Sexuality and Reproduction after SCI

Disease/Disorder

Definition

The World Health Organization defines sexuality as “a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviors, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors.”¹

Etiology

Insult to the spinal cord or cauda equina can result in injury to the motor, sensory, and autonomic pathways underlying sexual and reproductive function. The effect of a spinal cord injury (SCI) on sexual function and health depends on the direct effects from an SCI itself, as well as indirect effects from chronic sequelae of SCI, iatrogenic effects from medications, and social or cultural experience living with a disability. Additionally, personal attributes such as partnership status, pre-morbid sexual experiences and attitudes, and openness to sexual experimentation influence the experience.² Impairments after SCI may include impairments in libido, erection and genital arousal/lubrication, ejaculation, orgasm, and fertility.

Patho-anatomy/physiology

The level and completeness of SCI are major determinants of sexual functioning due to its influence on the autonomic nervous system. The autonomic nervous system provides significant innervation to the genital organs and is essential for sexual function. Simplistically stated, parasympathetic activity is thought to be responsible for achieving sexual arousal, causing genital vasocongestion, erection, and lubrication, while ejaculation in males is thought to be mediated by the sympathetic nervous system. The interaction of these two systems is quite complex and poorly understood.³ To understand the impact of SCI on sexual function, pertinent anatomy is reviewed below.⁴

• The sympathetic preganglionic neurons originate from the thoracolumbar segments T11 to L2 in the spinal cord and become the Hypogastric Nerve. Sympathetic stimulation causes smooth muscle contraction associated with ejaculation and the orgasm response. In men, sympathetic activation is necessary for emission of semen and bladder neck (internal sphincter) closure, which prevents retrograde ejaculation. The sympathetic nervous system also provides tonic smooth muscle and vascular vasoconstriction responsible for flaccidity and lack of arousal at baseline.⁴
• Parasympathetic nerve fibers originate from the S2-S4 sacral spinal segments and provide innervation, via the Pelvic Nerve, to genital erectile tissue. The parasympathetic nerves release pro-erectile neurotransmitters, the most important of which is nitric oxide (NO). NO leads to vasodilation resulting in genital (penile and clitoral) vasocongestion (erections) and vaginal lubrication.⁴
• Somatic fibers carry sensation from the genitalia of both sexes via the Pudendal Nerve (S2-S4). Afferent sensory impulses travel from the genital end organs to the somatic sensory cortex. The efferent output causes rhythmic contractions of the bulbocavernosus and ischiocavernosus muscles, which propel the ejaculate along the urethra in males and mediates pelvic floor contractions in both males and females during orgasm. At the spinal cord level, the sensory afferents synapse with, and increase activity of, parasympathetic nerves, causing reflexive penile and clitoral vasocongestion. Normally this reflex is modulated by tonic inhibitory supraspinal influences.⁴

Types of Arousal (Erection in Men and Vasocongestion/Vaginal Lubrication in Women):

• Genital arousal can be triggered by multiple different pathways but relies on the predominance of parasympathetic activity over baseline, tonic sympathetic tone.
• Reflexogenic arousal, triggered by tactile stimulation of the genitals, depends on the presence of an intact sacral reflex arc. Afferent stimuli are transmitted to the spinal cord, which activates the sacral spinal erection center at S2-4 to produce an arousal response.⁴
• Psychogenic arousal refers to genital vasocongestion and erection, as well as vaginal lubrication, that occurs with sexual thoughts or fantasy and relies on preservation of impulses transmitted down the spinal cord and through the spinal erection center at T11-L2. This occurs independently from genital stimulation. Psychogenic arousal is thought to be responsible for maintaining erection during sexual intercourse.⁴
• Nocturnal erections occur during REM sleep and have not been well studied in SCI.⁴

Disease progression including natural history, disease phases or stages, disease trajectory (clinical features and presentation over time)

Immediately after an SCI, all reflexes are lost, including sexual reflexes (reflex erections and lubrication). As spinal shock resolves, these reflexes return and can be utilized to augment sexual activity.

