Sexual Function and Reproductive Health after Spinal Cord Injury

Original Editor - Wendy Oelofse

Top Contributors - Ewa Jaraczewska, Jess Bell and Kim Jackson  

Introduction

Sexual and reproductive functions are considered major factors affecting the quality of life of people with a spinal cord injury. An individual's sexual and reproductive functions depend on the level and the completeness of spinal cord injury. There are a number of direct or indirect effects on sexual functioning following spinal cord injury, and they include the ability to engage in sexual activities, sexual intimacy and relationships, sexual self-view, fertility and reproductive health.

It is recommended that a person with a spinal cord injury (SCI) should start to talk about their sexuality and sexual function as early as possible in the rehabilitation process.  The person with a SCI should develop a good understanding of their body after the SCI. This could include formal sex education, informal discussions with a health care professional and/or other people with SCI, experimentation and discovery with a partner.

This article contains additional notes for Wendy Oelofse's Plus course on Sexual Function and Reproductive Health after Spinal Cord Injury.

Best Practice Guidelines to Promote Sexual Health After SCI

The following practice guidelines help educate, evaluate, and treat sexual concerns after SCI:

1. Communicate
2. Ask about sexual and medical issues before the illness
3. Refer if appropriate
4. Consider partner, cultural, and psychological issues
5. Perform physical and neurological exams with special attention to T11-L2, S2-5
6. Educate the patient
7. Suggest practice
8. Follow up with a review of the basics
9. If problems persist, treat confounding and iatrogenic issues
10. Follow-up again
11. Treat the basics, eg, provide medications to improve desire or arousal
12. Follow up again with further communication
13. Use more advanced techniques, refer for invasive techniques or further counselling

Communication About Sexual Health After Spinal Cord Injury

Clinicians must be comfortable and knowledgeable in communicating with the patient about sexual health after spinal cord injury. Appropriate communication includes a demonstration of respect through the following:

• providing privacy
• asking permission to proceed with more probing questions
• being patient
• allowing the person time to respond
• tailoring the depth of the discussion to the client's readiness

The following techniques can be helpful when discussing sexual health with a patient:

• Use a matter-of-fact tone of voice and neutral body language
• Use postural echo (clinician and client sit in mirror image to each other)
• Make eye contact
• Use a written scale or questionnaire
• Use open-ended questions
• Let the patient tell his or her story without interruption
• Verbally acknowledge the patient's concerns
• Use reflective listening to let the patient know you are aware of the importance of issues to them
• Normalize/legitimize the patient's questions and/or concerns
• Avoid judgmental and/or shaming remarks
• Use conditional phrasing when providing information, ie, "This is unlikely," "This may happen"
• Provide reassurance and/or normalization

This optional video explains how to start a conversation about sexual health with an individual with a spinal cord injury:

Effects of the SCI on Sexual Function and Reproductive Health

"Patients must be informed that sexual health care is part of their rehabilitation program and that sexual health services will be offered periodically throughout their rehabilitation and can also be requested."

Three spinal segments are of particular importance for sexual function: the T11-L2 sympathetic, the S2–S4 parasympathetic, and the somatic centres

Direct Effects

The direct effects of SCI on sexual response in men and women are different and include the following:

Sexual and Reproductive Responses in Men With a SCI

"Spinal cord injury frequently occurs in men during the years of their reproductive health peak when they may desire to start a family and have children."

• Altered / loss of sensation
• Altered ability to ejaculate
  • Individuals with incomplete conus or cauda equina lesions and with lesions higher than T6 will experience natural ejaculation.

• Altered orgasmic sexual satisfaction
  • People with SCI with a preserved light touch and pinprick sensation in the T11-L2 dermatomes may be able to achieve psychogenic arousal.
  • Individuals with a long history of SCI develop non-genitalia erogenous zones, including lips, neck, shoulders, and ears.
  • People with SCI can develop new sexual arousal areas at and above their level of lesion, including the head or neck, torso, arms, and shoulders.

