1.1

Sexual dysfunctions (SD) diagnosis of sexual dysfunction in women with multiple sclerosis (MS)

Sexual dysfunctions in MS have been categorized as related to primary, secondary and tertiary consequences of the disease . Primary consequences refer to the direct result of MS neurological changes on sexual function. They include impaired genital sensation, decreased sexual desire, decreased vaginal lubrication, and orgasmic dysfunctions. Secondary consequences correspond to MS-related physical changes that indirectly affect sexual response. They include fatigue, muscle tightness or weakness, spasticity, bladder and bowel dysfunction, incoordination or reduced mobility, pain, and side effects of medications. Tertiary consequences refer to psychological, emotional, social and cultural aspects, which indirectly affect the experience and perception of sexuality. They include changes in body image, feeling of anger and of being less sexually attractive, diminished less confidence, worries about sexually satisfying the partner, difficulty communicating with the partner, guilt, feelings of dependency, and depression .

1.2

Prevalence of sexual dysfunction in women with multiple sclerosis (MS)

Sexual dysfunctions are highly prevalent in women with MS and have been reported as severely affecting quality of life . Studies reveal that 34 to 85% of women with MS report at least one sexual dysfunction . Other studies report the presence of one or more symptoms of sexual dysfunctions in up to 84.6% women with MS , and the presence of five or more sexual dysfunctions in 34.8% of MS women and 10 or more sexual dysfunctions in 12.9% of MS women .

In terms of dysfunctions, hypoactive sexual desire is reported in 31.4 to 74.4% women with MS , decreased lubrication in 35.7 to 48.4% women with MS , while orgasmic dysfunction is reported in 37 to 44.9% women with MS .

Dyspareunia is also reported in 31 to 72% women with MS , and other complaints related to the direct or indirect consequences of MS on sexual function are also described. Tzortzis et al. report that 34.9% of newly diagnosed women with MS report primary complaints of MS on sexual dysfunction while Çelik et al. describe these complaints in 43% women with MS and Merghati-Khoei et al. in 87.1% of women with MS. These primary complaints include lack of sexual interest, diminished or delayed orgasm, and inadequate lubrication. Decrease in genital sensation is also reported in 26.9 to 47.3% of women with MS .

Other studies reveal that 29.1% to 32.5% have secondary complaints including difficulty moving their body, pain, burning sensations, bowel dysfunction, and memory impairments, and that 24.8% to 29.5% of women with MS have tertiary complaints including lack of confidence, fear of rejection, and concerns about satisfying the partner sexually .

1.3

Assessment tools

Using standard questionnaires to assess sexual dysfunctions in patients with MS helps alleviating the common barriers that are reported by professionals when addressing sexual issues. They offer a structured interview to initiate assessment and provide a framework for diagnosis and treatment . Using questionnaires increase the provision of proper diagnoses in 2% to 42% of women with MS . The use of short form questionnaires is further recommended to help patients with neurological deficits .

As shown in Table 1 , many tools have been used to assess sexual dysfunctions and other related symptoms of MS, including the Multiple Sclerosis Intimacy and Sexuality Questionnaire (MSISQ-19) , the Female Sexual Function Questionnaire (SFQ28) , the Expanded Disability Status Scale (EDSS) for disability , the Patient Determined Disease Steps (PDSS) and the Performance Scale (PS) , as well as the Functional Independence Measure (FIM) . Sexual assessment has also used functional paradigms or personal satisfaction experience using the Sexual Satisfaction Survey (SSS) in particular .

The MSISQ-19 measures three domains of sexual dysfunction in patients with MS as conceptualized by Foley and Iverson . The instrument was re-validated in a shorter form of 15-item questionnaire . The MSISQ-15 however does not distinguish between MS-specific and non-MS-specific sexual dysfunction, and consequently assesses MS-related as well as MS-unrelated sexual problems.

