Sexuality

Evidence Reviewed as of before: 01-02-2021

Author(s)*: Annabel McDermott, OT; Annie Rochette, OT, PhD

Expert Reviewer: Louis-Pierre Auger, OT, MSc

Patient/Family Information

Introduction

Sexual issues are among the most important in recovery, but they can be the hardest for stroke survivors and their partners to discuss. However sexuality is a topic that can be addressed by one of the client’s health care providers (e.g. Neurologist, Physical therapist, Occupational therapist, Speech pathologist, Physician, Urologist, or Gynecologist). Given that sex is a private matter, the therapist may feel uncomfortable addressing it with a client, or the client may feel uncomfortable or shy to ask questions. It is important to realize that sexuality can be a serious concern for clients after a stroke, and that there are ways of making sex easier for clients, as long as they are willing to share their concerns and ask questions.

The patient/family section addresses common fears and concerns regarding sex and intimacy, timing for resuming sexual activity, special physical challenges, sexual positions, among other topics.

Approximately 50% of individuals experiencing sexual dysfunction following stroke. Difficulties resuming sexual activity may relate to physical, psychological and/or emotional deficits resulting from or related to the stroke. However, sexuality is not frequently addressed in stroke rehabilitation and there is limited research regarding sexual rehabilitation following stroke. The clinician information reviewed three types of interventions: psychoeducation/counselling, pelvic floor muscle retraining, and physical therapy focussing on a return to sexual activity.

Patient/Family Information

Is it normal to have difficulties with sex?

Yes. Many people who have had a stroke experience decreased sexual activity. Problems with sexual performance can occur for a number of reasons.

After a stroke men and women can experience various physical impairments, such as:

Fatigue
Muscle weakness, stiffness or tightness
Pain
Reduced mobility
Urinary incontinence (inability to hold in urine)
Speech impairment (aphasia)

People also experience emotional or psychological problems, such as:

Depression, anxiety and mood changes
Memory loss
Insecurity (feeling less attractive)
Fear of partner rejection

Body changes specific to sex can also occur, such as:

Erectile difficulties
Decreased vaginal lubrication
Problems with ejaculation
Problems with orgasm
Decreased libido (desire)

These difficulties can impact on your ability to resume a sexual relationship. However, sex can still be a part of your life after your stroke.

How long after should I wait before becoming sexually active again?

You can try to become sexually active again as soon as you feel comfortable. It is normal and common to feel nervous about having sex after your stroke, or to lose interest in sex after a stroke. It is important to be open with your partner so that you can work together to bring sexuality back into your life. It is often helpful to start by reintroducing familiar activities into your relationship, such as hugging, kissing and cuddling. Talk with your partner about how you feel, any changes you have experienced, and any concerns you may have. Talking together can help you feel connected and can strengthen your relationship. If you are concerned about your health and need guidance before becoming sexually active again, seek the help of a healthcare professional.

Who else can I talk to about having sex?

You can talk about sex with your health care providers. However, since sex is a private matter, the therapist may feel uncomfortable addressing it with you, or you may feel uncomfortable or shy asking them questions. Do not hesitate to seek information from one of your health care providers about any concerns or questions you may have. People you can ask include:

Neurologist
Physical therapist
Occupational therapist
Speech pathologist
Neurophysiologist
Physician
Urologist (specializes in male urinary and reproductive/sexual problems)
Gynaecologist (specializes in female reproductive and sexual problems)

I am afraid that sexual activity can cause another event. Is this possible?

There is no evidence that sex can cause another stroke. The following information comes from research and may help you return safely and confidently to sexual activities after a stroke.

Foreplay: Studies show that foreplay is very important. Spending more time on foreplay will cause your heart rate to increase at a slower rate. This will reduce physical effort and cardiac stress during sexual intercourse.

Self-stimulation and partner stimulation: Self-stimulation or stimulation by your partner is less physically demanding than sexual intercourse. These forms of sexual activity are likely to cause a smaller increase in heart rate and can be very satisfying.

Masturbation: Research has shown that masturbation does not increase your risk of having another stroke.

Position: Research shows that for men, the male-on-bottom position is less physically demanding than the male-on-top position. Take the time to find positions that are comfortable for you and your partner (if applicable), and that allow easy movement.

Time: It is advised that you do not engage in sexual activity immediately or shortly after a meal, as your body takes time and uses energy to digest food. Wait a couple of hours before having sex to reduce the demands on your body. Similarly, plan for sexual intimacy when you are not too tired and have time to enjoy the interactions.

Do physical changes affect sexual behaviour or ability?

