Abstract
BACKGROUND:
Multiple sclerosis (MS) is an autoimmune condition affecting young women and men, resulting in varied disabilities, including sexual dysfunction.
OBJECTIVE:
This narrative review aims to describe the prevalence, pathophysiology, and impact of sexual dysfunction in people with MS (PwMS); provide a review of current assessment and treatment strategies; and offer considerations for future care.
METHODS:
Literature review was performed to identify primary and secondary sources discussing sexual dysfunction in PwMS.
RESULTS:
Sexual dysfunction is common in PwMS and can occur throughout the disease course. Sexual dysfunction is associated with depression, reduced quality of life, and may have broader implications related to relationships, fertility, pregnancy, and parenting. The etiology is often multifactorial and can be classified as primary, secondary, or tertiary dysfunction. Sexual dysfunction in PwMS is underdiagnosed and undertreated; however, many healthcare providers may already have the skills required to care for PwMS with sexual dysfunction.
CONCLUSIONS:
Additional education for providers regarding the approach to assessment and management of sexual dysfunction, their potential role in treatment, and available specialized resources is needed. The role of interdisciplinary care with collaboration among providers should be considered. Further research should evaluate the impact of specific assessment tools and treatments on sexual dysfunction in PwMS.
Keywords
Introduction
Multiple sclerosis (MS) is an autoimmune condition affecting myelin in the central nervous system. Overall, approximately 85% of people with MS (PwMS) have relapsing remitting MS (RRMS), with periods of clinical worsening, with or without residual deficits, followed by periods of stability. An additional 10% have primary progressive MS, which has a gradual worsening of symptoms over time with some fluctuations and plateaus, and <5% have a secondary progressive form of the disease, which initially follows a RRMS pattern and then has progressive worsening of symptoms (Lublin & Reingold, 1996; Signore, Spong, Krotoski, Shinowara, & Blackwell, 2011).
MS is the leading cause of neurologic disability in young men and women (Adamec & Habek, 2013; Edmonds et al., 2010). The mean age of onset is 25–30 years and there are about 2.3 million people with MS worldwide (Browne et al., 2014; Iglesias, Sola, Ruiz, & Anguiano, 2015; Sveinbjornsdottir, Magnusson, & Benedikz, 2014). There are approximately 2-3 females to every 1 male with the disease and about two thirds of PwMS are women of childbearing age (Dilokthornsakul et al., 2016; Olek, 2005; Signore et al., 2011; Sveinbjornsdottir et al., 2014; Svenningsson, Salzer, Vågberg, Sundström, & Svenningsson, 2015).
Sexual dysfunction is defined by the World Health Organization to include any way in which a person is not able to participate as desired in a sexual relationship (World Health Organization, 2016). It therefore includes biological, psychosocial, and interpersonal problems such as loss of sexual desire, sexual aversion, lack of enjoyment, erectile dysfunction (ED) or lack of lubrication, orgasmic dysfunction, premature ejaculation, vaginismus, dyspareunia or pelvic pain, substance- or medication-induced dysfunction, post-orgasmic illness, persistent genital arousal, and hypersexuality (Basson et al., 2000; Dupont, 1995; Marck et al., 2016; McCabe et al.,2016).
In this narrative review, we aim to describe the prevalence and pathophysiology of sexual dysfunction in PwMS, including defining and discussing primary, secondary, and tertiary forms of sexual dysfunction. We also review broader implications of sexual dysfunction for PwMS, including effects on mood, quality of life (QOL), fertility, and pregnancy. We discuss current assessment and treatment strategies and offer considerations for future care and research.
Prevalence of sexual dysfunction in multiple sclerosis
Approximately 33–75% of females and 47–75% of males with MS have sexual dysfunction (Marck et al., 2016). There does not appear to be a difference in rates of sexual dysfunction based on form of MS (Lew-Starowicz & Rola, 2014a). Sexual dysfunction may present at any point during the disease course, with about 10–35% of women with MS reporting sexual symptoms at the time of diagnosis (Tzortzis et al., 2008; Zorzon et al., 1999). In a study by Lew-Starowicz and Rola (2013), 40% of women stated their sexual life had worsened after their diagnosis of MS. Other studies have found that 20–45% of PwMS report being less sexually active than they would be otherwise (Darija et al., 2015; Minderhoud, Leemhuis, Kremer, Laban, & Smits, 1984; Szasz, Paty, Lawton-Speert, & Eisen, 1984).
