Pleasure & Intimacy
A GUIDE FOR PEOPLE LIVING WITH CANCER
PART 1: RECONNECTING WITH YOURSELF
PART 2: REINTRODUCING PLEASURE PART 3: HELP, MY…
PART 4: NEW WAYS OF HAVING FUN
PART 5: ASKING FOR HELP
ACKNOWLEDGEMENTS
This resource has been created for the Cancer, Sex and Intimacy project funded by Macmillan Cancer Support. Special thanks to Renee and Evie (The Pleasure Pioneers from Sh!); Charlene Douglas (The Intimacy Coach UK); Lucy Machin and Michelle Winser (Gynae Cancer CNSs), and Sarah and Cheryl who initiated and steered this project.
Thanks also to the Cancer, Sex & Intimacy Steering group, the participants of the Coffee Mornings and the courage of the patient participants who shared their journeys during the Cancer, Sex & Intimacy workshops.
Acknowledgment must also go to Macmillan’s Storytelling project for sensitively working with participants as part of this project.
Finally, a special thanks to Fruit Fly Collective and the Mac millan London Engagement Team for making this project come to life helping so many people. Thank you for your time, support and encouragement.
This resource was developed and designed by Fruit Fly Collective. Illustrations on pages 1 (lips), 8&9, 13, 16, 17, 24 by @swinhoeemma, and on pages 1, 3, 24 by @hazeljnicholls.
Graphic design by Daphne Vanden Borre.
Front Cover/Back Cover illustration by Courtney Bogle @courtneykeeps
Cancer can change your life. Your body and mind may feel different, may have been brutally challenged, but despite this, sex, pleasure and intimacy can exist, and play a significant part of your life again. Talking openly about sex, intimacy and pleasure is still awkward for most people, which means many people feel alone with their worries, fears and concerns. We are here to say that you’re not alone, and to present you with this guide to bring pleasure back into your life.
Pleasure & Intimacy
A GUIDE FOR PEOPLE LIVING WITH CANCER
RECONNECTING WITH YOURSELF
Experiencing a cancer diagnosis and being treated for cancer, can damage or alter your self identity. It can be difficult to remember who you once were.
What made you feel good?
What gave you pleasure in an intimate way?
Reconnecting with yourself might mean acknowledging that your body, and how you feel about your body, may be different but also giving yourself permission to feel pleasure again. It might feel scary but start slow and gain confidence with who you are now. You may have experienced the following:
Cancer fatigue Brain fog Hair loss
Radical surgery removing parts of the body Fear of reccurance
Surgery scars Surgical menopause
Neuropathy Side effects from cancer treatment
Menopause
Changes to treatment pathways Loss or reduction in mobility
The ability to care for yourself Comorbidities
Hold onto to the belief that you have the ability to be intimate and feel pleasure again.
“I struggle to see my body in a non-diseased, non-medical
way.”
RECONNECT
PART 1
HOW TO LOVE YOURSELF
TOP TIPS TO HELP YOU RECONNECT
1 Be kind to yourself. Set your pace, and don’t feel any pressure to do things you are not ready for.
2 Carve out a quiet time to be alone. No disturbances by children, pets or Whatsapp messages.
3 Create a relaxing environment. Aromatherapy smells, candles, music.
4 Try some intimacy meditation sessions on YouTube.
5 Reintroduce physical touch as a positive thing. Start by stroking your skin for 15 seconds, and then building it up to 30 secs – up to a few minutes. Try another part of the body and pull the mind back to see how the body is feeling.
6 Enjoy the moment. Try not to dissociate from the pleasure. Go slowly and when the mind starts to wander, try and bring it back to the pleasure you’re experiencing.
7 Try some warm massage oil on the skin, and note how it makes you feel.
LOVE
REINTRODUCING PLEASURE
Good news!Thereisn 'tonlyONE way to pleasure , therearemany YNAM .syaw ehT etuor ot erusaelp si ton linear.There is lots of real pleasure to behadout there
Intimate pleasure and sex is healthy –raises the heart rate, helps hormone balance, helps pump blood through our bodies
Pleasure starts with yourself and re-connecting with the self.
