Sexuality, Body Image, Relationships and Ovarian Cancer

This booklet is for people whose sexuality, self-image, self-esteem and relationships have been affected by a diagnosis of ovarian cancer. Research has shown that the impact of ovarian cancer on sexuality is not adequately addressed and that people lack the support to empower themselves to address their sexual changes or concerns.

A recent study by the University of Melbourne and Ovarian Cancer Australia shows that 72% of people were not asked by health professionals about sexuality issues during their treatment, yet 60% would like to be asked.

Talking about sex, intimacy and sexuality may feel awkward, confronting and sometimes embarrassing, especially after a diagnosis of ovarian cancer. You may find you have to rethink, reshape and redefine what sexuality and intimacy mean for you after having cancer treatment.

For inclusivity this booklet will use the term ‘people impacted by/with ovarian cancer’ to include people of all gender identities who are impacted by ovarian cancer and their partners, family and friends, carers and significant others.

Ovarian Cancer Australia wants you, whatever your gender identity or sexual orientation, to feel safe to openly discuss sex and intimacy with your treating medical team or other trusted health care professionals, at any stage of your illness. Issues around sexuality can be complex so we begin this booklet with some general information on sexuality and the reproductive system before specifically discussing the impact of ovarian cancer on sexual functioning and intimacy. We hope this booklet provides the information and support you need to begin those conversations and gain the answers you want.

Quotes in this booklet that are not attributed are from people who have received a diagnosis of ovarian cancer. At their request, we have not included their names.

Sexuality is not just about having sexual interactions with others or about how often you have sex. You are a sexual being in your own right and your sexuality is not based on being in a relationship.

Sexuality is largely about the way people express and feel about themselves sexually. It relates to the emotional, spiritual and physical sexual feelings, thoughts, attractions and behaviours you may have towards other people and within yourself. Body image and self-esteem also play a key role.

You can express your sexuality in many ways:

• hugging

• kissing

• holding hands

• body language and eye contact

• listening to and sharing views with someone

• the intimate expression of sex (hugging, kissing, holding hands, massage)

• physical sex (masturbation, foreplay, penetrative or oral sex)

• thinking about sex and sensuality

• massage

• clothing you wear

• how you style your hair and makeup

• the ways you walk, speak and move.

Sexuality is about your overall sexual health and wellbeing. Caring for your sexual self as much as you do your physical, emotional, mental and spiritual health is important. Your sexuality can also be influenced by your culture and society, as we discuss in this booklet.

Sexuality is an everchanging lived experience that means different things to different people at different stages of their life. It’s whatever you want it to be right now.

What does ‘having sex’ mean?

Research shows when asked about what ‘having sex’ is, most people think about penetrative sex (intercourse). But it is far more than that.

Sex is what feels good for you, whether you are sexually pleasuring yourself or your partner/s. Touching each other or yourself, kissing, hugging, snuggling, massage, lying beside your partner and chatting, using sex toys alone or together with a partner are among the options that give sexual pleasure.

We discuss all these options and others throughout the booklet.

What is intimacy?

Intimacy is closeness between people in our personal relationships. It is about caring for and loving someone else as well as being cared for and loved by someone. It means feeling comfortable with someone – becoming vulnerable and trusting them. This can take time.

Health professionals often describe 4 main types of intimacy:

• physical

• emotional

• spiritual

• mental.

Emotional, mental and spiritual intimacy can be separate from physical or sexual intimacy. However, all 4 types can overlap and play an important role in your overall intimacy with a partner.

What affects your sexuality and intimacy?

Sexuality is a natural drive that is with you from birth, but it can be influenced by many aspects in our lives. People’s sexuality can be positively and negatively affected by what happened to them as a child, into their teenage years and beyond. Sexuality and our sexual attitudes are shaped by our parents and family, peer group and teachers.

Factors affecting our sexuality and attitudes towards sex include:

• environment, family and upbringing

• societal expectations

• friends

• physical and intellectual disabilities

• ageing and menopause

• media, including social media

• acute, chronic and terminal illness and side effects of treatment

• pain

• side effects of some prescription drugs, recreational drugs and alcohol use

• initial and past sexual experiences

• past and present trauma

• mental health issues.

Being sexual is an incredibly intimate and vulnerable act and maintaining consent and a sense of safety and enjoyment around sexual activity is important. While some people find talking about sex and sexuality fun, helpful and rewarding, many find it an awkward and sensitive topic.

It can bring up feelings of:

• embarrassment

• shame

• guilt

• fear

• uncertainty

• past bad experiences with sex or sexual abuse

• inadequacy.

Talking about sex in some cultures is not acceptable or may even be taboo. Language barriers and the need for an interpreter may hinder talking openly about sex with your medical team. Sexual health information on relationships and cancer has historically focused on relationships between a man and a woman.

Lesbian, gay, bisexual, transgender, queer or questioning and intersex (LGBTQI) people have not been well represented, leaving them feeling unheard and sometimes invisible. This prevents many LGBTQI people asking for help about their sexual concerns.

Society and social media influences often suggest being sexual and having sex comes naturally to all of us. We should instinctively be ‘good’ at it and enjoy it all the time. We are bombarded with images of ‘beautiful’, unscarred, athletic, toned, healthy and glowing bodies. These images are unrealistic, stereotypical and restrict our ability to express and talk about our own sexuality, especially when feeling unwell. You may find it hard to discuss your sexual feelings or talk about sexual pleasure. Worrying more about pleasing your partner than considering your own sexual enjoyment and desires can also hinder communication.

Other things that may stop us communicating about sex include:

• insecurities about our bodies, sexual desires and preferences

• fear of rejection or not ‘performing’ well

• failing to pleasure our partner.

Yet research tells us that talking about sex is key to having better sex and feeling more in control over your sexuality. Talking to your partner, a trusted health professional, sex counsellor or sexologist about your sexual concerns and desires can enhance your confidence and sex life.

Feeling comfortable to speak to health professionals about sex and sexual health is crucial. Cancer patients report that sexual problems are infrequently brought up by their healthcare providers (oncology doctors, nurses and radiation oncologists). But many patients want their medical team to address the impact their diagnosis and treatment may have on their sexuality and sex life.

Tell women their genitals will look different and sexuality will change.

The reasons health professionals do not comfortably talk about sex with their patients are many and varied. They may not see sexuality as a priority for cancer patients. Or they lack the knowledge, skills, language and professional experience to talk about sex. But this does not mean you cannot talk about sex if you have concerns. If those you ask do not have the answers, ask them to refer you to health professionals who will be able to help. See the section titled ‘Where to from here?’.

I always remember another woman with ovarian cancer said to me “the information about sexuality does not get offered to you, you have to advocate for your own sexual health and functioning.

Since I have finished the treatment and trying to get to my normal life, I would now love to seek professional help, counselling or some sort of the education/advice in this field. Not sure as to where to seek it as well as feeling embarrassed to ask for referral.

The changes your cancer, its treatment and side effects may bring can affect your quality of life. Some are short term; some take longer to resolve; others are permanent. Write a list of questions to discuss with your medical oncologist, nurses, physiotherapist, radiology oncologist or social worker.

We suggest:

• What type of sexual problems are common when having treatment for ovarian cancer?

• At what stage of my cancer and its treatment are the problems likely to happen?

• What will my body look like after surgery? Will I have scars?

• What will my body feel like? Will my pelvic area, vagina and clitoris feel and respond to sexual intimacy differently?

• What other cosmetic changes might I notice during my treatment, such as hair loss?

• What can help with the physical changes caused by treatment?

• Will cold caps help with hair loss caused by chemotherapy?

• How long will the changes last? Are any of them permanent?

• Is there any way of preventing sexual changes during my treatment and afterwards?

• What can be done to help with any sexual problems I may have?

• Are there written resources, support groups and other services that can help me with any sexual concerns?

• Will I still be able to get pregnant after my treatment? If not, can I freeze eggs, embryos or ovarian tissue or do anything to prevent infertility?

• Do I need to use contraception methods during my treatment?

• Are there any times during my treatment that I need to avoid having sexual intercourse or masturbating?

• What side effects can I expect from menopause?

• Is there support for people going through menopause and its side effects?

• Can you suggest ways to help me improve my sex life during and after my treatment?

• Are you able to refer me to a professional sexual health counsellor, a female health physiotherapist or sexologist?

Learning the basics about anatomy, hormones and sexual responses can help you to understand your own individual sexuality and body before and after cancer treatment.

Female and male sexual/reproductive systems are made up of internal and external organs. As well as the practical function to reproduce, our sexual organs also play a role in our sexual responses, sexuality, relationships and body image.

The female sexual/reproductive organs

Female sexual function is complex. The female reproductive system (see diagram) enables the body to:

• give and receive sexual pleasure

• become pregnant.

However, many females (between 35% and 50%) suffer sexual problems such as infertility and difficulties having orgasms/penetrative sex. These statistics are higher among people with ovarian cancer and its treatment (between 50% and 70%). Because of this it is important to increase awareness about the physical process of sexual problems.

