Key points

Introduction

The World Health Organization estimates that there are over 15 million individuals globally living with a spinal cord injury (SCI), and the incidence and prevalence have been increasing each year. Although men are more commonly affected than women, women account for approximately 20% of the SCI population. However, guidelines for best care and management of these individuals are generally non-sex specific. Differences between men and women necessitate medical and rehabilitation considerations such as primary care annual evaluation for women with SCI, bladder management, and sexuality and reproductive health issues.

Primary care/annual evaluations

There are many barriers to care for the general population and even more for individuals with SCI. ^, Studies have shown that women with SCI are less likely to receive the recommended examinations. Challenges specifically include but are not limited to inaccessibility (office space or office equipment), socioeconomic systemic issues (cost, transportation), or lack of knowledge by providers (conscious or unconscious biases). Preventative care guidelines for women with SCI follow similar guidelines as the general population, including screening, evaluations of health risk and needs, counseling, and immunization, but annual evaluations should include a focus on SCI specific issues.

Primary care annual examinations are based on age, medical or family history, and lifestyle and health behaviors. ^, General health evaluations can include blood pressure screening, monitoring for obesity and diabetes, folic acid supplementation, lipid screening, and unhealthy alcohol and drug use. Individuals with SCI should be evaluated for routine immunizations including tetanus, influenza, pneumococcal, and human papilloma virus. ^, Along with colon cancer screenings, women with SCI should have breast and cervical cancer screenings at the same frequency as the general population. However, women with SCI face logistical barriers that can impact obtaining testing at appropriate times such as inability to position for mammography and pelvic examinations, inaccessible clinician offices, or inability to transfer to examination tables for appropriate evaluations. ^,

Annual evaluation for genitourinary issues typically focuses on neurogenic lower urinary tract dysfunction (NLUTD) and bladder programs. ^, Bladder program and management refers to types of bladder emptying such as voiding (volitionally or spontaneously), clean intermittent catheterization (CIC), or use of indwelling catheters. Clinicians should evaluate for complications such as recurrent urinary tract infections (UTIs), nephrolithiasis or bladder lithiasis, or vesicoureteral reflux causing hydronephrosis and kidney dysfunction. Women should follow closely with urology and should have renal imaging depending on the risk factors. Urodynamic studies should optimally be completed within 3 months of new SCI and repeated with new symptoms or complications to adjust treatment strategies. ^, Cystoscopy can be used to evaluate the lower urinary tract but should not be routinely performed for screening or surveillance. ^,

The focus for gastrointestinal issues typically revolves around neurogenic bowel dysfunction and bowel programs. Bowel program and management refer to the activities that help a person with SCI achieve regular planned and time-limited bowel evacuation with sufficient stool volume and adequate consistency, and avoid complications and unplanned defection. During evaluation, clinicians should take a detailed history including effectiveness, timing, diet, oral medication, rectal interventions, and complications.

After SCI, there can be other cardiac issues such as autonomic dysfunction depending on level of injury. Adults with cervical- and thoracic-level injuries can present with orthostatic hypotension. Individuals with SCI at T6 or above are at higher risk of autonomic dysreflexia (AD), with signs and symptoms of elevated systolic blood pressure 20 mm Hg above their usual baseline, headache, changes in heart rate, sweating or flushing of the skin, piloerection below level of injury, blurred vision, nasal congestion, and feelings of apprehension or anxiety. Some individuals may not have symptoms other than elevated blood pressure. Common triggers are noxious stimuli related to bladder, bowel, and skin. Specifically, women should be educated on AD caused by menses, pelvic floor dysfunction, stretching of vagina during sexual activity, and pregnancy. Women who have AD episodes should be educated on typical management to alleviate these triggers and pharmacologic management when needed.

