Sexuality, Intimacy and MS Making the Connections

Transcription

1 MS Connect 2015 October 30 th and 31 st Edmonton Alberta Sexuality, Intimacy and MS Making the Connections Dr. Shaniff Esmail

2 Today s Presentation Defining sexuality Impact of M.S. on sexual functioning Overall impact on the couple traits that predict healthy adjustment Management of Sexual Dysfunction Establishing intimacy Communication exercises Wrap up Questions and answers

3 Sexuality: The whole person including sexual thoughts, experiences, learnings, ideas, values and imaginings Communication (verbal/nonverbal) Beliefs and Values PERSONALITY (PERSONAL CHOICE) BODY IMAGE SEXUALITY SELF IMAGE PHYSICAL EXPRESSION Sexuality mostly a learned phenomena & has physical, emotional and spiritual aspects SOCIALIZATION (RELATIONSHIPS) GENDER (ROLES & ORIENTATION)

4 3 R s of Sexuality 1. Reproduction 2. Recreation 3. Relationship

5 MS and Sexuality Incidence of Sexual Dysfunction Healthy 12.7% Chronic disease 39.2% Individuals with MS 73.1% Women with MS: 39 72% Men with MS: 64 92% Up to 90% of individuals with MS report changes in their sex lives after the beginning of the symptoms (e.g. Decrease frequency etc). Severe symptoms of MS tend to have more of an impact on sexuality (Orasanu et al., 2013, Szasz et al,1984, Zorzon et al, 1999)

6 Sexual Dysfunction Primary A result of MS changes in the central nervous system that directly impair sexual feelings and/or response Secondary A result of MS related physical changes that indirectly affect sexual feelings and/or response Tertiary Refers to psychological, social and cultural issues that interfere with sexual feelings and/or response (Foley, 2001)

7 MS Impact On Sexual Function Females Hypoactive sexual desire decreased libido: 31 74% Painful intercourse: 31 72% Decreased lubrication: 36 48% Orgasmic dysfunction (freq and intensity): 37 45% Decreased or altered genital sensation: 27 47% Difficulty moving body, pain, burning sensation, bowel dysfunction, memory impairments: 29 33% Psychosocial issues: Body Image, Lack of confidence, fear of rejection, concerns about satisfying partner sexually: 25 30% (Cordeau & Courtois, 2014 Foley et al., 2001; Sanders et al., 2000, Smeltzer & Kelley, 1997)

8 MS Impact On Sexual Function Males 92% of male MS patients reported some form of sexual dysfunction Erectile dysfunction: 50 75% Ejaculatory dysfunction: 50% Decreased sexual interest/libido: 39% Muscle weakness: 58% Pain, impaired genital sensation: 70% Psychological Issues, Loss, Body Image etc. Non sexual physical changes may affect sexual response such as fatigue, spasticity, bowel and bladder function, pain, and incoordination producing general impairment in mobility and function up to 75% (Calabro et al., 2014; Foley et al., 2001; Sanders et al., 2000)

9 Impact of Disability/illness on Couples Sexuality - an overview: Impact on overall quality of life and well being Sex reported to be one of the most serious problems in marriages where one of the partners had a disability Change in sexual activity patterns (Freq, Interest, Satisfaction) Disability has also been shown to increase stress and affect the roles and personal boundaries experienced by couples Impact on marriage and divorce rates (Esmail, et al 2007, 2010)

10 IMPACT OF MS ON COUPLES SEXUAL RELATIONSHIPS The purpose of the study was to understand the lived experience of couples in terms of their sexuality where one partner has a disability (MS). Specifically; the research focused on understanding: Each partner s perceptions of the impact of MS on their sexual relationship. What gives each partner meaning in their sexual relationship. What partners consider to be important disability related factors impacting their sexual relationship. The coping strategies each partner is using and how these have changed since the onset of MS. (Esmail 2007; Esmail, 2010)

11 Findings: Summary of Results of The Study The following is a summary of some of the initial results of the study. The analysis was done for four separate groups: Group #1 Females with M.S. Group #2 Male partners Group #3 Males with MS Group #4 Female Partners

12 Group #1 Women with MS Results The women with MS lived a life of uncertainty and contradictions Raised doubts regarding their worthiness, attractiveness and identity Sex out of fear Acceptance and defiance Outward behavior did not reflect their inner state

13 Group #2 Male Partners Results Responded with pragmatism MS was seen as an inconvenience More frustrated with partners irrational behavior Felt their wives made mountains out of molehills. Most did not feel the MS had much of an impact on their sexual relationship

14 Group #3 Males with MS Results The MS forced the men to learn to communicate more and be more sensitive toward their relationship. Men didn t want to be perceived as weak. Sex to fulfill their partners need (a way to express love) Men felt their partners were instrumental in maintaining and enhancing the relationship. Men avoided all forms of physical contact as they felt intimate contact should lead to sexual contact which they felt they can not fully fulfill.