• Risk of autonomic dysreflexia on ejaculation (above T6)
• Fertility challenges and reduced sperm quality
  • Complications affecting male fertility after an SCI:
    • Priapism: It is an erection that lasts longer than 3 hours. This might happen when using certain therapies for erectile dysfunction. This might permanently damage the blood vessels in the penis.
    • Risk of penile trauma: Men with SCI are at a higher risk for penile bending (Peyronie’s disease) because of a lack of sensation or no sensation in the penis.
• Low levels of testosterone
  • Testosterone is the main hormone in men for sexual function and libido
  • Testosterone deficiency (hypogonadism) occurs when a morning total testosterone level is less than 300 ng/dl
  • Men with a SCI can be at risk for abnormally low levels of testosterone
  • Routine screening for low testosterone is recommended
  • Testosterone replacement therapy should be considered
  • "Testosterone therapy in combination with an exercise program appears to increase muscle size and strength in men with both complete and incomplete SCI"
• Erectile dysfunction
  • Patients with T12 and above SCI may get a reflex erection with stimulation
  • Patients with T12 and below SCI may get a psychogenic erection
  • Phosphodiesterase type 5 inhibitors (PDE5i) taken orally in the form of a tablet are recommended as the first choice for the treatment of erectile dysfunction in SCI, with a 70 - 80% success rate.

Sexual and Reproductive Responses in Women With a SCI

"Attending to the sexual health and sexual function of women living with SCI supports whole-person care for these women, which will improve clinical outcomes and decrease health care costs."

• Interruption to menstrual cycle (restarts within 3-6 months)
  • Either tampons or menstrual pads can be used: Tampons generally do not cause skin irritation, and they can generally provide better protection from leakage during transfers.
  • Over-the-counter douche products are not recommended.
  • Vaginal hygiene sprays are also not recommended.
• Blocked pathways for arousal
  • Using a vibrator can be helpful for achieving an orgasm
• Altered / loss of sensation
• Altered vaginal lubrication
  • Lubrication can be added using a water-based, non-petroleum lubricant, like KY Jelly.
• No changes to fertility
• Normal pregnancy. Birth control options include:
  • Condoms
  • Birth Control Pills: It is important to know that birth control pills have been linked to a higher risk of developing blood clots in the non-SCI population. Individuals with new onset SCI have a high risk of developing blood clots. This risk decreases after 3 months of being injured. It is not often recommended that combination birth control is used within the first 3 months of injury, but after this time, this may be an option for you.
  • Birth Control Patch
  • Nuva Ring IUDs: Intrauterine Devices (IUDs) are implanted plastic or copper T-shaped devices inserted into the uterus. Because you may not be able to detect pain as readily as before SCI, it may be harder for you to know if the device has become dislodged or if there is pelvic pain suggestive of infection.
  • Implanted Hormonal Devices
  • Depo-Provera injection: Injected hormonal birth control option that is given every 12 weeks and is usually injected at your healthcare provider’s office. Women who use Depo-Provera can experience a loss of bone mineral density that can lead to osteoporosis (which is already prevalent in spinal cord injury).
• Vaginal delivery
• Risk of autonomic dysreflexia during labour
• Gynaecological complications:
  • Lack of attention to reproductive and gynaecological health-care services for women with SCI.
  • Routine gynaecological procedures and screenings are important.
  • Physical barriers, such as inaccessible offices and a lack of information about gynaecological issues post-injury, may delay screening and subsequent diagnosis of certain types of gynaecological cancers and sexually transmitted diseases
  • Regular sexual health care, including annual pelvic exams, screening and testing for breast cancer, and menopausal education and care, must be a part of the comprehensive health care provided to women with SCI

Indirect Effects

Indirect effects of the SCI include the following:

• sensory/motor alterations
  • Inspect insensate skin surfaces, particularly around the genitalia and buttocks, immediately after sexual activity, as these areas may have received excessive friction, pressure, or tears.
  • Avoid any forceful pressure when positioning your body for sexual activity. It is worth a little extra effort and experimentation to figure out the best placement of your body and the best ways.
• bladder and bowel changes
• spasticity
• fatigue
• psychological difficulties
• pain
• autonomic dysreflexia
• changes in sexual view of self

Iatrogenic effects

Iatrogenic effects of treatment may have a significant influence on sexual health after spinal cord injury. Awareness of the available surgical treatment options and side effects of medicine leads to a better choice of intervention when addressing sexual health and, consequently, leads to a better quality of life in individuals with a spinal cord injury.

