Sexuality is an important part of life for persons with and without disabilities. Research has addressed the sexual concerns of persons with spinal cord injuries (SCIs), multiple sclerosis, stroke, arthritis, musculoskeletal impairments, and other disabilities. Yet, the needs of persons with disabilities with regard to sexuality are commonly underaddressed. This is unfortunate because, as has been shown in persons with multiple sclerosis, sexual dysfunction can have a greater negative impact on mental health related to quality of life than severity of physical disability and it can be posited that this would also be the case for other disabilities.
Telerehabilitation presents an ideal opportunity for providing information about sexual health to persons with new or long-standing disabilities. Persons in acute rehabilitation are often too preoccupied with concerns such as a new stroke, traumatic brain injury (TBI), or SCI, to name a few, to focus on any information provided regarding sexuality. Additionally, older individuals may have preexisting sexual concerns that predate a new disability, such as those related to diabetes, hypertension, coronary artery disease, or neuropathy. For these individuals, the availability of sexuality treatment programs and sexual counseling can provide an opportunity to complete their reintegration into their previous lifestyle and even potentially improve their premorbid sexual function.
Review of the published literature reveals sparse information on the use of telemedicine for sexuality concerns. There is a recent Kaiser Foundation report that addresses the use of telehealth services for prescription of contraceptives for women and for treatment of sexually transmitted infections. Another report addresses the use of telehealth to treat internet-based sexual addiction. Moreover, a recent paper regarding the use of telemedicine for sexual medicine focused on the legal aspects of telehealth and setting up a practice with some do’s and don’ts, rather than providing a review of published literature. With regard to telehealth and disabilities there is a considerable amount of information available on the internet about specific sexual topics and this information has been reviewed for content; however, there is little information available about how to have an actual telerehabilitation visit related to sexual concerns.
The use of electronic medical records has paved the way for the use of telerehabilitation to provide sexual counseling and remediation services. With consumers having easy access to their medication lists and their concomitant diagnoses, which they can quickly share with health care professionals, there is a new opportunity to provide access to remote, more specialized providers. Additionally, there is an opportunity for detailed aspects of the physical examination and imaging to be shared with health professionals.
In order to perform a telerehabilitation sexuality-focused visit, it is important to ensure that the basic tenets of telerehabilitation are followed. The provider needs to be in a private, well-lit space where the patient can feel comfortable that they are being properly assessed. The patient also needs to be reminded at the start of the visit that the professional will be asking them about sensitive issues; thus they need to feel comfortable with an appropriate level of privacy in their location. It is especially important that any local laws such as HIPAA are followed and that all aspects of internet security are considered, despite any temporary clemency due to COVID-19. Additionally, it is important that any partner is allowed to attend the visit and, if necessary for physical examination, the patient should have an assistant present.
Comprehensive assessment of sexuality after a disabling disorder starts with a review of the individual’s childhood and adolescent sexual experiences. The worldwide prevalence of child abuse is 8% to 31% for girls and 3% to 17% for boys, with 9 girls and 3 boys out of 100 having experienced forced intercourse. Thus it is important to be aware of this issue and assess whether the individual was raised in a healthy sexual environment or whether there were issues of abuse causing distorted sexual development. These long-standing issues are important to identify because they often lead to psychological and sexual concerns, such as anxiety, low self-esteem, and depression, which compound the impact of disability on sexuality and can also lead to medically unexplained symptoms. Moreover, these individuals are at risk for later revictimization and high-risk sexual behavior, having multiple sex partners, teenage pregnancies, and experiencing sexual assault as adults. If an individual has a history of sexual abuse, it is important to ascertain if they have access to proper counseling and treatment and that these issues are recognized in any discussions of sexuality and disability.
It is also important to assess sexual orientation and gender identity and whether there are religious or cultural issues that impact an individual’s sexuality. Those individuals who are raised in a sexually restrictive religious environment may have experienced issues related to the expression of their sexual orientation or nonconforming gender identity. Moreso, they may have concerns regarding participating in sexual acts outside the context of marriage, the use of birth control, or the practice of abortion. Thus as part of a sexuality telehealth visit, it is appropriate to query the individual regarding their sexual orientation, gender identity, and whether there are any religious or cultural concerns they have regarding their sexuality.