15 Group #4 Female Partners Results Female reported communication actually improved post diagnosis (men started to listen and talk). All forms of sexual intimacy decreased. They experienced guilt (needed to be the superwoman ). Sacrifice a coping strategy

16 Females with M.S. their lived experiences compared to their partners perceptions Women with MS Overcompensation Taking on the burden Buffering their partner Men Don t perceive much of an impact Are confused at why their wives act so irrationally What s the big deal

17 Male with M.S. their lived experience compared to their partners perceptions Men with MS o Learned to communicate o Started to devalue sex sex is not that important o Increased dependence on their partners partner more in control of the relationship Women o Taking on responsibility of the relationship o More active in all aspects of the relationship o Sacrifice!!!!! Its their burden

18 So What Does This Mean? Women with MS or women who have partners with MS are more likely to take on the burden and martyr role. Men with MS or men who have partners with MS are more likely to be shielded for the true impact of the disease. Although communication was identified as very important for all groups it was filtered.

19 Management of Sexual Dysfunction Men Medication (Viagra, Levitra, Cialis) Testosterone Prostaglandins injection Vacuum erection device Sexual aids: vibrators, silicone rings Surgery penile prosthesis Education and counselling (various aspect from Techniques to Toys)

20 Management of Sexual Dysfunction Women Water soluble Lubricant Vibrators Self or Partner Kegel Exercises(pelvic tilts) Body mapping(find other erogenous zones) Intimacy and Communication Medication Education and counselling (various aspect from Techniques to Toys)

21 Drugs that Effect Sexual Activity Type of Drugs Diuretics Anti-hypertensives Antihistamines Corticosteroids Insulin diabetes Tranquillisers/sedatives Antidepressants Drug Side Effect(s) Decreased libido Inhibited orgasm Erectile dysfunction Vaginal dryness Erectile dysfunction Erectile dysfunction Impaired ejaculatory control Various sexual dysfunction Note: Erectile dysfunction maybe present in both males and females

22 Coping with Loss of Libido Sensual and Sexual Pleasure can be Achieved without Desire! Avoidance causes Lack of Intimacy Learn how to talk Intimately, maybe at first it has to be in the dark Deal with Losses and Grief Start Over Have Dates, explore one another like a new couple Be a New Couple

23 Body Mapping Exercise Safe/comfortable setting/temperature Remove clothing Begin by touching top of head and systematically moving down body Vary pressure, speed, rhythm, pattern Note areas of pleasure, sensory change Alter touch to maximize pleasure Do not attempt orgasm Communicate with and instruct your partner (Foley, 2001)

24 Treatment of Secondary Problems Spasticity: Muscle Relaxants timing Pain: Carbamazepine (Tegretol) Gabapentin (Neurontin) Frozen Peas Bladder Management: Meds, Catheterization, Fluid management, Condom catheters Fatigue: Meds, Exercise, Planning Weakness: Alternate positions (spoon), pillows

25 Coping with Catheters Ask Healthcare Provider Tape catheter to abdomen to prevent pulling Use night bag with longer tubing Empty bag and tape connections to prevent leaking. Men condom over catheter Alter positions (spoon position) Catheter can be removed and reinserted if partner is instructed (don t leave out) Communicate, be prepared

26 Caregiver vs Lover If partner provides care it is sometimes difficult to switch from caregiver to lover Women more likely to take on care giver role even if resources are available Have homecare provide the services more often and just before a planned hour of intimacy

27 Coping with Tertiary Sexual Dysfunction Talk about feelings related to role reversal, about losses, about values related to sexuality Body mapping to improve self image Attend a couples workshop to enhance your relationship Learn how to talk about sex, keep the accusations out of intimate times

28 Coping with Tertiary Sexual Dysfunction cont. Dealing with stress(anxiety) Couples Counselling, psychologist, OT, clergy, etc. To help understand one another and improve communication Individual counselling, self image, losses Anger Are you stuck? Medication: sometimes a mild tranquilzer will help anxiety

29 Communicating about Sex Not as easy as other subjects WHY?

30 Common issues people may want to or need to discuss? Frequency of sexual activity Type of sexual activity intro new practices Use of fantasy Desire for more intimacy Role expectations (Barrett, 1999)

