Sex after cancer

Much research has been carried out about the negative impact cancer can have upon sexuality and intimacy. Sexual changes to the body can cause significant distress to both the person with cancer and their partner, and is often the most negative aspect of the disease upon the well being of people with cancer.

Previous research has only concentrated upon the physical changes that can occur to a person’s sexual health and well being, such as erectile dysfunction, vaginal dryness/tightness and body image issues.

A study, funded by Cancer Research UK, compared the sex lives of 6,699 older people including 561 who had been diagnosed with cancer. They found that 49% of the people who has cancer enjoyed as much frequent sex as the control group. The research did not state what type of cancer the participants had or their sexual orientation.

However, almost 20% of women and 33% of men who had survived cancer reported feeling dissatisfied, compared with around one in ten women and a fifth of men of the same age who had not had cancer.

How cancer impacts upon someone’s sex life also depends on the type of cancer they have, such as gynaecological cancer, breast cancer, bowel and bladder cancer and prostate cancer.

The impact upon younger people is often neglected, especially those who experience an early menopause as a result of treatment and the effects of hair loss on body image. This can affect how they make relationships and overcome loss of fertility.

Very few studies concentrate upon ways in which people can renegotiate sexual practices following cancer, mainly concentrating upon cancer which affects sexual or reproductive organs such as prostate, testicular, breast, ovarian, womb and gynaecological cancer.

It is predominately focused on heterosexual people with cancer, disregarding the sexual experiences of lesbian, gay, bisexual and trans gender individuals, despite them experiencing sexual problems following cancer.

The impact on fertility may not be an issue for some people, others may want to have a family. Also body image is hugely important to many people and losing your hair or being left with scars on your body can greatly affect your body confidence and relationships.

There is no normal sex

The act of sex is more than just “ sexual intercourse”, sex is whatever feels pleasurable and is consentual. For some this may be penetrative sex, other people enjoy non penetrative sexual acts of which there are so many, some may involve pleasurable pain, domination or submission, therefore having an open mind and knowledge of the ways in which people enjoy sexual intimacy and pleasure is important.. The opinion that coital sex is normal sex and anything else is just a poor substitute is often commonplace amongst both patients and healthcare professionals, often due to a lack of training, their own sexual experience, sexual orientation or subjective views surrounding sex.

However I have noticed over the past few years this is slowly changing with more inclusive training being given to healthcare professionals and literature given to patients which is the way forward in ensuring everyone is able to access good advice about enjoying sex with/after cancer.

A study by Ussher et al (2013) explored renegotiation of sex in people with cancer and their partners, and found that 70% of the participants reported the exploration of non coital sexual practices such as masturbation, mutual genital touching or oral sex and considered these to be just as satisfying as coital sex.

The themes for renegotiating sex includes:

• Not just penetration: exploring non coital sexual practices, such as masturbation, mutual genital touching or oral sex
• Embracing intimacy: cuddling, kissing, non coital touching, massage, spending time together, caring or talking to each other
• Using sexual or medical aids such as vibrators, lubricants, dilators, Viagra, penile pumps injections or implants.
• Communication: Talking to each other about sexual concerns and finding ways in which to overcome them.

Non coital sex

For those people who had enjoyed penetrative sex, sexual satisfaction was still achieved through foreplay or heavy petting, or “outercourse”. In some cases, non coital sexual activities were described as being more pleasurable and satisfying than previous experiences of coital sex prior to having cancer.

Some couples found that their sexual relationship got better after active treatment because they spent more time on foreplay, something they neglected prior to treatment.

Intimacy

Many couples considered intimacy, including cuddling, kissing, non genital touching, massage, spending time together, caring and talking, to be more important than penetrative sex.

Spending time exercising together can improve both your intimacy and minimise side effects of treatment, in addition to preventing recurrence of disease . Research by Macmillan Cancer Support (2012) found that 4 out of 5 cancer patients said their GPs (82%), oncologists (77%) and clinical nurse specialists (79%) did not speak to them about the importance of being physically active once they had completed their treatment.

A number of the couples talked of only learning what intimacy is after cancer and realising that sex is not the most important thing in their relationship. It made them realise that intimacy had not featured in their sexual relationship prior to cancer.

Intimacy wasn’t described by all participants as being of a sexual nature but as “being able to be there mentally and emotionally”.

Many couples placed relationship closeness as a result of sex and intimacy as central to coping with a diagnosis of cancer and coping with the impact of the disease.