This will help improve support for those with ovarian cancer around their sexual concerns. The main function of the female sex organs is to:

• produce eggs (ova) to be fertilised by sperm to make a baby

• provide a suitable environment for the developing fetus and the right conditions for the birthing process.

CLITORIS

The clitoris is situated above the urethra and has over 8000 nerve endings. That is 3 times more than the penis! Most of the clitoris is not visible, but stimulating the clitoris is key to a female’s sexual pleasure.

The clitoris is larger than we are led to believe, and the part we can see is just the tip of the clitoris and only pea sized. But it then spreads from here into the shaft and crura (roots and legs), which reach about 10–12 cm.

ORGASM

Sexual pleasure has historically been a taboo subject, and this has meant a lack of research into female sexuality. Most women find it difficult to orgasm through penetrative sex alone, unless it is done in a way that enables clitoral stimulation.

Depending on where you are stimulated, orgasm can be felt within your clitoris, within the vagina and/or around the anal sphincter, or elsewhere in the body. You may feel pulsing contractions at different points. The clitoris is extremely sensitive to touch, which can be enjoyable, but it can also become so sensitive to touch that it becomes almost unbearable to receive clitoral stimulation during orgasm.

Some people say they have never had an orgasm, but this does not mean it can’t happen. Many say it is easier to try to orgasm through self-exploration rather than partnered sex. Find time to relax and when you feel ready begin to explore your clitoris and massage the outside and inside of your vagina with your fingers or a sex toy. Take as long as you want and be adventurous. Never feel ashamed of working out what turns you on. Everyone deserves to enjoy sex.

Interesting Fact

The G-spot (Gräfenberg spot) is an area of the vagina claimed to impact a vaginal orgasm (not to be confused with a clitoral orgasm). The clitoral orgasm is better understood and happens due to stimulating thousands of nerve endings in the clitoris and labia. There is no conclusive evidence to prove that stimulating the G-spot causes more intense orgasms. This is why we recommend selfexploration of the inside and outside of your genital area rather than searching for that one ‘elusive’ spot that has no guarantee of making any difference to your pleasure.

The male reproductive system (see diagram) enables men to:

• make, store and release semen

• give and receive sexual pleasure

• produce sex hormones, which allow a boy to develop during puberty

Male and female bodies produce hormones that have different functions in the body. Hormones carry information between different cells in the body. The sex hormones control several important functions in the body including growth and development during puberty and reproduction.

Female sex hormones

The main female sex hormones are:

• oestrogen, which keeps the vagina moist and helps boost your sex drive, along with several other functions during puberty and maintaining bone strength

• progesterone, which controls reproduction

• testosterone, which exists in small amounts in females and helps boost your sex drive.

These hormones are mostly produced in the ovaries (a small amount is made in the adrenal gland at the top of the kidneys). Production ceases when the ovaries stop producing eggs and your period stops (menopause).

Ovarian cancer and its treatment can affect your hormones and cause an early menopause (also called ‘surgical menopause’) (see the section on menopause later in this booklet).

Male sex hormones

Testosterone is produced mainly in the testicles and in small amounts in the adrenal glands. Testosterone is responsible for the male reproductive organs developing and for other sexual characteristics such as facial hair and a deeper voice.

Learning about how your body works, feels and responds to touch and sexual intimacy may help you feel more comfortable and confident having intimate relationships. This may be especially true for someone who has had ovarian cancer and its treatment.

What affects your sexual responses

Your body’s sexual responses are unique to you. They can change dramatically during illness, especially during and after treatment for ovarian cancer. Your sexual desires (libido) and sexual response are influenced by several factors, including:

• physiological (e.g. the body’s health and fitness levels, sex hormone levels, levels of rest, past surgeries, scars)

• psychological (e.g. levels of personal stress, anxiety and depression, body image, relationship satisfaction, work and study load)

• contextual (e.g. the setting for sex, time of day or night).

It also relies on your own personal needs and desires to show love, create intimacy and to give and receive pleasure. Our brain and its thoughts trigger all our sexual desires and interest and our sexuality through our:

• imagination (e.g. sexual fantasies)

• memories (e.g. happy and pleasurable sexual memories as well as painful or

  abusive sexual memories)

• feelings (e.g. relaxation and joy, or exhaustion, stress, depression or anxiety).

Sexual response cycle

There are 4 stages to the sexual response cycle:

1. excitement, which can last minutes or hours and prepares our body for sex

2. plateau, which brings a more intense excitement and further changes to our body

3. orgasm, which is the climax of our sexual excitement

4. resolution, when the body returns to its normal state and relaxes.

Our senses (taste, touch, smell, hearing, sight) also create our thoughts, sexual desires and responses. Sexual desire and interest can change over time. While each person is unique, generally, everyone goes through these 4 stages of sexual response cycle.

It is unlikely both partners will reach orgasm at the same time. The intensity of the body’s response in each phase, as well as the amount of time spent in each phase, will vary between individuals. Talking about this with your partner, if you have one, can help you both understand each other’s bodies and allow you to both focus on your responses, along with your joint and individual sexual enjoyment. Knowing your partner is enjoying the experience usually adds to your own sexual responses and pleasure.

This same cycle of sexual responses also applies when you pleasure yourself (masturbation). You don’t need a partner to experience each stage.

INTERESTING FACT

There are more than 8,000 nerve endings in the tip of the clitoris alone. That is double the number of those in a penis! And the potential enjoyment does not end there. This tiny erogenous zone can spread this feeling to 15,000 other nerves in your pelvic area. This probably explains why some describe an orgasm as a total body experience.

Masturbation

Masturbation means touching, rubbing, stroking, massaging (stimulating) the genitals (clitoris, vulva, vagina), or other areas of your body (breasts, nipples, abdomen) for pleasure. You can use your hands and fingers or sex toys or other aids. Many people feel comfortable with masturbation, and it is a normal part of their sexuality. However, others feel unsure or guilty about masturbating. In many cultures or religions, masturbation is taboo or a ‘sin’.

However, research has proven masturbation is a natural and safe way to explore what helps you enjoy intimacy and sex.

Masturbation won’t make your cancer worse; nor will it affect any treatment you are having. It won’t harm you and nobody needs to know if you masturbate or not. In the privacy of your own home, you are free and entitled to do whatever makes you happy and does not hurt anyone else. Masturbating is a way of helping you:

• regain sexual pleasure during and after cancer and its treatment

• sleep and relieve stress from your body

• explore what excites you and what makes you feel good

• reach climax (orgasm) if that is what you are aiming for.

A diagnosis of ovarian cancer and its treatment often changes a person’s sexual function as well as associated feelings, thoughts and behaviour towards intimacy and sexuality. These changes lead many people to feel confused, isolated, sad and uncertain about their future sex life. It also impacts the partners of those with ovarian cancer (see the section about relationships later in this booklet).

The challenges you may face can impact your:

• body image

• self-esteem

• sexual identity

• sexual function

• sense of femininity

• sexual relationships

• mood

• desire

• interest.

These changes may have begun in the months before your diagnosis due to cancer-related symptoms such as pain, tiredness, irregular periods and abdominal bloating. During treatment the difficulties may have continued or worsened because of the physical changes from surgery (e.g. scarring, menopause), chemotherapy and other treatment side effects (e.g. hair loss, fatigue, nausea). You may also face psychological and social side effects from a diagnosis and treatment of ovarian cancer (e.g. body image changes, depression, changes in relationships). Even after treatment finishes you may continue to cope with longer term physiological, psychological and social side effects (e.g. changes in your ability to have sex or loss of interest in sex).

Every time I hop in the shower, get dressed or put on a dress, have to put on my hormone replacement patch – I am reminded of my surgery – which is every day.

Treatment for ovarian cancer includes:

• surgery

• chemotherapy

• radiotherapy

• biological therapies.

These treatments and their side effects can affect your sexuality, body image and

relationships. It is difficult to predict the exact changes for each person.

SURGERY

The type of surgery you have will depend on the stage of your ovarian cancer. But the operations most likely to affect your sexuality include:

• hysterectomy, which removes your uterus and sometimes cervix, ovaries and fallopian tubes (performed via laparotomy or laparoscopy)

• a bilateral oophorectomy, which removes both ovaries, or salpingo- oophorectomy, which removes both ovaries and fallopian tubes (younger women with early stage ovarian cancer can also have only one ovary removed in order to preserve their fertility)

• bowel and abdominal surgery to remove cancer that has spread to the abdomen or bowel.

The above surgeries leave a scar. Many people feel self-conscious of this scar, and it can affect their body image and sexuality.

Sexual pleasure can be lessened if you no longer have a uterus, so you won’t have contractions in this area during an orgasm. Other parts of your genitalia should stay the same and the pleasure you feel touching these areas should remain the same.