The following are examples of iatrogenic effects of treatment on sexual health in spinal cord injury:

• Intracavernosal injections (ICI) as an alternative to PDE5-Is failure can cause penile bruising, swelling and penile plaque formation at the injection site.
• Vacuum Erection Devices (VEDs) can cause ischemic injury and subcutaneous haemorrhage due to over-vigorous VED suction.
• Baclofen for spasticity treatment can make it more difficult to have an erection.
• Antidepressant medications may reduce sexual desire.

Contextual influences

Spinal cord injury can cause changes to relationships, one’s roles and responsibilities, and the everyday challenges that arise when living with SCI. These changes can have an impact on an individual's sexual health.

• Javier et al indicated that the quality of life improvement of individuals with SCI depends on improving sexual functioning
• Barrett and colleagues implied that "sexual function and satisfaction are highly challenging areas for partners post-spinal cord injury."

Roles of Rehabilitation Professionals in Preserving Sexual Health for People with a SCI

"It is recommended that all persons working with people with SCIs understand the effects of SCI on sexual function."

Occupational therapists are in an excellent position to normalise sexual health as part of rehabilitation and assist in specifics for sexual activity, such as adaptive sexual devices, environmental controls, and adapted clothing.

Physiotherapists are often the first clinicians that clients see in the community, and they can be very effective in opening the conversation, normalising sexual health rehabilitation as part of overall rehabilitation, and connecting individuals to necessary supports.

Psychologists and counsellors are trained to address depression, anxiety, loss and grief, role changes, and relationship discord as common post-SCI with a significant effect on sexual health.

Social Workers can work with the client or group to seek out individual resources as well as sources of support and resources in the community to support clients in attaining their goals for their sexual health/relationships.

Recreational therapists could teach clients new or adaptive ways of expressing themselves through sports, art, exercise, and dance. This could affect a person’s sense of his or her sexual self in the world and how he or she is seen as a sexual person by others.

Vocational Rehabilitation Therapists support a person's return to previous employment, training for a new occupation, or assuming a volunteer role. This is important for re-establishing a sense of purpose, accomplishment, and wholeness in a person’s life, as loss of employment following an injury can be devastating to a person’s self-esteem, including sexual self-esteem.

Assessment of Sexual Health in People with a SCI

The assessment of sexual health and satisfaction after SCI must be comprehensive and include neurological components of sexual health dysfunction. The following are the gold standards resources and assessments of sexual health after spinal cord injury:

1. The International Standards of Neurological Classification of Spinal Cord Injury (ISNCSCI)
   • It is a comprehensive assessment of motor function and sensation.
   • The ISNCSCI 7 is important not only to determine the level of injury and completeness but also to provide an estimation of sexual functioning based on these findings.
2. The International Standards to Document of Remaining Autonomic Function after SCI (ISAFSCI)
   • Designed to describe the diagnosis (supraconal, conal or cauda equina) of the spinal cord lesion and to document the impact of the injury on the components of the autonomic response, including sexual.
   • The patient’s ability to experience arousal, orgasm, ejaculation (male) or sensation of menses (female) is rated on a scale of 0 (no function), 1 (impaired function) or 2 (normal).
   • If a patient is not experiencing these sexual functions (based on the level and completeness of his/her injury,) the clinician should investigate factors which may be interfering, e.g., medication or spasticity.
3. The International SCI Data Sets on Male Sexual Function and Female Sexual and Reproductive Function
   • These data sets are agreed upon as measures/indicators that both clinicians and researchers need regarding SCI and sexual health.
   • They establish a standard of data collection/clinical intake that is valid anywhere in the world. See the International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set and International SCI Male Sexual Function Basic Data Set for details.

Sexual History

When assessing the patient, consider the following:

• Obtain information on previous sexual trauma, sexual dysfunction, or sexually transmitted disease that could affect their sexual function following the SCI (Past psychological, medical and sexual history)
• Consider the individual’s life context (cultural, environmental, spiritual and social)
• Ensure that a medical assessment of the sexual reproductive system is conducted after SCI. The assessment should include a thorough examination of breasts and genitalia, as well as screenings for cervical, ovarian, uterine, breast, prostatic, and testicular cancers. Screening for sexually transmitted diseases, including HIV/AIDS, should be provided as deemed appropriate through consultation with the individual. Provide counselling about HPV immunization as appropriate.

