1
GATEWAY TO PROGRESSInternational MS Conference
Berlin 20th - 24th September 2003

•   Main Session 24
• Multiple Sclerosis, Partnership
  Sexuality

vaney.claude_at_bernerklinik.ch
Klimt
2
ECTRIMS 2003 Milano606 communications - only 1
on sex !
3
6 points on sexual dysfunction MS

• Very Common in MS (gt 50 )
• Severe impact on all aspects of life
• Should be addressed by health professionals
• Based on unrealistic expectations myths
• Pharmacological treatment sometimes helpful
• Ongoing communication essential for coping

4
Rosalind C.Kalb PhD
in Multiple Sclerosis the question you
have, the answer you need 1996, Demos Vermande,
New York

• Perhaps the most important component in
  preserving or rekindling intimacy and sexuality
  is open communication between partners about
  problems they are experiencing and ways to
  overcome them together

5
Have you noticed any changes in your sex life
because of MS ?

• We made love less often...
  ..tired, neither of us inclined to get
  things started.
• I had difficulty in reaching orgasm..
  ..in spite of kissing and manual
  stimulation.
• I felt apprehensive about bladder accidents...
  ..feard that partner feels turned off.
• I had to work harder to feel good about
  myself... .. because of the mood swings and
  fatigue.

6
sexuality encompasses more than the physical
sexual response !
Capacity to experience sexual excitement orgasm

• Fertility and potential parenthood (M 25)
• Perception of own appearance and attractiveness
• Energy to engage in sexual activity
• Communicate and relate to the partner
• Sense of integration and acceptance in a social
  network (family, friends society)

7
Sex is a fundamental part life and has an impact
all aspects of human functioning
Sex
Spiritual
Physical
Psycho logical
Social
Emotional
8
Alterated aspects of sexual life that may change
self esteem -image

• Will he find me still attractive ?
• Why does it take me so long get turned on ?
• What if it is painful to make love ?
• Will my partner continue to love me ?

Picasso
9
Alterated aspects of sexual life that may change
self esteem -image

• Can I be a good lover ?
• Will my erection last ?
• How can I get people to see me as a sexual person
  and not only one with a disabling disease?

Picasso
10
Prevalence of sexual problems in PwMS

• 1984 Valleroy Kraft (USA)
  56 women und 75 men
• 1999 Zorzon et al. (I)
  73 PwMS, 32 chronic
  illness and only 13 in this Italian healthy
  population.
• 2000 Laumann healthy population (USA)
  43 women and
  31 men
• 1/3 women 1/6 men not interested in sex !

11
Unrealistic expectations and myths that can lead
to perception of sexual failure
(Zilberberg, Men and Sex, 1978)

• Size of penis tightness of vagina determine
  amount of pleasure a couple experiences when
  making love.
• Physical contact must always lead to sexual
  expression.
• Sexual activity should always involve sexual
  intercourse.
• Sex must be natural and spontaneous.
• A man can not be in love and fail to get an
  erection with his partner.
• Handicapped people have no sexual needs or have
  perverted or excessive sexual desires.

12
Other erroneous ideas that can interfere (adapt.
from S.Spence Psychosexual Therapy, 1991 )

• All couples have sex several times per week.
• If sex is no good, something is wrong with the
  relationship.
• A women should always take part in sex if her
  partner makes approaches.
• Respectable women should not masturbate.
• Respectable women do not communicate their sexual
  needs and preferences.