Women with cervical SCIs are at a higher risk of pulmonary dysfunction because of impairments of innervation of the diaphragm and accessory breathing muscles. ^, Women have proportionally smaller lungs and airways compared with men and lower absolute measures of resting pulmonary function. Annual maintenance evaluations should include immunization, ^, surveillance for signs and symptoms of sleeping-disordered breathing, education of regular use of respiratory muscle training exercises, and consideration of pulmonary function testing. ^,

Hormone differences with testosterone and estrogen impact the structure of the skin. Male skin on average is 20% thicker than female skin and contains more collagen. As individuals age, collagen content decreases and female skin is affected more after menopause. Women with SCI have impaired sensation and mobility, which increase their risk of pressure injuries. Annual examination should assess risk factors for skin breakdown including nutrition and adequate support surfaces (wheelchair cushions, mattresses, commode chairs) and have a full skin examination. Any wounds should be documented regarding location, size, appearance of wound bed, wound edges, and staging. Wound care plans should include an interdisciplinary approach and focus on control of infection, removal of necrotic or nonviable tissue, moisture management, and frequency of treatments. ^,

Although there are no specific guidelines regarding annual musculoskeletal issues, issues related to spasticity, overuse injuries, and heterotopic ossification should be evaluated, as complications can reduce function, cause pain, and decrease quality of life. Women tend to experience more overuse-related injuries compared with men and are more susceptible to shoulder laxity and rotator cuff tears. Loss of range of motion and increased pain can interfere with position in wheelchairs, cause pressure injuries, and limit functional mobility such as transfers and wheelchair propulsions.

Although osteoporosis screening begins at age 65 in women, individuals with SCI have bone loss beginning immediately after injury, and this is the most severe in the next 2 years. ^, All parts of the skeleton below the level of injury are affected, and the amount of bone loss depends on incompleteness of motor function. Assessment of fracture and fall risk should be evaluated on an annual basis. Bone health can be screened with laboratory testing, and postmenopausal women should have additional measurements of prolactin, follicle-stimulating hormone (FSH), luteinizing hormone (LH), and estradiol levels. Newer guidelines recommend bone density testing with dual energy X-ray absorptiometry (DXA) of the total hip, proximal tibia, and distal femur as soon as medically stable. However, implementation in clinical practice can be limited, as typical DXA screening is obtained for lumbar spine and hip. Vitamin D should be repleted if deficient, and calcium supplementation is recommended depending on age. Rehabilitation therapy that can reduce bone mineral density decline includes passive standing protocols, functional electrical stimulation (FES), or neuromuscular electrical stimulation (NMES). Discussion regarding risk-benefit ratio of pharmacology therapy is recommended, and women with low bone mass and moderate to high fracture risk should be offered medications.

Mental health issues such as depression and anxiety are typically screened during annual evaluations. Women have twice the lifetime rate of depression and anxiety disorders compared with men, while men are more likely to abuse illicit drugs and alcohol. After SCI, individuals are at greater risk for mental health issues, and thus all individuals, especially women, should be screened for depression, anxiety, and substance abuse.

Lastly, other issues to evaluate on an annual basis include adjustment to disability, community participation, educational and employment status, equipment status, medical and functional status, transportation, and social and caregiver support. ^,

Bladder management

Neurogenic lower urinary tract dysfunction (NLUTD) affects most individuals with SCI because of interruption of the communication between the pontine micturition center and the spinal cord. Between the sexes, there are significant differences in the anatomy and physiology of the lower urinary tract that impact function and rehabilitation needs.

Differences in internal anatomy include a shorter urethral length in women, positioning of the bladder anterior to vagina, presence of the prostate in men, and differing pelvic floor physiology. Differences in external anatomy include opening of the urethra meatus at the glans of the penis in men compared with opening of the meatus below the clitoris and above the vagina in women.

Medications for management of bladder target different receptors within the bladder wall, and there are differences in the distribution of the receptor subtypes between men and women. ^, Antimuscarinic medications can decrease detrusor muscle contractions and spasms. Prior studies have shown that asymmetry in receptor expression results in reduced efficacy of antimuscarinic medications in women. β -Adrenoceptors mediate relaxation of smooth muscle in the bladder and urethra. α1-adrenoceptors may play a more prominent functional role in the bladder neck, and hence the regulations of bladder outlet resistance. Men typically have more α1-adrenoceptors located in the bladder and urethra near the prostate.

