- Most sexual difficulties experienced by women living with cancer or living beyond cancer present as a loss or reduction in sexual desire, difficulty in becoming aroused, sexual pain or orgasmic changes.
- It’s important to remember that there are many options which can reduce or alleviate your symptoms. These include the use or application of vaginal dilators and vibrators, moisturisers and lubricants, oestrogen, plus talking or psychosexual therapies.
- Sexual difficulties should not be taboo, getting help when it’s required is as important to your recovery as any other aspect of care you receive.
Acknowledging how common sexual dysfunction is among women (and men) who are living with cancer and living beyond cancer is key to moving forward, particularly when it is affecting your quality of life.
Here, two Perci Professionals – psychosexual therapist Dr. Isabel White and gynaecological cancer nurse and menopause specialist Johanna Bowie – outline the sexual difficulties that can occur after chemo, treatment or surgery, plus ways to reduce or alleviate your symptoms.
The most common sexual difficulties experienced by women during and after chemo, radiotherapy, a mastectomy or other cancer treatment are:
- Loss of or reduced sexual interest or desire
- Difficulty in becoming aroused (lack of sexual feelings & vaginal dryness)
- Sexual pain
- Orgasmic changes or difficulties
Loss of sexual desire or interest is extremely normal
Loss of sexual desire or sexual interest is one of the most common sexual difficulties experienced by women during and after cancer treatment and help is sought when it is of concern or causing distress for you as an individual or affecting you as a couple.
Sexual dysfunction is a common complaint of women after gynaecological cancer, affecting up to 90% of survivors.N Onujiogu et al, 2011
Loss of desire can be associated with other psychological adjustments you may be going through, including anxiety or low mood, altered body image, femininity or infertility concerns and relationship difficulties.
If these types of adjustment difficulties are contributing to low sexual interest, then psychological counselling or therapy may be particularly helpful. Levels of sexual desire often improve as you recover both emotionally and physically from the burden of acute treatment side-effects, or when low mood or heightened anxiety improves.
Low desire can also be secondary to other treatment-induced sexual difficulties such as sexual pain. Effective management of the primary sexual difficulty often leads to improved levels of desire as sexual function and confidence improves.
Persistent low sexual desire and arousal is commonly associated with endocrine treatment for breast cancer and may cause distress or make treatment compliance difficult over time. In these circumstances, psychosexual therapy can help women and their partners to explore a broader range of motivations to being sexual, including being sexual in the absence of spontaneous desire, even if that has not been your pre-treatment experience.
The aim of psychosexual therapy is to assist you to understand what these altered patterns of desire and sexual responsiveness mean for you and your partner(s) and how to continue to derive sexual pleasure and satisfaction from sexual and intimate expression.
Sex after radiotherapy
Pelvic radiotherapy is frequently used to treat gynaecological and other cancers affecting the pelvic organs such as rectal, anal or bladder tumours. This can be given as a stand-alone treatment, after surgery or systemic anti-cancer treatment, or with concurrent chemotherapy.
External beam pelvic radiotherapy and internal treatment (brachytherapy) can cause vaginal pain, radiation cystitis, narrowing (stenosis) or shortening of the vagina and formation of adhesions (scar tissue). Vaginal dryness and vulval itching can also occur after pelvic radiotherapy.
Depending on the dose and site of radiation delivered, it is also likely that pre-menopausal women will go on to experience a treatment-induced early menopause during or soon after completion of treatment.
Vaginal health and painful sex with cancer
Vaginal dryness, narrowing and sexual pain can also be associated with vaginal graft versus host disease that can develop in women who have had a stem cell transplant for haematological cancer. Fortunately, there are treatments and things that can be done to help reduce or alleviate these symptoms.
Vaginal pain can also occur following some types of pelvic or vulval surgery where there are changes to the dimensions of the vagina (vaginal shortening after radical hysterectomy or narrowing after removal of the anterior (upper wall) or posterior (back wall) wall of the vagina as may occur after surgery for bladder cancer or rectal cancer. Pain can also occur through surgery to the vulva that may lead to scar tissue formation and tightening of the vaginal entrance.