31 How to Improve Communication? 1. Start by speaking for yourself Statements 2. Describe what's happening to you 3. What are your Thoughts, beliefs and interpretation 4. What are you feeling 5. What do you want 6. What are you going to do I

32 HUMOR A KEY TO COMMUNICATION AND RELATIONSHIP Humor allows you to laugh about things e.g. accident while having sex hit the G spot

33 Topics for Discussion: 1. My favorite part of your body is What I enjoy most about our sex life is A position I find comfortable when we make love is I am most aroused when I am most embarrassed when My favorite time to have sex is I m uncomfortable when 8. When you touch me (specific place), I 9. I d like to try (Hahn, 1989)

34 Understanding Sexual Function 1 st step in making a change is to understand what is happening 2 nd step is to make changes in line with limitations placed by the MS Attitude Change key to redefining what is important in your relationship

35 Straight Talk Intimacy & Sexuality Goal is understanding one another: what each of you wants in an intimate sexual relationship Goal of intimacy is not always intercourse Things have changed accept and move forward

36 Straight Talk Intimacy & Sexuality GOAL SHOULD NOT BE TO RECREATE OLD PASSION AND INTIMACY GOAL SHOULD BE TO CREATE NEW EXPERIENCES

37 Combining findings with literature: Some common suggestions regarding intervention / strategies which may be effective in helping couples include: 1. Mutual Responsibility 2. Education and Information 3. Communication Between Partners 4. Attitude and Behaviour Changes 5. Techniques and Toys (aids, prosthesis and resources)

38 Summary Management Approaches Information & education** Remove communication barriers Acceptance facilitate attitude change to help the adopt different perspective re: sexuality Reassure remove anxiety Performance Medication management Improve coping skills Techniques alternative positions Assistive devices lubricant, vibrators, pumps etc. Provide sex therapy behavior change (Monga & Kerrigan, 1997)

39 Conclusion: As you can see when MS strikes it needs to be addressed The key thing is share your feelings, fears and insecurities. Keep the communication open. Sexuality is important to help maintain the bond in the relationship. Sexuality can be redefined to whatever you want and will make you both happy.

40 References Barrett, M. (1999). Sexuality and Multiple Sclerosis. Toronto, ON: Multiple Sclerosis Society of Canada. Calabrò, R.S., De Luca, R., Conti Nibali, V., Reitano, S., Leo, A., Bramanti, P. (2014). Sexual dysfunction in male patients with multiple sclerosis: A need for counseling. International Journal of Neuroscience, 124 (8), pp Cordeau, D., Courtois, F. (2014). Sexual disorders in women with MS: Assessment and management. Annals of Physical and Rehabilitation Medicine, 57 (5), Esmail, S., Huang J., Lee, I., Maruska, T. (2010). Couple s experiences when men are diagnosed with multiple sclerosis in the context of their sexual relationship. Sexuality and Disability, 28 (1), Esmail, S., Munro B., Gibson, N. (2007). Couple s Experience with Multiple Sclerosis in the Context of Their Sexual Relationship. Sexuality and Disability, 25 (4), Foley, F. W., LaRocca, N. G., Sanders, A. S., & Zemon, V. (2001). Rehabilitation of intimacy and sexual dysfunction in couples with multiple sclerosis. Multiple Sclerosis, 7, Monga, T., & Kerrigan, A. (1997). Cerebral Vascular Accidents. In: Sipski, M. L. & Alexander, C. J. (Eds.), Sexual Function in People with Disability and Chronic Illness: A health professional s guide. Gaithersburg, Maryland: Aspen Publishers, p Orasanu, B., Frasure, H., Wyman, A., Mahajan, S.T. (2013). Sexual dysfunction in patients with multiple sclerosis. Multiple Sclerosis and Related Disorders, 2 (2), Sanders, A. S., Foley, F. W., LaRocca, N. G., & Zemon, V. (2000). The multiple sclerosis intimacy and sexuality questionnaire. Sexuality and Disability, 18(1), Smeltzer, S. C., & Kelley, C. L. (1997). Multiple Sclerosis. In M. L. Sipski & C. J. Alexander (Ed.), Sexual function in people with disability and chronic illness (pp ). Gaithersbury, MD: Aspen. Szaz, G., Paty, D., Lawton Speet, S., et al. (1984). A Sexual function scale in multiple sclerosis patients: psychological issues. Sex Disability, 14, Zorzon, M., Zivadinov, R Bosco, A., Bragadin, L. M., Moretti, R., Bonfigli, L., Cazzato, G. (1999). Sexual dysfunction in multiple sclerosis: a case control study. 1. Frequency and comparison of groups. Multiple Sclerosis, 5,