Once reflexes return, reflexive arousal in men and women can be achieved with genital stimulation if the SCI is above the sacral segments S2-4 with preservation of the sacral spinal segments and cauda equina, consistent with an upper motor neuron (UMN) injury. 93% of persons with complete UMN injuries regain reflexogenic erections.⁵

Psychogenic arousal evoked by erotic thoughts and stimuli can occur with lesions below the thoracolumbar (T10-L2) spinal segments and is often lost with injuries to the thoracic and cervical spinal cord.

Individuals with complete lower motor neuron (LMN) injuries involving either the conus medullaris or the exiting nerve roots (cauda equina) experience loss of reflexive arousal. Erectile dysfunction in this group of males is generally more difficult to treat.⁶

In summary, three (simplified and general) phenotypes occur:

• Impaired psychogenic, but preserved reflexogenic, arousal after UMN injury above the T11-L2 spinal segments
• Preserved psychogenic and reflexogenic arousal after UMN injury below the T11-L2 segments with sparing of the S2-4 segments
• Impaired/absent reflexogenic and psychogenic arousal after LMN injury affecting the S2-4 cell bodies or nerve roots

In addition to the pathophysiologic changes to the nervous system after SCI, there are several issues related to sexual activity that must be considered. For example, neurogenic bowel and bladder should be addressed prior to intimacy to prevent incontinence, patients should be trained on the risk of autonomic dysreflexia (AD) with sexual activity, padding should be in place and weight shifts should be considered to prevent pressure injury, and lubricants should be used to protect from trauma related to intercourse. Pain, mood disorders, and spasticity may also impact sexual activity and positioning. Additionally, lived experience with disability may alter a sense of self, relationships, and interactions within the community.

Essentials of Assessment

History

• Medical comorbidities (e.g., diabetes mellitus, hypertension, cardiovascular disease, alcohol/drug use, and impairments in vision or hearing)
• Sexually transmitted diseases, sexual traumas, and prior sexual dysfunction
• Mental health problems (mood disorders, anxiety, etc.)
• Medications, especially antispasticity medications, opiates, alpha adrenergic antagonists, nitrates, antidepressants and glucocorticoids.
• History and severity of AD and triggers.⁷
• Pre- and post-SCI sexual experiences, attitudes and orientation, partner(s)
• Adjustment to SCI and body image
• Desire/libido
• Partner adjustment/acceptance
• Urological and bowel management
• Pregnancy and menstrual history
• Contraceptive use

Physical examination

• Vital signs, including hypotension or hypertension, and signs of AD
• General neuromusculoskeletal examination, which should involve components of the International Standards/ASIA exam including a rectal exam (rectal sensation, tone, voluntary contraction), and presence of sacral reflexes (anocutaneous and bulbocavernosus reflexes).⁸
• Detailed sensory examination with specific attention to T11-L2 and S2-5 spinal segments. Preservation of sensation, motor function and reflexes mediated by the T11-L2 and S2-S5 spinal segments correspond to sympathetic and parasympathetic functions, respectively.⁶

Functional assessment

• Level of independence with bed mobility and transfers
• Range of motion and contractures, which may influence positioning options for sexual activity.
• Upper extremity function, including hand function, which can affect sexual expression
• Bowel and bladder management methods

Laboratory studies

• Workup for sexual dysfunction includes infection, hyperprolactinemia if concomitant traumatic brain injury, metabolic syndrome (e.g. lipid panel), diabetes mellitus (e.g. HgbA1c or fasting blood glucose), thyroid dysfunction (e.g. TSH, Free T4), or gender specific hormones.⁹ Testosterone deficiency should be considered in men with SCI who have reduced libido, decline in strength, fatigue or poor response to phosphodiesterase type 5 inhibitors (PDE5-I).
• Workup for sexually transmitted infections (STI’s), when indicated
• Semen analysis for fertility purposes

Supplemental assessment tools

The International Standards for the Assessment of Autonomic Function after SCI (ISAFSCI) were developed to describe remaining autonomic function after SCI.¹⁰ The autonomic standards rate psychogenic and reflex genital arousal (erection or lubrication), orgasm, ejaculation (in men), and sensation of menses (in women) on a 3-point scale: normal function (2), reduced or altered function (1) and complete loss of function (0).