Several younger people described their sexual relationship as part of their recovery and survival, that sex was a fantastic distraction and a way of coping to help deal with emotions such as fear, anxiety and the unknown.

Renegotiating sex and intimacy can also serve to maintain normality when faced with cancer, providing reassurance that life was not “always about the cancer”

Sex serves to reassure the person with cancer that they are normal and challenges the perception of healthcare professionals that sex during or after cancer is not important which can leave couples reluctant to raise their fears about their sexual relationship.

For people who have had head and neck cancers, kissing can be an issue due to a dry/sore mouth, lack of saliva, lack of sensation or tooth/gum removal. Joselyn Harding is a dental hygienist who set up Mouthcare for Patients After Cancer, offering practical advice.

Vaginal Dryness

Vaginal dryness and irritation leading to painful sexual intercourse is a common complaint in women who have had cancer. Using a good lubricant and vaginal moisturiser can help, especially if you are unable to use topical vaginal oestrogen products.

It’s really important to be aware of the ingredients of your lubricant as some ingredients can cause thrush even some available on prescription, and also ensure that you’re using a product that is designed for internal use.

Often recommended and prescribed by GPs and HCPs, KY Jelly and other waterbased products contains both parabens and glycerin, which can cause thrush. KY jelly also has a higher osmolality than the cells in the body, drawing moisture out of the walls of the vagina rather than hydrating them, exacerbating vaginal dryness, not helping it. This can leave the body vulnerable to infection, such as thrush which is often more prevelant after cancer treatment.

Some vaginal moisturisers available on prescription from your GP may also cause vaginal irritation or infection as many contain glycerin, glycols and parabens, none of which have a place inside our vaginas or on our vulvas which can cause thrush and alter the pH of the vagina.

YES organic lubricants are odourless, tasteless and feel sensuous on the skin and don’t leave sticky residues behind.

They both offers nourishing qualities that are kind to the skin, rapidly relieving dryness and discomfort and is pH balanced to maintain good vaginal health.

Using an oil based lubricant first and applying a water based one on the top creates a double glide affect, which feels more comfortable and can help sex last longer. However, oil based lubricants are not condom compatible so stick to water based lubricant if you are using them.

YES also come in handy applicators making it easy to get the lubricant right inside your vagina.

Cancer treatments impact upon the level of vaginal lubrication you produce so using YES VM is ideal for restoring moisture and the pH balance of your vagina. Coming in handy 5ml dose applicators it lasts up to 3 days per application and being bio-adhesive means it releases moisture where needed.

Avoid using products that are not designed for the vagina. Just because a food stuff can be eaten does not mean it is good for your vagina health. The same goes for products in your bathroom cabinet too.

It is important to check the ingredients in feminine hygiene products as these can all exacerbate vagina health issues too. From perfumed condoms, scented menstrual products, intimate washes and sprays, our intimate health is constantly being targeted by brands promoting sexual wellness through the use of these products, many of which are detrimental to our bodies and sexual pleasure.

Sex toys

Many couples rejected the idea of non coital sex, choosing instead to explore techno medical aids, such as Viagra, penile injections, implants or pumps. However, several participants reported that some of these often led to less than satisfactory sex.

Using a penis pump can help improve erectile function and enable you to enjoy sex.

However, some couples introduced the use of sex toys into their relationships. There are so many sex toys to choose from, both for men and women and they are an excellent way to enjoy sexual pleasure even when full penetrative sex is not possible.

Sex Toys for People with a Vagina and Vulva

If you find you are struggling to orgasm, using a small bullet vibrator on your clitoris during penetrative sex, foreplay or just for solo play can really help. Not just ideal for clitoral stimulation, bllets are great to use around the vagina entrance, along the shaft and around the ehad of the penis and on nipples too.

If you feel embarrassed or unsure about tryign a sex toy, choosing a bullet is a great way to start because of their small size and ease of use.

Even if a person is unable to get an erection, they can still pleasure their partner by using a sex toy to maintain intimacy between them.

If you are concerned about using sexual lubricants, choose YES organic lubricants which are natural plant based sexual lubricants, pH balanced to your vagina, free from irritating ingredients, perfume, taste or colouring.

If penetration is not possible, using a clitoral vibrator is a great way to enjoy clitoral stimulation and orgasms or as an alternative to penetrative sex.

Sex toys for Vagina/Vulval Health Issues

Vibrators, such as Picobong Zizo, OhMiBod Cuddle, Slinky Pinky and vaginal lubricants are excellent for people who experience vaginal atrophy/dryness following chemotherapy/radiotherapy and/or post operative scarring to help promote healing of the tissues, ease vaginal tightness which can make sex feel painful or uncomfortable and improve elasticity of the vaginal walls.