• Perform a physical examination using the International Standards to Document Remaining Autonomic Function after Spinal Cord Injury (ISNCSCI), with special attention to the preservation of sensation from T11–L2 and S2–5, along with the determination of the presence of voluntary anal contraction and reflexes to assess sexual function – this is to determine the impact of the injury on sexual response
• Assess the impact of the individual’s injury on sexual responses, i.e., genital responses, based on a neurologic examination, such as the International Standards to Document Remaining Autonomic Function after Spinal Cord Injury
• Perform a detailed neuromusculoskeletal examination and functional assessment. Use the results of the examination to assist in counselling regarding sexual activity.

Patient Sexual Education

• Educate persons with SCI about the effects of medication on sexual response and fertility. Medications include prescription, over-the-counter, or herbal remedies and/or supplements
• Educate the individual about the effects of alcohol, tobacco, and other drugs, as well as unhealthy eating habits and obesity, on sexual response and fertility
• Evaluate the individual with SCI for a diagnosis of depression or other psychological disorders if he or she exhibits such symptoms as loss of libido, poor concentration, fatigue, and/or changes in sleep or appetite.
• Evaluate for a diagnosis of testosterone deficiency in men with SCI presenting with suppressed libido, reduced strength, fatigue, or poor response to phosphodiesterase type 5 inhibitors (PDE5is) for erection enhancement

To achieve a feeling of sexual well-being, people with SCI need to understand how their bodies function after injury. This understanding may be accomplished through a variety of methods, and health-care providers who treat people with SCI have the responsibility to instruct and educate them in accordance with the individual’s needs and wishes. Thus, consider the following:

• Provide information on methods to enhance sensuality by using all available senses.
• Provide information on sexual assistive devices (sex toys) that are sometimes used to enhance sexual experiences. Provide appropriate cautions about contraindications and information regarding skin protection, prolonged penile constriction, and dysreflexia. Inform individuals that sexual enhancement devices may be modified to accommodate limited mobility.
• Encourage individuals to consider expanding their sexual repertoire to enhance their sexual pleasure following injury. Discuss the broad range of options for sexual expression and pleasure for individuals with SCI.

Physical and practical considerations:

• Encourage individuals to consider bladder and bowel care prior to sexual activity and to explore contingency plans, as necessary, if incontinence should occur.
• Inform individuals that existing pressure ulcers do not necessarily preclude engagement in sexual activity and discuss ways to avoid injuring skin or exacerbating existing pressure ulcers.
• Instruct individuals to inspect insensate skin surfaces, particularly around the genitalia and buttocks, immediately after sexual activity, as these areas may have received excessive friction, pressure, or tears.
• Educate individuals with SCI about optimal positioning during sexual activity in order to protect limbs from damage.
• Inform individuals with SCI that it is common for their level of spasticity to change as a result of sexual activity
• Educate individuals about the relationship between sexual activity and the possible onset of autonomic dysreflexia (AD), with or without symptoms, especially in people with injuries at or above T6. Instruct individuals with SCI to modify sexual activity if they experience AD.
• Ensure that individuals with SCI understand that they remain at risk for acquiring or transmitting sexually transmitted infections (STIs), also commonly known as STDs (or sexually transmitted diseases).
• Educate individuals about obtaining assistance from caregivers in their preparation for sexual activity.
• Ascertain the necessary spine precautions specific to the individual and translate that information into safe levels of sexual activity. After spinal cord injury, intimacy and affection are encouraged; however, individuals need to be cognizant of the potential risk of further injury.
• Suggest environmental modifications that enhance the quality of the sexual experience.
• Teach the person with SCI optimal positioning and bed mobility in accordance with his or her injury
• Educate individuals with SCI and their partners about safety measures to consider when engaging in sexual activity while in a wheelchair. Encourage individuals to learn about the safety limits of their particular chair.
• Discuss safety issues related to the use of shower and shower equipment for sexual activity (e.g., burns induced by hot water, risks of slipping or falling, and weight limits that may apply to shower chairs). Inform the individual that high-weight-capacity shower chairs are available.
• Discuss the adaptive equipment required by ageing individuals with SCI and people with ageing partners.

Resources

• Sexual and Reproductive Health Following Spinal Cord Injury
• Mental Health & Physical Intimacy Following a Spinal Cord Injury Podcast