Other tools described in the MS literature include Quantitative Sensory Testing (QST), which assesses genital neurological deficits related to the detection of temperature and vibration . The study found a significant correlation between sensory thresholds (i.e., less sensitivity) and sexual dysfunction, and specifically demonstrated a correlation between diminished clitoral vibration sensation and orgasmic dysfunction in MS women.

Pudendal somatosensory evoked potentials have also been tested by Yang et al. along with sexual questionnaires to assesses the genital deficits associated with subjective reports in women with MS. The most common complaint of orgasmic dysfunction was found to be associated with abnormal or absent pudendal cortical evoked potentials. However, Zivadinov et al. reported that cortical somatosensory evoked potentials could not independently predict the presence of sexual dysfunction in MS patients.

Seçil et al. assessed genital autonomic dysfunction in women with MS patients through sympathetic skin response (SSR). The results failed to show a correlation between genital SSR and sexual dysfunctions, but indicated that higher SSR abnormalities were found in the genital compared to other body regions in women with MS (20% abnormal results in feet, 22.5% in hands, against 50% in genitals).

1.4

Factors affecting sexual function in women with multiple sclerosis (MS)

Sexual dysfunctions in women with MS have been correlated with the level of disability as measured by the EDSS , which have shown that lower scores in EDSS correlate with changes in vaginal lubrication, disturbances in clitoral erection, decrease orgasmic capacity and changes in orgasmic sensations.

Other measures of physical disability, such as the PDDS and the PS and neurological examination (aside from MRI) have also been reported to correlate with sexual dysfunctions in women with MS .

More specific lesions have been correlated with sexual dysfunctions, although with contradictory results . Barak et al. showed that anorgasmia was correlated with brain stem lesions, pyramidal impairments and total lesion area (plaques) in patients with MS cerebral magnetic resonance imagery (MRI). Zivadinov et al. reported a correlation between MRI measures from pons T1-LL and parenchymal atrophy and sexual dysfunctions in five women with MS female. Zorzon et al. however found that pontine atrophy (brain parenchymal fraction), but not pontile T1-LL, correlated with sexual dysfunctions in 44 women with MS.

Among other factors contributing to sexual dysfunctions in women with MS, age was found to be a correlated factor . Contrary to these results, two studies reported that age was not found to be a contributing factor when other measures were controlled for . Tepavcevic et al. reported that age was positively correlated for men but not women with MS.

Age at onset of MS was not found to be a significant predictor of sexual dysfunctions in women with MS . Disease duration, in contrast, correlated with sexual dysfunction in women with MS . More specifically, Mohammadi et al. found that the correlation between MS and sexual dysfunction in women appeared 9 years after MS diagnosis. Çelik et al. on the other hand reported that disease progression only correlated with secondary complaints.

Secondary consequences of MS, in particular bladder and bowel function, spasticity, pain, depression and anxiety, fatigue, and side effects of medication have all been found to contribute to sexual dysfunctions in women with MS.

Bladder dysfunction is repeatedly reported to be correlated with sexual dysfunction in women with MS . Interestingly, Borello-France et al. found that women who were more distressed regarding their urge incontinence reported higher levels of arousal and orgasmic function compared to women reporting less distress over their urge incontinence. For Borello-France , distress regarding urge incontinence is not a significant predictor of anorgasmia, although Giannantoni et al. found that it is correlated with SD in both men and women.

Bowel incontinence has been described in 29% to 51% of patients with MS patients, and constipation in 35% to 54% . Some authors report a correlation between bowel disorders and sexual dysfunction in women with MS but others do not find such relationship .

Spasticity, which is estimated in 40% to 85% of patients with MS patients has been reported to be correlated with sexual dysfunction in women with MS . Pain, estimated in 29% to 86% of MS patients , is similarly reported as being correlated with sexual dysfunction in women with MS . Menstruation, often associated with increased spasticity and pain, has also been found be correlated with sexual dysfunction in women with MS .