Social role and social support system

• Persons with SCI can resume fulfilling social roles as spouses, partners, and/or parents.
• Individuals with SCI who are in stable, satisfying relationships, are sexually compatible and have good communication with their partner, experience higher sexual satisfaction.¹¹
• Married couples with SCI are reported to be as stable and enjoy equal marital satisfaction as able-bodied couples.¹²
• Distressed couples with SCI tend to express more dissatisfaction with sexual relations and more negative communication during conflict resolution.¹³

Rehabilitation Management and Treatments

Available or current treatment guidelines

Clinical practice guidelines on sexuality and reproductive health were most recently published in 2010.¹⁴

Coordination of care

The interdisciplinary team treats the “whole person.” Many functions overlap between various providers (e.g., obtaining history, education, coaching) and education is provided through the lens of the clinician’s discipline.

Physician

Counsels patient and significant others on consequences of SCI on sexual functioning and reproduction, prescribes medications and devices, and treats ED and infertility, in conjunction with other specialists. Like patients without an SCI, patients should be counseled on safe sexual practices, including obtaining consent, protection against sexually transmitted infections, and risks of pregnancy.

Nurse

Assesses bowel and bladder programs to promote continence with sexual activity, skin integrity, medication, supply, and surface needs.

Physical therapist

Assesses safety of equipment (wheelchair, shower chairs, etc.) with respect to sexual activity. Provides equipment for positioning to reduce pain, accommodating contractures, preventing trauma or skin breakdown, and optimizing function during sexual activity.

Occupational therapist

Remediates activities of daily living (ADLs) relevant to sexual activity (e.g., undressing), treats sex as an ADL, and provides/fabricates adaptive devices for impaired hand function. A manual of devices has been published.¹⁵

Psychologist

Performs individual and/or couples counseling, discusses separation of caregiving from intimacy, may recommend a specialist certified by the American Association of Sexuality Educators, Counselors, and Therapists (AASECT).

Recreation therapist

Facilitates community integration, recreation and relationships to support healthy lifestyles.

Treatments for Sexual Dysfunctions

Erectile Dysfunction (ED) and Genital Hypoarousal

Up to 75% of men with SCI experience ED.¹⁶ Erections may occur but can be poorly maintained or unsatisfactory for intercourse. Treatment options include

• Vacuum erection devices (VEDs) and constriction bands, which can be used alone or in combination with medication. Constriction bands should be left in place no longer than 20 minutes and skin checks after use are essential. Satisfaction rates are generally low.
• Phosphodiesterase inhibitors (sildenafil, vardenafil, tadalafil), which are the first line treatment for ED after SCI. It is important to note that concomitant use of nitrates for AD or alpha blockers for bladder management may result in life-threatening hypotension.
• Alprostadil intraurethral suppositories (MUSE®), which have limited use and are poorly effective for motor complete injuries but may help persons with incomplete SCI and mild ED.¹⁷
• Intracavernosal injections with alprostadil (prostaglandin E1), which can be utilized for men who have inadequate responses to the above. Additional agents such as papaverine and phentolamine can be mixed by compounding pharmacies to create “bi-mix”, “tri-mix” or “quad-mix” injections. Risks of injection therapy include bleeding or priapism. The first injection must be performed in a clinical, monitored setting. Appropriate counseling is necessary. Anticoagulation, bleeding and clotting disorders are contraindications to VED or injection use.
• Surgical penile prosthesis implantation is a last resort when other methods are unsuccessful. Older devices had a high infection or erosion rate, which is much less with newer pump implants.¹⁸ Satisfaction rates are high with current devices.
• Combinations of ED treatments (e.g., PDE5I with injections or pumps) can be prescribed, with appropriate precautions.

For women, few options are available for hypoarousal or sexual dysfunction. Adequate lubrication is important for penetrative sexual activity, especially if there is a decrease in the patient’s arousal response (vasocongestion and lubrication). Viagra has not been shown to be superior to placebo for women with SCI.¹⁹ Flibanserin (Addyi®) is a newer FDA-approved medication for hypoactive sexual desire disorder in women, but it has not been studied in women with SCI and has a side effect of hypotension, which may limit its use.

