Sexual Function and Reproductive Health after Spinal Cord Injury

Original Editor - Wendy Oelofse

Top Contributors - Ewa Jaraczewska, Jess Bell and Kim Jackson  

Introduction

Sexual function and reproductive health can significantly impact quality of life in people with a spinal cord injury (SCI). An individual's sexual and reproductive function post-SCI depends on the level and completeness of the injury. SCI can have a number of direct and indirect effects on sexual functioning, including 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 an SCI starts talking about their sexual function as early as possible in the rehabilitation process. This might be in the form of 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 Spinal Cord Injury

The following steps have been proposed to help educate, evaluate, and treat sexual concerns after SCI:

• communicate with the patient
• ask about any sexual and medical issues that were present pre-injury
• refer on where appropriate
• consider if there are any partner, cultural, and psychological issues
• complete physical and neurological exams, paying close attention to T11-L2 and S2-5
• provide education to the patient
• suggest practice
• follow up by reviewing the basics
• if problems are ongoing, treat any confounding or iatrogenic issues
• follow up with the patient again
• treat the basics (e.g. provide medications to improve desire or arousal)
• follow up with further communication
• use more advanced techniques where necessary (e.g. make a referral for invasive techniques or further counselling)

Communication About Sexual Health After Spinal Cord Injury

Clinicians must be comfortable and have sufficient knowledge to communicate with individuals about sexual health after SCI. They must demonstrate respect during these interactions. Strategies to create respect include:

• 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 adopt neutral body language
• use postural echo (i.e. the clinician mirrors the patient's sitting position)
• make eye contact with the patient where appropriate
• use written scales or questionnaires
• ask open-ended questions
• provide time for the client to tell their story without interrupting them
• acknowledge any concerns the patient has
• use reflective listening to show your patient that you understand these issues are important to them
• normalise the patient's questions and concerns and show that they are legitimate
• do not make judgmental and/or shaming comments
• make sure you use conditional phrasing when providing information (e.g. "this is unlikely" or "this may happen")
• provide reassurance / normalisation

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

Effects of Spinal Cord Injury 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 of Spinal Cord Injury on Sexual Function and Reproductive Health

The direct effects of SCI on sexual response in men and women are different and are discussed in the following sections.

Sexual and Reproductive Responses in Men with a Spinal Cord Injury

"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."

A male with SCI may experience the following:

• altered / loss of sensation
• altered ability to ejaculate
  • natural ejaculation is more likely to occur in individuals with incomplete conus or cauda equina lesions and with lesions higher than T6
    • please note that the conus medullaris is the terminal end of the spinal cord, which is usually located around L1 in adults; conus medullaris syndrome (CMS) occurs when an individual sustains compressive damage to the spinal cord, typically between T12 and L2

• altered orgasm / sexual satisfaction
  • individuals with SCI who have preserved light touch and pinprick sensation in the T11-L2 dermatomes may be able to achieve psychogenic arousal
  • individuals with SCI can develop non-genitalia erogenous zones or 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 (in individuals with an SCI above T6)
• fertility challenges and reduced sperm quality
• priapism: erection lasts longer than 3 hours; this might occur in individuals who are using certain therapies for erectile dysfunction, and it can permanently damage the blood vessels in the penis
• risk of penile trauma: males 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 (often called low testosterone or hypogonadism) "is defined as having a morning total testosterone level of less than 300 ng/dl [nanograms per deciliter] in the setting of signs, symptoms, or conditions associated with testosterone deficiency"
  • males with 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
  • individuals with an SCI at or above T12 may get a reflex erection with stimulation
  • individuals with an SCI at or below T12 may have a psychogenic erection
  • phosphodiesterase type 5 inhibitors (PDE5i) taken orally in tablet form are recommended as the first choice treatment for erectile dysfunction in SCI, with a 70 - 80% success rate

Sexual and Reproductive Responses in Women with a Spinal Cord Injury

"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."

The following can occur in females after SCI:

• interruption to the menstrual cycle (usually restarts within 3-6 months)
  • either tampons or menstrual pads can be used: tampons generally do not cause skin irritation, and they can usually 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
  • can use a water-based, non-petroleum lubricant, like KY Jelly for lubrication
• no changes to fertility and a normal pregnancy is possible
• 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 a new SCI have a heightened risk of developing blood clots. This risk decreases at around 3 months post-injury. Therefore, combination birth control is often not recommended within the first 3 months of injury, but after this time, it may be an option.
  • birth control patch
  • NuvaRing: a flexible vaginal ring
  • intrauterine device (IUD): an implanted plastic or copper T-shaped device that is inserted into the uterus. It's important to note that individuals with an SCI may not be able to detect pain as readily as they could before SCI, so it may be harder for them to know if the device has become dislodged or if there is pelvic pain that is suggestive of infection.
  • implanted hormonal devices
  • depo-provera injection: an injected hormonal birth control option that is given every 12 weeks. 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 is possible, but there is a risk of autonomic dysreflexia during labour
• women with SCI can experience general and specific gynaecological complications:
  • some women may not experience symptoms or have insufficient information to prompt them to seek care
    • there is also a general lack of attention to reproductive and gynaecological healthcare for females with SCI, so these women might not receive preventative healthcare services
  • routine gynaecological procedures and screening 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 infections
  • regular sexual healthcare, including annual pelvic exams, screening and testing for breast cancer, and menopausal education and care, must be a part of the comprehensive healthcare provided to women with SCI