If you have both your ovaries removed and you have not yet gone through menopause, you will no longer get your monthly period. You may have infertility or fertility issues (see the section titled ‘Fertility concerns’). You will also have hormone changes that can cause vaginal dryness, mood changes, a sense of loss and a decrease in your sex drive. If you only have one ovary taken out, your other ovary may still release eggs and maintain your hormone levels (as long as you are peri-menopausal).

Abdomen and bowel surgery for ovarian cancer may leave you with scars. Some people need to have a ‘stoma’ (ileostomy or colostomy). This is when the surgeon makes a small opening in the abdomen to allow faeces to pass out of your body into a bag. This is usually temporary. But having a stoma can be difficult to get used to and manage. It can change how you view your body and sexuality, which can be very difficult to cope with.

RESOURCE

If you have lymph nodes removed from your groin or abdominal area due to the cancer spreading, you may have intermittent or long-term swelling in your legs (lymphoedema). Your self-esteem, body image and sexuality may be affected as it changes the way your legs look. It can also be very uncomfortable.

CHEMOTHERAPY

Chemotherapy is one of the most common treatments for ovarian cancer.

The aim of chemotherapy is to either destroy the cancer cells or slow or stop the growth of the cells. Chemotherapy can also damage healthy cells in your body and cause a range of side effects. Side effects are usually temporary and there are many things you can do to prevent or reduce them. The main side effects that may affect your sexuality include:

• hair loss

• fatigue

• nausea and vomiting

• weight loss or gain and and/or bloating

• changes in your bowel habits (e.g. diarrhoea, constipation)

• changes inside your mouth (mucositis).

RADIOTHERAPY

Radiotherapy uses radiation to destroy cancer cells or injure them so they cannot multiply.

There may be short-term or long-term side effects of radiotherapy. Short-term side effects will depend on what part of the body is treated. If you have radiotherapy to your pelvic area, it may cause some inflammation in your vagina and vulval area, which is usually short term. But sometimes scar tissue from radiotherapy can cause permanent shortening and narrowing of the vagina (stenosis). This can mean sexual intercourse might be difficult and painful. Radiation to this area can also cause changes in your bowel function (diarrhoea), but this is usually temporary.

Other possible side effects from radiotherapy that can affect your sexuality include fatigue, feeling sick and an irritable bladder. Most of these go away a few weeks after treatment finishes. Talk to your healthcare team about ways you can reduce or manage any side effects.

BIOLOGICAL THERAPIES

Biological therapies are a newer type of cancer treatment. They work by changing the way the cells in our body work. They can interfere with the signals or blood supply that make cancers grow or block the DNA repair in cancer cells. Biological therapies used to treat ovarian cancer include:

• bevacizumab (Avastin)

• olaparib (Lynparza) and niraparib (Zejula)

These drugs can cause side effects (e.g. fatigue, mood changes, weight gain and pain) that may affect your ability and/or desire to have sex.

PALLIATIVE TREATMENT

Treatments used in the palliative stage of ovarian cancer are similar to those
used in other stages. The aim of palliative treatment is not cure but to control symptoms (e.g. pain, abdominal swelling and fluid build-up) and growth of the cancer.

At this stage of ovarian cancer many people say they find sex difficult, and their desire is usually non-existent. This often causes a lot of sadness, feelings of loss and grief and changes in relationships. For more information see the section ‘Sex, intimacy and relationships when your cancer can’t be cured’.

The best person to discuss sexual concerns during and after your cancer treatment is your specialist doctor. They will know your situation and advise you appropriately. It is usually okay to have sex during chemotherapy and radiotherapy if you feel you want to. Many people feel too tired to have sex during treatment. Your surgeon will most likely advise you that you will need to wait several weeks after surgery before having sex.

REMEMBER

It is important to use contraception when you are having chemotherapy, radiotherapy and some biological therapies, as they can cause harm to a growing baby. It is also to protect your partner from being exposed to any chemotherapy/radiotherapy that may be still present in your vaginal secretions. You will need to use contraception for at least 6 months after your treatment finishes.

What about other medications?

Other medications (e.g. some antidepressants and other medications used to help with anxiety, depression and other mental health issues) may also affect how you are feeling about yourself and your sexuality as well as your desire and ability to have sex. Talk with your doctor if you think your medications are affecting how you feel sexually.

You may feel a wide range of emotions about sexuality, body image and relationships during and after cancer treatment (see table). Many can be overwhelming, and you may wonder if you will ever feel sexy, attractive and energetic again.

There are such complex emotions involved and you are wanting something wonderful to happen sexually, but then it doesn’t.

For many, a ‘surgical menopause’ (i.e. immediate menopause caused by removal of ovaries) results in feelings of loss and grief: loss of control over your life, loss of choices about having a family, and loss of part of your identity as a female.

Those who go through surgical menopause are at a higher risk of anxiety, depression and mood changes than those who go through menopause naturally. This is probably due to a combination of the very sudden hormonal changes in your body as well as coping psychologically with your cancer diagnosis and its treatment. When your hormones are ‘out of balance’ your sex life can come to a standstill. But with time and patience your body can find ways of becoming aroused and excited again.

WHAT CAN HELP?

• There are many self-help techniques, lifestyle changes and medicines (including hormone replacement therapy (HRT)) that can help relieve the uncomfortable symptoms and reduce the health risks associated with menopause. Not everyone can have HRT after treatment for ovarian cancer, so it is important to discuss this with your GP or a doctor specialising in female health.

• Try to relieve your stress in ways you know used to help you. Control the controllable. This may involve writing in a journal, drawing, listening to music, walking in nature or doing yoga.

• Always ask for professional help immediately if your feelings of loss, depression and anxiety persist or if you have suicidal thoughts. There are many different treatments that can help, including counselling, lifestyle changes and possible medications.

Fatigue

Fatigue is one of the most common problems people face during and after their cancer treatment. It is a weary and completely ‘worn-out’ feeling, not relieved by sleep. It can affect your ability to do day-to-day activities, your self-esteem, relationships and sex life.

Fatigue may be caused by chemotherapy, radiotherapy, or other medicines. The cancer itself may also cause fatigue or low red blood cells (anaemia). Emotional uncertainty and feeling out of control can also drain energy and cause fatigue.

Feeling tired can affect your ability or desire to want to be intimate with your partner and may cause anxiety at bedtime. If you’re already feeling exhausted, the thought of sex may exhaust you more. Yet your partner may want to have sex. Communicate with your partner to find ways to get through these low energy times. The following tips may help you and your partner communicate and still have good sex.

WHAT CAN HELP?

• Plan your day and set achievable and realistic goals you can manage.

• Share the household chores with your partner. This can help couples appreciate each other and be more willing and able to hop between the covers for some relaxing intimacy.

• Take it ‘slow and steady’. You don’t need to rush and use up all your energy in the first few minutes! A slower foreplay often allows for longer lasting enjoyment and more intense orgasms.

• Finding the right position to have sex when you are tired can be key to your enjoyment. Use pillows, props or ask your partner to hold you more firmly, which can help you use less energy and feel more relaxed.

• Put orgasms on hold for a while when you are tired. Take intercourse and climax off your menu when you feel tired and invest in other ways you can physically connect.

• Concentrate on other ways to gain sexual pleasure. Oral sex requires less movement than penetrative sex and may please you both more when you are tired. Females may orgasm far more often when they receive oral sex than during intercourse. If using your tongue is not on the cards, be creative with your hands. Explore the options.

• Increase foreplay. Massages, kissing, cuddling, pillow talk or a bath together can help improve arousal.

• Don’t be afraid to guide your partner to do what will please and relax you the most.

• Stop if things become unenjoyable and your fatigue is overwhelming. There is always tomorrow! Ease off the pressure and just cuddle and chat, which are also an important part of investing in your happiness and overall good sex life.

Pillow talk usually makes both partners feel like they can let their guard down
in bed, which increases closeness and chances of further intimacy. Pillow talk can keep emotional and sensual connections with your partner alive, playful and exciting, as well as enhance love for each other, as well as self-love.

INTERESTING FACT

Moderate daily exercise has been shown to reduce fatigue and increase physical, mental and emotional energy. Consult your doctor before starting any new exercise regimes.

Painful sex (dyspareunia)

Pain will usually interfere with your desire for and ability to have enjoyable sex and reach orgasm. Sexual intercourse or using sex toys may be painful after having a hysterectomy. This operation can shorten the vagina and cause some scarring at the top of the vagina. Sex may also be painful if you are suffering abdominal pain related to your cancer. Being hugged, kissed or having sex can be painful after surgery due to your wounds still healing and pain around scars. Sexual positions you previously enjoyed may no longer be comfortable. And some drugs you might be taking for your cancer or pain can cause drowsiness and lessen libido.

• Vaginal atrophy, where the tissues lining the inside of the vagina become thin, dry and inflamed, can also cause painful sex. This is caused by less oestrogen (a female hormone) made by the body. Symptoms of vaginal atrophy can include vaginal dryness, itching, redness, burning and pain during sexual intercourse.