Fatigue, estimated to affect 65% to 97% of MS patients , correlates with sexual dysfunction in many studies on women with MS . Demirkiran et al. found that fatigue was more common in women with MS than men (90.9%; 61.6%).

Side effects of medication also impact on sexual functioning . Christopherson et al. report a significant correlation between sexual dysfunction and the use of anti-cholinergic medications, (as opposed to other medications, or the use of alcohol and tobacco), and both Clayton et al. and Gregorian et al. report a significant contribution of antidepressant side effects on female sexual function.

Depression itself is significantly associated with sexual dysfunctions in women with MS and affects more than half of MS patients over the age of 59 years . Anxiety is similarly reported as correlated with sexual dysfunction in women with MS .

Among other consequences of MS, tertiary consequences contribute to sexual adjustment and sexual dysfunction following the MS diagnosis. Studies reveal that marriage duration and number of children correlate with sexual dysfunction in women with MS . Up to 71% of patients with MS and sexual dysfunctions further declare having marital problems . The quality of the couple’s relationship is further correlated with sexual dysfunctions , increased positive support from the partner being reported as significantly improving sexual satisfaction, while negative support decrease satisfaction .

Economic status and education level significantly correlate with sexual dysfunction in women with MS. While cognitive impairment affects up to half of MS patients , Tepavcevic et al. reported that level of cognitive performance inversely correlate with sexual dysfunctions.

1.5

Management of sexual dysfunctions in women with multiple sclerosis (MS)

Because of the complex nature of sexual functioning in women, many authors recommend to treat both the physical and psychosocial aspects of sexual dysfunction in women with MS . Sevène et al. emphasize that sexual dysfunctions are not only linked to MS-related changes, but also to the patient’s psychosocial context.

Despite numerous publications on erectile dysfunction, very little literature is found on the management of sexual dysfunction in women with MS . Studies on sildenafil show that it can be safely used to treat sexual dysfunction in MS patients . DasGupta et al. reported significant improvements on lubrication, but not on the ability to reach orgasm or on the quality of life. Alpha-blockers may further facilitate vascular smooth muscle relaxation, when combined with phosphodiesterase-5 (PDE5) inhibitors, but their effect remains to be demonstrated . Given the limited studies and results, more trials are required to confirm the effectiveness of the PDE5 inhibitors on this particular population of patients .

Symptoms related to vaginal dryness, burning and dyspareunia can be reduced with the use of lubricants and/or estrogen replacement therapy. Topical estrogen has been found to improve clitoral sensitivity and to reduce pain during intercourse . Estrogen combined with methyltestosterone has been suggested to improve libido and vaginal lubrication, but the adverse side effects of testosterone, including its effect on clitoral enlargement, increased facial hair and increased body weight must then be considered.

Overall men and women with MS have used vibrators (19.1%), medications (14.8%) (i.e., mainly PDE5 inhibitors) and sexual counselling (4.1%) to compensate for their sexual dysfunction . Despite the dysfunctions, Mattson et al. report that 45% of women MS experience a high degree of sexual satisfaction. These findings illustrate the complexity of women’s sexuality, and the need to consider the multiple aspects of both sexuality and MS-related symptoms when treating patients with MS.

Bronner et al. and Zemishlany and Weizman further advise against the adverse effects of antidepressant therapy, which can delay or abolish orgasm. Because of the side effects of antidepressant drugs, physicians should consider lowering the dose, or switching to other antidepressants with lower risks of sexual dysfunctions (e.g. bupropion, mirtazapine, nefazodone, reboxetine) or adding a serotoninergic antagonist (e.g., mirtazapine, mianserin) to the drug therapy. In this context of drug combination, Zemishlany and Weizman showed significant improvements in orgasmic function in women with MS when combining PDE5 inhibitors to antidepressants.

