Let's talk about sex: What one MS service is doing to increase understanding of sexual problems in MS


14 September 2020

Being diagnosed with MS can sometimes affect your sex life, but we know that people can often feel too embarrassed or awkward to seek out support. This Sexual Health Week (14-20 September 2020), we want to normalise the conversation around sex and MS and break down some of those taboos. Here, MS nurse Shamayne Evetts, who works in the Dorset area, writes about what her service is doing to offer support and shares some advice for people with MS who may be experiencing problems with sex and intimacy. 

I will always remember the first few weeks of working as a MS specialist nurse. Whilst shadowing one of my colleagues in an MS nurse clinic the subject of sexual dysfunction was raised. To be honest in that moment I felt embarrassed but also inexperienced in how I could support somebody with MS with their sexual dysfunction. I reflected on that encounter and realised the reason I felt this way was because I thought sex and intimacy was a personal matter that was never really discussed and I was not sure how I could help. This is what set me on a quest to learn about sex, intimacy and MS, and understand how an MS specialist nurse, who plays a vital part in a person’s MS journey, can be that one person who can support and advise people during a time where they may feel alone and may feel there is no support or solutions. 

Sexuality and intimacy have an important impact on the quality of life for nearly everyone. In MS, sexual dysfunction may be one of the less talked about symptoms of the disease, but it is important to recognise and understand this symptom in order to adequately address it.

It is surprising how common sexual difficulties are for people living with MS. Studies suggest as many as 80% of women with MS report sexual difficulties and more than half of men with MS will be affected by sexual issues at some point. People with MS can encounter various difficulties that may impact on their sexual response and intimacy. This can be due to the MS lesions in the brain or spinal cord that directly impair sexual response and/or sexual feelings. Sexual problems can also stem from MS symptoms such as fatigue, spasticity, as well as from psychological factors relating to self-esteem and mood changes. 

Both men and women with MS may experience difficulties achieving orgasm or loss of libido. By often reintroducing the basics such as kissing, cuddling, flirting, foreplay and removing the pressure to perform can be a great way to increase sexual desire and sexual arousal. Problems with orgasm can be overcome by spending more time on foreplay and using a vibrator to overcome slow arousal and impaired sensation. Also trying new or different sex positions can help. For women who may experience reduced sensations, heightened sensations and/or vaginal dryness, the use of liquid or jellied water soluble lubricants can be helpful. 

Men commonly are afflicted with problems in achieving and maintaining an erection. Treatment for erectile dysfunction ranges from oral medications, which work by enhancing blood flow to the penis to increase erectile response, to injectable medications that work in the same way to oral medications. Other options include vacuum devices or implants. 

If you have bladder or bowel problems this can be a source of great anxiety. Worrying you may lose control of your bladder or bowels whilst being intimate may result in avoiding intimacy altogether. A few measures that can be helpful can include emptying the bladder and bowels immediately prior to sex. Experimenting with sexual positions such as trying those that may not put as much pressure on the bladder, this may require practice to determine what works best and using protection such as towels on the bed. 

Fatigue is one of the most common symptoms of MS. Fatigue often worsens as the day progresses, so setting aside time early in the day may enhance the sexual experience. Experiment with different positions, some will require less energy than others. And remember that a quickie can be great fun and still as satisfying! 

People with MS can often be reluctant to discuss sexual dysfunction with their MS team as they may feel awkward and embarrassed discussing things that seem so personal. Ignoring these problems can lead to major loses in quality of life and may exacerbate people’s distress. If there is one bit of advice I would want people with MS to take away is please do not feel embarrassed to discuss your concerns surrounding your sexual function with your MS team. The MS team can develop an understanding of a person’s sexual dysfunction and limit misunderstandings that people may have. They can suggest appropriate treatments and recommend a referral to the correct healthcare professionals when necessary. 

Some of the work I have been working on around MS, sex and intimacy has been raising awareness to healthcare professionals about the importance of discussing sexual function and teaching them the tools to be able to support people with MS with sex and intimacy issues.  I have also commenced a sex and intimacy clinic within our service that can provide support, advice and the appropriate referrals as required. This clinic has enabled the service to provide a more thorough assessment of an individual’s sexual dysfunction and therefore provide better support for people with MS. 

MS has a way of turning things topsy-turvy, and while at times the challenges may feel over whelming, many people with MS have found successful and satisfying ways to deal with the intrusion of MS in their lives. Talking about personal issues is never easy, and MS related challenges are no exception. Yet finding ways to talk openly about these challenges is the first step towards effective problem-solving.