Pathophysiology of sexual dysfunction in multiple sclerosis
Sexual dysfunction in PwMS can occur through direct and indirect mechanisms. Primary sexual dysfunction is a result of neurologic damage to the brain or spinal cord and can result in reduced lubrication, ED, or ejaculatory dysfunction. Secondary sexual dysfunction is a result of other MS related problems such as neurogenic bladder or spasticity. Finally, tertiary sexual dysfunction occurs secondary to larger psychosocial effects, such as low self-esteem, poor body image or societal perceptions of MS (Foley & Werner, 2000; Marck et al., 2016).
Primary sexual dysfunction
Women with MS report reduced libido (70–85% ), delayed orgasm (76% ), difficulty in achieving orgasm (up to 70% ), less pleasurable orgasm (66% ), reduced lubrication (35–61% ), anorgasmia (35–40% ) and impaired genital sensation (25–35% ) (Borello-France et al., 2004; Demirkiran, Sarica, Uguz, Yerdelen, & Aslan, 2006; Merghati-Khoei, Waderi, Amini, & Korte, 2013; McCabe, 2002; Scheepe, Alamyar, Pastoor, Hintzen, & Blok, 2017; Zorzon et al., 1999). Orgasm dysfunction has been associated with lesions in the brainstem and in areas that correspond with autonomic pathways and visual association (Barak et al., 1996; Winder et al., 2015; Zivadinov et al., 2003). Impaired sensation in the trunk and genitals has been found to be associated with reduced orgasmic quality (Hulter & Lundberg, 1995).
For men with MS, erectile dysfunction is common (50–85% ) (Betts, Jones, Fowler, C. G., & Fowler, C.J., 1994; Foley, LaRocca, Sanders, & Zemov, 2001; Zorzon et al., 1999). About 50% of men with MS describe ejaculatory dysfunction and reduced libido has also been reported (Betts et al., 1994; Darija et al., 2015; Prévinaire, Lecourt, Soler, & Denys, 2014; Redelman, 2009; Tepavcevic et al., 2008; Zorzon et al., 1999). Demyelinating lesions in the sacral spinal cord can impair reflexogenic erections and lesions in the pons may affect psychogenic erections (Betts et al., 1994; Zivadinov et al., 2003). Brainstem lesions have been associated with reduced orgasmic function and overall sexual satisfaction in men with MS (Lew-Starowicz & Rola, 2014a).
Secondary sexual dysfunction
Women and men with MS can experience secondary sexual dysfunction related to symptoms associated with MS or its treatment. Neurogenic bowel and bladder, poor cognitive functioning, and fatigue have been found to be associated with sexual dysfunction in women with MS (Cordeau & Courtois, 2014; Fraser, Mahoney, & McGurl, 2008; Gagliardi, 2003; Koch, Kralik, & Eastwood, 2002; McCabe, 2002; Merghati-Khoei et al., 2013). For both women and men with MS, corticospinal and cerebellar dysfunction, resulting in weakness, spasticity, impaired coordination, and slurred speech, can impact patients’ desire to be sexually intimate (Koch et al., 2002; Olek, 2005). Additionally, hormone dysregulation, secondary to inflammation or neurologic lesions in the hypothalamus, may contribute to sexual dysfunction (Guo, He, Zhang, Wu, & Yang, 2012; Michelson et al., 1994; Ysrraelit, Gaitan, Lopez, & Correale, 2008). Finally, medications commonly prescribed for MS-associated symptoms, such as baclofen, gabapentin, amantadine, tri-cyclic antidepressants, and selective serotonin reuptake inhibitors, can have negative sexual effects (Calabrò et al., 2014; Fletcher et al., 2009).