• Vaginismus is an involuntary tensing of the vaginal muscles. You may experience this at the beginning of sex (also when inserting a tampon or having a pelvic examination). Vaginismus can make penetrative sex painful. Vaginismus is usually associated with anxiety or fear of having sex.

• Vulvodynia is chronic pain or discomfort (pain, burning or irritation) around the opening of your vagina (vulva) with no known cause. It can last up to 3 months and sometimes longer. Vulvodynia can make it uncomfortable to sit for very long and having penetrative sex can become unbearable.

Pain has had an impact on making me feel sexual.

Treatment resulted in vaginal atrophy, I had sex once in 3 years.

HELPFUL TIP

Having an orgasm can help relax the vaginal muscles before penetrative sex.

WHAT CAN HELP?

• Vaginal dilators or vibrators after treatment ends can help stretch the vaginal area again to help reduce pain.

• Ask your doctor about seeing a physiotherapist who specialises in pelvic floor health.

• Use water- and silicone-based vaginal lubricants and moisturisers.

• Oestrogen-based creams may be prescribed by your doctor to help

  with pain.

• Use props like pillows to help you get in a comfortable position for sex.

• Only have sex in positions you feel comfortable in. Side by side may be the best one to start with to avoid pressure on wounds or your body.

• Plan to have sex at a time in the day when your pain is at its lowest. Taking some pain relief before sex can help ease pain and anxiety.

• If pain persists, ask your doctor to refer you to a pain specialist.

• A warm bath, massage or music may relax you before sex.

• Have sex at a slower and gentler pace (e.g. avoid any strong pelvic thrusting or deep penetration). Stop if it is painful.

If sex is painful, be patient and kind with yourself. It does not necessarily mean it will be this way forever. Your body needs time to heal. Things that may be painful now, or immediately after or during treatment, may not be painful in a few weeks’ or months’ time.

I hated using dilators at first. They felt so clinical, and it reminded me of the whole medical side of things. But my partner and I bought some dilators that we can include in our sex play and hopefully this will mean that the sexual part of my body won’t feel so associated with the medical side of things.

Bowel and bladder issues

Physical concerns women report include leaking urine or faeces (incontinence) during sex and having to deal with tubes and catheter/stomal bags. Incontinence may be temporary or permanent.

These issues can cause:

• embarrassment and fear of wetting self in public or during sex or having partner help with hygiene care

• poor body image and low self-esteem

• loss of dignity

• loss of confidence or desire in being intimate

• loneliness and isolation and withdrawing from any sex

• anxiety and depression

• overwhelming feelings of grief and loss due to the lack of control over bodily functions.

WHAT CAN HELP?

• Practise pelvic floor exercises to help improve bladder control.

• See a physiotherapist who specialises in pelvic floor health.

• Shower or bathe before sex to lessen worrying about odours.

• Tape any tubes to your leg and remove the bag and insert a small plug into the end of the tube before having sex.

• Cover the bed with large, warm fluffy soft towels before having sex to help with urine leakage.

• Have sex in the shower or bath to help relieve any concerns about urine/ faeces leakage or smells.

• You can gently insert faecal plugs into the back passage to prevent leakage during sex.

• Empty any drainage bag before sex and fold it up and secure it with tape to your body to prevent it moving. Wearing a short nightie or camisole to hide drainage bags during intimacy may help.

• Use sexual positions that lessen the pressure on your bladder (e.g. being on top). Seeking professional counselling may also help lessen anxiety.

Having ovarian cancer and its treatment can cause visible changes to your body. You may feel your body no longer looks good, fear being touched or worry it is not working as it used to. Your body may no longer feel like yours.

In many cultures appearance is very important. Any change in physical appearance may negatively affect self-esteem. Changes that can happen include:

• scars on your abdomen from surgery

• hair loss from chemotherapy (which is usually temporary)

• weight gain or loss due to the disease, hormones and certain drugs

• change in the shape of your body due to surgery or drugs

• swelling of part of the body due to accumulation of lymph fluid (lymphoedema) (e.g. in the legs if you have lymph nodes removed from the pelvic area)

• having a stoma, which is a small opening in the abdominal area to allow faeces to pass out of your body.

Women often say after surgery they notice a difference in the shape or feel of their abdomen. They say, ‘It just feels different.’ Your clothes may fit differently, which is not necessarily due to weight gain or loss, but due to your surgery. Your favourite outfit, which previously made you feel confident, may no longer feel comfortable.

Changes may cause embarrassment when getting undressed, being intimate or wearing swimwear. You may feel less attractive, less sexy and extremely self- conscious about your body. Many women withdraw from intimate situations. If you have a partner, they may feel you are less attracted to them and withdraw also. It can become a vicious circle (see diagram below). Open and honest communication can help you both break this. Be kind to yourself and allow time to regain your sexual confidence.

WHAT CAN HELP?

• Cover scars with makeup and clothing. Scars often fade with time.

• Consult with a makeup specialist, who can guide you to the best products

  and ways to hide scars.

• Wigs, scarves and hats can help cope with hair loss.

• If you develop lymphoedema, talk to your medical team, who can provide advice and treatment. There are doctors and nurses who specialise in treating lymphoedema.

• Eat a healthy diet and exercise to improve body image and self-esteem.

• Committing to 7–8 hours’ sleep per night lowers anxiety, increases clarity and you are more likely to make better food choices and have the energy to exercise and less likely to feel triggered by the side effects of surgery.

• If you have a partner, talk to them about how you feel as they will want to ease your anxiety.

• Speak with your cancer nurse or counsellor to seek emotional support (see the section titled ‘Where to from here?’).

RESOURCE

Many things change your desire for sex (libido) during and after treatment for ovarian cancer. Loss of desire is different to loss of pleasure. Some women may still want to have sex, but it is no longer enjoyable. Loss of pleasure can lead to the decrease in desire to have sex. Sexual function and libido are complex and involve connections with your:

• emotions

• physical functionality

• hormonal balances

• body image and self-esteem.

The fear of my “new body” and my relationship and the changes that had happened in my body were the catalyst that kick-started me getting help. It is a sexual and bodily recovery and I needed to unpack the emotional side of things as well as the physical.

You may find it difficult to express your feelings about your sexuality since your diagnosis and treatment for ovarian cancer. And that’s okay. Women say they lose a connection between their body and mind, making it difficult to have sex.

The good news is that as we age, we often become aware of new arousal and sensual pathways.

You may associate sexual intimacy with your diagnosis and treatment. For example, surgery to the pelvic area can psychologically impact future sexual intimacy. You may avoid intimacy such as kissing and cuddling in fear of it ending in sex. These mind and body changes can make you feel scared and vulnerable. Relationships may have changed, causing confusion and sadness.

Sex drive for men and women may decrease with age and altered priorities. But this does not mean you won’t want to have an active and enjoyable sex life. If you still want to be sexual, it is important you feel comfortable to explore ways alone or with a partner to achieve this.

Removal of your reproductive organs or not being able to have children can create a huge sense of loss and grief. The idea and possibility of sex may trigger difficult memories and feelings about your diagnosis and treatment. It can also be hard
to feel ‘sexy’ or be intimate with someone if you no longer feel ‘complete’ as a person. Research has shown that a common attitude among women (and some men) is they cannot be physically attractive, or sexy without their uterus (womb) or other genital organs. They may be reluctant to have surgery because they fear:

• loss of sexual function

• loss of the desire to have sex

• damage to sexual relationships.

I had to reframe things in my mind. This has been so important and helpful. I had to get out of the clinical/medical/cancer treatment space and back into the sexual space.

I became scared to go inside my body. I knew my body and the inside of my vagina so well before surgery and treatment, but it had changed and that was upsetting, and it still is.

WHAT CAN HELP?

Many of the tips given in the prior sections on fatigue and painful sex can also help with improving your desire to have sex. The important message is to listen to your body and explore your own feelings of being touched (by a partner or yourself if it feels comfortable). Desire and enjoyment of sex can improve with time and effort.

Communicating openly about sexuality can be difficult but understanding the changes and finding ways to ease anxiety usually help. If you have a partner, tell your partner how you feel and ask how they feel. Some couples and individuals find it helpful to talk to a counsellor, sex therapist or sexologist, women’s pelvic health physiotherapist or a doctor with specialist training in sexuality and cancer. Read the section titled ‘Relationships, partners and being single’.

My partner has been through it all with me and my partner has a really high sex drive, so we have had to work hard with this, but I am so lucky my partner is very patient.

Tips to help improve libido and sexual enjoyment include:

• Plan intimacy for when you think you might have the most energy.

• A comfortable, cosy room with the right lighting can help you relax and enjoy intimacy and sex.

• Explore ways to be intimate and enjoy physical closeness: touching, massaging, stroking, cuddling, kissing or simply holding each other can be satisfying additions to or alternatives to sex.