Indirect Effects of Spinal Cord Injury on Sexual Function and Reproductive Health

Indirect effects of the SCI include the following:

• sensory/motor alterations
  • it is important for individuals with SCI to avoid any forceful pressure when positioning their body for sexual activity; it is worth spending a little extra effort and experimentation to figure out the best placement of their body
• bladder and bowel changes
• spasticity
• fatigue
• psychological difficulties
• pain
• autonomic dysreflexia
• changes in sexual view of self

Iatrogenic Effects of Spinal Cord Injury on Sexual Function and Reproductive Health

Iatrogenic effects of treatment may have a significant impact on sexual health after spinal cord injury. Being informed about surgical treatment options and the side effects of medications can positively influence decision-making for sexual health issues, ultimately leading to a better quality of life for individuals with spinal cord injuries.

Examples of iatrogenic effects of treatment on sexual health in individuals with 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 ischaemic injury and subcutaneous haemorrhage due to over-vigorous VED suction
• baclofen for spasticity treatment can make it more difficult for males with SCI to have an erection
• antidepressant medications may reduce sexual desire

Contextual Influences of Spinal Cord Injury on Sexual Function and Reproductive Health

SCI can cause changes to relationships and an individual's roles and responsibilities. There are also various everyday challenges associated with living with SCI. These changes can have an impact on an individual's sexual health.

• Javier et al. found that quality of life improvement in individuals with SCI is associated with improving sexual function
• Barrett et al. note that "sexual function and satisfaction are highly challenging areas for partners post-spinal cord injury"

Roles of Rehabilitation Professionals in Preserving Sexual Health for Individuals with Spinal Cord Injuries

"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 healthcare professional that clients see in the community, and they can effectively start the conversation on sexual health, 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. These are common post-SCI issues that can have a significant impact on sexual health.

Social workers can work with a client or group to seek out individual resources and sources of support in the community that can help clients achieve their sexual health and relationship goals.

Recreational therapists can teach clients new or adaptive ways of expressing themselves through sports, art, exercise, and dance. This could affect a person’s sense of their sexual self in the world and how they are 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 Spinal Cord Injuries

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

1. International Standards of Neurological Classification of Spinal Cord Injury (ISNCSCI):
   • a comprehensive assessment of motor function and sensation
   • the ISNCSCI 7 is important for determining the level and completeness of injury and for providing an estimate of sexual functioning based on these findings
2. 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 the sexual response
   • an individual'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 an individual with SCI is not experiencing expected sexual function (based on the level and completeness of their injury), the clinician should investigate any factors which may be interfering (e.g., medication, spasticity, etc.)
3. 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 a patient, it is important to do the following:

• ask the person with SCI whether they have an interest in discussing sexual concerns and then proceed accordingly
• ensure that the individual is comfortable with the physical surroundings and the level of privacy in the room
• ask questions that are direct and open-ended to facilitate discussion

• obtain information on previous sexual trauma, sexual dysfunction, or sexually transmitted infections that could affect sexual function following 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. This assessment should include a thorough examination of breasts and genitalia, as well as screening for cervical, ovarian, uterine, breast, prostatic, and testicular cancers. Screening for sexually transmitted infections, including HIV/AIDS, should be provided where necessary through consultation with the individual. Provide counselling about HPV immunisation 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 determines 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, and use the results of the examination to assist in counselling regarding sexual activity

The above steps are general. You must consider your scope of practice before performing these assessments.

Patient Sexual Education

When providing sexual education for individuals with SCI, please consider the following points and topics:

• it is important to educate individuals with SCI about the effects of medication on sexual response and fertility; medications include prescription, over-the-counter, or herbal remedies and/or supplements
• provide education on the effects of alcohol, tobacco, and other drugs, as well as unhealthy eating habits and obesity, on sexual response and fertility
• evaluate individuals with SCI for a diagnosis of depression or other psychological disorders if they exhibit symptoms, such as loss of libido, poor concentration, fatigue, and/or changes in sleep or appetite
• evaluate for a diagnosis of testosterone deficiency in males 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 healthcare 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 the 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 sexually transmitted diseases (STDs).
• 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, but individuals need to be cognisant 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 their 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 - it is beneficial to provide information about high-weight-capacity shower chairs)
• 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 and Physical Intimacy Following a Spinal Cord Injury Podcast