In a study of 132 women with MS in Iran, spasticity was the most commonly reported secondary sexual dysfunction (Merghati-Khoie et al., 2013). In a study of 47 women with advanced MS, pelvic floor weakness (75% ), bowel dysfunction (66% ) and bladder dysfunction (89.4% ) were correlated with reduced lubrication and orgasm (Hulter & Lundberg, 1995). In one study of 32 men with MS, 6% of participants reported pain and spasms resulting in sexual dysfunction. There was also a significant positive association between sexual dysfunction and lower-limb and bladder disability (Fraser et al., 2008).
Tertiary sexual dysfunction
Sexual function in PwMS can be affected by cultural and psychosocial circumstances and mood disorders. Dependence on others for mobility and self-care can result in isolation, a lack of privacy, and reduced sexual expression and activity (McCabe & Taleporos, 2003). Having a disability may be associated with having lower self-esteem and self-image (Gagliardi, 2003; Koch et al., 2002; McCabe & Taleporos, 2003; Schmidt, Hofmann, Niederwieser, Kapfhammer, & Bonelli, 2005). Some studies have demonstrated associations between degree of disability in PwMS, measured by the Expanded Disability Status Scale (EDSS), and sexual function, while others have not (Darija, 2015; Gumus, Akpinar, & Yilmaz, 2014; Hulter & Lundberg, 1995; Nortvedt et al., 2007; Winder et al., 2015; Zivadinov et al., 2003).
Perceptions of one’s relationship status and quality may also affect sexual function in PwMS. In a study of 132 women with MS, many worried about their partner’s sexual satisfaction as a result of their disease (Merghati-Khoei et al., 2013). In a survey and chart review study of 137 women with MS, having a negative perception of their relationship was significantly associated with lower scores in all domains of sexual dysfunction and QOL (Lew-Starowicz & Rola, 2014a). Similarly, in men with MS, having a negative relationship with their partner has been shown to be associated with reduced sexual desire (Lew-Starowicz & Rola, 2014a). In a case-control study of 144 men with MS, there was a positive association between sexual satisfaction and relationship satisfaction (McCabe, 2002).
Finally, sexual dysfunction appears to be more common in PwMS who have a history of depression (Barak et al., 1996; Lew-Starowicz & Rola, 2013; Lew-Starowicz & Rola, 2014a). In a case-control study in Turkey, women with MS and depression had reduced sexual function compared to those with MS but without depression (Gumus et al., 2014). Depression has been shown to have a negative correlation with desire, erectile function, and overall satisfaction with sexual life in men with MS (Lew-Starowicz & Rola, 2014a).
Broader implications of sexual dysfunction for people with multiple sclerosis
Sexual dysfunction has a large impact on the lives of PwMS. Sexual dysfunction in PwMS is associated with reduction in QOL as well as with depressive symptoms (Lew-Starowicz & Rola, 2014a; Nortvedt et al., 2007). It has been shown to have a greater effect on the mental health aspects of health related QOL than severity of physical disability (Schairer et al., 2014).
MS can also impact sexuality more generally, including fertility, pregnancy, and the peripartum period. Women with MS have slightly higher levels of amenorrhea or oligomenorrhea and have fewer children compared to the general population (Grinsted, Heltberg, Hagen, & Djursing, 1989; Falaschi, Martocchia, Proietti, D’Urso, & Antonini, 2001; Roux et al., 2015). Nevertheless, one study found the average time needed to conceive for women both before and after the diagnosis of MS is similar to the general population (Roux et al., 2015). As some treatments have been associated with embryotoxicity and teratogenicity in animal studies and are contraindicated in breastfeeding for concern for excretion in breast milk, women with MS may need to stop their disease modifying therapies prior to conception and while breastfeeding (Lincoln & Oh, 2017b, Lincoln & Oh, 2017c).
Men with MS tend to have lower total sperm count and impaired sperm motility and morphology, potentially related to demyelination and the effect of inflammation on the hypothalamic pituitary gonadal axis. Men with MS also have lower testosterone levels, though it is unclear if this affects spermatogenesis (Safarinejad, 2008).