• Expand your sexual repertoire to help increase sexual pleasure individually, and within your relationships. (See the section on erotica and sex toys.)

• Go slow, be creative to help find out what feels good. Problems usually improve with patience and practice.

• Experiment and explore your body and what turns you on either alone
  or with a partner. Guide your partner and their hands, fingers, tongue
  or sexual toys to the areas on your body you think will arouse you. Not everyone feels comfortable doing this, but it is worth building confidence to let it happen.

• Regular mindfulness practice can help you focus on sexual pleasure and intimacy rather than negative thoughts or associations.6

• A warm bath with candles or listening to music can also help relax and increase your desire to have sex.

• Vaginal moisturisers and lubricants relieve dryness and help make sex more comfortable (see table next page).

• Ask your doctor whether hormone therapy is a suitable option to help improve your libido, vaginal dryness and other symptoms resulting from surgical menopause.

Everyone is unique and will be turned on in different ways. There is no ‘one’ way to stimulate the clitoris and it often involves experimenting on your own or with a partner. These tips may not work for everyone, and ovarian cancer treatment may make it difficult at first to reach orgasm. Take the time to explore stimulating your clitoris alone or with a partner.

• Create a warm, safe and comfortable environment.

• Set the mood with foreplay (kissing, hugging, massage, pillow talk) if you are with a partner, or if you are alone feel free to explore erogenous parts of your body. Use your imagination – or music, books or movies can help.

• Explore your clitoris using whatever you are comfortable with (e.g. fingers, partner’s tongue, or a clean sex toy, shower head, vibrator). Once you feel at ease with your feelings, you can directly stimulate the clitoris.

• The clitoris can also be stimulated from the inside of the vagina using a sex toy, fingers or a penis.

• Start slowly and softly and touch or stroke the clitoris. Reaching an orgasm through clitoral stimulation usually takes time. Gentle back and forth motions, circular movements or even a light tap are all possible ways to achieve the most enjoyment. Patience is key.

• Listen to your body, your partner’s body, and work out what feels good.

• As you become more at ease and excited, you can experiment with firmer

  pressure on the clitoris and speed of movements.

• As you become aroused, you are likely to produce a natural fluid in the vagina to help make it easier to stimulate the clitoris and vagina.

• Use a lubricant if it helps enhance enjoyment. This is especially helpful if you have gone through menopause and have vaginal dryness.

  REMEMBER

  It is quite normal not to feel stimulated or reach orgasm the first time, or every time you masturbate or have sex. All that matters is that you feel safe, comfortable and enjoy yourself. If it doesn’t feel right, then stop and try again another time.

* All recommended lubricants are paraben and glycerin free, so they won’t alter vaginal pH or irritate thrush.

Reproduced with permission from Dr Amanda Hordern from her book:
Sex and cancer: Connect with your body and rekindle the spark. Amanda Hordern, Hordern Miller & Associates 2021.

You may find it helpful to explore the world of erotica. Growing evidence suggests that being sexually adventurous can improve your health and relationships.
But if you have never sought help or pleasure in this area, it may feel confronting or embarrassing to start with.

Different forms of erotica appeal to different people. Erotic films, music and books can be stimulating. Sex toys may also be something you could explore either alone, or with your partner.

Feminist erotica is widely available and involves sex-positive content for women, made by women, rather than the traditional male perspective of erotica if that is your preference.

Some common examples of erotica include:

• Erotic massage, when you and your partner touch and stimulate each other, as well as communicating love and tenderness. This form of massage can be relaxing and a positive way to release stress and anxiety.

• Full body or vaginal massage using sex toys or through your partner’s massage.

• Erotic lingerie – wearing erotic and sexy clothing can give you more confidence.

• Sexual fantasies are imaginings that excite a person’s sexuality and can boost sexual arousal, either alone or shared with a partner.

• Sexual role-play is acting out something that turns you on. Some people use role-play as a form of foreplay to help sexual arousal or overcome inhibitions.

SEX TOYS/AIDS

• Sex toys can be intimidating but we discuss them here as many women say they achieve stronger and more intense orgasms using them. But don’t be pressured into exploring anything you are not comfortable with.

• Vibrating sexual toys have different speeds, sizes and pleasure intensity which can be used to stimulate the clitoris and other parts of the vagina.

• Dildos are shaped like an erect penis and used for sexual stimulation.

• Sonic clitoral massagers use sonic waves and pulses to stimulate the whole clitoris, above, beyond and underneath.

• Vibrating weighted beads or balls can be inserted into your vagina while performing pelvic floor exercises (Kegel exercises) to strengthen the pelvic floor and vagina or improve sexual pleasure.

• Foreplay and other massage tools can help relieve muscle tension throughout the body

• Vibrating penis or couples’ ring goes over the penis and can give fuller, longer- lasting erections, but also stimulates the clitoris, giving more powerful orgasms and longer-lasting sex for each person.

HYGIENE AND SEX TOYS

Be sure to keep sex toys/aids clean to prevent any build-up of bacteria and dust.

Sexual fantasies can sometimes boost sexual desire.

Our suggestions may not work for everyone, and many women may not need to rely on them to enjoy sex. The most important thing is you do what feels right for you.

Visual stimulation is naturally a part of our sex life, and my partner and I can still use that, which is good as it’s something familiar from before my diagnosis. So, we can bring this in naturally without it being something forced or abnormal.

KEEP IT CONSENSUAL

• Keep bedroom play, fun, safe and positive – everything must begin with consent.

• Communicate to your partner about your limits and boundaries in sex. Don’t

  assume they know. Be very open about what you don’t want to EVER explore.

• Ensure sex is pleasurable for you and does not cause any negative health outcomes (physical or mental).

AFTERCARE FOLLOWING SEX

Soon after sex, some women have negative emotions, particularly if sex has difficult associations for them due to ovarian cancer diagnosis and treatment or past sexual experiences, abuse or trauma. For example, sadness, fear, agitation, anxiety, panic, and guilt are common feelings. Crying without knowing why is not uncommon. This is more likely to happen after an intense sex session or if you have discomfort during sex. The medical term for this is called ‘postcoital dysphoria’ or ‘post-sex blues’. If this happens, it can be confusing and upsetting for both partners. You may not understand why this happens and your partner may wonder if it is their fault. But it is usually due to another deeper reason (e.g. triggering unpleasant past sexual experiences or abuse, side effects from your treatment, pain during sex, being overwhelmed by your body’s response).

Acknowledge your feelings after sex and communicate with your partner. Ensure you both feel okay about ‘what just happened’. If either of you feel uncomfortable, try to work out why and plan how you can prevent this during future intimacy.

Most importantly, be patient and kind with each other. Remaining intimate (e.g. cuddling, chatting, touching each other) is often important after sex. Always keep in mind that the foundations for enjoyable sex are the same as those needed for any meaningful and lasting relationship:

• trust

• honest and regular communication

• understanding

• patience.

Loss of sensation – nerve problems

Some chemotherapy drugs cause nerve problems. Common symptoms include tingling, burning or numbness in your hands and feet. This is called ‘peripheral neuropathy’. It occurs gradually and may get worse with each treatment. In severe cases, peripheral neuropathy can lead to difficulty walking and unbuttoning clothes.

Symptoms usually improve after treatment ends. While it is happening it can cause emotional and physical problems. You may feel sad or anxious and your sexual desire may be affected. Let your doctor know if you have symptoms of peripheral neuropathy.

After hysterectomy a few women report intercourse feels different, and the vaginal area feels numb or ‘empty’. This operation should not cause nerve damage to the vaginal or clitoris tissue. But if you have concerns, talk with your doctor.

Sometimes surgical scars can also feel numb for weeks or months after surgery. This can feel strange when your partner is touching you in these areas, but the sensation usually comes back.

WHAT CAN HELP?

Peripheral neuropathy can be challenging. Unfortunately, there is no treatment to improve the nerve damage. However, there are ways to help reduce its impact. Sometimes drugs used to treat other medical conditions can treat nerve pain. One example is the antidepressant duloxetine (Cymbalta). Anti-inflammatory drugs and other pain killers such as gabapentin and pregabalin (Lyrica) can also help with nerve pain.

The following treatments may also help prevent or control peripheral neuropathy related to chemotherapy:

• vitamin B6

• calcium and magnesium

• glutathione, a vitamin rich in antioxidants.

• Mindfulness and meditation can help focus your attention away from pain.

Talk with your doctor about these options. The most important tip is to tell your doctor as soon as you have any symptoms.

Younger women may be particularly concerned about the ability to have children after treatment. Some cancer treatments affect your ability to have a child (infertility): for example, surgery to remove both ovaries or uterus (permanent infertility) and certain chemotherapy drugs (sometimes temporary infertility). If you want children now, or think you might in the future, talk to your team of specialists before treatment begins.

There are several options for preserving fertility but not all of them are suitable for all women. You may be able to freeze your eggs before the surgery; your specialist doctor is the best person to talk to about this. Several other options to explore are donor egg and surrogacy, adoption, foster care or IVF if you still have one ovary left.