Because of the impact of secondary consequences of MS on sexual dysfunction, Çelik et al. recommend that clinicians adopt a sensitive approach assessing symptoms like fatigue, spasticity, incoordination, bladder and bowel dysfunction, pain and burning in non-genital body areas. Because of the physical limitations of MS, as well as pain and fatigue, women with MS may be advised to plan sexual activities ahead, in order to manage adequate timing, positioning, and fatigue. They may use sexual aids, and prevent unwanted urinary and faecal incontinences that may hinder their intimate sexual experience with their partners . Because women in general may be less knowledgeable about their genital anatomy than men, interventions may also include counseling about their anatomy and tips on urinary voiding strategies in the context of intimate sexual activities .

DasGupta and Fowler consider that open discussions among patients and professionals provide practical solutions to compensate for specific difficulties such as positioning due to spasticity, management of catheters, incontinence related anxiety. In terms of fatigue, some authors suggest to engage in sexual activities early in the morning rather than the afternoon or evening . Mazzariol et al. consider that sexual counselling should include learning about extra-genital areas that can be stimulated to provide erotic sensations. Bronner et al. suggest that other sexual options should be proposed to achieve sexual pleasurable and intimacy.

As sexual satisfaction is a subjective experience that is amenable to psychosocial interventions , clinicians should also focus on strengthening the couple’s relationship, increasing couple’s satisfaction and communication skills, in order to positively influence sexual satisfaction . Esmail et al. found that couples reporting stronger communication also had improved appraisals of their sex life. Foley et al. showed that psychotherapy markedly improved communication, marital satisfaction and sexual satisfaction. Christopherson et al. report that women welcome the opportunity to discuss sexual concerns and note that written information allow a framework to initiate discussion with the spouse. Relationship issues may further improve aspects of acceptance, intimacy and security .

Guo et al. generally suggest using the PLISSIT conceptual model, which focuses on permission, limited information, specific suggestions and intensive therapy model to increase sexual adjustment. Interventions with MS women should emphasize the fact that, despite the disability, patients remain sexual being who can love, bond, and share intimate and sexual experiences . The goal of therapy must enhance pleasure and satisfaction, rather than achieving a perfect genital response . Many authors recommend including the partner in the assessment and management process . While well-informed sexual counseling is helpful , Bronner et al. conclude that interventions should involve education, information, and the recognition of the sexual needs of MS women and those of their partners through expression of their difficulties. The more informed the woman about the expected impact of a MS on her sexual function, the greater the chance that she will achieve better sexual adjustment.

1.6

Conclusion

Multiple sclerosis is a complex progressive disease involving primary, secondary, and tertiary consequences affecting sexual function. Women with MS must be provided with early professional support to express their sexual needs, verbalize their sexual concerns, and receive proper information, counselling and treatment to overcome their difficulties. Assessment and discussions should be a continuing process and treatments should be regularly revised to adjust to the neurological condition and sexual deficit.

Disclosure of interest

The authors declare that they have no conflicts of interest concerning this article.

2.1

Diagnostic de dysfonctions sexuelles dans des femmes atteintes de la sclérose en plaques (SEP)

Les dysfonctions sexuelles dans la SEP ont été classées comme conséquences primaires, secondaires et tertiaires de la maladie . Les conséquences primaires sont le résultat direct des changements neurologiques caractérisant la SEP sur la fonction sexuelle. Parmi elles, figurent une diminution de la sensibilité génitale, une diminution de la lubrification vaginale et des troubles de l’orgasme. Les conséquences secondaires correspondent à des changements physiques affectant indirectement la réponse sexuelle. Parmi ces conséquences, figurent la fatigue, la rigidité ou la faiblesse musculaire, des troubles vésico-sphinctériens, l’incoordination ou la réduction de la mobilité, la douleur et les effets secondaires des médicaments. Les conséquences tertiaires ont trait à des aspects psychologiques, émotionnels, sociaux et culturels affectant indirectement l’expérience et la perception de la sexualité. Parmi elles, figurent les altérations de l’image corporelle, un sentiment de colère, la crainte d’avoir perdu de son attrait sexuel, la diminution de la confiance en soi, des inquiétudes à propos des aptitudes à satisfaire sexuellement son partenaire, les difficultés de communication avec celui-ci, la culpabilité, des sentiments de dépendance et la dépression .