During pregnancy, many women have improvement or remission of their MS symptoms, though some may worsen, such as bowel and bladder function (Birk et al., 1990). Higher rates of antenatal hospitalizations have been reported in the MS population (Kelly, Nelson, & Chakravarty, 2009). Though women with MS are not expected to have more complications with pregnancy or delivery, they may have reduced ability to deliver independently and require caesarian section at a higher rate (Altintas, Najar, Gozubatik-Celik, & Menku, 2015; Caon, 2005; Kelly et al., 2009; Mueller, Zhang, & Critchlow, 2002; Roux et al., 2015).
Relapse rates in the first 3 months after delivery have been found to be 3 to 18 fold higher than baseline (Birk et al., 1990; Roullet et al., 1993). In the Pregnancy in Multiple Sclerosis (PRIMS) study, which followed 227 European women during pregnancy, Vukusic et al. found that disability continued to progress for the subjects, but did not have any relationship with pregnancy. Similarly, a long-term, prospective study of 125 women with relapsing-remitting MS who were followed over 10 years found that pregnancy did not impact long-term disease prognosis within that time period (Roullet et al., 1993).
Despite sexual dysfunction, many PwMS become parents. In general, parents with physical disabilities report satisfaction with their parenting role, and children of parents with physical disabilities have comparable adjustment to their peers (Rasul & Biering-Sørensen, 2015; Alexander, Hwang, & Sipski, 2002). Nevertheless, parents with MS have reported some challenges specific to their disease, including fatigue, low mood, worry about being a bad parent and guilt about depending on children, as well as trouble communicating with their families and others about fatigue and other symptoms (Boström & Nilsagård, 2016; Pakenham, Tilling, & Cretchley, 2012; White, C., White, M., & Fox, 2009).
Assessment of sexual dysfunction
Despite a growing understanding that sexual dysfunction is a common problem for PwMS and can negatively impact QOL, it remains underdiagnosed and undertreated (Calabrò et al., 2014; Darija et al., 2015; Lew-Starowicz & Gianotten, 2015). In a case-control study of PwMS, only around 7% of PwMS had discussed sexual dysfunction with their healthcare professionals (Zorzon et al., 1999). Commonly cited barriers to addressing sexual dysfunction in this population include lack of education on the topic, feeling that evaluating sexual function is outside the scope of practice, and lack of time (Gott, Galena, Hinchliff, & Elford, 2004; Pauls et al., 2005; Roos, Thakar, Sultan, & Scheer, 2009; Scheepe et al., 2017). Other challenges include the multiple potential etiologies of sexual dysfunction in PwMS, few specific treatment options, and limited resources/referral options for additional care (Bronner, Elran, Golomb, & Korczyn, 2010; Lew-Starowicz & Gianotten, 2015; Ward-Abel & Hall, 2012).
Recognizing a need for improvement, authors have called for an increased focus on sexual function screening, evaluation, and treatment during patient encounters (Bronner et al., 2010; Calabrò & Bramanti, 2014; Gumus et al., 2014). A multidisciplinary approach has been encouraged with attention to both the physical and psychosocial components of sexual dysfunction (Bronner et al., 2010; Calabrò & Bramanti, 2014; Cordeau & Courtois, 2014; Foley, 2015). Many different types of healthcare providers can assess sexual dysfunction in PwMS, including physicians (urologists, gynecologists, neurologists, physiatrists, psychiatrists, and primary care physicians), nurses, psychologists, social workers, physical therapists, occupational therapists, and marriage counselors. Collaboration among providers, as part of an interdisciplinary team, may improve the feasibility of addressing sexual dysfunction in the population.
Assessment and treatment of sexual dysfunction should begin soon after MS is diagnosed and continue over time. For most providers, the interview serves as the primary evaluation tool (Holland & Cavallo, 1993). Questionnaires may also be helpful in organizing an evaluation and promoting discussion of sexual dysfunction in clinical encounters with PwMS (Bronner et al., 2010; Cordeau & Courtois, 2014; Foley, 2015; Vitkova et al., 2014; Ward-Abel & Hall, 2012). Examples include the Multiple Sclerosis Intimacy and Sexuality Questionnaire (MSISQ-19) and the revised MSISQ-15, the Sexual Dysfunction Management and Expectations Assessment in Multiple Sclerosis –Female (SEA-MS-F), the Sexual Satisfaction Survey (SSS), the Arizona Sexual Experience Scale (ASEX), and the International Index of Erectile Function (IIEF) (Table 1.) (Bisseriex et al., 2014, Bronner et al., 2010; Calabrò et al., 2014; Fischer et al., 1999; Foley, 2015; Foley et al., 2013; Sanders, Foley, LaRocca, & Zemon, 2000; McGahuey et al., 2000; Rosen et al., 1997; Rosen et al., 2000; Symonds et al., 2012).