“I
have a mental block around being intimate with anyone “
If you have experienced trauma, it can be difficult for your to brain switch off and stop sending messages to the body telling it to protect itself. Try to retrain the brain. Change the narrative that having sex is the end goal of being intimate with someone me. It is not. Intimacy is like a box of chocolates, there are many different flavours like simply touching, stroking or massaging someone through their clothes.
Maybe start by inserting a cotton bud using a non irritant lubrication into the vagina, then once that becomes pleasurable inserting the tip of the little finger. Remember, using a suitable lubricant will help to remove possible dryness and stimulate feelings of pleasure.
Work out what is the cause of the block
Write a letter to yourself can be really helpful What stops you wanting to be intimate with someone?
Is it psychological embarrassment, shame, fear of rejection, or is it physiological-pain, tiredness?
Sexual response is just as much to do with thoughts and feelings as well as physical sensations. Being diagnosed and undergoing cancer treatment can make changes to how you perceive yourself both physically and emotionally.
It may alter how you feel about relationships, pleasure and intimacy and your own body image. Physical barriers to both giving and receiving pleasure can lead to you feeling selfconscious, distressed or anxious and may cause problems whether you are in a long term relationship or not.
It is good to be able to accept the bad days with the good ones so not to feel pressure to be okay all of the time. Building confidence can have a positive effect, try setting achievable goals that you are able to break down into small steps. If you are feeling demotivated or fatigued, regular low intensity exercise can reduce stress and help boost energy levels. Enjoy the journey try not to focus on the end goal, be patient and give yourself time.
Some women experience pain when having sex. Vaginismus is a condition where the vaginal muscles tighten on anticipation of penetration, which then leads to pain with sexual intercourse. Perineal massage can help to relax muscles in the pelvic floor, it also helps to break down any scar tissue and make it more flexible, so sex is more comfortable.
HOW TO DO A PERINEAL MASSAGE
1 Take a shower or bath, relax in private place and sit with your knees bent in an upright position, (maybe lean on some pillows). Use a lubricant, coconut oil or vitamin E oil.
2 Place lubricated thumbs or thumb just inside your vagina, and press down towards the anus and to the side. Hold for about 1-2 minutes until you feel a slight stretching.
3 With your thumbs, slowly massage the lower half of the vagina using a ‘u’ shaped movement. You will notice the area becoming more stretchy the more you do it. You may also wish to consider vaginal dilators (see part 3).
LOSS OF LIBIDO
Libido is just another word for a person’s sexual desire. There are lots of reasons why we lose our libido (biological, social and psychological) and having cancer is a HUGE reason. So how do we get it back?
Once we tap into feeling a bit sexy, this can fuel the feeling. Remember everyone needs to warm up a bit to get from a non-sexual state to a sexual state.
TIPS TO FIND LIBIDO
1 Try out differentthingstobuildupsexualenergy–understandand have a good think about what turns you on – what do you like –do you like to masturbate? What turns you OFF?
2 Wear something that feels nice against your skin. Remove the big leece and jogging pants, and put on something that makes you feel a little sexy. Think about materials you like, silk, cotton, lace.
3 Create your own environment so you feel good about yourself, e.g. soft lighting, nice smells
4 Buy some lube. Lube is the best, most liberating sex product in the world
5 Buy a gentle small vibrator, and start to use it on the belly button area, and other areas where it simply feels nice.
6 Begin to map out your erogenous zones –explore new areas of the body
7 Watch some ethical porn, or listen to or read some erotica
8 Make your own porn. Maybe record just sounds that you can play back
9 Form an intimate connection with yourself, or your partner. Touch, smell, gentle or firmstrokes,oruseeyecontact
10 Remember it is trial and error. Experiment and enjoy the sexual journey as much as possible.
“Every moment is new, and so is every experience. Curiosity is your ally.”
