1. Sex, Intimacy and Physical Disability Presentation by : Susan Sliedrecht Counsellor Auckland Spinal Rehabilitation Unit

2. 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

3. 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.

4. Patient driven healthcare Relieves stress Good cardio workout Reduces Pain Strengthens Pelvic Floor Muscles Helps You Sleep Better Boosts Your Immune System Helps with mild depression

5. Altered sexual desire and choices Stop being sexually active (give up on sex)

7. 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

8. Larry “When they (medical staff) say nothing, you think oh my gosh, all is lost!”

9. 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.

10. What we don’t say also conveys an important message!!!!

11. Barriers to implementation 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

12. 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).

13. Sexuality Ethical Your beliefs about what is acceptable / not acceptable eg oral sex, masturbation, sexual toys / devices Cultural Family (whanau) values, societies values, friends Biological Physiological cycles and changes, hormonal levels, physical ability, pain, tiredness, spasms, physical sensation Psychological Past experiences (both positive and negative), how we see ourselves, our emotions

14. Model of Practice P-Li-SS-IT P - permission Li - limited knowledge SS - specific suggestions IT - intensive therapy

15. 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.

16. 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)

17. If you ask you need some knowledge to respond Spinal Cord Injury

18. 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.

19. 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

20. 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

21. 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

22. Potential Problems/Possible Solutions Bladder -don’t let it be a distraction, empty it, remove it Bowel -reliable routine empty if possible Lubrication -water based lubricant

23. Positioning -experiment -use pillows, bolster -specific positions Arousal/pleasure - experimentation - focus above lesion - vary sensory input

24. 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)

25. 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.

26. Fertility Males Fertility markedly reduced Ejaculation – may be affected Reduced semen quality Reduced sperm quality

27. Semen Retrieval Procedures/Techniques It only takes one!

29. Name: Sexuality and Reproductive Health in Adults with Spinal Cord Injury Description: A Clinical Practice Guideline Price: (free download) http://www.pva.org/site/c.ajIRK 9NJLcJ2E/b.6305817/k.EB27/R esearch__Education.htm

30. 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)

31. Intimacy after a stroke pamphlet http://www.stroke.org.nz/resources/Sexuality-Booklet.pdf http://www.stroke.org.nz/resources/Sexuality-Booklet.pdf 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

32. Muscular Sclerosis 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

33. 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

34. Resources Muscular sclerosis – patient handout http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know- about-ms/symptoms/sexual-dysfunction/index.aspxhttp://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know- about-ms/symptoms/sexual-dysfunction/index.aspx Parkinson's Disease - websites http://parkinsons.about.com/od/signsandsymptomsofpd/a/sex.htm http://parkinsons.about.com/od/livingwithpd/a/cope_sex.htm Muscular Dystrophy – could not find a good resource

35. Cancer Cancer and the treatments offered can affect physical, endocrine, neurogenic and vascular functioning. Psychological impact Cancer fatigue

36. 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

37. 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

38. 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 http://www.cancernz.org.nz/assets/files/inf o/Information%20Sheets/Info%20Sheets% 202011/_IS_sexuality2011_.pdf

39. 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.

40. Model of Practice P-Li-SS-IT P - permission Li - limited knowledge SS - specific suggestions IT - intensive therapy

41. In conclusion The hope is that.........

44. What do we offer? Generic Goal Group education session (partners included) DVDs and written material Discussion with doctor Catch up with a person from sex and intimacy group Outpatient follow up Evening Workshops (consumers and their partners) Workshops for health professionals and caregivers Annual staff training www.sexsci.me

45. 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.