Infertility makes many women feel:

• inadequate

• unattractive

• no longer feminine

• like you are letting your partner down.

Intimacy and sexual intercourse may also become difficult if you are told you are infertile. The loss and grief caused by not being able to become pregnant the first time or to have more children can affect mood and wanting to engage in and enjoy sex. Even if you were not planning on having a child or more children, you may still have these emotions.

Starting a new relationship after cancer treatment that may have affected your fertility can be frightening. Knowing when to bring this topic up is difficult. But communicating openly with a new partner, when trust levels feel right, can be a relief and provide the foundation for an ongoing open discussion.

WHAT CAN HELP?

These suggestions may help you cope better with infertility issues and encourage you to be patient and kind with yourself so you want to have sex again.

• Look after your mind and body (e.g. regular exercise, a well-balanced healthy diet, resting and sleeping well, having some fun, pursuing your hobbies).

• Concentrate on what is meaningful and important to you and consider future goals around your career, travel and relationships that support your values and personality.

• Make relaxation a priority to reduce your stress levels (e.g. mindfulness meditation, yoga, massage).

• Make your relationship (if you have one) a focus by planning outings together, take a shower or bath together, make a nice meal together at home, surprise each other with fun gifts and notes to each other.

• Explore your sexuality and sexual desires when you feel ready. Remember what used to turn you on and trust it can happen again.

• Being adventurous can help: experiment with sex aids, oral sex and masturbation (see the section titled ‘Let’s talk about erotica, sex toys and more’).

• Don’t force things. Be patient and remember intimacy does not always lead to sex. Hugging, kissing and gentle touch are a good start.

• Communicate with your partner to help re-ignite passion and confidence that may be temporarily lacking due to your cancer, its treatment and side effects.

These tips may not work for some women. It is likely you will have times when no matter how hard you try or how much you want things to work sexually, you will just be too tired or low in mood. If feelings persist, seek support from a professional sexuality counsellor, sexologist or psychologist. Support groups are also a great way of gaining support and comfort by talking to other women who have had similar experiences.

Menopause is a natural event that usually happens around the age of 50. However, surgery, chemotherapy and radiotherapy for ovarian cancer can cause ‘early menopause’ in women who have not yet reached menopause.

Early menopause from cancer treatment is different to the gradual transition that usually happens with a natural menopause. The sudden drop in hormones after early menopause triggers physical and emotional changes that may impact your health and wellbeing, including your sexuality and sex life. These changes are different for everyone: some women may not have troublesome symptoms at all, while for others, symptoms can greatly affect their day-to-day life.

Immediate menopause has arrived, and it is not clear to me if the source of a reduction in libido is due to the chemotherapy, menopause, body image etc.? So, I am addressing all of those and talking about it from all points.

I do not feel sexy any more unless I work really hard to get into the mood ... but no I don’t look in the mirror and see a sexy lady anymore. I have no sex life and I keep myself covered up.

WHAT CAN HELP?

Ovarian Cancer Australia has a factsheet on early menopause from ovarian cancer treatment (www.ovariancancer.net.au). Also see the following sections in this booklet:

• ‘Decreased desire for sex’

• ‘Scars and visible changes to your body’

• ‘Mood changes, feelings of loss and grief’

• ‘Fertility concerns’.

With so many things happening to your body – scars, hair loss, night sweats, aches and pains – I think they can usually sense that sex is not high on the agenda! Hopefully they understand that it is a physical condition, not a personal situation. Maybe hugs and cuddles, but nothing more; that was how it was for me anyway!

Whether you are in a relationship or single, having ovarian cancer and its treatment generally has consequences for you, your sexuality and intimate relationships.

Your sexual needs may be the same as before you were diagnosed with ovarian cancer, or they may have changed dramatically. You may no longer feel like sex or feel sexy. You may have an increased desire to have more intimacy or sex, or you may withdraw from any intimacy. Whatever is happening for you is okay, but it is important you feel safe to express your feelings and ask for help if you need it. Finding balance for you alone, or for you and your partner if you have one, is important.

Being single

You may have been single for a long time, or you may have recently finished a relationship. Whatever your situation, being diagnosed with ovarian cancer is likely to be life changing. It may affect how you view your body, intimacy and future relationships. Some women may worry about being alone or fear not being able to begin a new relationship.

Support from those you love plays a major role in how you recover and cope during cancer and its treatment. But this support does not always have to come from a romantic partner. Some women feel strong and able to be their own advocate during their illness and ask for help from close family and friends.

Single women will have similar feelings to women who are already in a relationship. But they have different fears and may have more intense times of loneliness. Be gentle with yourself and make
time to process all the changes your cancer has brought

into your life. Approach things with honesty, humour and hope and remind yourself that not being in an intimate relationship at this time does not mean you have to be alone.

Dating can be exciting, but it can also be overwhelming, especially if you have been through cancer and its treatment. Many single people say that dating and starting a new relationship after having cancer and its treatment can be frightening. Women often:

• lack confidence in their body (how it looks and responds) after treatment

• wonder when is the right time to disclose information about the cancer

• fear rejection

• fear low libido or desire to be intimate.

Do things in your own time and don’t feel pressured to be with someone until you are ready. The tips below won’t solve everything, but they may help you regain your confidence and feel excited about starting a relationship and being intimate again.

• Build your own confidence first – be kind and patient with yourself and focus on those traits you most value about yourself.

• Return to activities you enjoyed before you had cancer, or try new ones, which can help you feel like yourself again.

• Think about what you want in a relationship and partner. Your priorities and needs may have changed after having cancer.

• If you have issues with your body image and how cancer has affected the way you look and feel (scars, hair loss, anxiety, low mood, libido), try professional counselling.

• Use masturbation (see earlier section) to get used to what your body and sexuality are like after cancer.

If you meet someone you like, you may want to:

• plan when you will talk about what you have been through with ovarian cancer
  – some people want to talk about it within the first few dates; others wait months

• find a balance between not wanting to seem like you are hiding something and not wanting ovarian cancer to be the focus of the early dates

• write down in advance what you will say to a new partner – you could practise it with a trusted friend or family member first.

As nervous as you might feel, find common interests to chat about, enjoy the time together and focus on having fun.

If you are in a relationship, your partner may also have a range of emotions, including anger, sadness, denial, fear, anxiety, guilt, loneliness and feeling overwhelmed. They may want to be strong and support you, but they may also be dealing with their own sense of shock, loss and grief as they witness your suffering and challenges. Studies show one-third of partners of women with ovarian cancer have concerns, for example:

• changes to their sexual relationships

• fear of hurting their partner during intimacy or sex

• fear of being rejected by their partner

• depression

• anxiety

• feelings of isolation

• fear of their partner’s cancer coming back.

Give your partner time to adjust and communicate their feelings. Be honest with them about your feelings and needs. If you lead the way, your partner may feel more comfortable and want to share their feelings and needs, which will bring you closer together.

Interesting fact: Ever heard of arousal non-concordance? This is when the mind and body are not in sync during sex – the mind is aroused but the body isn’t, or vice versa. If you are very anxious, this can happen.

If your brain isn’t switched on and willing to absorb and explore sexual thoughts, then your body won’t follow.

When we tried to progress, a lot of anxiety came into any type of intimacy. We needed to address this, and it ended up both of us seeing a sexologist. We both wanted the right tools to deal with it.

Couples may benefit from counselling. A couples therapist can help you both talk openly about your sexual concerns, changes in sexual functioning and trying to ‘normalise’ your issues.

One common issue between couples after cancer treatment is feeling that your partner no longer finds you attractive (see negative emotional cycle diagram in the section titled ‘Scars and visible changes to your body’). Embarrassment about how your body looks can also be an issue. Your partner may worry about causing you pain during sex.

Your sexual roles before having cancer may need to change. For example, if you previously had the higher sex drive and initiated hugs, kissing and sex more often, your partner may now need to take over this role. This may be overwhelming at first, but with time and patience many couples are able to change their usual role and normalise their feelings around these changes.

Specialised sexual health professionals (doctors, nurses, counsellors, sexologists) can help couples work through their concerns. They may use techniques to help couples re-shape their sexual intimacy and ‘let go’ of any pressure to have to return to how things were before ovarian cancer, for example, taking risks and being creative, playful and patient.

Be prepared for it not to always work out how you had hoped. Don’t give up – there is always tomorrow.

REMEMBER

Although your cancer and its treatment may have lessened your desire for sex, ‘willingness’ and showing interest in your partner can be help stop intimacy from disappearing altogether. Try lying together in bed, chatting, spooning, hugging, kissing, holding hands, stroking each other’s hair and ‘pillow talk’. This can remind you of your romantic and emotional connections until other types of sexual connection may happen again.

If you and your partner feel couples therapy might help, ask your medical team for a referral to a specialised sexual health professional.