Vaginal dilators and vibrators
Vaginal dilator use is recommended for all women after pelvic radiotherapy and for smaller numbers of women after certain types of vaginal or vulval surgery. Many cancer centres will provide a set of graduated dilators (normally 4 sizes) towards the end of treatment and the rationale for using them is to reduce the likelihood of vaginal narrowing and shortening occurring. This is important not only to enable women to continue to have comfortable and pleasurable penetrative sex, but also because vaginal examinations are a regular part of follow-up care, particularly in gynae-oncology.
Regular use of vaginal dilators will also help the pelvic floor muscles, the bladder, and the bowel, all of which can be affected by the radiation. The NHS normally makes plastic vaginal dilator sets available through your radiotherapy treatment centre or on prescription, but there are many other silicone or other vaginal dilator sets available. Graduated size vaginal dilator sets and individual dilators can be purchased from various retail outlets and on-line and can be found readily through a standard “google” search by entering the terms ‘vaginal dilators’ or ‘vaginal trainers’.
How to use vaginal dilators
Flexible silicone dilators are effective and often more comfortable to use than the more rigid plastic varieties, although the more rigid varieties still have their place and may be easier to use for women with limited range of motion or reach. It is advisable to start with the smallest size dilator and slowly work your way up the sizes over several weeks or even months.
Using these 4-5 times a week initially will increase the likelihood that the vagina remains patent. It may be possible to reduce the frequency of dilator use once the vaginal changes (fibrosis development) become stable, usually after the first 18-24 months following treatment completion, assuming that penetrative sex is both possible and comfortable (JM Stahl et al, 2019).
Some women prefer using a vibrator over vaginal dilators, and this is fine, it is all about finding something that you are comfortable with and willing to continue using on a regular basis. Vibrators often feel a little less medical and slightly more “normal” for many women, and less of a reminder of your previous cancer treatment, which can be helpful in supporting you to continue their use over time.
Vaginal dryness after cancer treatment
Vaginal dryness, vaginal atrophy or atrophic vaginitis are common following pelvic radiotherapy, but also after other anti-cancer treatments such as endocrine treatment for breast cancer. These are common problems that can affect women of any age, but sadly are often not spoken about and so women may not always be aware of what can be done to help alleviate these problems.
Up to 50% of women with gynaecological cancer report chronic sexual difficulties.D Grimm et al, 2015
Endocrine therapy and chemotherapy can make vaginal tissues dryer and thinner than prior to treatment. Lower oestrogen levels caused by a treatment induced menopause also results in vaginal dryness. The vaginal lining becomes thinner and loses some of its elasticity. In turn, this can make intercourse painful rather than enjoyable. The Ph balance of the vagina can also change after anti-cancer treatment, which then makes some women more susceptible to both vaginal candida (thrush) and urinary tract infections.
Thankfully, these problems can often be readily addressed by the regular use of intimate lubricants, vaginal moisturisers and in some cases vaginal oestrogen. Please note it is always advisable to discuss the use of vaginal oestrogen treatment with your oncology team, to ensure that it is oncologically safe to do so.
Coping with cancer and a loss of libido
Vaginal moisturiser and lubricants
Improving your vaginal health through the regular use of a vaginal moisturiser, and the on-demand use of an intimate lube, can make a significant difference to your sexual wellbeing (Edwards & Panay, 2016).
If you have a partner, it is important that you are open and honest with them about vaginal pain, discomfort, and dryness. They may think you are avoiding sexual intimacy for other reasons, but if you communicate effectively and work together, it may be that sexual intimacy becomes enjoyable and comfortable for you both again.
The aim of lubricants is to make sexual intercourse, or the use of vaginal dilators and vibrators more comfortable. They are a “quick fix”, but do not offer prolonged, day to day comfort. It may be that both partners use a lubricant when having sex and this can help with comfort by reducing friction within the vagina. There are many lubricants, and they are available as water-based, oil-based, and silicone-based formulations. Silicone lubricants cannot be used with condoms as it may cause them to thin or tear.
Vaginal moisturisers are used for day-to-day comfort. Vaginal dryness or atrophy can be extremely uncomfortable and even painful and in more severe cases may make walking, tight-fitting clothes and exercise uncomfortable.
The aim of a vaginal moisturiser is to replace moisture and elasticity to the vagina. Moisturisers contain polymers that adhere to the vaginal wall, so their action is quite different to that of a lubricant. Products often recommended include Hyalofemme, YES VM, Sylk Intimate, Replens and Regelle. These products are intended to be used every 2-3 days and are longer lasting than a vaginal lubricant.