Often medical dilators are prescribed to help vaginal tightness but many people find these incomfortable to use. The Inspire Silicone Dilator Kit offers 5 graduated dilators made from velvety soft silicone which are extremely flexible, unlike hard medical dilators and very gentle on the delicate skin of the vulva and vagina.

The easy to use loop handle makes them comfortable to hold, and the gentle tapered shape and varied sizes allows you to increase the insertion size at a rate that is comfortable to you. You can also fit the Slinky Pinky through the loop handle which will make the dilator vibrate.

Decreased Sexual Sensation

Using a body massager such as Doxy can help when a woman experiences desensitisation in her clitoris or vagina as a result of surgery or radiotherapy. Body massagers offer strong vibratory power and are excellent for easing aches and pains all over the body too.

The Satisfyer Pro 2 is an incredibly powerful clitoral stimulator that uses pulsation waves to gently caress and suck your clitoris, you just place it over your clitoris and allow the waves to gently tease your clitoris. It is ideal for those struggling to orgasm due to decreased sexual sensation as it will not desensitise your clitoris after prolonged use, something which may happen when using a classic vibrator.

The Satisfyer Pro Plus Vibration combines air pulsation wave stimulation with vibratory power whcih creates a completely unique sexual sensation.

Sex Toys for People with a Penis

There are several sex toys which help people gain an erection and offer pleasurable sexual stimulation such as vibrating toys or penis-pumps. Often a person does not require a full erection to enjoy sex.

Penis sleeves are great when penetrative sex is not possible as they simulate the feeling of a vagina through textured inner sleeves. They can be helpful when a person has limited manual dexterity and finds it difficult maintaining mutual masturbation.

Vibrating toys which can be positioned over the end of the penis or around the shaft of the penis, such as Fun factory Cobra libre v2, Rocks Off Hand Solo 7 or Pulse Solo Essential even when flaccid, can still produce pleasurable sexual stimulation.

Constriction rings can help maintain an erection in addition to vibrating constriction rings offering clitoral stimulation.

Sex Toys for Couples

Many couples buy sex toys to use together and some sex toys designed for couples are a great way to share the pleasure whatever your gender.

Couples toys such as the Pulse III Duo are ideal for sex play when a person has erectile dysfunction as it offers sexual stimulation to both partners.

Several couples in the study said they had become more adventurous in their sex play, experimenting with sex toys and different techniques to produce sexual pleasure, which in turn, increased their intimacy and trust in each other.

Communication

Communication is important within any relationship, whether you have cancer or not. Participants talked about being honest, and allowing their partner to ask anything, discussing needs and desires, being open to what sexual activities they could explore, what they did not want to try and how loss of coital sex made them feel.

One woman described the “open” sexual communication with her female partner enabled them to explore and try new sexual activities.

Other couples who said there was an absence of sexual renegotiation were more likely to describe a lack of communication about sex, saying it was never discussed before cancer, and was very unlikely to be discussed now. One man said that he and his male partner found it very difficult to deal with. Others did not want to upset their partner by discussing sex with them.

Those couples with a close relationship prior to cancer were more successful at renegotiating their sexual relationship.

Supportive partners had a positive effect upon sexual intimacy which was hugely beneficial. Losing your hair doesn’t just affect women but men too, especially younger people so overcoming body confidence issues is important.

Scars left from cancer treatment and surgery can impact upon the way you feel so supportive partners are essential to helping you regain your body confidence and embrace your new body.

Many partners of women who had undergone a mastectomy or hysterectomy demonstrated the importance of acceptance of bodily changes, telling their partner they were still beautiful, touching and cuddling them, which in turn, benefited their sexual relationship.

Great Sex without Intercourse

For people who have cancer, renegotiating sex involves being adventurous and explore all avenues of sexual pleasure, whatever sexual orientation you have. Great sex without intercourse can often lead to increased sexual pleasure and intimacy than achieved prior to the diagnosis.

Healthcare Professionals need to talk about Sex with their patients

Healthcare professionals need to be more open minded when talking to people about renegotiating sexual relationships, rather than fixating on coital sex as being normal sex and anything else as not normal.

Acknowledging that people within the LGBQ+ and kink communities enjoy sexual intimacy and pleasure in a wide range of ways which may be impacted upon by cancer treament is important. There is more awareness and training taking place within healthcare to address this so the advice being offered is inclusive to everyone, whatever their sexual orientation and gender.