Demographic and Relationship Issues
The desire and need for sexual expression changes throughout the lifespan. It is therefore important to consider the age and relationship status of the person who is being treated. It is also important to assess the individual’s premorbid level of sexual knowledge and determine whether they have an appropriate foundation of information to begin learning from. Individuals who have never achieved orgasm prior to a disability or illness need to be treated differently than individuals who are sexually experienced. Moreover, relationship status and whether individuals are married, separated, divorced, and/or living with a partner needs to be determined so that the contributions of the partner and relationship to the individual’s sexual situation are identified. Nevertheless, the health professional must not fall into a practice of assuming that just because an individual is elderly that they are not sexually active or do not have an interest in sexual rehabilitation.
Before assessing the impact of a specific disability on an individual’s sexuality, it is important to determine what the individual’s premorbid sexual functioning was. In the time of the electronic medical record, the health professional can often obtain a glimpse into the individual’s function by assessing their medication list. Individuals with a preexisting prescription for a phosphodiesterase type 5 (PDE5) inhibitor such as sildenafil or vardenafil likely have a premorbid issue with erectile dysfunction (ED), while individuals with depression or anxiety can have sexual dysfunction either from the disorder or from treatment with a serotonin-specific reuptake inhibitor such as fluoxetine or paroxetine and are prone to loss of libido, arousal dysfunction, and orgasm dysfunction. Individuals with diabetes type 1 and 2 often have issues with neurogenic or vascular arousal dysfunction; thus it is important that an adequate premorbid history is obtained. Similarly, individuals with peripheral vascular and/or coronary artery disease often have sexual arousal dysfunction and individuals with genitourinary issues such as benign prostatic hypertrophy or postmenopausal vaginal atrophy often have concomitant issues with arousal and potentially dyspareunia. Finally, people with chronic pain can have physical issues with positioning because of the pain and because many medications that have either been previously prescribed for pain management or are in vogue now result in sexual dysfunction.
The Impact of the Individual’s Disability
Once you have taken the individual’s premorbid psychological and medical history into account, it is time to assess the impact of the individual’s particular disability on their sexual functioning. An easy way to do this is by considering where the pathology is located on the individual’s body and whether this pathology will cause a direct or indirect effect on their sexual response. People with spinal cord dysfunction probably have the most direct impact of their dysfunction on sexual response, and research has confirmed that the impact of injury on sexual response is related to the location and degree of injury in the spinal cord. Based on this research it has been determined that the degree of preservation of the ability to perceive pinprick and light touch sensation in the T11-L2 dermatomes can help predict the retention of psychogenic genital arousal, while the maintenance of reflex responses in the S3-5 area can predict the retention of reflex genital arousal. This important information is obtained through physical examination and the International Standards to Assess Autonomic Function after SCI is a useful format to record this information. With the new version of the standards, which were released in 2021, the user is prompted with a section that indicates the anticipated impact of the injury on sexual response. This facilitates comparing the anticipated impact that the injury could cause with the impact that the individual with the SCI reports, making it easier to see if there is potential for factors other than the SCI to contribute to an individual’s sexual concerns. For diagnoses other than SCI or SCD there can still be direct neurological effects on sexual function, such as with autonomic neuropathies associated with diabetes, surgical procedures that can negatively affect the thoracolumbar sympathetic output, or with stroke, TBI, or multiple sclerosis with damage to the central nervous system pathways involved in sexual response. However, as compared to SCI, there is substantially less research defining the impact of specific neurological injuries on human sexual arousal. Moreover, since stroke is often accompanied by comorbidities such as hypertension and diabetes that can have independent effects on sexual response, it is difficult to determine if there is any particular pattern of stroke that causes sexual dysfunction.