Sexual dysfunction (SD) assessment tools for multiple sclerosis
Sexual dysfunction (SD) assessment tools for multiple sclerosis
aSanders, A. S., Foley, F. W., LaRocca, N. J., & Zemon, V. (2000). The multiple sclerosis intimacy and sexuality questionnaire-19 (MSISQ-19). Sexuality and Disability, 18(1), 3-26. bFoley, F. W., Zemon V., Campagnolo, D., Marrie, R. A., Cutter, G., Tyry, T., …Schairer, L. (2013). The multiple sclerosis intimacy and sexuality questionnaire- re-validation and development of a 15-item version with a large US sample. Multiple Sclerosis Journal, 19(9), 1197-1203. cBisseriex, H., Guinet-Lacoste, A., Chevret-Méasson, M., Costa, P., Sheikh Ismael, S., Rousseau, A., …SEA-MS-F Group. (2014). Sexual Dysfunction Management and Expectations Assessment in Multiple Sclerosis— Female (SEA-MS-F): Creation and validation of a specific questionnaire. Journal of Sexual Medicine, 11(12), 2955–2965. dFischer, J. S., LaRocca, N. G., Miller, D. M., Ritvo, P. G., Andrews, H., & Paty D. (1999). Recent developments in the assessment of quality of life in multiple sclerosis (MS). Multiple Sclerosis Journal, 5(4), 251-259. eMcGahuey, C. A., Gelenberg, A. J., Laukes, C. A., Moreno, F. A., Delgado, P. L., McKnight K. M., & Manber, R. (2000). The Arizona Sexual Experience Scale (ASEX): Reliability and Validity. Journal of Sex and Marital Therapy, 26(1), 25-40. fRosen, R., Brown, C., Heiman, J., Leiblum, S., Meston, C., Shabsigh, R., …D’Agostino, R. (2000). The Female Sexual Function Index (FSFI): A Multidimensional Self-Reported Instrument for the Assessment of Female Sexual Function. Journal of Sex and Marital Therapy, 26, 191-208. gSymonds, T., Abraham, L., Bushmakin, A. G., Williams, K., Martin, M., & Cappelleri, J. C. (2012). Sexual function questionnaire: further refinement and validation. Journal of Sexual Medicine, 9(10), 2609-2616. hRosen, R. C., Riley, A., Wagner, G., Osterloh, I. H., Kirkpatrick, J. & Mishra, A. (1997). The international index of erectile function (IIEF): a multidimensional scale for assessment of erectile dysfunction. Urology, 49(6), 822-830. iRosen, R. C., Cappelleri, J. C., & Gendrano, N. (2002). The international index of erectile function (IIEF): a state-of-the-science review. International Journal of Impotence Research, 14, 226-244.
If issues related to sexual dysfunction are present, the provider should attempt to define the sexual problem, understand its impact, and clarify the patient’s priorities and expectations for treatment (Calabrò et al., 2012). Details regarding pre-morbid sexual function, onset of dysfunction, previous management strategies and their results, and goals for future sexual activity are important (Bronner et al., 2010; Calabrò et al., 2014; Csesko, 1988; Holland & Cavallo, 1993). A thorough past medical history and review of systems can help determine possible primary, secondary, and/or tertiary etiologies of sexual dysfunction. Important factors include the presence of sensory changes, fatigue, pain, spasticity, weakness, bowel and bladder issues, changes in functional status and changes in mood. Finally, engaging the partner of the PwMS may provide additional useful information (Bove et al., 2016; Foley, 2015).
