The problem with sex: is our reluctance to talk about it harming patients?

Introducing Cochrane UK’s special blog series #theproblemwithsex, which aims to lift the lid on sex and chronic health conditions, on the lack of good evidence for treatments, challenges around talking about sex, and on what can be done to change things for the better.

We have a problem with sex. Lots of problems, actually. It’s easy to think that sex is everywhere in the media. Sex sells, right? But I get the impression that there’s very little discussion about the sexual problems (let’s not talk in general terms about ‘dysfunction’ – a terribly clinical word with a whiff of judgement about it) experienced by many, many people, associated with long-term health conditions and treatments.

What do we hear about sex and cancer, diabetes or mental health problems? When does the person attending an appointment to discuss their medication or latest test results get to talk about sex, which might be uppermost on their mind but the thing they feel least able to mention? If they do, will their health professional be ready for that conversation, or even initiate it? Where might that discussion go? Are there evidence-based treatments that could be considered?

Why are we talking about sex?

At Cochrane UK, we started talking about all this eighteen months ago, when we saw a Cochrane review on interventions for sexual problems among people with chronic obstructive pulmonary disease (COPD). Cochrane reviews pull together the best available evidence on a topic, after extensive searching for research published across the globe. This review found just two relevant studies, involving 48 men suffering from erectile problems. The review authors highlighted two very important things in summing up this work. Firstly, that there isn’t any reliable evidence to tell us what might help improve sex for people with COPD, and what might make things worse. Secondly, at the moment, help for such patients can only rely

  • “on clinical trials which have not involved people with COPD”

and

  • “on expert opinion”

This needs to change. This review did involve patients, and they made it clear that sex matters. There are helpful suggestions for what future research needs to address, a wish list that provides a stark contrast to what’s available now.

Let’s focus on what matters to people

Since then, we’ve seen Cochrane reviews published on other health conditions, and it’s the same old story. They have shown up huge gaps in the evidence on treatments for sexual problems and a failure to address things that matter to people.  Like vaginal dilator therapy, which is standard British practice for women having pelvic radiotherapy but for which a Cochrane review finds no evidence from randomized trials and highlights other problems with research in this area including the lack of a “globally useful, validated tool for measuring the harm inflicted by encouraging dilation” (we have a fantastic blog on this review, and what’s happened since, here. Or like the limited research on vaginismus, uncovered by this review, which defines treatment success as penetration, with no consideration of anything other than the mechanics of it.

We need to break the silence, so that people can have honest discussions with their health professionals and therapists about the treatments on offer; so that there is clarity about the gaps, and so that future research can explore the wide range of possible treatments and focus on outcomes that matter to people.

Breaking the silence on #theproblemwithsex

Over the next fortnight, we will be exploring this important topic through a series of guest blogs. We’ll also be co-hosting a tweetchat with @WeNurses on 6th April at 8pm. Chat details here.

We really want to hear what you’ve got to say too, so please follow the series #theproblemwithsex and join in the conversation, here on Evidently Cochrane, with @CochraneUK on Twitter and on Facebook. I’m on Twitter @SarahChapman30

References may be found here.

Sarah Chapman has no conflict of interest to disclose.

More from #theproblemwithsex

Cancer: it’s not just about survival. Sex matters too

Sex, relationships and asthma: could patients’ love lives hold the key to better asthma outcomes?

Let’s talk about sex and chronic pelvic pain: it matters!

Talking with patients about sex. Asking, Listening, Learning.

Vaginal dilator therapy: vibrate, dilate, or wait?

Asking about your sex life isn’t vulgar, it’s vital

Vaginismus is ruining sex. Research must move beyond penetration

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Sarah Chapman

About Sarah Chapman

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Sarah's work as a Knowledge Broker at Cochrane UK focuses on disseminating Cochrane evidence through social media, including Evidently Cochrane blogs, blogshots and and the ‘Evidence for Everyday’ series for nurses, midwives, allied health professionals and patients. A former registered general nurse, Sarah has a particular interest making evidence accessible and useful to practitioners and to others making decisions about health. Before joining Cochrane, Sarah also worked on systematic reviews for the University of Oxford and the Royal College of Nursing Institute, and obtained degrees in History from the University of Oxford and in the history of women’s health and illness in early modern England (MPhil., University of Reading).

