This document discusses sexual dysfunction in women with multiple sclerosis (MS). It notes that 50-80% of women with MS experience sexual dysfunction. The document outlines common sexual difficulties women with MS face, such as difficulty orgasming and decreased libido. It discusses factors that can contribute to sexual dysfunction, like MS symptoms, medications, and other health issues. Strategies are provided to help manage various symptoms, like using lubricants for dryness or stimulation devices. The document emphasizes the importance of healthcare practitioners bringing up sexuality with patients and providing information and support.

1. Sexual dysfunction
in women
Lesley Catterall and Denise
Middleton
MS Clinical Specialists
Milton Keynes Community Health Service

2. Learning outcomes
 Feel confident about asking pwMS on their case
load whether they are experiencing sexual
dysfunction
 Identify strategies they can suggest to help
pwMS manage the symptoms of sexual
dysfunction more effectively

3. Hildegarde von Bingen

4. “Women with MS should be asked whether they
experience sexual dysfunction (such as failure of
arousal or lubrication or anorgasmia) and if so,
whether it is of concern” 1

5. “Women with sexual dysfunction should be
assessed for the general and specific factors that
might cause or worsen sexual dysfunction and that
are amenable to treatment” 1

6. Why talk about sex and sexual
dysfunction?
• Studies show that women want to be asked about this aspect
of their lives 2
• Women with MS are interested in their sexuality regardless of
their disability 2
• Sexual dysfunction is one of the most distressing aspects of
MS 3

7. ICF, WHO classification
• Increased confidence and well-being in people
whose sexual needs are met
• When hugged and held regularly people become
less depressed
• People in pain need less medication if they are
having orgasms

8. What are the facts?
• Not everyone with MS will experience sexual
dysfunction
• Can vary on a day to day basis
• Hidden symptom
• Can affect intimacy and relationships
• Correlation with bladder and bowel difficulties 5

9. What are the facts cont.
• Can be caused by the MS itself and other effects
• Fewer medical treatments for women compared
to men
• Sexual dysfunction is experienced in the general
population and may not necessarily be MS
related

10. What are the figures?
• % of individuals is unclear
• 50-80% of women with MS 6
• 40% of women in general population
• 71% of people with MS and sexual dysfunction
also have relationship problems 7
• Higher prevalence of pain, fatigue and
depression 8

11. Female sexual response
9

12. 7

13. Sexual difficulties experienced by
women with MS
• 72% - difficulty or inability to orgasm
• 60% - decreased libido
• 62% - altered genital sensation
• 46% - decreased lubrication
• 17% - painful sex 7 & 10

14. Tertiary
• Body Image
• Low self esteem
• Depression & Anxiety
Primary
Direct effects of disease
process and MS lesions
Other
• Medications
• Life style issues
• Women’s health
issues
Secondary
• Bladder and bowel
• Spasticity
• Fatigue
• Mobility

15. Medication side effects
Anti-
depressants
Anti-
cholinergics
Anti-epileptics
Anti-
hypertensives
Anti-
spasmodics

16. Women’s health issues
Vaginismus
Painful sex
Genitourinary syndrome
of the menopause
(urogenital atrophy)
Neuropathic vulvodynia
11

17. Honest,
open,
sensitive
approach
Conversation
to be
normalised
HCP to
initiate the
discussion
Information
and advice
10

18. How can we help?
12

19. B Bringing up the topic of sexuality
E Explaining to the patient or partner that sexuality is a part of quality of life
T Telling the patient about resources available to them and the team's ability
and willingness to help address concerns and questions.
T Timing the discussion to when the patient prefers, not only when it's
convenient for the health care practitioner
E Educate about side effects
R Record in patient’s notes 13

21. 14

22. 4

23. Some women with
MS find……..
Here is a booklet you may
find useful; I am happy to
discuss anything if you
want to……
In my
experience…
I realise that
this is a very
personal
subject….

24. “When it comes to sex
it’s not about the
destination it’s about the
journey”
Strategies for Women

25. Arousal and libido
• Dispel myths and misconceptions
• Manage expectations
• Encourage patience
• Build on positive experiences
• Embrace new opportunities
• Sensate focus and body mapping
• Testosterone supplementation 15

26. Sexuality and Intimacy
• Couple time – socialising together, dating
• Intimate time – talking, sharing, listening, loving, caring,
supporting each other emotionally and physically
• Sexual time – relaxing, touching as well as non-sexual
touching
• Personal time – erotic touching, thinking, sexual
excitement, activity and satisfaction 16

27. Decreased vaginal lubrication
11 & 17

28. Altered vaginal muscle tone

29. Decreased clitoral engorgement
• Eros therapy device
• clitoral stimulation
• stimulating / warming products

30. Altered sensation
• Stimulating / warming products
• Masturbation
• Oral sex
• Sex aids
• Cooling
• Carbamazepine / Gabapentin
• Sensual and textural touch

