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 healthcare 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 and patient mirror each other'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 decilitre] 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 easily as they could before SCI, so it may be harder for them to know if the device has become dislodged or if they have pelvic pain (which could indicate an infection).
  • implanted hormonal devices
  • depo-provera injection: an injected hormonal birth control option that is given every 12 weeks. Depo-provera can caused a decrease in bone mineral density, potentially resulting in osteoporosis (osteoporosis 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. There is, however, no single measurement tool that can be used to assess all aspects of sexual health and satisfaction after SCI. The following are gold standard resources and assessments that can be used to assess sexual health after spinal cord injury.

1. International Standards of Neurological Classification of Spinal Cord Injury (ISNCSCI):
   • comprehensive motor function and sensation assessment
   • helps to determine the level and completeness of an injury and, using these findings, can estimate sexual functioning
2. International Standards to document remaining Autonomic Function after Spinal Cord Injury (ISAFSCI):
   • helps describe the specific spinal cord lesion and records the impact of the injury on autonomic responses, including the sexual response
   • an individual is rated on a scale from 0-2 (0 = no function, 1 = impaired function, 2 = normal function) on their experience of the following: arousal, orgasm, ejaculation (in men) or sensation of menses (in women)
   • if an individual with SCI does not have the expected sexual function for their level and completeness of injury, any factors which may be interfering with function should be investigated, such as medication, spasticity, etc.
3. International SCI Data Sets on Male Sexual Function and Female Sexual and Reproductive Function
   • these data sets are agreed upon SCI and sexual health measures and indicators
   • they are relevant for clinicians and researchers and they are designed to establish a standard of data collection / clinical intake that is valid everywhere
   • please see the International Spinal Cord Injury Female Sexual and Reproductive Function Basic Data Set and International SCI Male Sexual Function Basic Data Set for more detail

Sexual History and Physical Assessment

The sexual history and physical assessment should include 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 each individual’s life context, including cultural, environmental, spiritual and social factors
• assessment of the sexual reproductive system, including: 1) examination of breasts and genitalia; 2) screening for cervical, ovarian, uterine, breast, prostate, and testicular cancers; 3) screening for sexually transmitted infections, including HIV/AIDS where necessary and after consulting with the individual; and 4) counselling on the HPV immunisation when relevant

• physical examination using the International Standards to Document Remaining Autonomic Function after Spinal Cord Injury (ISNCSCI), checking for: 1) preservation of sensation from T11-L2 and S2-5; 2) presence of voluntary anal contraction and reflexes
• determine the impact of the SCI on an individual's sexual responses, such as genital responses
• neuromusculoskeletal examination and functional assessment
• the results of the sexual history and these assessments can be used to develop a sexual education and treatment plan

Only appropriately trained healthcare professionals can undertake some of these steps. You must consider your scope of practice before performing any assessment.

Patient Sexual Education

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

• you must maintain professional boundaries at all times
• consider an individual's age when they had their SCI and previous sexual experience
• discuss the effects of medication, including prescriptions, over-the-counter drugs and herbal remedies / supplements, on sexual response and fertility
• discuss the effects of alcohol, tobacco, other drugs, diet, obesity on on sexual response and fertility

Changes in Sexual Function and Other Signs

It is important to note that a loss of libido, poor concentration, fatigue, changes in sleep or appetite can be associated with depression or other psychological conditions in individuals with SCI. In males with SCI, suppressed libido, reduced strength, fatigue, or an inadequate response to phosphodiesterase type 5 inhibitors (PDE5is) for erection enhancement can also indicate testosterone deficiency.

Achieving Sexual Well-Being

To achieve a feeling of sexual well-being, people with SCI need to understand how their bodies function after injury. Healthcare professionals must provide information and education in accordance with the individual’s needs and wishes. Information on the following points can help individuals with SCI achieve sexual well-being:

• methods to enhance sensuality, using all the available senses
• sexual assistive devices (sex toys) can be used to improve sexual experience
  • these devices can be adapted for individuals with reduced mobility
  • it is important to discuss cautions / contraindications and information on skin protection, prolonged penile constriction and dysreflexia
• individuals with SCI can explore different methods to enhance their sexual pleasure; there are a range of options for sexual expression and pleasure that healthcare professional can discuss with individuals with SCI

Practical Considerations

There are a number of physical and practical considerations for individuals with SCI to consider. Healthcare professionals should provide education on the following topics:

• carrying out bladder and bowel care before sexual activity should be encouraged and individuals with SCI should have a plan if incontinence occurs during sexual activity
• having a pressure ulcer does not prevent an individual with SCI from engaging in sexual activities, but they should be aware of strategies to reduce the risk of skin injury / avoid exacerbating a pressure ulcer
• individuals with SCI should check areas of skin that lack sensation, including around the genitalia and buttocks, immediately after sexual activity in case of excessive pressure, tears or friction
• individuals with SCI should understand optimal positioning during sexual activity to avoid injury to the arms or legs
• sexual activity can change the level of spasticity
• sexual activity can cause autonomic dysreflexia (with or without symptoms)
  • this is particularly common in individuals with injuries at T6 or above
  • individuals with SCI must be aware they need to modify sexual activity if they experience autonomic dysreflexia
• importance of practising safer sex to reduce the risk of acquiring or transmitting sexually transmitted infections
• individuals with SCI might need assistance from caregivers to prepare for sexual activity and they should be empowered to ask / receive this assistance
• specific spine precautions that need to be considered
• environmental modifications
• optimal positioning and bed mobility tailored to the individual's injury
• safety considerations for sexual activity while in a wheelchair - each individual must understand the safety limits of their wheelchair
• safety considerations for sexual activity in the shower / while using shower equipment:
  • care with the temperature of the water to avoid burns
  • risk of falling / slipping in the shower
  • weight limits for shower chairs and if there is an option for a high-weight-capacity shower chair

It is important to note that an individual's need for adaptive equipment might change as they and their partners get older.

Resources

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