Limited guidance exists regarding the physical exam in PwMS with sexual dysfunction. Szasz (1989) suggests three parts to the examination of people with disabilities and sexual problems: assessment of physical capabilities/functional status as it relates to sexual situations (dressing, transferring etc.), genital examination, and neurologic integrity of the genitalia. Calabrò et al. (2014) recommends performing an evaluation of muscle weakness and tone, sensation/allodynia, genital function, and the presence/absence of sacral reflexes. Examination for signs of any secondary causes of sexual dysfunction, such as atherosclerosis, hyper- or hypothyroidism, vasculopathy, peripheral neuropathy, and hypogonadism is also important.
There are no specific recommendations regarding the role of neurophysiologic testing for PwMS with sexual dysfunction. Concentric needle electromyography (EMG) of the perineal muscles, bulbocavernousus reflex latency measurement, and pudendal somatosensory evoked potentials may be useful in cases where a lesion to the peripheral reflex arc in the lower sacral segment is suspected (Podnar & Vodusek, 2014). Although urodynamic studies are not diagnostic of sexual dysfunction, detrusor over activity with increased maximum cystometric capacity and reduced compliance has been shown to predict moderate to severe ED in men with MS (Fragalá et al., 2015).
Finding an effective treatment for sexual dysfunction in PwMS can be challenging given the wide variety of potential etiologies and limited evidenced-based therapies (Bronner et al., 2010; Ward-Abel & Hall, 2012). Treatment approaches can be conceptualized using the primary, secondary, and tertiary model. This model can also help delineate various providers’ roles in the interdisciplinary treatment of sexual dysfunction (Gruenewald & Haselkorn, 2009).
Primary sexual dysfunction treatment
Urologists, gynecologists, neurologists, physiatrists, primary care physicians, nurses, and sex therapists may all be involved in treating primary sexual dysfunction. To date, disease modifying therapies have not played a specific role in the treatment of sexual dysfunction in PwMS (Calabrò et al., 2014). The effects of corticosteroids on sexual dysfunction in this population have been mixed (Schmidt et al., 2005). In general, the treatment of sexual dysfunction in PwMS is similar to other neurologic populations, though many approaches have not been investigated extensively in MS.
In women with MS who have reduced lubrication, water soluble vaginal lubricants can be helpful (Dewis & Thornton, 1989). In a randomized controlled trial of 30 women with MS, Lúcio, D’Ancona, Lopex, Perissinotto, and Damasceno (2014) found pelvic floor muscle training with or without electromyographic biofeedback and transcutaneous tibial nerve stimulation to improve vaginal lubrication, arousal, and satisfaction. For women with MS and reduced genital sensation, alternatives to intercourse such as the use of a vibrator or oral stimulation may be considered (Holland & Cavallo, 1993; Katz, 2011; Ward-Able & Hall, 2012). Topical estrogen has been shown to reduce pain and improve clitoral sensitivity during intercourse (Dasgupta & Fowler,2002).
Use of phosphodiesterase inhibitors in women with MS have produced mixed results. Dachille, Ludovico, Pagliarulo, and Vestita (2008) found sildenafil to be an effective and safe treatment for sexual dysfunction in women with MS. However, Dasgupta, Wiseman, Kanabar, Fowler, and Mikol (2004) found only limited effects, with improvement in lubrication but no improvement in desire or orgasm.
In men with MS and ED the most effective treatment option may differ depending on the etiology of ED and individual patient characteristics, such as co-morbidities, upper extremity dexterity, and available support. Some men may be able to achieve reflex erections via direct stimulation (Dewis & Thornton, 1989). Other treatment options may include oral medications, injections, or surgical intervention.
In a randomized, double blind, placebo controlled study of 217 men with MS, Fowler et al. (2005) evaluated sildenafil citrate and found it to be well tolerated and effective in treating ED. However, Safarinejad (2009) found sildenafil to have little effect in men with MS. In a Cochrane review, Xiao, Wang, and Luo (2012) concluded that there was limited evidence to support sildenafil citrate as an effective treatment for ED in MS and recommended additional research. More recently, a small pilot study evaluating daily tadalafil in 20 men with MS demonstrated improvement in bladder and erectile function (Francomano et al., 2016).