“Our sex life has changed enormously however our intimacy has not; it took some working.”
Being open and honest about our sexual desires and needs with our partners, can be incredibly tricky and embarrassing. Communicating openly about your intimate sexual likes and dislikes is so important for the overall health of the relationship.
Your partner may be worried aboutputting pressure on you and thus avoids talking about sex or initiating sex but communication is lubrication! Tell your partner how you’d like to be touched. If places that used to bring pleasure are now too sensitive or painful then explore new erogenous zones together.
TALKING TO YOUR PARTNER
“I
couldn’t show my body to my partner as l was angry trying to come to terms with the body image that has changed.”
TALKING
WAYS TO HELP YOU COMMUNICATE
1 Buy a book for both of you to read (recommend Bliss)
2 Write a letter/email about your feelings and your wishes. Even if you don’t send it this process can put into focus want you want, and give you confidence to express it.
3 Buy a card game to play in the bedroom. This can take away the pressure of making any decisions.
4 Attend an online course together (recommend Shushlife courses)
PART 3 HELP, MY...
“Route to pleasure is not just through the genitals.”
VAGINA IS TOO DRY
Lube up - it can transform your sex life! Adding some lube to fingers or toys will ensure that touching and playing with your vulva and vagina will be more comfortable.
Avoid lotions, soaps or perfumed stuff. Your vagina is a self cleaning machine.
Use both water based lubricant and vaginal moisturiser (Sh!, Sutil, Sylk & YES (Replens brand is available on NHS prescription via the GP). Free samples of lubrications are often available to try what feels right for you.
Apply lube every day, and as and when during sexual play. Apply vaginal moisturiser every few days. Make sure the water based lube has no parabens and no glycerine.
You may have been recommended a topical oestrogen for vaginal dryness, please ensure you have discussed with your oncology team prior to using.
If using condoms make sure the lube is safe and doesn’t damage the condom.
“I have learnt to love my scars. Be kind to yourself.”
SCAR PUTS ME OFF BEING INTIMATE
If you feel like you want to hide any scars think about dressing up in underwear or clothes that make you feel good. What materials make you feel sexy? Might be silk, sheer fabrics, or suspenders and corsets. Accentuate the parts of your body you love.
HELP
“Don’t suffer in silence your pleasure matters now more than ever.”
VULVA/CLITORIS HAS BEEN REMOVED
All women are unique, and the clitoris is no different. Stimulation is different for each individual woman. The clitoris is a large organ with only part of it visible to the external part of the vagina. This may mean even if the clitoris is not intact that orgasms are still possible. Try to create deep throbbing sensations using a toy that gives powerful vibrations, like the wand.
Explore other zones that might feel good, such as the inner thigh, the neck or nipples.
VAGINA IS ATROPHIED
Vaginal atrophy is a common condition often caused by decreased oestrogen. Thinning of the vaginal walls can cause irritation, burning, itching, and discomfort in or around the vagina. Other symptoms include tightening of the vaginal canal, pain or discomfort during sex and spotting after intercourse. It can be very debilitating.
Try the Dilation kits from Sh!.Nice soft flexible silicone material which starts small (like a little finger) that begins to loosen the vaginal wall. They also have little vibrators added making the whole experience more relaxing.
Dilators can also be used for Vaginismus which can be triggered by the trauma of cancer or cancer treatment.
Vaginismus is the involuntary tightening of the vaginal muscles which can make penetration painful.
Dilation can be fun! Especially when used with a vibrator on the clitoris.
Dilators are often used after pelvic radiotherapy.
SKIN IS TOO SORE FROM RADIOTHERAPY
If touch is too much – have off limit areas and focus on the parts of the body where you want to be touched.
Apply a suitable moisturiser or something like an Aloe Vera preparation. Check with your healthcare team beforehand.
If you have a partner, they could blow air on the skin with a hair dryer set to “cool”.