Orgasm is generally considered the culmination of the sexual response cycle. For persons with SCIs it has been determined that genital orgasms are improbable in persons with complete lower motor neuron SCIs affecting their sacral segments. Determination that an injury is a complete lower motor neuron injury requires the performance of an International Standards for the Neurologic Classification of SCI examination and the finding of no sensation when a gloved finger is pressed against the anal wall and no sensation at the S3-5 dermatomes. Additionally, the individual must have no bulbocavernosus reflex and no anal wink reflex, and these individuals have a patulous anus and areflexic bladder and bowel. This is not to say that these individuals may not have a nongenital orgasm; however, it is prudent to educate this group of people in particular about their options for nongenital orgasm. For people with all other levels and degrees of SCI, statistics in an untreated population have shown that approximately 50% of males and 50% of females retain the capacity for orgasm after SCI. Moreover, this capacity is not based upon degree or level of injury. In light of this, it is important to inform people with SCIs that problems achieving orgasm may be multifactorial and not just related to their injury, and that it is worthwhile to work to remove potential offending agents that could contribute to orgasmic dysfunction after SCI, especially if the individual is interested in improving their orgasmic capacity.
The Need for Education and Practice
Once the potential impact of injury on a person’s sexual response has been assessed, it is important to educate the patient about their sexual potential. Education about positioning helps people prepare to engage in sexual activities in advance so they can be more confident in their sexual encounters. Additionally, education about the potential for neurogenic bladder and bowel accidents and the need for assuring adequate emptying prior to sexual activity is important. Spasticity and neuropathic pain can also cause difficulty with positioning during sexual activity and the use of lubrication, satin sheets, and adequate cushioning can also be a worthwhile addition to someone’s sexual repertoire.
For people with respiratory concerns, the need for oxygen during sexual activity or the use of a ventilator is an important point to discuss. Similarly, people who have sustained strokes or recent myocardial disorders need to be counseled and provided with information regarding what activities are safe for them to engage in. Individuals with arthritis may require extra lubrication and joint protection techniques during sexual activities and those with hip replacements need to maintain their operative precautions.
Generally, after basic education is provided for people with new injuries or disabilities, it is worthwhile to explain that the individual needs to go home and “practice” to see the impact of their injury or illness on their sexual function. In the case of people with SCIs, masturbation is beneficial to see what does and does not work for them from a sexual standpoint and this may be facilitated by voice-activated devices or through the use of adaptive devices if a person has decreased hand function. With a neurological injury or disorder, the change in sensation and motor function that an individual experiences must be acknowledged and explored so that the person feels comfortable with their body. More so, by masturbating, the person is able to explore their own body without the stress of pleasing a partner or worrying about how their new body works or about bladder and bowel concerns. The individual can also experience the impact of arousal and orgasm on their spasticity and pain and try out various adaptive devices and sex toys that can help stimulate their arousal and orgasm. In the case of SCI, research has shown that it takes significantly longer for women with SCIs to achieve orgasm through masturbation than able-bodied women. In contrast, in men with SCIs it takes longer to achieve orgasm through masturbation but the results were not statistically significantly different than for able-bodied men.
The issue of using masturbation as a means to reclaim one’s sexual potential after stroke, multiple sclerosis, or with other progressive neurological issues has not been addressed. It follows, however, that eliminating the distractors of a partner and thereby decreasing stress would have a positive impact on one’s ability to achieve orgasm. Decreased stress during sexual activity may also have a beneficial effect on blood pressure; however, further research is necessary to explore this potential.
The Importance of Follow-Up
Sexuality is not a static concern. After an initial visit, it is recommended that they review appropriate reading material such as Sexual Sustainability: A Guide to Having a Great Sex Life with a Spinal Cord Disorder. Moreover, it is recommended that any sexual consultation performed through telerehabilitation include a follow-up session. This allows the individual to go home, explore their sexual potential, and then to come back and essentially have a confidante to discuss their findings—both positive and negative. This is an important option because the first exploration of one’s sexual potential after stroke or other disability can lead to many findings and questions. Additionally, there are many other variables that affect the sexual potential of a person, regardless of the presence of a disability and these issues can surface once an individual starts to become sexually active. For instance, although people may express an interest in regaining their sexual self after an injury or illness, they may still be wrought with other medical concerns that predominate their life and the presence of a follow-up appointment with a physician or counselor can remind them of the importance of their sexuality. Additionally, the individual may realize that the problem is not the pathology, rather it is fatigue associated with their general lifestyle, and having their health professional ask them about their sexuality may remind them of its importance in their life.