After a stroke many people experience pain, muscle paralysis, weakness or muscle stiffness on one side of their body. These changes can impact on the way a person experiences touch to the affected arm/leg, and their ability to move or find a comfortable position for sex. Taking the time to find comforting touch and comfortable positions is a good way to make sex enjoyable. For instance, it might be easier for the person who has had a stroke to lie on their back, or to lie side-by-side. If you experience altered sensation or pain on one side of your body, your partner can touch and caress the non-affected arm/leg.

Your Physical Therapist and Occupational Therapist may be able to recommend assistive devices to help with moving and to support safe, comfortable sexual activities and positions. Talk with your doctor if you experience pain, spasticity (i.e. tight muscles) or other concerning symptoms.

Do psychological changes affect sexual behaviour or ability?

The physical changes that occur after a stroke can impact on self-confidence. Loss of independence can impact on self-worth. Emotional difficulties such as depression, anxiety, decreased self-esteem, impaired body image or fear of having another stroke can impact on a person’s ability to return to sexual activity and enjoy sex. Changes in memory after a stroke can also affect your sexual relationship. It is important to have accurate information. Talk with your health care provider or a specialist such as a psychiatrist, psychologist or sex therapist. Take the time to discuss your concerns and ask any questions. It is also important to look after yourself – find ways to feel independent, maintain your personal hygiene and grooming, find hobbies that interest you, eat nutritious foods and keep up regular gentle exercise. These activities will help you feel positive and healthy. Communicating with your partner (if applicable) about psychological changes from the stroke can also benefit your sexual relationship.

I have difficulty communicating with my partner. What should I do?

Some people have difficulty communicating after a stroke. Aphasia is a disorder that affects the ability to produce speech or understand what others are saying. Communication problems can make it difficult to have intimate conversations and express your feelings to your partner. If you have difficulty using words, find other ways to get your message across. Body language (e.g. gestures, facial expressions) can support your words. Draw or write down what you want to say. Find simple hand signals to communicate a feeling to your partner (e.g. pointing to your heart with your hand can be your way of saying “I love you”). Talk with your Speech & Language Pathologist about management of aphasia after stroke.

Are there treatments available to regain sexual function?

There is not enough research on specific treatments that improve sexual function after stroke. There are medications to address specific sexual impairments, special materials or devices to help sexual activity. Lifestyle changes such as stopping smoking, reducing alcohol, modifying your diet or losing weight may be of benefit to some people. Consult with your health care provider and physician before using any medications prescribed for sexual function. Therapy sessions with a psychologist or sex therapist can be useful for people with psychological concerns about sex after a stroke.

I am taking new medications. Can medications have an impact on my sexual functioning?

Some medications can impact on sexual activity. Talk with your physician if you have any concerns regarding your medication. Do not stop taking medication without consulting your physician.

FOR THE SPOUSE/PARTNER

My partner has different sexual behaviours that they did not have before. What is causing this?

Changes in sexual activity are common after stroke. The physical and emotional difficulties from stroke can impact on your partner’s sexual activity.

In rare cases, some people show unexpected changes in their sexual behaviour after a stroke, such as:

Changes in libido
Changes in sexual activity
Inappropriately removing clothes
Inappropriately physically touching others
Masturbating at inappropriate times or in inappropriate places

The exact cause of these behaviours is unknown, but may relate to damage to specific regions of the brain. If your spouse shows any of these activities, talk to the healthcare team for suggestions on how to handle the behaviours.

Is it possible to be carer and sexual partner at the same time?

As much as possible, the role of carer should be separated from the role of sexual partner. To achieve this balance, support your partner’s independence where possible. If possible, find someone to help with your partner’s physical care. Find moments to enjoy together – laugh, talk and connect over shared interests and memories. Remember that it is important for you to continue to participate in activities that you enjoy and to spend some time alone without feeling guilty. Research has shown that in taking care of yourself, you will be better able to care for your partner.

Clinician Information

When reviewing the findings, it is important to note that they are always made according to randomized clinical trial (RCT) criteria – specifically as compared to a control group. To clarify, if a treatment is “effective” it implies that it is more effective than the control treatment to which it was compared; if a treatment is not effective, it implies that it was not more effective than the control treatment. Non-randomized studies are no longer included when there is sufficient research to indicate strong evidence (level 1a) for an outcome.

