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Sex, Intimacy and Physical
Disability
Presentation by : Susan Sliedrecht
Counsellor
Auckland Spinal Rehabilitation Unit
Overview of presentation
• Why do we need to address this topic
• Auckland Spinal Unit initiative
• Barriers to implementation – with some
practical suggestions
• Resources that are available
Standard part of patient care
Professor Sandra Cole: sex should be viewed
as just another activity of daily living
(ADL). Sexual health, sexual activity, sexual
desires, body image and self esteem are all
activities of daily living. Sexuality should be
treated in the same way as any other aspect
of health care. It should not be sectioned off
and regarded as being out of bounds for
discussions.
Patient driven healthcare
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Relieves stress
Good cardio workout
Reduces Pain
Strengthens Pelvic Floor Muscles
Helps You Sleep Better
Boosts Your Immune System
Helps with mild depression
Altered sexual desire and choices
• Stop being sexually active (give up on sex)
Altered sexual desire and choices
• Stop being sexually active
give up on sex
• Try aids and medication
treatment option
• Discover different ways of being sexually
intimate
discovery and adaptation
Larry
“When they (medical staff) say nothing, you
think oh my gosh, all is lost!”
Research Particpant
Everything from here down was affected. [Paul
was indicating just below his belly button] My
bowels, my bladder, everything, it does not work
the way it is supposed to. That is why I have to
wear these silly bags, all piped up. [He has a
catheter]
But sexually, no help, absolutely nothing, didn’t
even talk about it, nothing. And to a man that is
very very important.
I always brought it up but no, no-one could be
bothered, …. I give up on them, I just carry on.
What we don’t say also conveys an
important message!!!!
Barriers to implementation
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Lack of knowledge
Lack of time
Not wanting to offend people
Unsure culturally what is appropriate
Perception that it is not my role
This is a private matter
Etc,etc,etc,etcetc
Mc Alonan (1996)
Participants reported feelings ranging from
frustration and disappointment to
embarrassment and intimidation when
encountering health care professionals who
seemed to be either unwilling or unable to
address sexuality. Participants stressed the
need to know what their options were regarding
sexual rehabilitation so they could make timely
and intelligent choices that best suited their
needs” (McAlonan, 1996, p.831).
Ethical
Biological
Physiological cycles
and changes,
hormonal levels,
physical ability,
pain, tiredness,
spasms, physical
sensation
Your beliefs about what is
acceptable / not acceptable eg
oral sex, masturbation,
sexual toys / devices
Cultural
Sexuality
Psychological
Past experiences (both
positive and negative),
how we see ourselves,
our emotions
Family
(whanau)
values,
societies
values, friends
Model of Practice
P-Li-SS-IT
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- permission
Li - limited knowledge
SS - specific suggestions
IT - intensive therapy
Herson, Hart, Gordon, Rintala
(1999)
• look for opportunities
• initiate the discussion
• don’t assume that the lack of asking either
by the patient or his or her partner
indicates lack of interest in sexuality
information.
3 Step Method
• STEP 1: ‘Many of our patients have questions or
concerns about sex and intimacy & how this might be
affected after a stroke [other illness]’ (normalise)
• STEP2: Is this something that you have any concerns
about? Would like more information about? (ask)
• STEP 3: Discuss the options available – what would be a
good next step for you? (offer)
If you ask you need some
knowledge to respond
Spinal Cord Injury
Changes after injury
People with a spinal cord injury may not be
able to express their sexuality in the same
way as they did prior to their injury. For a
woman it may affect her ability to become
sexually aroused in the vaginal area,
which would include vaginal lubrication
and for a man the ability to have a
sustainable erection. Positioning, pain,
lack of sensation and spasms can also be
a factor.
Physiological Arousal
There are two ways that we become
sexually aroused
• Psychogenic – erotic thoughts, fantasies,
or visual, auditory or olfactory (smell)
stimulation
• Reflex – arousal from physical
touching
T12 and above
(Upper Motor Neuron)
Complete Lesions
Reflex erections, vaginal lubrication
Nil psychogenic
Ejaculation unlikely
Conventional orgasm unlikely
Incomplete Lesions
Reflex erections, vaginal lubrication
Possibility of psychogenic
Possibility of ejaculation
Possibility of orgasm
T12 and Below
(Lower Motor Neuron)
Complete Lesions (ASIA A)
Absence of reflex erections and vaginal
lubrication
Potentially psychogenic erections and
lubrication
Possibility of ejaculation and orgasm
Possibly genital sensation intact (belly button to
pocket line)
Incomplete Lesions (ASIA B – D)
As above – but more likely
Potential Problems/Possible
Solutions
Bladder
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don’t let it be a
distraction, empty it,
remove it
Bowel
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reliable routine
empty if possible
Lubrication
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water based
lubricant
Positioning
-experiment
-use pillows, bolster
-specific positions
Arousal/pleasure
- experimentation
- focus above lesion
- vary sensory input
Autonomic Dysreflexia
(T6 and above)
Sexual activity may trigger this.