Once a patient has completed the first round of sexual education, practice, and follow-up, it is worthwhile to review other issues that can be impacting a person’s ability to be sexually active. Common issues can include stress and depression, which can each independently affect sexual function. The presence of a new injury or disabling illness can cause the person to feel stressed about potential health care costs, the need for assistance at home, or the potential loss of employment and the impact on the family. If an individual is a breadwinner who needs to now be taken care of by their partner, this can also be a stressor on a relationship. Depression can preexist a new disability or illness and can also occur because of a new injury. Since depression in and of itself can cause sexual dysfunction and because psychological treatment for depression is generally beyond the scope of practice of a physiatrist, this can be a red flag as to the need for referral to a psychologist for patients seen in follow-up.
Other issues that can impact the sexuality of a person with a disabling condition include the presence of children or elderly parents at home. If the person is living in a busy household without privacy this may cause an inability to explore their sexual potential and thereby diminish sexual interest, leading to decreased activity and ultimately sexual satisfaction. Loneliness can also be an issue for a person with a disability. The inability to go out into the community as frequently can be burdensome, especially if they are quarantined at home or if there are medical reasons they cannot get out. Similarly, after an injury or disabling illness occurs, the partner may be a source of sexual distress. It is not uncommon for a person with an injury or illness to continue to want to remain sexually active and emotionally and physically intimate with their partner while the partner transitions into a caregiver role and decides that they are no longer sexually interested in the person with the disability.
When working to improve people’s sexual concerns, it is paramount to consider system-based and iatrogenic problems. A substantial variable in health care is the issue of insurance-based or hospital-based formularies that determine which medications a patient is prescribed. Unfortunately, these formularies often include medications that cause sexual side effects. Additionally, many providers are focused on their specialty or the acute problems that patients are experiencing when they are treated. This may also result in prescription of medications with sexual side effects and it is therefore important that the provider treating sexual dysfunction review and consider all of a patient’s medications.
In the field of rehabilitation, antispasticity drugs, narcotics, antidepressants, antiseizure medications, and antihypertensives commonly cause sexual side effects that can compound the impact of an injury on sexual responses.
The antispasticity drug baclofen is commonly prescribed for people with spasticity. It can be used orally and intrathecally. An issue that is commonly disregarded is that both oral and intrathecal baclofen can cause sexual side effects, including difficulty with maintaining an erection and ejaculation in men and orgasmic dysfunction in women. These findings were noted in individuals with SCI, multiple sclerosis, and cerebral palsy. In light of this, it is important when conducting a sexuality telerehabilitation consultation to consider the issue of spasticity and what medications the patient is on for treatment. Moreover, if the patient is on baclofen it may make sense to alter the timing of the drug, decrease the dose, wean the patient from baclofen, or switch to another antispasmodic such as tizanidine, dantrium, or botulinum toxin if the patient has focal spasticity.
Over the past three decades narcotics have been used excessively for treatment of chronic pain and the impacts of opiate crisis are well known around the world. One side effect of the opiate crisis that less attention has been paid to, however, is the impact on sexual functioning and with this the impact on relationships. Issues such as loss of sex drive in both men and women, loss of fantasies, loss of morning erections, premature ejaculation, and ejaculation with a soft penis have been reported. The use of buprenorphine as compared to methadone or heroin has been shown to have significantly less side effects on sex drive, fantasies, and premature ejaculation. Therefore it may be appropriate for individuals with low sex drive who may be on chronic opiates for pain management to be weaned to buprenorphine for concomitant management of their pain along with improvement in their sexual function.
Antidepressants are commonly used in rehabilitation and their use has particularly been touted in stroke. With regard to sexuality, however, antidepressants are a double-edged sword and while depression can cause sexual dysfunction, antidepressants can do the same. Therefore when focusing on sexual rehabilitation it is important to assess the individual’s use of antidepressants; if an individual is on antidepressants, determine whether the drug they are taking is likely to cause sexual side effects and if so, consider switching to a drug with less side effects such as bupropion, duloxetine, mirtazapine, or reboxetine (not available in the United States) rather than an SSRI or a tricyclic antidepressant. Review of all of the potential antidepressants and their impact on sexual function is beyond the scope of this chapter; therefore the clinician is encouraged to review the impact of the specific medications the patient is on and make any clinically appropriate changes in conjunction with the individual’s psychiatrist or prescribing physician.