7 Comments on this post

  1. I work with HCPs across the UK to help them talk about sex with their patients and tackle subjects such as sex and cancer, sex after childbirth, erectile dysfunction beyond popping a pill, sex and older people and sex education. No one else in the UK is doing what we are doing at Jo Divine, offering practical sex advice written by a former RGN who has an extensive knowledge about sexual health issues and speaks to people every week about how they are dismissed by HCPs for wanting to enjoy good sexual intimacy and pleasure and helping them to find ways to enjoy sex. Sex needs to be included in med school training so HCPs can overcome their own prejudices and views to help their patients.I work with so many amazing HCPS across the UK who are so pleased to be able to use our articles, recommend our products and know that they can trust the well researched information and advice on our website, rather than telling their patients to pop to Ann Summers or go on websites which have 1000’s of products, many of which are not pleasant to look at. HCPs are offering outdated advice prescribing products that are detrimental to sexual health such as lubricants containing glycerin which can cause thrush and recommending KY jelly and vaseline.. Yet all my advice is free and available to all HCPs including our health brochure, created with a gynaecologists and WH physio to help women who struggle with medical dilators, post op scarring, decreased sensation and to enjoy sexual pleasure again after treatment and is given out across the UK. We normalise sex at Jo Divine, not medicalise it.Many GPS recommend sex toys including the fabulous doctor who showed our advert in Good Housekeeping to his patient and told her to buy one. Many tell their patients to go to Ann Summers but many people don’t want to go into a high street shop, have no idea what to buy and what it should be made from. Being given a health brochure in clinic is great and they can call for a confidential chat, order online and by post too. Just because Jo Divine is a sex toy company don’t dismiss us, take a look, read our articles and share them with patients. We help so many people enjoy better sex lives and help them overcome sexual issues, including our 95 year old customer! We also film videos and have Sex and Breast Cancer, Sex and Cancer, Sex and Womb Cancer, Sex should never be painful.I would love to be involved in your work as I have experience in this area and have written an extensive range of sexual health and pleasure articles.

    samantha Evans / Reply
  2. I love this campaign and I’m looking forward to reading the blogs. All too often issues around sex get brushed under the carpet by health professionals, for a variety of reasons, sometimes intentional, but most often not. Raising awareness in this way, and creating a space to discuss it further, is great. We have a lot to learn. Thank you!

    Sharron Hinchliff / Reply
    • Rufaro Ndokera

      This is a good point. Sometimes not bringing sex up isn’t intentional, it just isn’t mentioned. I really think this campaign will help people reflect on what they have been doing, saying and recommending, hopefully for the better.

      Rufaro Ndokera / (in reply to Sharron Hinchliff) Reply
  3. Great to see sex on the agenda! In the 1990s I ran a cancer support group and remember a man weeping because he’d just had prostate treatment and nobody had warned him about the impotence he then experienced. I had my own problems after radical treatment for anal cancer in 1990 – no mention of sexual difficulties or offers of help after combined chemo/pelvic radiotherapy and brachytherapy. Eventually, I raised these issues and many others in a book: ‘In 2006, an audit of UK cancer patients showed 87% wanted to receive all possible information, whether good or bad, but were still not getting sufficent information, even when treatments could affect sexual well-being and result in near total impotency (Cox A, Jenkins V, Catt S, et al. Information needs and experiences; an audit of UK cancer patients. Euro J Oncol Nurs. 2006; 10: 263-72)’ – and ‘Even as late as 2007, some gynaecological patients were not being told how treatment might affect their body or sexual functioning, and were not being issued with vaginal dilators.’ (-personal contact). – from pages 181 and 182 respectively, Nothing Personal, disturbing undercurrents in cancer care. Radcliffe Publishing. Sexual relations may not be everything, but many a relationship has failed due to sexual problems – families split up – wider family units affected. ‘Would it be the same if their the doctors’) own bodies were affected’ I wondered.
    As a lay member of the Royal College of General Practitioners Patient Partnership Group, I was invited to give a presentation at their celebratory conference. One of the GPs mentioned the need for young people to be told about these side effects of treatment before they consented to it – I stood up and said, ‘I’m 62 – and I still want sex!’ – I didn’t mean there and then! But there was a roar of approval and a burst of spontaneous applause. Doctors should not make assumptions about older people and their needs and wants.

    Mitzi Blennerhassett / Reply
  4. Brilliant to see the lack of discussion around sex and chronic diseases getting some attention. Shedding light on this topic has huge potential to improve patient care. Looking forward to getting involved in the Tweetchat next week!

    Stephanie / Reply
  5. Brilliant to see the lack of discussion around sex and chronic diseases getting some attention. Shedding light on this topic has huge potential to improve patient care. Looking forward to getting involved in the Tweetchat next week!

    Stephanie Ejegi-Memeh / Reply
  6. I think I have come across sex discussions in neurological rehabilitation diseases like MS and Parkinson’s as well as stroke survivors. The subject was mostly left to clinical psychologists where I worked and I found out that nurses were directed on how to talk about sex through clinical psychologists advise. I will be following discussions on this interesting topic.

    Leatitia / Reply

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