In women with a new SCI, providing education of bladder management is an interdisciplinary task. Conservative methods of emptying bladder include triggering the bladder reflex, bladder expression, CIC, or use of an indwelling transurethral catheter. More invasive methods include suprapubic catheter (SPC) or surgical bladder procedures such as sacral anterior root stimulation, incontinent urinary diversions such as ileal or colon conduit, or continent urinary diversions like catheterizeable pouches or channels (Mitrofanoff procedure). Each method has pros and cons, and women should decide with clinician guidance which would be best for them. Factors in choosing a method include other medical comorbidities (skin, bowel, or kidney dysfunction), caregiver involvement, cost, and functional ability of the individual.

Voiding of the bladder involves a coordination of detrusor muscle contraction and sphincter relaxation. Women with sacral and infrasacral lesions may safely use bladder expression with Crede (manually pressing down on the bladder) or Valsalva techniques (increasing pressure inside the abdomen by bearing down) to facilitate voiding. Women with reflexive bladder can use the bladder reflex and trigger voiding using stretch receptors when repeatedly tapping on the bladder. However, there can be complications of using this technique, such as AD, vesicoureteral reflux, renal deterioration, UTI, lithiasis, and loss of bladder compliance. Thus reflex voiding is commonly discouraged by SCI clinicians unless confirmed safe by urodynamics study. Other factors to consider for voiding include functional ability. If a woman is continent and voiding volitionally, she would need to be able to transfer to a commode, manage clothing, and manage hygiene. If a woman is spontaneously voiding and incontinent, she would need incontinence undergarments or diapers as there are limited external catheters for women. Men can use external condom catheters, while in women, external catheters require suction, are positioned between legs, and typically are only used in hospital settings. The constant moisture with spontaneous voiding can cause further complications with fungal infections and skin breakdown.

CIC is regarded as best practice for preventing UTIs compared with other methods, as there is no indwelling long-term foreign body, and CIC allows for more natural bladder filling and voiding cycles. ^{, , ,} While women do not have prostates that can obstruct CIC, other functional considerations must be considered. Men with C7-C8 lesions can possibly perform CIC with adaptive equipment; however, women typically require intact bilateral hand function in order to undergo CIC without complications. Additionally, women require adequate sitting balance, ability to manage legs and clothing, and appropriate positioning to be able to self-catheterize. And even with intact hand function, body habitus and skin folds of the labia can make catheterization difficult. Mirrors can be used to assist in visualization, and women can also be taught the touch technique, which uses vaginal landmarks and the position to feel for the urethral meatus.

Women are more likely to have an indwelling catheter (transurethral or suprapubic catheter) at discharge from rehabilitation. This is because of the level of injury, hand function, mobility, and caregiver involvement. Transurethral catheters follow the urethral anatomy and do not require special procedures for placement. However, there is an increased risk of UTI, kidney or bladder lithiasis, and urethral erosion and leakage with long-term use. Suprapubic catheter (SPC) is another option, with the catheter directly placed through the abdominal wall and into the bladder. Advantages of the SPC are less urethra trauma or strictures, less risk of catheter-induced urethritis, lack of interference with sexual function, and less likelihood of contamination from bowel incontinence. Both indwelling transurethral catheters and SPC have continuous drainage bags and remain in the body for several weeks before being exchanged. Thus, caregivers must perform hygiene and empty the bag when full, which may be logistically easier than CIC.

Surgical management of NLUTD may be required when conservative methods fail. For example, because a woman’s urethra is shorter in length and long-term use of an indwelling catheter can lead to erosion, the indwelling catheters may leak or become dislodged overtime. Level of injury and diagnostic testing must be considered for surgical planning and sacral neuromodulation, and urinary diversion may be considered. ^,

Sexuality

Studies regarding sexuality in SCI are largely limited to men, but there is growing research into understanding the sexual disorders of women with SCI. Prior research confirms that individuals with SCI can have the same levels of sexual desire as those without SCI. However, physical and mental barriers may limit postinjury sexual intercourse and hinder romantic or intimate relationships. Additionally, the degree of sexual dysfunction may vary with the level and completeness of injury.