Sexual dysfunction occurs in approximately 50% of individuals following stroke (Stratton et al., 2020). Reduced sexual activity and sexual satisfaction can be caused by a range of physical, psychological and/or emotional factors resulting from or related to the stroke – spasticity, muscle weakness, disrupted sensation, pain, fatigue, depression and emotional lability, communication difficulties, medication side effects, decreased libido, loss of independence, changes in body function and body image, and safety concerns (Kautz & Van Horn, 2017; Winstein et al., 2016). Despite the high incidence of sexual dysfunction following stroke, sexuality is not commonly addressed in stroke rehabilitation (Schmitz & Finkelstein 2010). While guidelines recommend providing sexual education to patients recovering from stroke (Winstein et al., 2016), patients’ and partners’ unmet need and desire for sexual rehabilitation is attributable to a lack of professional training and standardised practices (Grenier-Genest et al., 2017).

This Stroke Engine clinician information section includes a total of four studies (two high quality RCTs, one fair quality RCT and one non-randomized study) that investigate non-pharmacological post-stroke sexual rehabilitation interventions. Two of these studies examined single-session psychoeducation/counselling, one study examined a 12-week physical therapy pelvic floor muscle retraining program, and the fourth study examined a 2-week physical therapy rehabilitation program with a focus on return to sexual activity (e.g. positioning, bed mobility, etc).

Results from this review are reported according to stage of stroke. One study (and its pilot study) was conducted with participants in the acute phase of stroke recovery, and found that a single-session psychoeducation / counselling session was no more effective than written educational materials in improving functional independence, mood, quality of life or sexual behaviour. A study conducted with individuals in the subacute phase of stroke recovery found that pelvic floor muscle training was no more effective than no treatment for improving erectile dysfunction in this phase of stroke recovery. A third study conducted with patients across the subacute/chronic phases of recovery showed that a 2-week physical therapy sexual rehabilitation programme was more effective than conventional physical therapy for improving mood and sexual behaviour among these participants. The final study did not define the stage of stroke recovery of its participants, but reported that a single-session sexual rehabilitation programme with written information was more effective than no treatment for improving sexual behaviour, knowledge and satisfaction.

Overall, results from this review support earlier views that there is insufficient evidence regarding the efficacy of post-stroke sexual rehabilitation interventions. A recent Cochrane review on the topic (Stratton et al., 2020) comprised three RCTs (two are included in this Stroke Engine module; the third was outside the scope of this review) and similarly concluded that there is insufficient evidence regarding the effectiveness of sexual rehabilitation programs to reduce post-stroke sexual dysfunction.

Results Table

View results table

Outcomes

Acute phase - Sexual rehabilitation programmes

Functional independence

Not effective

One high quality RCT (Ng et al., 2017) and its pilot study (Samson et al., 2015) investigated the effect of a sexual rehabilitation programme on functional independence in the acute phase of stroke recovery.

The high quality RCT (Ng et al., 2017) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Functional independence was measured by the Functional Independence Measure (FIM – Motor total : Self-care, Sphincter control, Mobility, Locomotion; Cognitive total : Communication, Social, cognition scores) at 6 weeks and at 6 months post-stroke. No significant between-group difference was found at either timepoint.

The pilot study to Ng et al., 2017 (Samson et al., 2015) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Functional independence was measured by the FIM (Total, Motor total : Self-care, Sphincter control, Mobility, Locomotion; Cognitive total : Communication, Social, cognition scores) at 6 weeks. No significant between-group difference was found.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a sexual rehabilitation programme + written material are not more effective than a comparison intervention (written material alone) for improving functional independence in the acute phase of stroke recovery.
Note: The pilot study was not considered to determine level of evidence.

Mood

Not effective

One high quality RCT (Ng et al., 2017) and its pilot study (Samson et al., 2015) investigated the effect of a sexual rehabilitation programme on mood in the acute phase of stroke recovery.

The high quality RCT (Ng et al., 2017) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Mood was measured by the Depression, Anxiety and Stress Scale (DASS – Total, Depression, Anxiety, Stress scores) at 6 weeks and at 6 months post-stroke. No significant between-group difference was found at either timepoint.

The pilot study to Ng et al., 2017 (Samson et al., 2015) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Mood was measured by the DASS (Total, Depression, Anxiety, Stress scores) at 6 weeks. No significant between-group difference was found.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a sexual rehabilitation programme + written material are not more effective than a comparison intervention (written material alone) for improving mood in the acute phase of stroke recovery.
Note: The pilot study was not considered to determine level of evidence.

Quality of life

Not effective

One high quality RCT (Ng et al., 2017) and its pilot study (Samson et al., 2015) investigated the effect of a sexual rehabilitation programme on quality of life in the acute phase of stroke recovery.

The high quality RCT (Ng et al., 2017) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Quality of life was measured by the Stroke and Aphasia Quality of Life Scale – 39 Generic (SAQOL-39g – Total, Physical, Communication, Psychosocial scores) at 6 weeks and at 6 months post-stroke. No significant between-group difference was found at either timepoint.