PARTNER AND I WANT TO HAVE UNPROTECTED SEX
It is not known whether chemotherapy drugs can be passed through semen or vaginal secretions. If you wish to have unprotected sex during or immediately after finishing chemotherapy, discuss with you medical team as a wash-out period may be recommended.
Remember if you want to have condom-less sex with a new partner it is best to both be tested for Sexual Transmitted Infections (STIs) first.
HORMONES ARE AFFECTING MY MOOD
Mood swings are not conducive to feeling sexy and desirable. If you are with a partner, performing nonsexual intimate acts like kissing, and caressing may begin to help boost your sexual desire by creating a bond between you.
Talk to your healthcare team. There may be options to manage the levels of hormones in your body which may then change how you are feeling.
STOMA MAKES ME FEEL UNSEXY
A stoma pouch collects the digestive waste when a person’s bowels cannot pass stools.
There are clothing and accessories which may help you feel more comfortable about your stoma pouch during sexual intimacy.
Wear a loose tank top, camisole, or lingerie that cover the bag or the beautiful high-waisted lingerie made especially for people with stomas at www.vblush.com. There are opaque pouches so the contents can’t be seen, and ways to make sure it is not dislodged during intimacy. Ask your healthcare team.
HELP
BRAIN IS CRITICISING ME
Think of the intimate time as just having some fun without thinking you have to achieve something such as an orgasm. Refocus on the now and over time, try extending the number of minutes where you are not listening to your thoughts. Mindfulness for intimacy may help.
‘The biggest sexual organ is the mind –it is not just about body parts’
BODY IS CHRONICALLY FATIGUED BUT I DO FEEL HORNY
Try audio erotica. Lie down listen to the words, and use the images made in your head.
Choose toys with longer handles so you can reach your vulva, vagina or clitoris without effort.
NEW WAYS OF HAVING FUN
HAVING FUN
So you’ve reframed sexual pleasure from being an act where penetration and orgasms are the goal, to sexual pleasure being made up of many different ways of experiencing sensations without any expectations.
“There is so much fun to be had”
“Follow your desires, you are valid, you are enough.”
You’ve also given permission to yourself to know that intimacy and pleasure is something completely achievable whilst living with cancer. Whether it is by yourself, or with a partner, finding new ways of having fun can be an incredible journey
SENSUAL MASSAGE
Your skin is packed with erogenous zones all over your body. Sensual massage feels wonderful, it can help to improve the erotic bond between couples, and also for relaxation. So grab some towels, cushions, massage oils, and/or lubricants, turn off the phone and light candles, or dim the lights.
Warm massage oils into your hands before applying. Take your time and use fluid, continuous and circular strokes. For intimate areas, use a silicone-based lubricant. Massage oil can cause irritation in and around delicate skin/genitalia.
LUBES
Lube enhances every kind of sexual activity, increasing glide and sensitivity.
The most body-friendly type of lube is water-based lube.
Things to check:
If you are sensitive, choose a perfect vaginal pH balanced lube. Try ‘Yes Organic (which is also available on NHS prescription through your GP), Sylk or Sutil
Some lube ingredients are harmful to sperm
Make sure your lube is latex-safe if using condoms If prone to thrush, choose a glycerine-free lube. Try Liquid Gold. If want paraben free, with no scent or taste. Try Sh! Pure
Basques, corsets, or floaty negligee or camisoles.
Stockings,
A suspender belt
Hold-ups, or thigh-highs
Bodystockings
WARDROBE
What body parts do you want to highlight? What colours make you feel sexy? How much do you want to cover up – how much do you want to leave to your partner’s imagination?
Nipple tassels
Massage oil for tactile play
Essential oil providing gorgeous smells
BOOKS
Feathers can be used as a sensuous massage tool or for teasing and tickling.