With the opiate crisis, the use of antiseizure drugs for neuropathic pain has become more common. These drugs may also have sexual side effects. Gabapentin has been shown to cause anorgasmia in both men and women, although a recent randomized placebo-controlled trial showed that gabapentin was beneficial to improve sexual function in vulvodynia; thus its use may be considered in patients with neuropathic pain located in the genital area. Pregabalin has also been shown to cause anorgasmia and severe delayed ejaculation and even priapism; however, there is also a suggestion in the literature about the enhancement of libido with pregabalin in a subject treated with it for anxiety and the abuse of pregabalin for sexual purposes.
Antihypertensives are also commonly used by people in rehabilitation as hypertension is a contributing factor in many disorders such as stroke, cardiac events, and amputation which can result in rehabilitation transfer. Many antihypertensives, including beta blockers such as propranolol and diuretics such as hydrochlorothiazide, can cause sexual dysfunctions. Moreover, this is a problem that can occur in men and women with hypertension.
It is beyond the scope of this chapter to review all of the medications that can cause sexual dysfunction. The sexual health provider is therefore encouraged to research any medications that they may be unfamiliar with when seeing a patient who is on multiple medications and complains of sexual dysfunction. It is also strongly recommended that rather than add new medications, such as PDE5 inhibitors, the prescriber considers whether current medications can be successfully adjusted in dose or in timing in order to promote successful sexual encounters or if the medications can be switched to an alternative without sexual side effects.
More Practice and Back to the Basics
In addition to discussing iatrogenic effects and making suggestions for changes, it is important to use balance in your discussions with patients and remind them that sexuality is not all clinical, rather it is a combination of mental or psychological and physical components. When discussing iatrogenic effects with patients, I also bring up the basics involved with good sexuality: romance, feeling good about yourself, and having a clear mind when you are sexually active. At this time I also review the issue of spectatoring (or watching yourself when you are sexually active and criticizing your technique, wondering about your partner, or why things are or are not working the way you want, so that you miss the enjoyment of the sexual encounter).
This is also a good time to bring up the issue of mindfulness and how it relates to sexual encounters. Mindfulness is the concept of being completely present in this moment, not before and not after and not in another place. Mindfulness is often practiced by stopping what you are doing, closing your eyes, and just focusing on your breathing. This could be done by feeling the breath go in and out of the nostrils or focusing on the breath going in and out of your lungs. The key component of mindfulness is to realize that our minds often wander, and it is important to bring your thoughts back to the object or focus your meditation practice. If one considers the concept of spectatoring, mindfulness is essentially the opposite, so it is not surprising that mindfulness has become a core component of sexual counseling.
One of the benefits of a telerehabilitation practice is the ability to conveniently follow-up with patients. For this reason, I recommend developing a treatment strategy with your patient at the beginning of their visits and indicate the approach you will use. I also believe it is beneficial to briefly revisit patients at intervals of around 4 weeks so that they are able to try out the impacts of medication changes. Still, it is important to do this at a frequency that makes sense to them and their lifestyle.
When treating sexual dysfunction in a woman with a disability, and especially when doing so via telehealth, it is important to ensure that the woman has had an adequate gynecological and medical evaluation and that her risks of other concerns such as HPV, pregnancy, and sexually transmitted diseases are identified. There are limited options to treat female sexual dysfunction; however, the use of a clitoral vacuum suction device and the use of vibratory stimulation was shown to improve orgasmic function in women with SCI and MS. Although the use of sildenafil did not reveal statistically significant benefits in women with SCIs, some women with disabilities do report that its off label use is beneficial. Moreover, although its use is not approved by the US Food and Drug Administration (FDA) and further study is warranted, testosterone has been shown to have beneficial effects in improving orgasmic function for postmenopausal women.
Treatment of sexual dysfunctions by nonspecialists has been facilitated since the introduction of PDE5 inhibitors: sildenafil, tadalafil, vardenafil, and avanafil. They are considered first-line pharmacological treatment in neurogenic ED. To date, there are no studies with high level of evidence assessing the efficacy, side effects, and patient-tailored indications across different active principles, dosages, and formulations (pill vs. oral thin film) in neurogenic ED. In any case, patients should be informed about the duration of action (short- vs. long-acting drugs), possible disadvantages, and how to use the medicine (e.g., avoid food prior to taking sildenafil). Starting with lower dosages (e.g., sildenafil 50 mg or tadalafil 10 mg orally 30 or 60 minutes before sexual intercourse) and increasing progressively in case of nonresponse is prudent. Moreover, PDE5 inhibitors may be administered successfully on a daily basis (e.g., tadalafil 5 mg once daily).