After SCI, there can be impairment of genital sensation and vaginal lubrication. ^, Sympathetic cell bodies that control vaginal blood flow can be impacted and may inhibit genital lubrication. Psychogenic lubrication is associated with retained perception of light touch and pinprick. However, when these individuals lack sensation, significant genital lubrication is not possible. Reflexive lubrication may also be affected, with literature showing up to 25% of women with complete lower motor neuron injuries capable of achieving psychogenic lubrication but not reflex lubrication because of lack of an intact sacral reflex arc. This impairment in genital lubrication can be treated with over-the-counter water-soluble gel. Also, also genital sensation may be decreased, evidence shows that erogenous zones above the SCI level such as the head, neck, and back are commonly enhanced. ^,

The ability to orgasm in women with SCI may be diminished. Fifty percent of women with SCI can achieve orgasm with T12-L1 level injuries, and about 17% of women with S2-S5 injuries may achieve orgasm. Of the women with SCI who can climax, more time and more intense genital stimulation may be required. The orgasm may also be reduced in intensity and be less enjoyable than before injury. This orgasmic dysfunction in women with SCI may be improved through use of tools such as a clitoral vacuum suction device. This instrument increases the ability to achieve climax by raising clitoral blood flow through suction. The resulting clitoral engorgement increases vaginal lubrication and boosts the chances for orgasm.

Changes in bowel and bladder incontinence can also create barriers to physical intimacy. It is important to encourage people with SCI to perform urinary and intestinal care before sexual activity to prevent episodes of incontinence. ^{, ,} Although preventing urinary incontinence is possible, it can be incredibly distressing for individuals with SCI. Catheterization and decreasing fluid intake prior to intercourse may reduce the risk of urinary incontinence during coitus. Washing and repeat catheterization immediately after intercourse reduces the risk of UTI; however, it is noted to have a negative impact on the subjective sexual experience.

Control of stool or flatulence is more difficult than that of urine. For individuals with lower motor neuron injury, elevated abdominal pressure caused by penetration may cause expulsion of stool. This risk may be further increased by certain positions such as knees to abdomen. Strategies such as digital rectal evacuation of the stool, restraining food intake before coitus, and a regular bowel routine can improve intestinal control. Although the anxiety of fecal incontinence may remain, employing these techniques regularly has been shown to reduce the frequency of fecal incontinence. ^,

Some evidence suggests that because sexuality has a large psychosocial component, sexual activity may be limited more by mental barriers rather than physical impairments. Damage to self-esteem and body image, as well as lack of support during rehabilitation regarding changes in sexuality have been associated with limited postinjury sexual activity.

Anxieties regarding intercourse are common after SCI. Individuals may have concerns about body image, possible incontinence, risk of injury, and the ability to satisfy their partner. Weight and shape changes, scarring, and medical devices have been associated with an overall reduction in satisfaction with body image.

Moreover, as the SCI partner becomes more dependent on the noninjured partner, the change in power dynamics of the relationship may create a barrier to intimacy. Individuals with tetraplegia may note a rise in frustration and guilt for depending completely on their partner to coordinate the physical aspects of intercourse. The presence of a health aide nearby or knowing that caregivers might be aware of sexual activity is another barrier to physical intimacy. Overall, women with SCI who are more independent and rely less on their uninjured partners for caregiving are more likely to have successful sexual lives after injury.

Support from the significant other has been shown to help with confidence and self-esteem issues for individuals after SCI. Women with SCI have a greater chance of successful sexual adjustment if their noninjured partner has a better understanding of postinjury sexual needs. Women with SCI have been noted to value sex as a positive, rewarding experience even when orgasm is unobtainable because of the emotional component increasing in significance.

Fertility

About 60% of women with SCI experience an initial period of amenorrhea for an average of 5 to 6 months following SCI. ^{, ,} After this interval, it is possible for these women to successfully conceive and carry a child to delivery. Although long-term fertility is unaffected and the desire to have children after injury is unchanged, women with SCI often face alterations in menses and new complications during pregnancy and childbirth. ^{, , ,} Unfortunately, there is often little information given to women with SCI regarding pregnancy after injury.

Menstruation length does not change following SCI. However, women after injury may have greater premenstrual and menstrual symptoms such as dysmenorrhea and cramping compared with women in the general population. These complaints can be treated with anti-inflammatory agents. Women with SCI may also encounter greater SCI-related complaints during these premenstrual and menstrual phases, including autonomic dysfunction, increased bladder spasms, and increased spasticity. ^,

Education regarding the return of menses should occur before discharge from acute inpatient rehabilitation and should include information on the application and use of feminine hygiene products. Some women may benefit from the use of mirrors to confirm placement of feminine products, splinting or adaptive equipment for better hand function, or instruction on how to best guide caregivers for assistance.