Fertility in men with SCI

Most men with SCI will need assistance with fertility. While most men with SCI can achieve some degree of erection, the percentage who can successfully ejaculate without intervention is very low. It is common to have “retrograde” ejaculation where the ejaculate is propelled into the bladder, rather than out the urethra (referred to as “anterograde”). Additionally, semen quality in men with SCI is generally poor, characterized by normal sperm concentrations but low sperm motility and viability.²⁰

Assisted reproduction

Men with SCI and their partners seeking parenthood often require referral to fertility specialists.

• Options for sperm collection include
  • Penile vibratory stimulation (PVS) is a technique that applies vibratory stimulation to the shaft of the penis to reflexively trigger erection and ejaculation.²¹ High success rates are seen with optimized vibration parameters, especially in men with lesions above T10 and intact lower spinal reflexes. The presence of bulbocavernosus reflex and hip flexor reflex predict a favorable response to PVS.²² Midodrine²³ or abdominal muscle stimulation²⁴ can improve responsiveness to vibratory ejaculation.
  • Electroejaculation (EEJ), also called rectal probe electrostimulation (RPE), is a more invasive technique used for sperm retrieval. EEJ utilizes an electrical probe inserted into the rectum, positioned to contact the anterior rectal wall adjacent to the prostate gland and seminal vesicles. The stimulation causes release of semen, via anterograde and retrograde ejaculation (retrieved with the help of a catheter into the bladder). EEJ should be conducted in a clinical setting, as it is associated with a high risk for AD and could cause rectal tissue damage. Unlike PVS, which relies on intact reflexes for ejaculation, EEJ can be performed in persons with areflexia. EEJ is successful in 95% of men with SCI and in nearly 100% if general anesthesia is used.²⁵ Semen quality of spinal cord injured men is better when obtained by PVS, compared to EEJ.
  • Surgical sperm extraction methods (micro epididymal sperm aspiration (MESE), testicular excisional sperm extraction (TESE)) should be reserved for those for whom all other methods are ineffective.
• Options for egg fertilization
  • Intravaginal Insemination can be used for men who have adequate anterograde ejaculate ejaculation with PVS. The procedure can be performed at home using a fertility monitor, specimen cup and a needleless syringe to deposit sperm into the vagina. Success rates are lowest with this technique, but there is little cost.
  • Intrauterine insemination (IUI) involves insertion of collected sperm into the uterus around the time of ovulation. This is less expensive than in vitro fertilization (IVF).
  • In-vitro fertilization (IVF) is when an egg is fertilized in a laboratory setting and then the fertilized egg is implanted into the uterus. It is expensive and still requires that sperm have adequate motility and ability to penetrate the ovum.
  • Intracytoplasmic sperm injection (ICSI) is a special type of IVF. It is the most expensive technique but overcomes sperm motility issues by artificially injecting a single spermatozoon into a single ovum. This is often performed individually to several ova following superovulation of the female partner and collection of ova via surgical aspiration.

When comparing couples with SCI to those with other causes of male infertility, IVF/ICSI of sperm from men with SCI yielded lower fertilization rates (56% vs. 71.4%), but similar pregnancy and live birth outcomes (58.1% vs. 57.9%). Sperm collected by PVS vs. EEJ in men with SCI appear to result in similar IVF/ICSI success rates.²⁶