For many couples, coital sex is not always important or part of their sex life but discussing other ways in which to achieve sexual satisfaction and intimacy can help them renegotiate their sexual relationship without loss of pleasure or satisfaction.

Offering information about the wide range of sexual activities available to maintain intimacy and sexual satisfaction, can greatly improve the speed at which a couple gets back to their normal relationship, through a few changes to their sex play, which in turn, can lead to greater intimacy and increased sexual satisfaction.

Much of the sex information in cancer leaflets given to patients is very generic and aimed at heterosexual people, such as use lubricant or buy a vibrator. Many who do recommend using a vibrator don’t advise what would be suitable, what it should be made from, how they should work, what function they should have or where to buy it. The same goes for sexual lubricants, what do they contain and are they pH balanced?

Many people are too embarrassed to buy products from high street shops, don’t shop online or even own a computer.

When prescribing a sexual lubricant, HCPs need to be aware of what some of them contain, such as glycerin which promotes the growth of thrush which can be more prevelant after cancer. When advising their patient to buy a commercial lubricant they need to tell them to check the ingredients for glycerin and parabens as these both cause imbalance to the vagina flora leading to infection or irritation, exaccerbating the problem further.

If your GP prescribes a sexual lubricant, ask them to check the ingredients, especially if you have sensitive skin or suffer from thrush or other vagina infections. If you experience any problems such as itching, burning or develop a vaginal discharge, stop using it and ask to be prescribed something different.

You need to take care what you are using and avoid any which may contain substances which may cause an allergic reaction.

Always choose a pH balanced lubricant to avoid upsetting the vagina flora and increasing your risk of developing thrush or bacterial vaginosis.

Many HCPs appreciate having our health brochure to give out in clinics and some even keep sample products in their practices to show their patients. They also direct their patients to our website articles where they can find more practical information about enjoying sex after cancer and watch our videos too.

There needs to be much more education to help HCPs talk about sex in a practical way with their patients and included in medical school training.

At Jo Divine we believe that sexual health and sexual pleasure go hand in hand and have created a health brochure with suitable products to help people with sexual issues.

Working with medical professionals, we hope to encourage patients and HCPs alike in talking more freely about sexual problems.

A health issue doesn’t mean your sex life will have to stop!

Our Jo Divine catalogue also contains male sex toys suitable for overcoming sexual side effects of cancer too. Please call or email for a copy.

Helpful Blogs

Having spoken at the National Forum of Gynaecology/Oncology Nurses Survivorship Conference in November 2015 I wrote this blog for ChrisCancerCommunity about how we can get healthcare professionals talking about sexual issues with their patients. Many of the doctors and nurses at this conference are doing an amazing job but some still feel uncomfortable about discussing sexual issues with their patients or are unable to offer practical advice beyond their medical training.

Chris’ Cancer Community : http://www.chris-cancercommunity.com set up by the amazing Chris Lewis offers fantastic advice, help and support for those going through cancer treatment and beyond.

I am working with Womb Cancer Support, a charity run by Kaz Molloy and wrote an article about sex and womb cancer for her website to help women and their partners enjoy sexual pleasure and intimacy after treatment.

I gave a talk at the Ovacome Wellbieng event in March 2019.

We support Vulval Cancer Awareness.

We have a YouTube video about enjoying Sex after Womb Cancer and Sex after Breast Cancer

I have been invited to speak` about promoting good sexual health post treament at the UK Oncology Nursing Society Cancer and Sexual Health study day being held at Guys Hospital in February 2020. Elvin Box, mentioned below will also be speaking about the impact of Prostate cancer upon his sexual function, intimacy, pleasure, mental health and relationship too.

There are some amazing women blogging about their experience of breast cancer and these are just 2 of my favourites who offer practical advice to the many women who have breast cancer.

This is an important message we need to get across to both the general public and healthcare professionals that cancer doesn’t know your age as all these amazing people who blog about their experience are young.

The fabulous Jo Taylor : www.abcdiagnosis.co.uk

Dr Elizabeth O’Riordan and Woman of the Year : www.liz.oriordan.co.uk

Being a breast surgeon who has had breast cancer Liz has written ‘The Complete Guide to Breast Cancer’ with Professor Trisha Greenhalgh, a fellow doctor and breast cancer patient due for release 27th September 2018

Becki is 30 and blogs about coping with the daily side effects of Osteosarcoma even though she is 7 years in remission : www.copingwiththebigc.co.uk. She has also set up www.cancerandfertility.co.uk to raise awareness about all the fertility options she wasn’t informed about before her treatment.

