Sexuality & MS: a guide for womenSection 5: Talking to healthcare professionals
When it comes to talking about sexual problems, it can feel like a conspiracy of silence: people with MS find it tricky to discuss their symptoms and healthcare staff can appear unwilling to enquire. The reasons behind this failure to communicate are mutual to both parties: embarrassment, lack of time, not knowing how to approach this sensitive subject and a belief that it is too intrusive a topic to mention. It is also true to say that in MS, the emphasis of care is often focused on other aspects of the condition, despite the fact that sexual problems are undoubtedly a key area of difficulty for many people.
Some women with MS are made to feel that sex is a luxury; others feel that healthcare professionals think disabled women don't have sex.
Trudie
Many people find it difficult to talk about sexual problems with their partner or close friends, let alone a GP or their MS specialist nurse. However, the reality is that if you do not take the initiative, there is no guarantee that they will raise the topic. It has been shown that even simply talking about your sexual problems to a professional, or perhaps a non-judgmental friend, can be beneficial in itself and can make all the difference to how you feel about yourself.
Talking to someone you aren't so close to can actually be a good thing – after all, they aren't emotionally linked to you and what you say won't upset them or worry them on a personal level. When we talk to friends or family we worry that we are burdening them.
Esther
It is entirely natural to feel embarrassed talking about intimate details to a relative stranger, but remember that sexual problems are a legitimate consequence of MS and are managed in the same way as any other problem such as fatigue or muscle spasm. Many healthcare professionals are used to talking about such matters on a regular basis.
I feel that some members of the health profession have helped me a lot to deal with intimacy issues – combating depression, shyness and feelings of low self-esteem. However, no one has ever raised the issue of sexual dysfunction with me. I realise that discussing issues like this can embarrass some sufferers, and that they may prefer to deal with these issues in private, but I do think that patients need to know that it is OK to discuss such issues if they want. After all, if we can't talk to the medical profession, how are we ever supposed to discuss things like this with partners?
Esther
Before you attend your appointment, it might be helpful to think about the actual words you are going to use when you are discussing sexual difficulties with a healthcare professional as you will probably need to be quite specific. Consider which words you are most comfortable with when talking about your genital area, perhaps 'down below', 'nether regions', 'private parts' and so on. If you choose words that you feel comfortable with, this may help you to relax. Using pictures or diagrams is an alternative way to explain difficult things.
It can also be helpful to note down your problems and questions on a piece of paper as it is easy to forget important points when you are talking about a sensitive subject like sex. It may increase your confidence to rehearse what you are going to say.
I have approached various health professionals and none have taken up my problems and in some cases, reacted with embarrassment. Even when helpful, there is little experienced help to be had.
Marion
Unfortunately, it has to be said that not all healthcare professionals are comfortable, skilled or well informed about sex. If you are not receiving adequate support, ask to be referred to somebody with more experience in this area. Don't give up; help is out there, but you may need to be persistent!
The following healthcare professionals are accustomed to discussing sexual issues and may be worth talking to:
- MS specialist nurse
- district or practice nurse
- continence advisor
- physiotherapist
- occupational therapist
- GP
- sex therapist or counsellor
- urologist
A number of specialist sexual clinics are available within the NHS, although access to these may be limited and some areas of the country are better served than others. If you are referred to a sex therapist or counsellor, they may be able to prescribe drugs or treatments which are not routinely available.
Remember that not all the sexual problems you may be experiencing will be caused by MS. They may be caused by other health-related conditions and it is important to consider this issue when talking with healthcare professionals.