puts out is really good about all sorts of aspects of having a cancer treatment and going through treatments and living with cancer as well. That's a really good resource. And I also work with RadChat. They are therapeutic radiographers, Naman and Jo, and they're absolutely brilliant as well. And they've just launched a website which has got so much information on it to dispel the confusion around radiotherapy, the different types of radiotherapy and post-treatment and what actually can happen to you. So they are really good resources that I recommend. And then there's a really good book called Mind the Gap by Dr Karen Gurney. She's a psychosexual therapist. She's done a really good TED talk, but it talks about relationships and also discovering your bodies and it's sort of the body-mind connection as well. And she's done one as well about trying to have sex when you're a parent. So again, that is a really, really, I haven't got that book yet. I haven't actually seen it, but I know there's been really good reviews about it. And so there are lots of resources. We list them on our website too, but often when people phone up just for a tube or lube, and by the time they go away, they've got the lube, they've got a pelvic health physio recommendation, a book, a podcast, a website, and they go, I didn't expect that, but it's a holistic approach. It's not just, we'll try that and then go away. It's actually, can try that and maybe that might work. And well, actually that person's really interesting. So, you know, that's how it works. And I think, you know, we have nursing backgrounds and I think that's how our brains work is actually want to treat the whole person, don't we? It's really important. Can I also add Cysters as well, up in Birmingham, they are absolutely brilliant as well, run by Neelam Heera. And they support, you know, everybody in their community from reproductive health to cancer diagnosis to encourage people to go for their cervical screening and breast cancer screening, they're another fantastic group as well that we work with.

And it's interesting the people that you've mentioned Sam because it's also you know we've worked with Dani Binnington, Liz O'Riordan, Alison Macbeth like you say. So we do a whole range of, so we would signpost to all of these things as well but we also do our own information and support around sex and intimacy so apart from the helpline, the Ask Our Nurses, and the private section on the forums, Someone Like Me service. If someone wanted to speak to another woman who was experiencing or had experienced the same problems as her with sex and intimacy or sex life, then we can arrange that. We've got dedicated services for younger women. We've got dedicated services for women living with secondary breast cancer. And we've got people, you know, for those in that moving forward phase so that comes to end of their main hospital treatment and trying to get back, people say get back to their lives before, well it's not about that, it's about how to move forward with more confidence. We also have a range of speakers lives, so Alison Macbeth has done one of those speakers lives where people can register for talks on different topics, menopausal symptoms is one, sex and intimacy is another, and we also do a range of breast cancer chats, so on Facebook we have regular Q&As with nurses, or we might have at themed sessions with specific healthcare professionals on certain subjects. We've had RadChat on, they're brilliant. So yeah, there's lots out there. It's just knowing where to go and plucking up that courage if you can to say that this is how you're being impacted by this and not suffering in silence.

And just to say as well that most of the things we've talked about today, were in relation to a female patient with breast cancer with a male partner, but actually all of this, almost all of the advice applies to anyone in any kind of relationship. And even if it's the man who has had breast cancer, which is very, very rare, but it does happen. Are there any more specific recommendations that would go towards a man with breast cancer?

I mean, obviously there can be the psychological impact of sort of surgery, chest removal, men have breast tissue, so they can have mastectomies. Obviously the hormone therapies aren't going to affect them necessarily in the same way, but they've still got side effects. There's also that feeling of a man that's got a woman's disease is what would be considered a woman's disease when we know, but men, yes, certainly can. Numbers, like you say, are much, much lower than women that are affected, but men still can get breast cancer too. Yeah, it can affect them in other ways. And also talking about the stress and anxiety that impacts upon erectile function too. obviously, you know, Jo Divine, we have got products that can actually help people with erectile function. But again, it's, you know, you don't have to put up with these things. Actually, there are things that you can do. And exactly what we've just said about talking, again, that's really important. But, you there are products that help you to maintain and sustain an erection as well. And again, we're always happy to advise people about that.

How can people find Jo Divine? So it's jodivine.com. Just to say that most internet providers actually will block adult content. So you can remove those in your settings for your internet provider, your phone provider, or you can ask them to remove it. It is very frustrating because it's done to protect children, which I understand. But actually a lot of children can get around those filters unlike consenting adults. You can give us a call, you can email us, you can DM @jo.divine on Instagram, can DM me @samtalksex on Instagram. We are on Facebook too. So yeah, there are lots of ways you can get in contact with us. And no question stupid. And often, me people will send a DM and I'll go, oh, I've written an article about that. It's very simple for me just to send a link to an article or sort of send them some advice or say, oh, I'll pop you a brochure in the post or just signpost them to somewhere.

I'd love to finish by asking you both the question we ask everyone on this podcast, which is Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. Sam, what does it mean to you to live well?

It means that you have a happy and healthy life, whoever you are, and that you're not just surviving, that actually this is the best life that you possibly can have.

Jane?

Yeah, I think it's having peace of mind. I think it's having been as healthy as you can physically and mentally. And yeah, there's always hope. We speak to so many women with secondary breast cancer, the treatments have advanced so much and they're living really well for long periods of time, which is, you know, something that we're striving towards. So for me, it's yeah, and never giving up hope.

Fantastic. Thank you both so much for joining us on the podcast.

Thank you.

Thank you.

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