CAN WE TALK Sex, Sexuality and Intimacy in MS

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CAN WE TALK?Sex, Sexuality and Intimacyin MS

• Patricia Kennedy, RN, CNP, MSCN
• Rocky Mountain MS Center
• Englewood, Colorado

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Ill have what shes having!!!!!
When Harry Met Sally
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So why are YOU here?

• You have patients who ask you about sex
• You are afraid that a patient will ask you about
  sex
• You dont know anything about sex
• You thought you might learn something about sex
• You heard there are great pictures

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SEXUALITY

• That quality in each of us
• that is sexual.
• That part of our nature
• with which we interact
• with others either of the
• opposite sex or of the
• same sex
• Our ability to communicate
• with others in a sexual way

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sexuality encompasses the whole person
TOUCH
SEX
INTIMACY
CARING
SEXUAL IDENTITY
BODY IMAGE
Warren, J. PhD.
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SEX

• Physical expression of sexual urge

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SEX AND SEXUALITY

• MS may interfere with the manner in which sexual
  intimacy is expressed
• Regardless of abilities and disabilities, we are
  all sexual beings
• Sexuality is an ever-present multifaceted
  possession of every human being

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INTIMACY

• That which is close or personal
• The ability to share ones most personal nature
  with another
• A feeling of belonging together
• It is both physical and emotional
• It involves feeling and giving
• affection or pleasure

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NORMAL SEXUAL FUNCTION

• Intact nervous system
• Intact genital system
• Hormonal influence
• Intact vascular system

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NORMAL SEXUAL FUNCTION
Sexual response center
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genitals
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NORMAL SEXUAL FUNCTION
Sexual response center
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NORMAL SEXUAL FUNCTION
Sexual response center
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NORMAL SEXUAL FUNCTION
Sexual response center
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Human Sexual Response

• Excitement (arousal)
• Plateau
• Orgasm
• Resolution
• Masters and Johnson

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HUMAN SEXUAL RESPONSE

• Interest
• Response
• Orgasm
• Kaplan

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EMOTIONAL INTIMACY
INTIMACY BASED SEXUAL RESPONSE
EMOTIONAL PHYSICAL SATISFACTION
SEXUAL STIMULI
AROUSAL SEXUAL DESIRE
SEXUAL AROUSAL
Basson, R
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Sexual Dysfunction

• Sexual desire disorders
• persistent or recurrent deficiency (or absence)
  of sexual fantasies or thoughts, and /or desire
  for or receptivity to sexual activity, which
  causes personal distress

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Sexual dysfunction

• Sexual arousal disorders
• Persistent or recurrent inability to attain or
  maintain sufficient sexual excitement, causing
  personal distress, which may be expressed as a
  lack of subjective excitement or genital or other
  somatic responses.

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Sexual dysfunction

• Orgasmic disorder
• The persistent or recurrent difficulty, delay
  in, or absence of attaining orgasm after
  sufficient sexual stimulation and arousal, which
  causes personal distress

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Sexual dysfunction

• Sexual pain disorders
• Dyspareunia pertsistent or recurrent genital
  pain associated with sexual intercourse
• Vaginismus recurrent or persistent involuntary
  spasm of the musculature of the outer third of
  vagina which interferes with vaginal penetration
  and causes personal distress
• Noncoital sexual pain disorders recurrent or
  persistent genital pain induced by noncoital
  sexual stimulation

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SEXUAL DYSFUNCTION

• National Health and Societal Life Survey 1999
• 3500 individuals questioned
• Sexual dysfunction
• 31 males
• 43 females
• Laumann et al

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FREQUENCY OF SEXUAL DYSFUNCTION IN NORMAL COUPLES

• 100 happily married couples
• Sexual dysfunction
• 40 males, 63 females
• Non dysfunctional difficulty
• 50 males, 77 females
• Frank, et al 1978

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DIFFICULTIES

• Partner chooses inconvenient time
• Inability to relax
• Attraction to persons other than mate
• Disinterest
• Attraction to person of same sex
• Different sexual practices or habits
• turned off
• Too little foreplay
• Too little tenderness after intercourse

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SEXUAL DYSFUNCTIONAND MS

• Occurs in 60 or more
• May be intermittent
• May have been premorbid
• May not be related to MS
• May not really be a dysfunction---may be a
  difficulty

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MYTHS OF SEXUAL DYSFUNCTION

• With MS, sex is the least of my problems.
• Disabled people have no sexual needs.
• My doctor doesnt want to hear.
• I shouldnt discuss sex with my doctor.
• Sex should end in orgasm.
• Sex must involve intercourse.
• Physical contact sex.
• We all know sexual information from birth.
• Patients should not masturbate or use fantasy

Frohman, E, 2002
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NORMAL SEXUAL FUNCTION
Sexual response center
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MS SEXUAL DYSFUNCTION