It is possible to discuss this with your GP, as a number of these products are available with an NHS prescription, although they are also available without prescription in most pharmacies or online. Moisturisers are often supplied in an applicator, making them easier to insert and apply to the vault of the vagina.
Moisturisers don’t generally make a difference to symptoms overnight, but with regular use, symptoms should start to improve within 2-3 months. Some women may prefer to delay having penetrative sex until they have been using vaginal moisturisers for 6-8 weeks to give the product time to improve vaginal health. For others, the additional use of vaginal lubricants can help to make sexual intimacy after treatment more comfortable and enjoyable for women and their partners.
Vaginal oestrogen is another option for many women after cancer treatment. It is a treatment that should always be discussed with your oncology team, and an open discussion about the pros and cons of its short term or longer-term use should follow. It is important to note that vaginal oestrogen is still an option after cancer if treatment has led to impaired ovarian function, irrespective of the woman’s age. There are some oestrogen driven cancers (e.g., breast or endometrial cancer) where vaginal oestrogen is contraindicated (should not be used), but once again weighing up the potential benefits and possible risks is a conversation to have with your medical team.
Topical, or vaginal oestrogen is not significantly systemically absorbed by the body and tends to only treat vaginal symptoms. However, many women who use systemic HRT still require topical oestrogen to treat vaginal symptoms. It can be used for long periods of time and is a very safe way of delivering a small dose of oestrogen directly to the vaginal tissue. Vaginal oestrogen comes in various forms, including vaginal pessaries which are a small tablet inserted into the vagina, usually at night. The pessaries are inserted every night for the first two weeks, then twice a week thereafter.
Vaginal oestrogen can also come in the form of a cream or a gel, usually inserted at night and again given every night for the first two weeks, then twice weekly. These usually come with an applicator, to make insertion and application easier.
The final option is a flexible silicone ring, which is inserted into the top of the vagina either by a health care professional or, if you feel comfortable doing so, you can do it yourself. These rings last 90 days and then need to be replaced. They will slowly release oestrogen over the 90-day period and can stay in place during sexual intercourse or vaginal dilation.
A trial in 2018 (CM Mitchell, S Reed et al., 2018), showed that vaginal oestrogen treatment and vaginal moisturisers both contributed to a decrease in vaginal symptoms. So, if your oncologist is keen for you to explore non-hormonal vaginal moisturisers in the first instance, it is good to know that there are many options available.
Even though you may have addressed physical symptoms that are having a negative impact on your sexual wellbeing, it is also important to consider altered body image concerns you may experience. It may be that your cancer diagnosis has meant you have had to undergo major surgery including a mastectomy, you may have surgical scars or you may have gained or lost weight during your treatment.
It is important to discuss this with someone you feel comfortable talking to. This could be your oncology CNS, it may be your GP, or you may find it helpful to talk to a counsellor or psychologist if you are finding adjustments and acceptance of body changes challenging and upsetting to face. Some people also find talking to others in support groups beneficial.
If you or your partner are feeling particularly apprehensive about resuming sex or are experiencing sexual difficulties or barriers to taking forward some of the physical health suggestions we have discussed here, a psychosexual and relationship therapist may be of great benefit. Some people prefer to attend these sessions on their own, but it can also be helpful attending sessions with your partner.
Encouraging intimacy can also be helpful. Kissing and cuddles may be all that you feel ready for at this time but being regularly intimate together in a “low demand” way can over time lead to an increase in desire for sex and feeling the beginnings of arousal. Being open and communicating with your partner is also vital. Your partner may have no idea about how you are feeling right now, and this can lead to misunderstandings and assumptions.
Coping with pain during sex with cancer
In addition to the practical vaginal health strategies already discussed, sexual pain can also be helped by psychosexual therapy and these approaches are often used together.
Women who have experienced sexual pain can be nervous or fearful of resuming penetrative sex again, and their partners may also be worried about causing pain. If pain is not addressed at an early point, it can become associated with sex and lead to avoidance by one or both partners.
Psychosexual therapists work with individuals or couples to break sexual expression down into smaller steps and to gradually introduce sexual behaviours in a way that sexual confidence and couple communication can be supported.