What is it? This is a condition of sudden high
blood pressure – pounding headache,
blurred vision, profuse sweating.
If this happens, stop sexual activity and sit
up.
(Important information if using erectile
enhancing medications)
Fertility Females
Initially after a spinal injury a female
may experience amenorrhea (no
menstrual cycle).
A females ability to conceive is not
affected by a spinal cord injury.
Fertility Males
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Fertility markedly reduced
Ejaculation – may be affected
Reduced semen quality
Reduced sperm quality
Semen Retrieval
Procedures/Techniques
It only takes one!
Name:
Description:
Price: (free download)
http://www.pva.org/site/c.ajIRK
9NJLcJ2E/b.6305817/k.EB27/R
esearch__Education.htm
Sexuality and
Reproductive Health
in Adults with Spinal
Cord Injury
A Clinical Practice
Guideline
Stroke
• Sexual dysfunction (SD) is common
• Up to 2/3 of patients experience:
– Erectile or lubrication difficulties
– Ejaculation or Orgasm dysfunction
– Difficulties with positioning (universal)
Intimacy after a stroke pamphlet
http://www.stroke.org.nz/resources/Sexuality-Booklet.pdf
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Sexuality and body image
Attitudes and barriers
Fears about resuming sex, fear about partner rejection,
Fear of failure to perform, medications
Timing, hygiene, catheters, paralysis
Sensory and perceptual changes, communication,
Cognitive change, role changes,
Other ways to make love - Self-stimulation, Oral sex,
Vibrators
Muscular Sclerosis
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Vaginal dryness / Difficulty with erections
Loss of libido
Difficulty having orgasms / dry orgasms
Reduced sensation in the genital area
Exaggerated sensitivity
Fatigue
Pain and/or muscle spasms causing sexual
positions to be difficult
Parkinson’s disease
• Medication for Parkinson’s may lower
impulse control and therefore result in
dramatic increase in sexual interest and
activity
• Executive function may be compromised
Resources
Muscular sclerosis – patient handout
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http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-knowabout-ms/symptoms/sexual-dysfunction/index.aspx
Parkinson's Disease - websites
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http://parkinsons.about.com/od/signsandsymptomsofpd/a/sex.htm
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http://parkinsons.about.com/od/livingwithpd/a/cope_sex.htm
• Muscular Dystrophy – could not find a good
resource
Cancer
• Cancer and the treatments offered can
affect physical, endocrine, neurogenic and
vascular functioning.
• Psychological impact
• Cancer fatigue
Treatments may cause:
• Breast cancer – altered sensation, numbness,
loss of sensation and pain, hormonal changes
caused by chemotherapy which results in
decreased
• Prostrate cancer – urinary incontinence,
erectile dysfunction
• Colorectal cancer – for women painful
intercourse and quality of orgasm, for men
erectile and ejaculatory problems
Treatment effects
• Leukemia – depending on treatment may
affect long term fertility, decreased sexual
interest and decreased satisfaction
• Cancer of the bladder – erectile
dysfunction and dry orgasm, reduced
clitoral sensation, painful intercourse
Cancer Resources
• Breaking the Silence A handbook for
Healthcare Providers by Anne Katz
• Intimacy with impotence by Ralph and
Barbara Alterowitz
• Patient handout on sex and cancer
http://www.cancernz.org.nz/assets/files/inf
o/Information%20Sheets/Info%20Sheets%
202011/_IS_sexuality2011_.pdf
In summary
• Sexual function is part of a holistic
approach to healthcare
• No one person or discipline can do this on
their own
• Important to know what you don’t know /
increase your knowledge in key areas
• There are resources available – “not
knowing” open approach is very
acceptable.
Model of Practice
P-Li-SS-IT
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P
- permission
Li - limited knowledge
SS - specific suggestions
IT - intensive therapy
In conclusion
The hope is that.........
What do we offer?
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Generic Goal
Group education session (partners included)
DVDs and written material
Discussion with doctor
Catch up with a person from sex and intimacy group
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Outpatient follow up
Evening Workshops (consumers and their partners)
Workshops for health professionals and caregivers
Annual staff training
www.sexsci.me
Strategies for talking about sex
• Normalise & validate: confirm that the
client is not alone or unusual in their
concerns ‘many people feel this way’, it’s
not uncommon for patients to have these
concerns…’
• Offer to provide the patient with
information, an opportunity for discussion
or to find someone else who can.