For both men and women with MS and sexual dysfunction, genital hypersensitivity can be treated with tricyclic antidepressants, anticonvulsants, and topical local anesthetics (Dewis & Thornton, 1989; Holland & Cavallo, 1993). Body mapping or exploration of exact locations of pleasurable or reduced sensation can be a way to improve intimacy in this population and may help with reduced libido (Foley, 2015; Ward-Abel & Hall, 2012).
Secondary sexual dysfunction treatment
Secondary sexual dysfunction in PwMS may be treated by urologists, neurologists, physiatrists, primary care physicians, nurses, physical therapists and occupational therapists. Initially medications should be reviewed for potential sexual side effects. Next, specific symptoms contributing to sexual dysfunction can be addressed.
For women and men with other neurologic conditions, treatment of neurogenic bladder has been effective in improving sexual function (Chen, Sweet, & Shindel, 2013; Projetti, Giannantoni, Sahai, Khan, & Dasgupta, 2012). For individuals who use intermittent catheterization, emptying the bladder prior to sexual activity is recommended. For those with Foley catheters, optimal catheter placement (e.g. taping to the thigh) prior to intercourse can be helpful (Foley, 2015). Alternatively, suprapubic catheters can enhance one’s participation in sexual activity. In a study of 31 female patients with MS and overactive bladder, Giannantoni et al. (2015) found that onabotulinum toxin A injections into the bladder led to improved urinary symptoms as well as improved sexual function, including desire, arousal, lubrication, orgasm and satisfaction.
Improving bowel management may also improve sexual function. Establishing a formal bowel program with a goal of regular, predictable evacuation and prevention of incontinence can be helpful. Potential strategies include diet and fluid modification, oral medications, suppositories, and other techniques such as digital stimulation or manual disimpaction (Gruenewald & Haselkorn, 2009).
Weakness may be amenable to trialing different sexual positions or using equipment such as a foam wedge. Spasticity can also be treated with optimal positioning, stretching prior to engaging in sexual activity, modalities such as ice or heat, or medications such as baclofen, tizanidine, and botulinum toxin injections. For generalized neuropathic pain, Katz (2011) suggests consideration of medications, massage therapy, acupuncture, and biofeedback.
With regard to fatigue, non-pharmacologic approaches may include counseling and education about general energy conservation techniques and optimal positioning for sexual activity. Due to a typical decline in energy in the afternoon and evening, engaging in sexual activity earlier in the day can be advantageous (Zivadinov et al., 2003). Similarly, as women with MS may have exacerbation of their symptoms toward the beginning of a menstrual cycle, education about planning for sexual activity on alternative days may be beneficial (Bronner et al., 2010). A trial of a stimulant medication such as amantadine, modafinil, or methylphenidate can be considered (Calabrò et al., 2014; Foley, 2015).
Tertiary sexual dysfunction treatment
Lifestyle approaches to management of sexual dysfunction, including optimizing diet and physical activity, can be considered for PwMS (Marck et al., 2016). Najafidoulatabad, Mohebbi, and Norryan (2014) demonstrated that yoga may be an effective treatment strategy for improving sexual function and physical activity in women with MS. Similarly, Nejati, Rajezi Esfahani, Rahmani, Afrookhteh, and Hoveida (2016) found improvements in several subscales of QOL, including satisfaction with sexual function, in PwMS after eight two-hour group mindfulness stress reduction and conscious yogasessions.
Sexual counseling and education has been recognized as an important potential treatment for sexual dysfunction in PwMS, though there are limited quality intervention studies (Allen, Landis, & Schramke, 1995; Holland & Cavallo, 1993; Lew-Starowicz & Gianotten, 2015; Ward-Abel & Hall, 2012). The PLISSIT (permission, limited information, specific suggestions, and intensive therapy) model has been suggested as a guide to counseling about sexual dysfunction (Annon, 1974; Dewis & Thornton, 1989; Holland & Cavallo, 1993; Khakbazan et al., 2016; Ward-Abel & Hall, 2012). In this model, first permission is given to discuss sexuality, which can be a helpful treatment in and of itself (Ward-Abel & Hall, 2012). Next, limited information related to sexual function and possible interventions is given to the patient. Christopherson, Moore, Foley, and Warren (2006) found that simply providing educational materials on MS and sexual dysfunction was associated with improved symptoms on follow up. Then specific suggestions are provided based on individual presentation and concerns (including, if relevant, information regarding fertility, pregnancy, parenting, etc.) and if needed, intensive therapy. It has been recognized that the first three steps in this model can be provided by most healthcare providers whereas step four, intensive therapy, typically requires referral to a specialist (Holland & Cavallo, 1993; Katz, 2011).