• Primary
• Those problems directly related to neurologic
  damage in Central Nervous System
• Secondary
• Physical problems caused by MS that affect the
  human sexual response cycle
• Tertiary
• Those factors that affect an individual both
  psychologically and socially and interfere with
  human sexual response

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PRIMARY DYSFUNCTION

• Erectile and ejaculatory dysfunction
• Loss of lubrication
• Loss of sensation
• Decreased libido
• Loss of orgasm

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SECONDARY DYSFUNCTION

• Fatigue
• Spasticity
• Weakness
• Tremor
• Cognition
• Bowel and bladder

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SECONDARY DYSFUNCTION

• Medications that may affect function
• Almost all antihypertensives
• Antidepressants
• Tranquilizers
• Narcotics
• Nicotine and alcohol

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TERTIARY DYSFUNCTION

• Depression
• Low self esteem
• Role changes
• Caregiver roles
• Role in family
• Poor communication

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SEX AND INTIMACY

• Sex and no intimacy
• Intimacy and no sex
• Intimacy that is sexual without intercourse
• If MS or choice has limited the ability or desire
  to perform sexual intercourse, people can
  continue to be intimate in their relationships.

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INTIMACY AND GENDER

• Women rate affection and emotional
  communication as more important than orgasm in a
  sexual relationship

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INTIMACY IN MS

• Needs are no different
• Expression sometimes gets lost because of more
  important issues

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INTIMACY DECLINE

• May not have been there to begin with
• Asking for intimacy may be difficult
• Discussing needs (such as intimacy) is difficult
  in some relationships
• Expression of intimacy may send a message other
  than what is intended
• Gender, culture, emotions, physical needs,
  psychological needs frame how we look at intimacy

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• If a relationship is already a strong source of
  social support, it will continue that way and is
  relatively unaffected by sexual dysfunction.
• McCabe et al

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SEXUAL DYSFUNCTION AND QUALITY OF LIFE

• Effect on people living with MS
• No significant correlation between patients age,
  duration of disease or mood
• Effect on partners
• Sexual dysfunction correlated to patient's age,
  duration of disease and impact of illness
• Dupont et al

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If sexual dysfunction occurs

• Reduced sexual activity
• Silence
• Foley et al

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CARE PARTNERS

• Tend not to be asked how they feel about sex and
  intimacy in their relationships
• A whole lotta blaming goes on!
• Should not assume they feel the same as their
  partner with MS

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SO WHAT ARE YOU SUPPOSED TO DO IN YOUR PRACTICE??
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WHY SEX QUESTIONS ARE NOT ASKED

• Unclear what to do with the answers
• Unfamiliarity with treatment approaches
• Uncertainty about the next question
• Fear of offending patient
• Lack of obvious justification
• Generational obstacles
• Sometimes perceived as irrelevant
• Unfamiliarity with some sexual practices
• Lack of time

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COMFORT LEVEL

• Amount of training of professional
• Lack of initiation of topic by professionals
• Lack of time
• Outside of professional role
• Patient discomfort
• Griswold, G. et al
• International Journal of MS Care,
  summer 2003

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PLISSIT Model

• Permission is given for feelings, fantasies or
  certain behaviors
• Limited Information related to the health problem
  is offered
• Specific Suggestions focused on the particular
  patients illness and concerns, and based on
  thorough history taking, are given
• Intensive Therapy requires referral

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How to Initiate

• Include in review of symptoms at every
  appointment
• Normalizes the subject
• Becomes part of regular history
• Over time, reluctance to discuss may diminish
• Your comfort in asking encourages comfort in
  response
• Time constraints may limit discussion but another
  appointment can be made

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WHO SHOULD INITIATE?

• Any professional can
• Physicians
• Often get into medical issues and do not have
  time to deal with QOL issues
• Nurses, Physician Assistants
• Frequently have more time
• Comfort level of patient may be higher

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WHO SHOULD INITIATE?

• Rehabilitation professionals
• Conversations during therapies
• Requests for management of symptoms interfering
  with function
• Mental health professionals
• Other issues (depression, decreased self esteem
  etc) may be a result of or cause sexual problems
  in a relationship

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MSISQ-19

• Fill out prior to appointment
• Opens door to discussion

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MSQLIMS Quality of Life InventorySexual
Satisfaction Questionnaire

• Satisfaction with
• Amount of affection expressed physically in your
  relationship
• Variety of sexual activities you engage in with
  your partner
• Sexual relationship in general
• How satisfied do you think your partner has been
  with your sexual relationship in general

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Summary

• Sexuality is a part of who we are---and who our
  patients are
• Intimacy is a basic need but seldom gets
  discussed
• Sex is an important aspect of sexuality and
  intimacy
• Health care providers are in a position to
  encourage discussion about these topics