Lydia Brain was diagnosed with a inflammatory myofibroblastomic tumour in her uterus at the age of 24. Undergoing surgery she was put into a surgical menopause and is infertile. As an advocate and campaigners for GRACE and Trekstock champion she is using her experience to raise awareness about having womb cancer as a young woman, recognising the symptoms and why HCPs need to take notice of your symptoms whatever your age. You can follow Lydia @lid_jar

Karen Hobbs blogs at “quarterlifecancer.com” about having cervical cancer. She also has an amazing comedy show “Tumour Has It” which takes you on her journey of having cervical cancer at the very young age of 24.

Prostate Cancer Advocates and Campaigners

I contacted Elvin Box on twitter after reading his wonderful article in the Telegraph in November 2018 where he talked about the impact having prostate cancer has had upon his physical, mental and sexual wellbeing and his relationship.

At Jo Divine we frequently advise men, and their partners, who have had prostate cancer, struggling to regain their sexual function to enjoy sexual intimacy and pleasure yet have been little or advice about how they can regain their sex life which is why it has been so good to meet Elvin.

We have never met a man who is willing to be so honest about their sexual experience of prostate cancer yet Elvin has done this through a wide range of media platforms to raise awareness and educate not just men but their partners and healthcare professionals. He has helped and continues to help so many people and I am so grateful we connected via twitter and finally got to meet face to face earlier this year, one of the good aspects of social media within the world of cancer care and support.

At 57 Gogs Gagnon became one of the millions of people with a prostate to be diagnosed with prostate cancer and kindly sent me a copy of his book to review. After his surgery and recovery he decided to share his story to inspire others to advocate for their health. Gogs has included my testimonal on the back of the next edition of his book.

“Such a pleasure to read an honest account of the impact Prostate cancer has upon physical, mental and sexual health and relationships. In the course of my work helping couples to regain their sex lives and educating healthcare professional to talk about sex, I have met and spoken to few men who are happy to share their experience in the way Gogs has done. By sharing his journey he is helping so many men and their partners who may struggle to enjoy a fulfilling life and educating healthcare professionals, who may not consider the emotional and intimate issues that couples frequently face once treatment is completed. The patient expert is the way forward in educating and informing other patients and healthcare professionals”

“ Prostate Cancer Strikes : Navigating the Storm” by Gogs Gagnon Granville Island Publishing ISBN 978-1-9269919-4-8

Helpful Reading

Dr Kathleen Thompson has documented her journey through having breast cancer in her book, offering advice, tips which can help so many other women negotiate the changes to their life both physically and mentally that having a diagnosis of breast cancer can bring. She has written about the do’s and don’ts of her treatment, things that she wished she had said or done, things she did say and do and how she became an expert, as do so many people when they have a cancer diagnosis.

A brilliant read for women with breast cancer and their families and friends.

From Both Ends of the Stethoscope: Getting through breast cancer-by a doctor who knows- Dr Kathleen Thompson, published by Faito Books (4 Jan. 2016) available on kindle and in paperback

Useful websites

Macmillan Cancer:www.macmillan.org.uk
Cancer Research UK:www.cancerresearchuk.org
The Royal Marsden:www.royalmarsden.nhs.uk
The Christie Hospital:www.christie.nhs.uk
The Eve Appeal:www.eveappeal.org.uk
Breast Cancer Care:www.breastcancercare.org.uk
Clic Sargent : www.clicsargent.org.uk
Trekstock : www.trekstock.com
Shine Cancer Support : www.shinecancersupport.org
GRACE: Gynae-Oncology Clinical Research and Excellence: www.grace-charity.org.uk
Womb Cancer Support : www.wombcancersupportuk.weebly.com
Ovacome : www.ovacome.org.uk
Jo’s Trust : www.jostrust.org.uk
Ovarian Cancer Action : www.ovarian.org.uk
Young Womens Breast Cancer blogspot : www.youngwomensbreastcancerblog.blogspot.co.uk
The Daisy Network :www.daisynetwork.org.uk
The Dovecote:www.thedovecote.org
College of Sex and Relationship Therapists : www.cosrt.org.uk
Beating Bowel Cancer : www.beatingbowelcancer.org
Prostate UK : prostatecanceruk.org
Testicular Cancer : orchid-cancer.org.uk
Mouthcare for cancer patients : www.mouthcareforcancerpatients.co.uk