If the shared goal of the woman and her partner is to resume penetrative intercourse, then the therapist works in partnership to agree a stepped approach to gradually move from non-penetrative sexual pleasuring behaviours that promote trust, communication, and relaxation to those that are more sexually arousing and finally to those that involve static and then moving penetrative behaviours, using the woman or partner’s fingers, dilators, vibrators and / or penile penetration.
Orgasm may be more difficult to reach if treatment has had a negative impact on the ability to become physically and mentally aroused.Dr. Isabel White, Perci psychosexual therapist
All psychosexual therapy exercises are carried out at home in the privacy of the couple’s own home, not in the therapy room or clinic. Women and their partners are supported to talk in therapy about how things are progressing to identify any physical, emotional, or relational blocks or barriers they may need help to overcome and to build on learning and successes.
Psychosexual therapists can also give advice about different sexual positions that can help with managing fear of or actual vaginal pain, such as the woman-on-top position, and the use of vaginal health strategies, sexual aids, and pelvic floor (Kegel) exercises to help in the management of sexual pain. You may also be recommended to consult a specialist pelvic floor physiotherapist who are experts in helping women with pelvic floor muscle dysfunction, tension or trigger points that can contribute to sexual pain.
Orgasms and cancer
Reaching climax or orgasm through sexual stimulation by ourselves or with a partner is seen by many as one of the satisfying aspects of being sexual / expressing ourselves sexually. However, women can vary in the extent to which this is an important element of sexual satisfaction on every occasion and also vary in the type and intensity of stimulation necessary to achieve orgasm.
Understanding what is normal or usual for each one of us is helpful before we consider how the experience of cancer and its treatment may affect our experience of orgasm.
Orgasmic changes may be experienced after pelvic surgery or radiotherapy for a rectal or gynaecological cancer including prostate or cervical cancer. They can also occur following treatments that affect our level of female hormones, such as endocrine therapy for breast cancer or after ovaries have been removed or irradiated, especially if we are not able to have hormone replacement therapy (HRT).
Changes in nerve function and blood flow affecting the pelvic organs and the genital region, particularly the vagina, vulva, and clitoris, may result in a reduced intensity of orgasmic sensation and some women find that it takes them longer to reach climax.
Orgasms after a hysterectomy
Some women who have had a radical hysterectomy for gynaecological cancer experience a change in orgasmic sensation due to the loss of uterine contractions which some women are aware of at the time of orgasm, while others may notice changes associated with the loss of the cervix or surgical changes in the vagina caused by resection of the anterior (upper) vaginal wall.
Orgasm after menopause
For women who have a treatment-induced menopause, particularly those women still receiving endocrine treatment for breast cancer, there may be a reduced intensity of orgasm or noticing that it takes longer and may require more intense or different sexual stimulation to reach climax.
Emotional dificulties and orgasm
Orgasm changes or difficulties can also occur because of emotional difficulties such as high anxiety or depression, as a side-effect of antidepressant medication (selective serotonin reuptake inhibitors SSRIs), drugs used to reduce anxiety, as a side-effect of some strong pain control medication (strong opioid drugs such as morphine or diamorphine), cannabis or increased alcohol intake.
Orgasm may also be more difficult to reach if treatment has had a negative impact on our ability to become physically and mentally aroused. Every woman is unique in the changes she may / may not experience and the specific ways in which changes in sexual stimulation and pleasuring can improve satisfaction with orgasm and sexual enjoyment or wellbeing overall.
If you are concerned about changes you have noticed in your ability to reach orgasm or in the sensation of orgasm, then mention this to someone you feel you can talk to in your treatment team or speak to your GP. They may be able to help identify what may be the underlying reason(s) for these changes and to support you to take steps to improve the situation, should you want to explore what can be helpful, through medical or psychosexual therapy approaches.
Your treatment team or GP may refer you to specialist sexual medicine, menopause, women’s health, gynaecology and / or psychosexual therapy service to investigate the precise reasons for this difficulty and to seek treatments and management strategies to help you.
While we have ensured that every article is medically reviewed and approved, information presented here is not intended to be a substitute for professional medical advice, diagnosis, or treatment. If you have any questions or concerns, please talk to one of our healthcare professionals or your primary healthcare team.
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