Fertility and contraception in women with SCI

• Most women retain normal fertility rates after SCI.
• Regarding menstrual periods, most women experience amenorrhea acutely after SCI but have return of their menses after 1 year.^27,28 Girls with prepubertal onset of SCI usually have normal onset of menarche. Menstrual cycles may lead to changes in bowel or bladder function throughout the course of the month and menstrual cramps can be a trigger for AD.
• Given normal fertility rates, contraception must be discussed with female patients with SCI. A nuanced discussion should occur to weigh risks and benefits of different options. Contraception options include²⁹
  • Barrier methods (condoms, diaphragms, spermicide, vaginal gel), which are associated with less efficacy for pregnancy prevention and often require good hand dexterity for placement.
  • Fertility awareness (basal temperature tracking), which may be less accurate for women with SCI with altered temperature.
  • Progestin-only (depot-medroxyprogesterone acetate (DMPA) injections, progestin-only pills) which may be associated with weight gain and osteoporosis (DMPA), but do not have the same increased risk for thrombotic events as estrogen-containing hormonal options.
  • Combined estrogen and progestin (pills, patch, ring), which are all relatively easy to use but do carry an increased risk of thromboembolism.
  • Long-acting reversible contraception (copper intrauterine device, progestin-based IUD, progestin-based arm implant), which are highly effective at preventing pregnancy, placement (especially IUDs) may trigger AD, expulsion may go undetected if sensation is impaired.
  • Permanent contraception (vasectomy, tubal ligation)

Pregnancy and lactation

• Many women with SCI have given birth successfully. Women with SCI should NOT be counseled against having children merely due to SCI.
• Transfers and wheelchair mobility are usually affected due to changes in maternal weight and center of gravity. Some manual wheelchair users may need a power wheelchair temporarily. Pregnant patients may warrant an in-depth assessment of ability to perform ADLs and/or transfers as well as a seating assessment. In addition, positioning and independence with bowel or bladder cares may change as the pregnancy progresses.
• Pregnancy in women with SCI is associated with increased risk of urinary tract infection, thromboembolic events, constipation, reflux, and worsening respiratory function.
• Women with injuries above T10 may not recognize onset of labor and may have an increased risk of premature cervical dilation.
• AD should be differentiated from pregnancy-related hypertension, such as pre-eclampsia. Rehabilitation providers have an important role in educating patients and Obstetrics personnel about the risk of AD. AD should be suspected when hypertension and other AD signs or symptoms are occurring during contractions and resolving when contractions cease. Hypertension from pre-eclampsia will typically persist throughout labor. Such pregnancies should be considered high-risk.³⁰ Use of epidural anesthesia is recommended to reduce the risk of AD.
• Vaginal delivery is often possible, but Caesarean delivery may be needed if AD, premature dilation or other issues are present.
• Women with SCI can breastfeed. Women with injuries above T4 (T3 or higher) may have impairment in the milk let-down reflex, and it can be a trigger for AD.³¹

Parenting

• Studies demonstrate that children of people with SCI have equal adjustment.
• Parents with SCI note that the challenges of parenting can be magnified by having a disability, particularly concerning mobility, strength and accessibility. They may also experience increased social stigma and assumptions of incapability.³²

Orgasm and pleasure

• The neurophysiology of orgasms remains poorly understood.
• Absence of erections or ejaculation does not preclude the ability to experience orgasms.
• Approximately half of men and women with SCI can experience orgasms, though the quality of their orgasm may be different. Persons with complete lower motor neuron injury (no bulbocavernosus or anal wink reflex, no sensation in S3-S5) are less likely to experience orgasm.
• Genital stimulation takes longer to result in orgasm than in able-bodied persons and may be experienced differently. Stimulatory devices, such as vibrators, can be helpful in achieving sexual pleasure and orgasm, though duration of stimulation may be longer than prior to a SCI. People with no genital sensation may achieve orgasms through fantasy or non-genital exploration.³³ For example, some individuals with SCI report pleasurable phenomena in erogenous zones, zones of partial preservation, and other area at or above their injury level.
• Some women with complete SCI C4-T9 report orgasm, awareness of cervical, vaginal stimulation, possibly through a vagus nerve pathway.³⁴
• Stimulatory devices can be very helpful in achieving sexual pleasure and orgasm, such as vibrators and other sexual toys.
• Sex and sexual expression entails encompasses multiple activities beyond intercourse.