Silk scarves for tying up Feathers eye
Soft eye masks
WATCHING ETHICAL PORN
(paid content, consensual and more diverse)
Make Love not Porn FrolicMe
Pink Label TV Crash Pad series (LGBTQ+ porn) CHEEX
(OnlyFans - @getcheex Instagram)
COURSES
READING EROTICA
Quinn
LISTENING TO EROTICA
Dipsea is an erotic storytelling platform & Jane – diverse voices of modern erotica told by women
Quinn is a sexual wellness app built for women by women
Recommended for learning, support & advice
RECOMMENDED FOR LEARNING, SUPPORT & ADVICE
• Mind The Gap by Dr Karen Gurney
• Come As You Are by Emily Nagoski
WEBSITES
• www.sh-womenstore.com
• www.weareferly.com
• www.shushlife.com/courses/
PSYCHOSEXUAL SUPPORT
• Book a free consultation with The Intimacy Coach –
Charlene Douglas: www.theintimacycoachuk.com/
• Macmillan Psychological Support Team
Don’t worry about finding your perfect sex toy straight away. Start with something small, inexpensive and simple. Here is a brief guide but do ask for help at Sh!
NAME: FINGER VIBRATOR
WHAT IS IT? Tiny & fits on the tip of a finger.
GOOD FOR? If you’re new to sex toys. Great for sensual solo play
VIBRATORSVIBRATORS
NAME: EGG-SHAPED OR PEBBLE-STYLE VIBRATOR
WHAT IS IT? Small hand held smooth pebble with a range of settings GOOD FOR? Trying out different levels of intensity – gentle to super strong, and exploring the whole vulva.
NAME: THE TINY TEASER BUNNY VIBRATOR
WHAT IS IT? Small, quiet with tiny ears for stroking on/around clitoris
GOOD FOR? Exploring masturbation
NAME: WAND VIBRATOR
WHAT IS IT? Slightly intimidating looking but it has amazing powers
GOOD FOR? Getting libidos back as they create powerful orgasms
NAME: RABBIT VIBRATOR
WHAT IS IT? Best selling vibrator in the world with different shaft speeds and bunny modes
GOOD FOR? Penetration with clitoral buzz
NAME: BULLET VIBRATOR
WHAT IS IT? Size of finger with multiple speeds
GOOD FOR? Exploring the erogenous zones around the clitoris and labia and opening of the vagina.
There are so many to choose from but… Width size is the most important factor when choosing your first dildo. Measure how many fingers feel good when you are really turned on.
Here is a selection:
NAME: WIRLY GIRLY 2 SLIM DILDO
WHAT IS IT? Slender, soft and super comfortable dildo
GOOD FOR? First dildo to try
“Don’t be afraidtry things”
DILDOS OTHER TOYS DILDOS
NAME: PRINCESS SILKY DILDO
WHAT IS IT? Double stimulation dildo with clitoral stroker
GOOD FOR? Penetrative and clitoral pleasure
NAME: LOVE BALLS
WHAT IS IT? Weighted exercise balls for the vagina that you squeeze.
GOOD FOR? Regain control and strength so you can feel more during orgasm, and grip during penetration.
NAME: GLASS DILDO
held
WHAT IS IT? Super sleek and sensual hand held dildo
GOOD FOR? Exploring the G-spot and experiencing different temperatures
OTHER TOYS
NAME: SUCTION TOY
WHAT IS IT? Designed to simulate a sucking sensation
GOOD FOR? Experiencing oral pleasure on your own!
NAME: RIDE-ON TOY
WHAT IS IT? Sit-on massager with a clitoral stimulator
GOOD FOR? Requires very little effort. Control the pressure as you sit on it. Keeps hands free for maybe reading erotica!
Remember to keep your toys clean. Use a antibacterial toy cleaner or hand wash with hot water. Leave to air dry.
A WORD FROM THE CANCER COMMUNITY.
“Rememberthatyourpartnerisalso dealingwiththeeffectsofyourcancer. Weweresocarefulofnotwantingto upseteachotherthatittookussome whiletodiscussitproperly.”
“Ifpossibletalktoother peoplewhohavehadcancer andhavedealtwiththese thingsbefore.Alsotalkto youroncologyteam.”