WARNING: The following section contains material that is sometimes confronting and disturbing. Certain words or images can cause sadness or anxiety, or trigger traumatic memories for people, particularly survivors of past abuse, violence or childhood trauma.

For some people, such responses can be overwhelming, so please skip this section if you need to. If you want to talk to someone, support is available, and we provide details at the end of the section.

Domestic violence (DV) can have a significant effect on the health outcomes, treatment decisions and care for someone during and after ovarian cancer. DV is the most common form of violence against women worldwide and women with cancer are at risk as well. The abuser may not be your intimate partner, but another family member or other person you live with. The abuse can come in several forms and victims may suffer one or more of any of the following:

• Physical: physical abuse may come in the form of hitting, biting, scratching, pushing, slapping, kicking, choking, using weapons or objects to harm you. It may or may not cause bruises, abrasions, cuts or scarring.

• Sexual: any form of unwanted sexual activity, with the perpetrator using force, emotional tactics, making threats or taking advantage of victims not able to or wanting to give consent to the sexual activity.

• Emotional/Psychological: any kind of abuse that is emotional or mental rather than physical in nature. This may include verbal abuse, shouting, constant criticism or using more subtle tactics, such as intimidation, manipulation, humiliation and refusal to ever seem grateful. However, emotional abuse isn’t always verbal: it can be enacted through behaviours.

• Financial: controlling a victim’s ability to gain, use and maintain their money and financial resources.

• Coercive control: is a common form of psychological/emotional abuse. This can include gaslighting (where a person or group of people makes someone question their sanity, perception of reality or memories) controlling how someone looks or what they eat, isolating the victim from family and friends, monitoring a partner’s activities and jealousy and possessiveness.

Although statistics surrounding domestic violence are hard to establish due to under- reporting, it is known that women, children and trans people are at increased risk.

Additionally when someone is being abused, and has cancer, they may suffer even more complications. For example, the person with cancer may be relying on the abuser for help with activities of daily living (showering, eating, etc.), providing medications, financial needs and transport to appointments. This allows the abuser to feel more in control and powerful, leaving the person with cancer feeling more frightened or unable to change their situation.

If you (or someone else) are in danger, or if you have been threatened, physically hurt or sexually assaulted, call triple zero (000). You can also find out how to get further help using the resources below.

Learning your cancer is incurable usually comes as a shock, even if you were aware your cancer was progressing. You are likely to feel extremely upset and frightened about what might happen next. While sexuality may not be your focus during this time, it doesn’t mean you won’t still want to share special and intimate times with your partner. Or that you won’t still have sexual feelings.

In the terminal stages of cancer, you may have less need or ability to take part in sex but the desire and need for touch, intimacy and caring about how you look may not lessen. In fact, they may become more important, but it may be difficult to openly express your needs. Discussing what you see as important to you and what you can share as a couple in the remaining time you have left can bring you clarity about who you are and closer as a couple. Make lists of your hopes and priorities to share with each other to help create a plan. This is often painful, but for couples who are close and want to deeply connect during this difficult time, it is likely to enhance your intimacy.

Being physically and emotionally close, sharing a meal, talking about past intimate times, communicating your feelings, cuddling and kissing may be all you want right now. Simply lying next to each other may be enough. Self-compassion and care are very important. Find ‘safe spaces’ to feel comfortable and express yourself and allow others to hold and support you.

Saying ‘goodbye’ to a partner is never going to be easy but allowing the time and space for you both to do this will provide a deep comfort in knowing you have taken time to celebrate your love.

If you are single, focus on what feels comfortable for you and how you can best express your physical and emotional needs. Talk to friends and family as well as your treating doctors and nurses. If you think it might help, ask for a referral to a professional counsellor. You can also call the Ovarian Cancer Helpline on 1300 660 334 and speak with one of our specialist nurses for further help and support.

Whatever your situation, you or your partner may need extra help and support. Support networks are available for partners of women with ovarian cancer. Please refer to the previous section as well as the ‘Getting support’ section at the end of this booklet.

My husband and I went through my surgeries together and he said that he needed time for himself to get around what was going on especially since he felt helpless a lot of the time and this feeling was overwhelming.

From the heart of women with ovarian cancer

This section provides quotes from many brave and beautiful women of all ages (20–80 years) who have or have had ovarian cancer and its treatment. We thank them for their time and generous answers to questions about topics that can be painful and difficult to discuss.

We hope this section will reassure others going through ovarian cancer that you are not alone. The wide range of experiences and opinions might remind you that everyone’s cancer, treatment, side effects and sexual life is personal to them. All that matters is that you and your partner, if you have one, can express your sexuality and enjoy intimacy when and if you want to.

All those who provided quotes chose to remain anonymous.

Intimacy

For the first 3 months after diagnosis and surgery, we did not have sex. Then we started slowing having sex till we got back to weekly sex.

Sex is painful now. My genitals look different, and I question if I am still a woman as I don't have female hormones. We still have sex but usually oral sex.

We have a stronger emotional bond but the exact opposite physically.

Physical and emotional connection is a bit broken. My self-image I find has degraded so much I don’t like to be seen or touched because I devalue myself.

At first, I felt my husband would dislike my body, but I was wrong. Now 12 months on from diagnosis and our sex life is the same as before diagnosis.

We are no longer intimate as I have no desire.

Sexuality

I miss my cervix, uterus, ovaries in a way that I find hard to put into words. I really miss my libido.

It did bother me slightly after I had the operation and the chemo but I was so glad to have survived it did not really affect me too much about my sexuality.

It has been a long road to recovery, and I wasn’t warned about this. I identified the physical things I needed but I also needed a lot of emotional support around my relationship with my vagina and body.

No libido, unhappy with body due to stoma bag, focusing on getting well over sex.

My partner does not find me sexually appealing these days. Our sex life is non-existent.

The diagnosis has affected my confidence as a sexual being ... I feel a bit sexless, I certainly don’t have the sex drive I used to, and I feel a bit tense about the prospect of sex as I know it will be painful.

I have sought support for pain during sex (vaginismus) which has increased enjoyment and functioning. Has been a shift because was previously always concerned with birth control. Can be distressing at times when realising this is no longer a possibility.

Relationships

I feel as though I am “less” of a partner than I used to be, I’m not as energetic, I’m not currently financially contributing and intimacy between us has changed. Having said that I feel it’s made us very close as we are very conscious that my life might be shorter and so we make an effort to spend time as a family and have holidays together.

My lack of interest in sex is very difficult for my husband, and my husband’s wish for sex and intimacy is difficult for me.

My partner is very supportive and allows me to talk about my cancer experience as much as I am comfortable to do so ... I feel like if he will support me through my cancer experience, I can really trust him.

I feel sorry for my husband who misses out on so many aspects of our previous intimacy. I wish I still felt desire.

Our relationship is now totally different as I am less independent and grossly fearful.

My husband finds it very difficult to discuss the situation so at times I have been frustrated by this, but I think I’ve accepted it now. I think there is a part of him that is deeply sad about the whole thing, but he tries not to show that and a lot of the time we act like I’m not even sick.

I was very nervous to tell my partner about my past cancer experience, and for him to see my scars and photos of me when I was bald. I sometimes try to avoid talking about my thoughts and anxieties around my cancer experience because I don’t want to burden him or scare him off.

What would help?

A guide to lubricants and vaginal moisturisers etc. would be useful.

It has not affected the relationship I have with my partner.

Definitely need to encourage partners to seek help as become informed with what will happen to their partner after treatment of ovarian cancer.

I find an anonymous online forum the best to discuss things that can be a bit embarrassing to say face to face and is interactive.

Feeling if there are some educational/ informative sessions (grouped sessions or one on one) offered and provided that this will help a lot.

My doctor once asked many years ago if sexual libido was affected. I was embarrassed and lied ... Maybe next time I get a female fill-in I’d be more comfortable discussing it.

Oncologists could make women and their partner better aware of possible side effects to sexuality when informing patients about treatments they will undergo, including surgery.

Entertaining and humorous YouTube clips about the trials and joys of life beyond diagnosis (seriously, there are some joys, at least for older women).

Many people want to talk about their sexual concerns at the time of diagnosis, as well as during and after their treatment. It is important we keep breaking open the conversation about sex and cancer to allow the freedom to explore their sexuality at all stages of their care.

People with cancer can still have fulfilling sex lives during and after their treatment – but we need to talk about how and equip people with the resources and tools to work through any concerns they may have. This can take time but the sooner we start the conversation the better. Open and honest communication right from the time of diagnosis is essential.

It should be left to the patient to decide how much or how little they want to engage in talking about sex. It’s not the health professional’s choice. It would benefit health professionals (and their patients) to be better educated and not shy away from talking about sex.