The BETTER model of SD treatment has also been proposed for this population (Katz, 2011). In this model, the provider “b”rings up the topic of sexual function, “e”xplains that sex is a part of life, “t”ells patients that resources are available, focuses on the “t”iming of the intervention with permission for future conversations, “e”ducates patients on the adverse effects of treatment, and, finally, “r”ecords all assessments and interventions in the medical record (Mick, Hughes & Cohen, 2004).
Couple support for PwMS can be helpful. Blackmore, Hart, Albiani, and Mohr (2011) found that positive partner support was associated with improvements in sexual satisfaction over time for PwMS. In a pilot study, Foley et al. (2001) tested the effect of 12 counseling sessions, communication with the MS medical team, education, and the tailoring of symptomatic treatments to interfere less with sexual function in nine couples affected by MS. This intervention resulted in significant improvements in communication, marital satisfaction, and sexual satisfaction for MS patients and their spouses.
Finally, specifically addressing depression in PwMS may be helpful in treating sexual dysfunction. Cognitive behavioral therapy has been shown to be effective (Hind et al., 2014). If needed, medications with a lower sexual side effect profile (such as bupropion, mirtazapine, nefazodone, reboxetine) can be considered (Bronner et al., 2010; Cordeau & Courtois, 2014).
Future directions
A significant amount of work has been done to identify and classify the presence of sexual dysfunction in PwMS. We recommend an increased focus on improving assessment and treatment. Considering the barriers identified by healthcare providers to addressing sexual dysfunction, we suggest the following approach: Enhanced education about the primary, secondary, and tertiary etiologies of sexual dysfunction in MS. Once providers have a more complete understanding of the causes of sexual dysfunction, they may recognize existing expertise in treating contributing factors. Specific training on how to best evaluate PwMS for sexual dysfunction, incorporating the ongoing development of efficient evidence-based assessment tools. Additional research to identify effective evidence-based treatment options for primary, secondary, and tertiary sexual dysfunction for women and men with MS. An interdisciplinary team with multiple providers, each a “specialist” in a certain aspect of sexual dysfunction, working together to address sexual dysfunction in this population. The key to this approach to care is a coordinated effort with significant collaboration among providers, similar to what has been recommended for the treatment of other symptoms and effects of MS (Gruenewald & Haselkorn, 2009). Improved dissemination of local resources for sexual dysfunction care, allowing for appropriate referrals, if needed.
Limitations
This is not a systematic review of the literature on this topic. Much of the research presented in this paper are in the form of cross-sectional, retrospective, or small, single center studies, without many large, multi-center prospective or controlled studies. Additionally, some of the information presented in this review has been extrapolated from the literature about people with disabilities, in general, though this has been specified throughout the text.
Conclusion
MS is an autoimmune condition typically affecting young women and men. Sexual dysfunction is common in PwMS and can occur at any point throughout the disease course. It is associated with depression, reduced QOL, and also may have broader implications related to fertility, pregnancy and parenting. The etiology is often multifactorial and can be classified as primary, secondary, or tertiary sexual dysfunction. Regular screening, evaluation, and treatment of sexual function in PwMS is important. Many healthcare providers already have the skills required to care for PwMS with sexual dysfunction. Further education about how to best broach the topic with patients, the potential role of various providers in treatment of sexual dysfunction, and availability of specialized resources is needed. The role of interdisciplinary care with collaboration among providers should be considered. Future research should evaluate the use of assessment tools and the impact of specific treatments on sexual dysfunction in PwMS.
Conflict of interest
We have read and understood NeuroRehabilitation’s policy on declaration of interests and declare that we have no competing interests.