“Ihaverealisedthatcancerisn’ttheendof thesexandintimacyroadforme.Ifanything, ithasmademerealisethatIhavetherightto enjoyingmybodymorethanever!!”
‘Weneedtoendthesilencebehind cancer,sexandintimacy.The conversationsneedtobegin’
“Ihaveanileostomysohavingabag massivelyaffectsintimacyandrelationships. Luckilyhavingabaghasneverbeenanissue butunfortunatelyhavinghadcancerhasbeen anissueforpeopleovertheyears.”
“Pushthroughtheshame,pushthrough theworries,talkandsaywhatyouwant, whatyouneed,youhavealltherightto enjoyyourbodyinwhateverwaysuits you;anyonenotgettingyou,needsto doagoodoldsoulsearching.”
“Diagnosisandtreatmentfor gynaecologicalcancershas leftmeunabletoachieveanorgasm,it’shardtocometo termswiththepartsofmybodylinkedtopleasureandthe creationoflife,areresponsibleforlimitingmylife.”
Educateyourself(fromgoodscientificsources,donottrustDr Google!),findothersonthesamejourney,learnfromthose aheadofyouandteachthosecomingupbehindyou.Don’t beafraidtochallengewhatyou’rebeingtold.Takesomeone withyou-beanactivepartofyourtreatment.”
“Mysexlifeandhighsexdrivehasalwaysbeen akeypartofmypersonalidentity.Themessage Igotatthebeginningoftreatmentwasthatmy sexlifewasover,Ishouldgetmypartneranother hobby.Ihavehadtofightandpushbacktobe heard.Iamstillnotmyself.”
“Begentlewithyourself,takeyour time.Talkingtoothersandmaking connectionsiskeyandsohelpfulbut remembernottocompareyourselfto others.Eachcancerjourneyisunique.”
PART 5
ASKING FOR HELP
“Ask for help with everything. Join a support group”
Talking about sex might make you uncomfortable, but remember it is the job of your healthcare team to take care of all aspects of your health and well-being.
TIPS FOR TALKING TO YOUR HEALTHCARE TEAM
Bring notes. Try and be specific about what your concerns are.
Write down questions to bring with you to your appointment.
Know what your doctor might ask.
“How long have your symptoms been going on?”
“How much pain or distress do they cause you?”
“What treatments have you tried?”
“Has your interest in sex changed?”
Ask for counselling and support services.
You should feel reassured and confident that you are being supported.
Acknowledging that sometimes we do need help from a medical point of view and you are intitled to this help. Psychosexual support is available through some Cancer centres.
ORGANISATIONS WHO CAN HELP
BREAST CANCER NOW breastcancernow.org/ 0808 800 6000
EVE APPEAL eveappeal.org.uk/ 0808 802 0019
JO’S CERVICAL CANCER TRUST www.jostrust.org.uk/ 0808 802 8000
LICHEN SCLEROSUS & VULVAL CANCER UK AWARENESS www.lsvcukawareness.co.uk/
MACMILLAN CANCER SUPPORT www.macmillan.org.uk/ 0808 808 0000
MAKE 2NDS COUNT www.make2ndscount.co.uk/ 0131 357 4811
SEX WITH CANCER www.sexwithcancer.com/
SH! WOMEN’S STORE www.sh-womenstore.com/ 03000 444 005
SHINE CANCER SUPPORT shinecancersupport.org/ SHUSH LIFE! www.shushlife.com/
TARGET OVARIAN CANCER targetovariancancer.org.uk/ 020 7923 5475
THE MENOPAUSE CHARITY www.themenopausecharity.org/ TREKSTOCK www.trekstock.com/ 020 4541 7601
VISIBLE VULVAS
Insta: Visible Vulvas
BLACK WOMEN RISING www.blackwomenrisinguk.org
This booklet has to live in the medical world of which they need to be accepting of the content.
This will in turn encourage Health Care Professionals (HCPs) to share with patients and amongst themselves.
It is hoped that when both parties read this invaluable resource, the conversation about cancer, sex and intimacy will begin.