2.2

Prévalence des dysfonctions sexuelles chez les femmes atteintes de la sclérose en plaques (SEP)

Les dysfonctions sexuelles fréquemment rencontrées chez les femmes atteintes de SEP ont des effets sévères sur la qualité de vie . Des études démontrent que 34 à 85 % des femmes atteintes de SEP font état d’au moins une dysfonction sexuelle . D’autres études montrent la présence d’un ou plusieurs symptômes de dysfonction sexuelle chez jusqu’à 84,6 % des femmes atteintes de la SEP , voire la présence d’au moins cinq types de dysfonction sexuelle dans 34,8 % et d’au moins dix types dans 12,9 % de cette population .

En termes de dysfonction, une baisse du désir sexuel a été relevée chez 31,4 à 74,4 % des femmes atteintes de la SEP , une diminution de la lubrification dans 35,7 à 48,4 % des cas et une dysfonction orgasmique chez 37 à 44,9 % des patientes concernées .

La dyspareunie a également été notée chez 31 à 72 % des patientes atteintes de la SEP , et d’autres problèmes rapportés concernent les répercussions directes ou indirectes de la SEP sur la fonction sexuelle. Tzortzis et al. ont constaté que chez 34,9 % des femmes qui viennent de recevoir le diagnostic de la SEP, l’une des préoccupations principales est la dysfonction sexuelle, alors que Çelik et al. retrouvent de telles préoccupations chez 43 % des femmes atteintes de la SEP, et Merghati-Khoei et al. les retrouvent dans 87,1 % de cette population. Parmi les plaintes rapportées, figurent l’absence d’intérêt sexuel, l’orgasme diminué ou retardé et l’insuffisance de la lubrification. Une réduction de sensation génitale est également évoquée par 26,9 % à 47,3 % des femmes atteintes de la SEP .

D’autres études démontrent que 29,1 % à 32,5 % des patientes font état de plaintes secondaires dont la difficulté de déplacer le corps, la douleur, des sensations de brûlure, la dysfonction sphinctérienne, et les troubles de la mémoire, et que 24,8 % à 25,9 % des femmes atteintes de la SEP ont également émis des plaintes tertiaires dont le manque de confiance, la peur du rejet, et des doutes à propos de leur capacité de satisfaire leur partenaire sexuel .

2.3

Les instruments d’évaluation

L’utilisation de questionnaires standardisés et structurés pour évaluer le dysfonctionnement sexuel chez des patients atteints de la SEP permet de minimiser les barrières rencontrées par des professionnels de santé qui abordent des questions sexuelles. Les questionnaires marquent le début de l’évaluation du patient et constituent un cadre de diagnostic et de traitement . Leur utilisation augmente le taux de bons diagnostics de 2 % à 42 % chez les femmes atteintes de la SEP . D’autre part, l’emploi du questionnaire abrégé est conseillé pour faciliter la tâche de patients présentant des déficits neurologiques .

De nombreux instruments (voir le Tableau 1 ) sont utilisés pour analyser les dysfonctions sexuelles et les symptômes associés de la SEP : le Multiple Sclerosis Intimacy and Sexuality Questionnaire (MSISQ-19) , le Female Sexual Function Questionnaire (SFQ28) , l’Expanded Disability Status Scale (EDSS) pour le handicap , la Patient Determined Disease Steps (PDSS) et la Performance Scale (PS) , sans oublier la Functional Independence Measure (FIM) . L’évaluation de la fonction sexuelle passe également par des paradigmes fonctionnels ou des estimations du degré de satisfaction personnelle ; on pense notamment au Sexual Satisfaction Survey (SSS) .

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