Patient & family education

Institutions providing rehabilitation services should incorporate education regarding sexuality after SCI into their rehabilitation curriculum, considering the individual’s life context (cultural, environmental, spiritual, and social) during sexual education and counseling.¹⁴ Discussions regarding sexual function should be broached by the interdisciplinary team members caring for the patient. Patients may be open to these discussions at different times throughout the continuum of rehabilitation care. If permission is obtained from the patient, family members and caregivers could be involved in discussions and education. Sexuality is generally a sensitive topic. Use open-ended questions during discussions. Providers should be non-judgmental and respectful of each patient’s gender identity, sexual orientation and practices.

Providers can refer to the PLISSIT model of addressing sexual function³⁵

• Permission: Obtain permission to talk about sexual issues
• Limited Information: Assess readiness to discuss the impact of SCI on sexual expression
• Specific Suggestions: Make specific suggestions based on a full evaluation of the problem
• Intensive Therapy: Most sexual concerns can be addressed at the limited information and specific suggestion level of intervention, but, occasionally, referral for therapy is required

Provide resources such as

• PleasureABLE Sexual Device Manual for People with Disabilities Naphtali K, MacHattie E.¹⁵
• Sexuality and Sexual Function after Spinal Cord Injury Model Systems Fact Sheet.
• Sexuality and Reproductive Health in Adults with Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals.¹⁴
• “Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury”³⁶

Institutional guidelines should reflect ethical principles to maintain

• Respect autonomy and the cultural backgrounds of individuals
• Maintain professional boundaries between providers, caregivers, and clients
• Educate patients and families about risks of sexual abuse

Translation into practice: practice “pearls”/performance improvement in practice (PIPs)/changes in clinical practice behaviors and skills

• Approach the whole patients when discussing sexuality, using the biopsychosocial model.
• Recognize the effects of medications, including antidepressants and antispasticity medications, mood, and medical illness on sexuality.
• Discussion and education regarding sexual function should not be a single occurrence or conducted by a single provider. Rather, an interdisciplinary team should be involved during inpatient rehabilitation stays as well as outpatient.

Cutting Edge/Emerging and Unique Concepts and Practice

• Sacral nerve stimulation is a therapy used for treatment of urinary and bowel dysfunctions. Its role in the treatment of impaired arousal and erections is under investigation. Although the mechanism of action is not completely understood, the leading hypothesis suggests that stimulating peripheral somatic afferent pathways in the sacral plexus can result in modulating sexual pathways. However, procedures that require a dorsal rhizotomy will damage the reflexes involved in erection and arousal. Currently there is weak evidence suggesting modest favorable effects on male and female sexual function.³⁷
• Sensory substitution is being explored as a method of sexual rehabilitation. This is a technique where the sensation in a sensate area (e.g., sensation on the tongue) is mapped onto a lost sensory pathway (e.g., genital stimulation) via neuroplasticity.
• Electrical stimulation techniques, such as epidural stimulation, are being studied as possible ways to facilitate an ejaculatory response.^{38, 39}
• In men with a lower neurologic level of injury who have groin sensation, but no penile sensation, the “TOMAX” procedure was developed, microsurgically connecting the sensory ilioinguinal neve to the dorsal nerve of the penis unilaterally, resulting in improved penile sensation in 80% of patients.⁴⁰

Gaps in the Evidence-Based Knowledge

• Overall, there is little research on sexuality and SCI and even less is has been performed regarding LGBTQ+ patient populations
• Much of our knowledge of arousal, ejaculation and orgasm stems from self-reports; further research is necessary to determine the neurologic pathways involved in the sexual responses and how these are altered in spinal cord–injured individuals
• More research is needed to determine optimal timing, methods and effectiveness of counseling and other techniques for optimizing sexual function and satisfaction.

References

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Original Version of the Topic

Lance L. Goetz, MD. Sexuality and reproductive health after SCI. 6/7/2013.

Previous Revision(s) of the Topic

Lance L. Goetz, MD. Sexuality and reproductive health after SCI. 3/29/2017.

Marika J. Hess, MD. Sexuality and Reproduction after SCI. 4/20/2022

Author Disclosure

Vera Staley, MD
Nothing to Disclose

Deanna Claus, MD
Nothing to Disclose

Emma Drenth, MD
Nothing to Disclose