In people with SCI, PDE5 inhibitors improve erectile function, retrograde ejaculation, and satisfaction. Monitoring treatment outcomes with questionnaires validated internationally, for example, the international index of erectile function (IIEF), is recommended. Despite beneficial results, most neuro-urological patients require long-term therapy and have been shown to have low compliance because of side effects, principally headache, flushing, runny nose, vision changes, and stomach upset. In people with high-level SCI and multiple system atrophy, PDE5 inhibitors should be used cautiously because of the risk for significant hypotension. An absolute contraindication is represented by concomitant use of nitrates, which are taken on demand by spinal cord–injured individuals at risk for autonomic dysreflexia (i.e., with lesions at or above T6): the association of nitrates and PDE5 inhibitors may result into life-threatening hypotension episodes. PDE5 inhibitors are largely prescribed by virtue of tolerability and efficacy; however, the afore-mentioned conditions should always be considered by clinicians recommending PDE5 inhibitors.
A significant issue of these medications is with their mechanism of action. By blocking the hydrolysis of the second messenger cGMP in the cavernous tissue and favoring the accumulation of cytosolic calcium, these drugs are associated with increased arterial blood flow, provoking compression of the subtunical venous plexus, leading to penile erection. They are not erection initiators, so PDE5 inhibitors require some residual nerve function and sexual stimulation to be effective. In this context, efficacy is defined as an erection, with rigidity, sufficient for satisfactory intercourse.
An intermediate solution is represented by the intraurethral application of alprostadil, which is safer, but less effective. Since this route of administration is not particularly invasive, especially if patients can catheterize themselves, this approach may be suggested also through televisits, controlling remotely first applications.
Mechanical devices, like vacuum erection devices (VEDs) and penile constriction rings, are associated with significant results; however, these are often considered less cosmetically appealing than other means of improving erections. By using an external penile pump (either manual or battery operated), VED creates vacuum suction within the plastic cylinder placed around the penis, drawing blood into the penis to provoke erection. Simultaneously, a rubber or silicon constrictive ring tightens around the penis to maintain erection; however, it must be removed within 30 minutes to avoid very serious complications such as skin necrosis. Other significant drawbacks include pressure ulcers, petechiae, and bruising, especially in case of absent residual sensitivity at the level of external genitalia. Therefore the authors advocate the use of mechanical devices to treat neurogenic ED only in well-informed individuals, preferably (but not only) with sensitivity preserved partially.
Individuals not responding to oral drugs and/or taking medications interfering with PDE5 inhibitors may benefit from intracavernous injections of alprostadil, papaverine, or phentolamine to treat ED. The authors discourage clinicians from prescribing intracavernous injections through televisits without a first training session in person. Careful dose titration and some precautions are mandatory to limit the risk for significant complications such as priapism, pain, and corpora cavernosa fibrosis. Appropriate training sessions are mandatory to teach the patient and/or the partner to perform intracavernous injections safely and effectively and to monitor for potential complications.
If the previous treatments and combinations of treatments fail, patients may ultimately desire a penile prosthesis. In one study it was reported that most (83.7%) spinal cord injured men with different types of penile prostheses reported they continued to have sexual intercourse after a mean follow-up of 7 years. However, penile prostheses should be considered cautiously and only in serious ED, as they are associated with significant complications, including infection, prosthesis perforation, and mechanical failure.
Recommendations for Research
As with most other areas of telerehabilitation, there are significant needs for research to optimize the use of telerehabilitation techniques for individuals with sexual dysfunction related to disability. Optimal timing and frequency of education and training still warrants examination. For those individuals with diminished hand function or decreased mobility, the use of virtual reality for sexual satisfaction and for remote controlled masturbatory devices remains in its infancy and can be explored. Moreover, the use of sexual surrogates for persons with disabilities remains a controversial, yet unexplored topic.