Contraception is an important subject to discuss with women following an SCI. Prior literature shows that more than 70% of women with SCI use birth control, with condoms being the most common choice. Oral contraceptive pills are another preferred method of birth control but should not be prescribed to women who are smokers, are within 1 year of injury, or have a history of cardiovascular problems because of increased risk of arterial and venous thrombosis. Caution should be given to prescribing depot medroxyprogesterone acetate (DPMA) injections or subdermal implants, as they may exacerbate post-SCI bone loss. Alternatives such as the barrier method (eg, intrauterine devices) are used less frequently because of an association with pelvic inflammatory disease. This is especially relevant to women with SCI, as they are already more prone to pelvic inflammatory disease because of their increased risk of UTIs and reduced pain sensation. Other commonly used barriers such as diaphragms, cervical caps, and vaginal sponges may cause vaginal wall breakdown because of prolonged pressure.

In regards to menopause, literature shows that women with SCI experience similar symptoms as their noninjured counterparts. However, there have been noted clinical observations that women with incomplete injuries report more frequent night sweats than those with complete injurie,s and women with paraplegia have increased bleeding than those with tetraplegia.

When preparing for pregnancy, a woman with SCI should first undergo a thorough physical, psychological, and emotional evaluation that includes a discussion of the risks and benefits of bearing a child while having an SCI. ^{, ,} A multidisciplinary team should be assembled for comprehensive care of chronic medical conditions and changes during the pregnancy. This team may include but is not limited to an obstetrician with experience in caring for women with disabilities, maternal-fetal medicine physicians, SCI specialists, physiotherapists, and neonatologists. ^, Antenatal care visits should occur at a similar routine as women without SCI with specialist-specific visits as necessary.

Pregnancy

Many women of childbearing age with SCI will pursue a pregnancy sometime after the first year from injury. There is no evidence to suggest a higher chance of adverse overall pregnancy outcomes, but problems do exist that are unique to the pregnant SCI population.

Prior studies ^, have shown that the most common problems for pregnant women with SCI are urinary complications, with UTI and pyelonephritis being the most common reason for antenatal hospitalization. These individuals are also at increased risk of renal calculi because of incomplete bladder voiding, catheterization, and postinjury immobilization hypercalcemia.

As the pregnancy develops, women with SCI will have worsening immobility and progressive difficulty with transfers. Despite the elevated risk immediately following injury, women with SCI have a similar chance of venous thromboembolism during pregnancy as the general population, when this increased immobility is accounted for. This congruence is because of the vessel remodeling and physiologic adaptation that occurs over time below the spinal level of injury.

Skin care routines to prevent pressure injuries may need to be adjusted as the gestation age progresses. Weight gain, increased tissue edema, and the increased immobility during pregnancy can worsen the risk of women with SCI to develop decubitus ulcers. Overall, about 6% to 15% of pregnant women with SCI will develop decubital ulcers. ^, Therefore, there should be greater attention to skin care, use of pressure-relieving support surfaces, and appropriate weight shifting, especially in the postpartum phase and in any inpatient admission during pregnancy.

Spasticity may be another challenge for women with SCI carrying a child. Prior evidence shows a 12% incidence of worsening spasms during pregnancy in this population. ^, Although treatment can include medications like baclofen, tizanidine, or benzodiazepines, these drugs are not recommended during pregnancy, as they can cause neonatal withdrawal symptoms. Spasticity management during pregnancy may rely more heavily on regular stretching routines and occasional adjustments to medical equipment to account for the changes in mobility.

In women with spinal cord lesions above the T4 level, there may progressive difficulty breathing because of weakened muscles of ventilation. These can necessitate chest physiotherapy, continuous positive airway pressure, or even mechanical ventilation as the pregnancy develops. It is important for physicians to acquire baseline pulmonary function testing and look for signs of nocturnal hypercapnia that may predict impending ventilatory failure.