The pilot study to Ng et al., 2017 (Samson et al., 2015) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Quality of Life was measured by the SAQOL-39g (Total, Physical, Psychosocial, Communication scores) at 6 weeks. No significant between-group difference was found.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a sexual rehabilitation programme + written material are not more effective than a comparison intervention (written material alone) for improving quality of life in the acute phase of stroke recovery.
Note: The pilot study was not considered to determine level of evidence.

Sexual behaviour

Not effective

One high quality RCT (Ng et al., 2017) and its pilot study (Samson et al., 2015) investigated the effect of a sexual rehabilitation programme on sexual behaviour in the acute phase of stroke recovery.

The high quality RCT (Ng et al., 2017) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Sexual behaviour was measured by the Change in Sexual Functioning Questionnaire – Short Form (CSFQ-14 – Total, Pleasure, Frequency, Interest, Arousal, Orgasm scores) at 6 weeks and at 6 months post-stroke. A significant between-group difference was found on only one measure (CSFQ-14 – Arousal) at 6 months post-stroke, in favour of written material alone vs. sexual rehabilitation + written material.

The pilot study to Ng et al., 2017 (Samson et al., 2015) randomized patients to receive a single-session sexual rehabilitation programme + written material or written material alone. Sexual behaviour was measured by the CSFQ-14 (Total, Pleasure, Frequency, Interest, Arousal, Orgasm scores) at 6 weeks. No significant between-group difference was found.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a sexual rehabilitation programme + written material are not more effective than a comparison intervention (written material alone) for improving sexual behaviour in the acute phase of stroke recovery.
Note: The pilot study was not considered to determine level of evidence.

Subacute phase - Pelvic floor muscle training

Erectile dysfunction

Not effective

One high quality study (Tibaek et al., 2015) investigated the effect of a sexual rehabilitation programme on erectile dysfunction in the subacute phase of stroke recovery. This high quality RCT randomized male patients to receive pelvic floor muscle training or no treatment. Erectile dysfunction was measured using the International Index of Erectile Function (IIEF-5) questionnaire and a two-pronged Bother question (5-point satisfaction scale, Binominal scale regarding use of aids/appliances/medicine) at post-treatment (12 weeks) and follow-up (6 months). No significant between-group differences were found at either timepoint.
Note: The treatment group showed a significant improvement in Erectile Function (IIEF-5) scores from baseline to post-treatment.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that pelvic floor muscle training is not more effective than no treatment for improving erectile dysfunction in the subacute phase of stroke recovery.
Note: However, the group that received pelvic floor muscle training showed a significant improvement in erectile function at post-treatment.

Phase not specific to one period: Sexual rehabilitation programmes

Mood

Effective

One fair quality RCT (Vajrala et al., 2019) investigated the effect of a sexual rehabilitation programme on mood following stroke. This fair quality RCT randomized patients with subacute/chronic stroke to receive sexual rehabilitation + counselling or conventional physical therapy + counselling with no focus on sexual health for 2 weeks. Mood was measured by the Depression, Anxiety and Stress Scale (DASS – Depression, Anxiety, Stress scores) at follow-up (6 months). Significant between-group differences were found on all measures of mood, in favour of sexual rehabilitation + counselling vs. conventional physical therapy + counselling.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a sexual rehabilitation programme + counselling are more effective than a comparison intervention (physical therapy + counselling) for improving mood following stroke.

Sexual behaviour

Effective

One fair quality RCT (Vajrala et al., 2019) and one non-randomized controlled trial (Song et al., 2011) investigated the effect of a sexual rehabilitation programme on sexual behaviour following stroke.

The fair quality RCT (Vajrala et al., 2019) randomized patients with subacute/chronic stroke to receive sexual rehabilitation + counselling or conventional physical therapy + counselling (with no focus on sexual health) for 2 weeks. Sexual behaviour was measured by the Change in Sexual Functioning Questionnaire – Short Form (CSFQ-14) at follow-up (6 months). A significant between-group difference was found, in favour of sexual rehabilitation + counselling vs. conventional physical therapy + counselling.

The non-randomized controlled trial (Song et al., 2011) assigned patients (time since stroke not specified) to receive a single-session sexual rehabilitation programme + written information or no treatment. Sexual behaviour was measured at 1 month using a 4-item, 5-point sexual frequency scale (Sexual activity, Sexual intercourse). Significant between-group differences were found on both measures, in favour of a sexual rehabilitation programme vs. no treatment.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT and one non-randomized controlled trial that sexual rehabilitation programmes (provided with counselling or written information) are more effective than no treatment and a comparison intervention (physical therapy + counselling) for improving sexual behaviour following stroke.