13
sexual response cycle Masters Johnson Human
Sexual Response 1966
brain
erotic stimuli thaughts, visual,
acoustic...
anxiety
psychogenic
-
Th 11- L2
ERECTION / LUBRICATiON

Spinal cord

S2 - S4
Stimulation of erogenous zones glans / clitoris
vagina
reflex
14
Changes in sexuality and intimacy
can be divided in 3 categories (F.Foley)

• primary sexual dysfunction MS lesions
  directly impair sexual feelings response
• secondary sexual dysfunction MS lesions
  which indirectly affect sexual response
• tertiary sexual dysfunction refers to
  the psycho-social and cultural issues that
  interfere with sexual function

15
primary sexual dysfunction MS lesions
directly impair sexual feelings response

• Altered genital sensation
• Decreased intensity / frequency of orgasm
• Decreased vaginal lubrication
• Decreased libido (sexual desire)
• Erectile dysfunction

16
Leonardo da Vinci
17
Cologne men study (8000 men)erectile
dysfunction increases with age
18
Sildenafil (Viagra)inhibits the catabolism of
vasoactive substances

• Sexual stimulation needed
• Latency 30 à 60 minutes
• 25 à 100mg ....no more
• side effects red face, gastro-intestinal upset,
  headache.
• contraindicated if nitrate-based drugs are taken.

Matisse
19
Alternatives to Viagra

• Vaccum device
  (banding of the erect penis)
• Prostaglandine injection or instillation
  (promotes vasodilatation)
  cave priapism..(prolonged erection gt 6h)
• Penile prothesis

20
Aphrodisiaka ?
Botticelli
21
Treatment options for primary sexual
dysfunction in women

• Over the counter water-soluble vaginal
  lubricants K-Y Jelly.
• Mechanical vibrators may promote orgasm..

22
TOOLS
SEX
...
23
Treatment options for primary sexual
dysfunction in women

• Over the counter water-soluble vaginal
  lubricants K-Y Jelly.
• Mechanical vibrators may promote orgasm..
• Kegels exercise 10 x in a row (contraction of
  pubococcygeus muscle ) to strengthen the muscles
  around vagina

24
Sexual Problems in MS -physiotherapists point of
view

• Annaleena Viramo-Koskela Ritva Rahkonen
• Masku Rehabilitation Centre SF W19

25
Loss of libido ?

• Periods of boredom and fiasco alternating with
  periods of ecstatic peaks are normal.
• Possibility to enjoy non-erotic touch
  (handholding,hugging, stroking of non genital
  body zones).. Change of emphasis
• More tenderness and gentleness
• Reassurance that you are loved and needed

26
secondary sexual dysfunction MS lesions
which indirectly affect sexual response

• spasticity and muscle cramps
• bladder -and bowel problems
• fatigue and pain
• muscle weakness
• body and hand tremor
• attention and concentration problems
• non-genital sensory changes

27
Body mapping
...involves the systematic exploration of
locations of pleasant, erotic, decreased or
uncomfortable sensations. ...sometimes
stimulating the edges of body zones that are
experiencing numbness can feel erotically
pleasing !
28
tertiary sexual dysfunction
refers to the psycho-social and cultural issues
that interfere with sexual function

• disabled ? sexually attractive
• demoralisation and depression
• anxiety
• loss of self-esteem
• mood swings
• role change ( caregiver ? lover )

29
Physical disability never exclusively experienced
by the individual

• The able-bodied partner may experience
  Anger,fear,helplessness,worry, sadness...
• Social context dictates the partner should
  understand and care for the disabled..( strain)
• Partner drawn into role of caregiver making it
  difficult for the PwMS to respond sexually
  towards a person he has motherly feelings.
• If nursing holds couple restoring erection can
  shatter equilibrium.

30
Communication seems to be a difficult issue
particularly for men...

• Women go to bed
  with men so that they can talk to them,
• and men talk to women
  so that they can go to bed with them...

31
How to talk about sex

• Use books, videos, magazines
• Do not accuse use I feel - language instead
  of you dont-language.
• A rejected sexual request does not mean that you
  as a person is being rejected.
• Do not expect your partner to do anything unless
  you explicitly asked him.
• Do not expect perfection.

32
Disability may have a positive impact on a
couples life..
(Kreuter, Paraplegia 1994)

• If circumstances hadnt forced us to develop
  our sexual relationship,we might never have
  discovered the depth and variety of feelings and
  experiences that are now part of our entire
  life, not only just our sex life

Chagall
33
Many thanks for your attention
Klimt