Preterm birth is common for women with SCI. ^{, , ,} Some evidence suggests this may in part be caused by the higher rates of infection including UTI. As delivery approaches, it is vital that women with SCI have good communication with the delivery unit. ^, Because pain in the first stage of labor is innervated by the T10 to L1 spinal segments, women with injuries at the T10 level or higher may be unaware of uterine contractions because of decreased labor pain. Instead, these individuals may experience other symptoms controlled by the sympathetic nervous system such as leg spasms, increased spasticity, or shortness of breath. In order to minimize risk, it is important to instruct women how to recognize these atypical symptoms of labor and how to perform uterine palpation techniques to detect contractions.

The most serious complication that can happen in women with SCIs is autonomic dysreflexia, which occurs in 85% of individuals with lesions at the T6 level or higher. ^, It is most likely to occur during labor but is possible during any phase of pregnancy. AD may be distinguished from pre-eclampsia by several differences including hypertension present only during labor contractions and the lack of proteinuria as seen in pre-eclampsia. AD must be treated quickly, as this complication can result in serious complications such as hypertensive encephalopathy, cerebrovascular accidents, intraventricular hemorrhage, retinal hemorrhage, and death.

Although women with injuries at or above the T10 level may have diminished pain perception, appropriate use of anesthesia is still necessary as labor begins. Some women may be concerned about further injuring their spinal cord during the administration of an epidural. Determining the success of an epidural block is not possible in women with complete SCI; however, a block height of T8-T10 is typically adequate, and the lack of subsequent AD is a good indication of efficacy.

Women with SCI may give birth vaginally, but if autonomic dysreflexia occurs during the second stage of labor, forceps or vacuum-assisted delivery may be necessary to expedite delivery. If an episode of autonomic dysreflexia cannot be controlled, then a cesarean birth may be required. Previous literature has shown significantly elevated rates of cesarean births (up to 69% in women with SCI). ^{, , ,}

Regardless of delivery type, women with SCI tend to have longer hospitalization stays. This may be because of physicians attempting to confirm that individuals are able to balance care of the infants and themselves within their specific mobility restrictions and that sufficient education and care needs are arranged before discharge. ^, It is also important to examine any perineal wounds or cesarean incisions because of delayed wound healing. Counseling should be provided to women regarding postpartum medications and procedures, such as fundal massage, that raise the risk of autonomic dysreflexia.

Breast feeding may be difficult in these individuals as injuries may suppress breast feeding and are associated with shorter breastfeeding times. There is also some evidence that oxybutynin, which is used for bladder spasms, may also impede lactation. It is important for providers to adequately review this information and medications with women with SCI and to consult lactation specialists as needed.

Screening for maternal mental health disorders is particularly critical in women with SCI, as they have been shown to have increased rates of depression, alcoholism, and suicide. ^{, ,} Some studies report a six- to ninefold increase in postpartum depression rehospitalization, while another study showed the most common postpartum complication as depression. ^{, ,}

Additional complications exist for women who experience SCI during pregnancy. Some evidence shows an association between these individuals and higher risk of fetal loss and fetal malformation, possibly because of the period of hypoxia during spinal shock. ^{, ,} However, this risk is reduced if blood pressure and oxygenation are maintained properly and if the SCI occurs toward the end of pregnancy. ^, It is important to note that surgery on an unstable spine is not contraindicated by concomitant pregnancy. ^,

Summary

Women with SCI have specific medical and rehabilitation needs compared with men. Primary care annual evaluation, bladder management, and sexuality and reproductive health issues for women with SCI are often overlooked, as most guidelines are non-sex specific. Clinicians caring for women with SCI must understand these differences and work with interdisciplinary teams for best outcomes and improve quality of life and function.

Clinics care points

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  Primary care evaluations for women with SCI should follow the general population for screening, evaluations of health risk and needs, counseling, and immunizations.

  
  
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  Multisystem SCI issue evaluations specific for women should be addressed on annual basis.

  
  
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  Anatomic differences between men and women result in different rehabilitation needs, equipment, education, and functional status after SCI for bladder management.

  
  
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  Physical and mental barriers may limit postinjury sexual intercourse and hinder romantic or intimate relationships.

  
  
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  Reproduction and fertility after injury are unaffected after injury; however, functional difference can cause barriers for care.

  
  
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  Pregnancy in women with SCI has medical and rehabilitation considerations, and interdisciplinary teams are needed to avoid complications.

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