Sexual beliefs and knowledge

Not effective

One non-randomized controlled trial (Song et al., 2011) investigated the effect of a sexual rehabilitation programme on sexual beliefs and knowledge following stroke. This controlled trial assigned patients with stroke (time since stroke not specified) to receive a single-session sexual rehabilitation programme + written information, or no treatment. Sexual beliefs and knowledge were measured at 1 month using the Sexual Beliefs and Information Questionnaire (Korean version). No significant between-group difference was found.

Conclusion: There is limited evidence (level 2b) from one controlled clinical trial that a sexual rehabilitation programme + written information are not more effective than no treatment for improving sexual beliefs and knowledge following stroke.

Sexual satisfaction

Effective

One non-randomized controlled trial (Song et al., 2011) investigated the effect of a sexual rehabilitation programme on sexual satisfaction following stroke. This controlled trial assigned patients with stroke (time since stroke not specified) to receive a single-session sexual rehabilitation programme + written information, or no treatment. Sexual satisfaction was measured at 1 month using the Derogatis Sexual Functioning Inventory (Korean version). A significant between-group difference was found, in favour of sexual rehabilitation + written information vs. no treatment.

Conclusion: There is limited evidence (level 2b) from one controlled trial that a sexual rehabilitation programme + written information are more effective than no treatment for improving sexual satisfaction following stroke.

References

Grenier-Genest, A., Gerard, M., & Courtois, F. (2017). Stroke and sexual functioning: a literature review. NeuroRehabilitation, 41, 293-315. DOI: 10.3233/NRE-001481.

Kautz, D.D. & Van Horn, E.R. (2017). Sex and intimacy after stroke. Rehabilitation Nursing, 42(6), 333-40. DOI: 10.1002/rnj.296.

Ng, L., Sansom, J., Zhang, N., Amatya, B., & Khan, F. (2017). Effectiveness of a structured sexual rehabilitation programme following stroke: a randomised controlled trial. Journal of Rehabilitation Medicine, 49, 333-40. DOI: 10.2340/16501977-2219.

Sansom, J., Ng, L., Zhang, N., & Khan, F. (2015). Let’s talk about sex: a pilot randomised controlled trial of a structured sexual rehabilitation programme in an Australian stroke cohort. International Journal of Therapy and Rehabilitation, 22(1), 21-8. DOI: 10.12968/ijtr.2015.22.1.21.

Schmitz, M.A. & Finkelstein, M. (2010). Perspectives on poststroke sexual issues and rehabilitation needs. Topics in Stroke Rehabilitation, 17(3), 204-13. DOI: 10.1310/tsr1703-204.

Song, H.S., Oh, H.S., Kim, H.S., & Seo, W.S. (2011). Effects of a sexual rehabilitation intervention program on stroke patients and their spouses. NeuroRehabilitation, 28, 143-50. DOI: 10.3233/NRE-2011-0642.

Stratton, H., Sansom, J., Brown-Major, A., Anderson, P., & Ng, L. (2020). Interventions for sexual dysfunction following stroke. Cochrane Database of Systematic Reviews, Issue 5. Art. No.: CD011189. DOI: 10.1002/14651848.CD011189.pub2.

Tibaek, S., Gard, G., Dehlendorff, C., Iversen, H.K., Erdal, J., Biering-Sorensen, F., Dorey, G., & Jensen, R. (2015). The effect of pelvic floor muscle training on sexual function in men with lower urinary tract symptoms after stroke. Topics in Stroke Rehabilitation, 22(3), 185-93. DOI: 10.1179/1074935714Z0000000019.

Vajrala, K.R., Potturi, G., & Agarwal, A. (2019). A pilot study of randomized clinical controlled trial on role of physiotherapy on physical and psychological dimensions of sexual health in post stroke patients. Indian Journal of Physiotherapy and Occupational Therapy, 13(4), 73-7. DOI: 10.5958/0973-5674.2019.00135.7.

Winstein, C.J., Stein, J., Arena, R., Bates, B., Cherney, L.R., Cramer, S.C., Deruyter, F., Eng, J.J., Fisher, B., Harvey, R.L., Lang, C.E., MacKay-Lyons, M., Ottenbacher, K.J., Pugh, S., Reeves, M.J., Richards, L.G., Stiers, W., Zorowitz, R.D. (2016). Guidelines for adult stroke rehabilitation and recovery: a guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke, 47(6), e98-169. DOI: 10.1161/STR.0000000000000098.