Single women and some with partners may attend appointments and treatment with a parent or a good friend. Talking about sex and intimacy may be difficult with them in the room. Whether you have a partner or not you can still have these conversations by yourself with a counsellor or health professional. It is about you as an individual feeling comfortable to speak about your sexual feelings

or concerns. Remember: it is not selfish to think about yourself and to want to discuss your sexuality and sexual needs with someone you trust and in a space you feel comfortable in.

So, who can I talk to?

Many people with ovarian cancer seek help and support from professionals trained in sexual health and wellbeing including:

• sexologists

• sex therapists

• sexual counsellors

• female pelvic health physiotherapists.

Many people may already be seeing a trusted mental health professional (psychologist, counsellor, psychiatrist), who may not specifically be trained in sexuality and relationships. If they are not able to help with all your concerns, ask them to refer you to one or more health professionals who specialises in sexual concerns.

SEXOLOGISTS

Sexologists specialise in human sexuality (how the body works and why), along with understanding how our minds work (psychology) regarding sexuality. They have specific skills and knowledge about sexual behaviours, feelings and interactions. They assist people to resolve issues around their sexual experiences to improve their sex lives and overall life.

Sexologists accredited with the Australian Society of Sexologists follow a code of ethics, which means they must adhere to a strict set of rules and values within their profession. They must be respectful of everyone who comes to see them.

SEX THERAPISTS

Sex therapists are trained to help people work through sexual concerns. A sex therapist may be a counsellor, doctor or other type of healthcare professional who has done extra training in helping people with their sexual problems.

Sex therapy, unlike sexology, is a self-regulated industry. It is important to be sure the person you seek help from about your sex problems has sufficient training and knowledge, as well as being empathic and trustworthy to make it easier for you to explore your concerns.

SEXUAL COUNSELLORS

Professional counsellors focusing on helping people work through sexual concerns, including their sexual function, sexual relationships and sexual expression. Many sexual counsellors have years of experience and work under a professional body such as the Australian Counselling Association and the Psychotherapy and Counsellor Federation of Australia.

When looking for a counsellor, find out:

• if they have experience working with people with cancer

• if they are registered with a professional body

• what qualifications they have.

If you prefer to go through a trusted GP to gain the counselling you need, this is okay.

FEMALE HEALTH PHYSIOTHERAPISTS

Women’s health physiotherapists (also known as ‘pelvic floor physios’) are trained in caring for women with:

• muscle and bone issues during pregnancy, birth, breastfeeding and menopause

• pelvic floor muscle problems or dysfunction

• pelvic pain associated with cancer and its treatment.

Women’s health physiotherapists can help you overcome sexual difficulties caused by your cancer and its treatment. They can help you re-engage with your sexuality and sex life.

You are likely to have an internal vaginal examination to assess your pelvic floor muscles. Specific pelvic floor exercises and using a medical grade dilator may help improve pelvic floor muscles and lessen pain.

A women’s health physiotherapist who specialised in pelvic health for women and a sexologist helped me immensely as my vagina had shut down/atrophied. I had huge changes to my vagina after my treatment.

We include resources throughout the booklet, so if you have a specific interest, please refer to the relevant section, or check through the contacts we provide in this section.

Support through Ovarian Cancer Australia

Ovarian Cancer Australia provides a series of supports. You may wish to first connect by contacting our Helpline, or please use the links provided.

Helpline

1300 660 334 or email support@ovariancancer.net.au

Support groups

https://www.ovariancancer.net.au/page/96/support-groups

Young Women’s Network

www.ovariancancer.net.au/page/96/support-groups#register

Male Partner’s Program

www.ovariancancer.net.au/page/219/male-partners-program

Facebook support group

https://www.facebook.com/OvarianCancerAustralia/

Online support forum

https://forum.ovariancancer.net.au/

Support from a cancer nurse through the Teal Support Program

https://www.ovariancancer.net.au/page/97/teal-support-program

Other support events that run throughout the year

https://www.ovariancancer.net.au/page/99/support-events

If you have continuous feelings of sadness, anxiety and fear about your cancer and its treatment affecting your sexuality, we strongly advise you to seek medical help. Asking your medical team for a referral to a sex psychologist, counsellor or specialist can also help with any concerns you have about your sexuality, body image and relationships.

Support for LGBTQI+ communities

• QLife is a free, confidential LGBTQI+ phone and webchat service, 3 pm to midnight every day. Talk to a peer counsellor for LGBTI-specific support, information and referrals, including for people with cancer. qlife.org.au or 1800 184 527.

• LGBTI Health Australia provides information on health-related programs and services for LGBTIQ+ and other sexuality, gender and bodily diverse people and communities. www.lgbtiqhealth.org.au or (02) 8568 1123

• Cancer Council Helpline is a free, confidential telephone information and support service providing contacts for state-based services for the LGBTIQ+ community. 13 11 20

• Australian LGBTIQ Multicultural Council is a national body that advocates for the rights of multicultural and multifaith LGBTIQ individuals and communities. www.agmc.org.au

• BlaQ empowers the Aboriginal and Torres Strait Islander LGBTQ+ community across Australia through innovation, inclusion, understanding and advocacy. www.blaq.org.au

• Trans Pride fosters a sense of belonging and empowers trans and gender-diverse people across Australia. www.transprideaustralia.org.au

Aboriginal and Torres Strait Islander people

• Cancer Council NSW has a range of information about cancer written for Aboriginal and Torres Strait Islander people. www.cancercouncil.com.au or call 13 11 20

• Cancer Australia has a booklet on lymphoedema and other issues around having cancer for Indigenous women. www.canceraustralia.gov.au

People who are deaf or hard of hearing

• National Relay Service is for people who are deaf, hard of hearing or have difficulty speaking. You can call any phone number through the National Relay Service. You can use the internet, a telephone typewriter (TTY) or a regular phone (for people with speech impairment) to call the service. TTY users call 13 36 77 for regular phone numbers or 1800 555 677 for 1800 numbers. Speak and Listen users call 1300 555 727 or 1800 555 727 for 1800 numbers.

Sign language interpreting

• National Interpreting and Communications Services provides sign language interpreting services. Ovarian Cancer Australia can also arrange an interpreting service for those of you who need our Teal Support or Nurse Helpline. www.nicss.org.au

Books

• Sex and cancer: Connect with your body and rekindle the spark. Amanda Hordern, Hordern Miller & Associates 2021. This book combines neuroscience with simple and practical techniques to help you reclaim your sexual confidence, desire and happiness.

• Woman Cancer Sex. Anne Katz, Taylor and Francis 2020. Written for women with cancer – covers sexual functioning, depression, physical and emotional feelings, and specific strategies to treat the problems.

• Lives interrupted: Women and gynaecological cancer. David Allen & Genevieve Green, Vivid Publishing, 2018.

• Sex for one: The joy of self-loving. Betty Dodson, Harmony/Rodale 2012. This guidebook takes the shame out of selflove.

• Where did my libido go? Rosie King, Random House Australia 2010. Written for women who feel little or no desire for sex.

• Resurrecting sex: Solving sexual problems and revolutionizing your relationship. David Schnarch 2003. A book about how couples can work on their sexual relationship.

• Good loving, great sex: Finding balance when your sex drives differ. Rosie King, Random House Australia 1998. Provides readers with the skills to build a sensual and satisfying sexual relationship, despite differing sex drives.

Other useful services

• Australasian Menopause Society – www.menopause.org.au

• Australian Council of Stoma Associations – www.australianstoma.com.au

• Australian Physiotherapy Association – www.choose.physio

• Bladder and bowel information – www.bladderbowel.gov.au

• Beyond Blue – www.beyondblue.org.au

• Carer Gateway – www.carergateway.gov.au

• Carers Australia – www.carersaustralia.com.au

• Continence Foundation of Australia – www.continence.org.au

• Jean Hailes for Women’s Health – www.jeanhailes.org.au

• Pelvic Pain Foundation – www.pelvicpain.org.au

• Relationships Australia – www.relationships.org.au

• Society of Australian Sexologists – www.societyaustraliansexologists.org.au

Ovarian Cancer Australia wishes to thank AstraZeneca for its assistance in funding this important resource.

We extend our heartfelt thanks to the staff and students at The University of Melbourne and The Royal Women’s Hospital, Melbourne, for their work on the study which inspired this resource. We are especially grateful to the women who participated and provided their honest and moving words throughout the booklet. We would also like to thank the following consumers and health professionals for their enthusiastic involvement in the review of this resource and for sharing their expertise and sincere and important stories.

• Bianca Galan-Dwyer, consumer

• Renata Langenhan, consumer

• Professor Martha Hickey, Professor of Obstetrics and Gynaecology, University of Melbourne

• Dr Amanda Hordern, Sexuality expert and author

• Dr Michelle Peate, Program Leader for the Psychosocial Health and

  Wellbeing Research (emPoWeR) Unit, University of Melbourne

• Hayley Russell, Senior Research Manager, Ovarian Cancer Australia

• Editor: Rosemary Moore

• Writer: Annie Angle, Specialist Oncology/Palliative Care Nurse/Health Writer