Sexual dysfunction in common in MS; approximately 45-70% of women and 50-73% of men experience sexual difficulties (Demirkiran et al, 2006), but for many people this is difficult and embarrassing to talk about, especially in a clinical setting. There is another issue: not only are many people with MS embarrassed to talk about this sensitive issue, but so are Healthcare Professionals (HCPs). Many say “I will talk about it if the patient asks me”, but often our patients are waiting to be asked in the first place. That leaves an obvious conundrum...
So, how can MS HCPs – specialist nurses and allied health professionals – provide a safe, constructive space in which to discuss the problems people may be experiencing around sex, sexuality and intimacy? And how can HCPs feel more comfortable talking about this? Nicki Abel, Lesley Catterall, and Denise Middleton, MS specialist nurses, are here to help...
“Persistent sexual dysfunction is prevalent in MS and more strongly linked to mental health aspects of quality of life than the severity of physical disability”
These are words of Dr Fred Foley, Professor in Psychology in Yeshiva University in the Bronx and an eminent MS ologist.
So, where does that leave us as HCPs? Do we focus enough on sexual problems when we see a person with MS? Who knows, if we did, we could directly and positively influence quality of life!
The first thing to establish is why people with MS experience sexual difficulties.
One way to consider sexual dysfunction in MS is to think of it in these terms (Foley and Werner, 2000):
- Primary sexual dysfunction – these difficulties are a direct result of MS lesions (e.g. plaques on brain stem can affect sexual response and intimate feelings). This can include erectile dysfunction, reduced libido and impaired vaginal sensation.
- Secondary sexual dysfunction – this is when MS symptoms negatively affect sexual response or activity (e.g. fatigue, mood alteration, pain, which may also be side effects from medication)
- Tertiary sexual dysfunction – psychosocial and cultural issues that impact on sexual function (e.g. reduced self-confidence, anxiety, problems with communication, sexual inhibitions)
Our Top Tip! Categorising sexual difficulties in this way helps focus you on your consultation with the patient as you can isolate whether to focus (for example) more on symptom management or on psychological input.
How common are sexual difficulties for people with MS and what problems occur the most?
It’s estimated that approximately 45-70% of women and 50-73% of men with MS experience sexual difficulties. However, it’s important to remember that sexual difficulties are quite common in the general population too: 43% for men and 31% for women.
Another major problem is relationship difficulties more generally – about 71% of people with MS who experience sexual difficulties report this too.
So, most people you see with MS will be experiencing problems regarding their sexuality, intimacy or relationship.
What is the most common sexual dysfunction that people complain of?
The most common problems for men with MS are erectile difficulties, decreased genital sensation, loss of libido and diminished capacity for orgasm.
For women, it’s decreased libido, decreased (or sometimes increased) genital sensory changes, loss of orgasm, and reduced vaginal lubrication.
Our Top Tip! Look at the resources that are identified later in this blog to help you identify sexual strategies that can directly help individuals manage their sexual difficulties.
Why is it important to incorporate discussions about sex in my consultations with people with MS?
The simple answer is because the majority of people with MS that you see will be experiencing sexual difficulties that may impact significantly on their mental wellbeing. The more content they feel comfortable with their sex life/relationship, the more content they will be in themselves.
Talking about sex in a consultation or review can feel awkward and uncomfortable, and many HCPs say they feel inadequately equipped to start the conversation and answer questions about sexual health and wellbeing. Many feel that the difficulties that people may highlight are outside their level of expertise.
However, interventions around sexuality and intimacy can have a significant positive impact on the lives of people with MS (and their partners), and arguably should be an essential element of education for HCPs if they are to deliver genuinely holistic care.
Without being ‘ageist’, let’s not forget that MS is more likely to be first diagnosed in young people under the age of 30, when (generally speaking) they are most sexually active.
“Young people with MS will probably want to develop their knowledge, but may be anxious about asking such questions, or be vague when asked about sex, sexuality and intimacy.”
MS, Sex, Sexuality and Intimacy: A Consensus Guide for Healthcare Professionals, page 21.
However, HCPs should be aware that people with MS of all ages could be experiencing sexual difficulties and understand that whilst this can be a difficult topic to discuss, you have a responsibility to discuss sexuality to ensure people have appropriate support.