31. Sex aids - how far we have come!!!
28,000 BC 500 AD 1869 1902

32. 1966 1983 2017

33. Intimate massagers
Emotional bliss

34. Secondary effects of other MS
symptoms

35. “Keep fit for Sex”
14

36. • The majority of women do not reach orgasm
during intercourse
• Sex is rarely mutually orgasmic
• 2 out of 10 episodes of sex will be ‘rubbish’
• 6 out of 10 will be ‘alright’
• 2 out of 10 episodes will be ‘great’
• At best, 80% of your sex life is mediocre

37. How was it for you?
Take home points:-
• Don’t wait for them to ask you, they are waiting for
you to ask them
• There are many strategies, don’t be shy, women are
keen to know how they can improve their sex life
and you may be the only person they can turn to

38. Nicki Abel RGN, BSc (Hons),
Lecturer Practitioner, Birmingham
City University and Queen Elizabeth
Hospital, Birmingham
https://www.youtube.com/watch?v=blf
vlvl6Hmo&feature=share
Acknowledgement

39. Further reading/resources
• http://counselling-matters.org.uk/sites/counselling-
matters/files/SensateFocus.pdf
• Taylor, B and Davis, S (2006) Using the Extended PLISSIT model to
address sexual healthcare needs Nursing Standard 21 11,
• http://www.psychologytoday.com/blog/all-about-sex/201303/hysteria-
and-the-strange-history-vibrators
• Menopause: diagnosis and management. NICE 2015
https://www.nice.org.uk/guidance/ng23

40. References
1. National Institute for Health and Clinical Excellence. Multiple sclerosis - management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline 8.
London: NICE; 2003.2.
2. Koch, T (2002) Construction of sexuality for women living with multiple sclerosis. Journal of Advanced Nursing. 39, pp.137–145.
3. Zorzon, M. et al (1999) Sexual dysfunction in multiple sclerosis: a case control study 1: frequency and comparison of groups. Multiple Sclerosis. 5, pp.418–427.
4. The Sexual Respect Toolkit (2013) http://www.sexualrespect.com/
5. Ward-Abel, N & Sykes, J (2011) Sexuality and MS: a guide for women. Multiple Sclerosis Trust
6. Westlake, S (2012) Sex, intimacy & relationships: MS Essentials. MS Society.
7. Multiple Sclerosis and Sexuality & Intimacy (2007) http://www.msnz.org.nz/sexuality-and-intimacy/
8. Domingo S, Kinzy T, Thompson N, et al. Factors associated with Sexual Dysfunction in Individuals with Multiple Sclerosis: Implications for Assessment and Treatment.
International Journal of MS Care 2018; 20(4): 191-197
9. Masters, W. H and Johnson, V. E. 1966. Human sexual response. Boston: Little, Brown & Co.
10. Ward-Abel, N et al (2014) MS Sex, Sexuality and Intimacy: A Consensus guide for healthcare professionals by healthcare professionals.
11. Newson, L & Sadler, C (2017) Guidance on diagnosis and management of Urogenital atrophy or Genitourinary Syndrome of the Menopause (GSM)
12. Annon, J (1976) The PLISSIT model: a proposed conceptual scheme for the behavioural treatment of sexual problems. Journal of Sex Education Therapy. 2, 1, 1-15
13. Mick, J et al (2003) Sexuality and cancer: How oncology nurses can address it BETTER Oncology Nursing Forum 30(Suppl 2):152–153, 2003
14. Sexual Advice Association https://sexualadviceassociation.co.uk/
15. National Institute for Health and Clinical Excellence. Menopause: diagnosis and management. NICE Clinical Guideline 23. London: NICE; 2015
16. Bronner, G. et al (2010) Female sexuality in multiple sclerosis: the multidimensional nature of the problem and the intervention. Acta Neurologica Scandinavica. 121, pp.
289–301
17. Edwards, D & Panay, N (2015): Treating vulvovaginal atrophy/genitourinary syndrome of menopause: how important is vaginal lubricant and moisturizer composition?,
Climateric, DOI: 10.3109/13697137.2015.1124259

41. Thank you for listening!

42. Our contact details
Denise Middleton Dip COT SROT
MS Clinical Specialist
Bletchley Community Hospital
Whalley Drive
Bletchley
Milton Keynes
MK3 6EN
Direct Line:(01908) 724528
Email:
denise.middleton3@nhs.net
Lesley Catterall RGN
MS Specialist Nurse
Bletchley Community Hospital
Whalley Drive
Bletchley
Milton Keynes
MK3 6EN
Direct Line: (01908) 724540
Email:
lesley.catterall@nhs.net