Our Top Tip! Encourage people to express their fears and difficulties, listen to what they have to say – it is rarely as complicated as you think it’s going to be! Even simply enabling a person to express their thoughts and feelings can be really therapeutic in itself; sometimes that’s all someone needs. For more complicated sexual issues, you can refer them to other services or further information as required.
Where can I go to inform myself about sexual dysfunction in MS?
Before you start any conversation or begin any assessment about sexuality and sexual problems, it’s important to inform yourself. Here are a few places you can go, online (that won’t crash your internet at work!) and are truly helpful in MS related sexual function.
MS, Sex, Sexuality and Intimacy: A Consensus Guide for Healthcare Professionals: this document has all you need to know about sexual problems in MS and also considers ethical issues you may come across.
Sex and MS: a guide for men: a practical guide for men with MS who are experiencing sexual difficulties, which has lots of tips and guidance for self help.
Sexuality and MS: a guide for women: a practical guide for women with MS who are experiencing sexual difficulties, which has lots of tips and guidance for self help.
Ask an expert: Sex and MS: an Open Door article featuring Lesley and Denise in February 2018
Our Top Tip! It’s also important to find out which other professionals in your Trust could help you if you come across a problem that is outside your area of expertise, such as Sexual and Relationship Counsellors that maybe located in the Women’s Health department. You may also wish to network with voluntary services in the community, or other useful places like RELATE. You could compile a list of resources so they are there when you need them.
How do I get the conversation started?
Research has shown that most people do want to discuss sex with a trusted Health Professional, but find it difficult to bring this up, and hope the Professional broaches the subject first.
So, people want the Health Professional to open the door to issues relating to sex and MS, but how do you go about it?
Perhaps the best approach is to ask questions about sexual function as part of the overall assessment. But, how is best to ask the question? Don’t assume that somebody is or isn’t having sex. Explain to patients that discussing sexual issues is part of a holistic discussion, give them the ‘permission’ that it is OK to talk to you about them, and if not at that moment, they can come back to you in the future.
Maybe say something like:
“Some of my patients find that sex is an issue for them and they find it helpful to discuss this.”
“Experiencing sexual difficulties is common for people with MS, is this a problem for you?”
“If you are having bladder (or bowel) issues it is also usual to have some sexual concerns as well, is this a concern of yours?”
“50-73% of men experience sexual difficulties, is this a problem for you?”
Our Top Tip! Always ask whether the sexual difficulties are a new symptom or whether they pre-date someone’s MS diagnosis. Also ask whether sexual symptoms are continuous or intermittent, and establish the date of the last successful intercourse or sexual experience.
Some other points to bear in mind:
- Don’t forget the basics – consider non MS related reasons for the person experiencing sexual problems such as other medical conditions, or other influencing factors such as side effects of medication, smoking, obesity, etc.
- Confidentiality – make sure the person you’re speaking to feels completely assured that the discussions will be kept confidential
- Discrimination – discuss sexual difficulties with a non-discriminatory and non-judgemental attitude
- Creating a safe space – in a comfortable and confidential context, you’re more likely to have a constructive, equal dialogue where sensitive topics may be discussed. Be relaxed and friendly, and explain that discussing sex is a part of an overall review of their health and MS. In terms of the conversation, we recommend starting with a social history (family, work, friends etc.) before moving into relationships, and going from there…
- Resources – gather resources (for yourself and for your patients) on sex and MS, and where additional support is available. Consider if you wish to use an established sexual assessment tool, there are many out there, e.g. the Multiple Sclerosis Intimacy and Sexuality Questionnaire - 19
- Taking a baseline and techniques for identifying problems – the MS, Sex, Sexuality and Intimacy guide for Health Professionals has some helpful information on this – page 25 in particular.
- Recording – you do need to record you have discussed sexual difficulties within the patients case file
And finally, it is important to ask ourselves: are we providing truly holistic care if we are not asking about sexual difficulties?
Nicki Abel was an MS specialist nurse at Queen Elizabeth Hospital, Birmingham, and a lecturer at Birmingham City University
Lesley Catterall is an MS specialist nurse at Central and North West London NHS Trust (Milton Keynes)
Denise Middleton is an MS clinical specialist with a background in occupational therapy at Central and North West London NHS Trust (Milton Keynes)