For the last six years I’ve been researching men’s sexual health in IBD. My experiences are drawn from my time as an IBD nurse. One of the greatest privileges of being a nurse is to be trusted with people’s most personal and sensitive problems. Through listening to people’s experiences, I began thinking about some things clinicians could do better. This led me to undertake some research to shape and improve healthcare practice. 

I’ve presented my findings in academic publications and at health conferences, but I haven’t been able to share them with the people to whom they matter most – those living with IBD. I am excited to share my findings, and explain how my team of researchers are working together with a group of men living with IBD and health professionals, to investigate men’s sexual healthcare. 

In order to gather knowledge of men’s sexual health, my colleagues and I undertook an extensive review of previous research. You can read that paper here, (https://onlinelibrary.wiley.com/doi/full/10.1111/jocn.15418).  

The review told us the following things: 

1. That men’s sexual health hasn’t been extensively researched;  
2. That men with IBD are more likely to have erectile dysfunction than men without IBD;  
3. That there are several other ways in which IBD can disrupt sexual well-being, including altered body image and reduced sexual desire; 
4. That there are no clear recommendations for healthcare professionals on how to assess or treat sexual health in men with IBD. 

Supported by a small group of people living with IBD, we designed a study to gather personal experiences. This type of research is unusual in clinical settings but we strongly believed that hearing personal experiences would help us to better understand the needs of men. The findings of this study can be read in full here (https://onlinelibrary.wiley.com/doi/full/10.1111/jocn.17292) but the following is a quick summary of our findings (in all the quotes provided, names have been changed to protect the confidentiality of the men who participated): 

“My sexual desires, everything, my normal life just kind of stops.” (Arthur, 47 years) 

Men described how IBD disrupted their lives. Common to many of the interviews was the idea that IBD can change personal and intimate relationships. 

“Brought us closer a bit together, but at the same time it separates you.” (Alex, 28 years) 

The symptoms of the disease could disrupt sexual interactions. Men reported they didn’t feel attractive and they felt unclean because of the condition. 

“Just didn't feel like sex, because I just felt really self-conscious about it and her having to see me that way” (Andy, 28 years) 

Some men explain how prioritising their physical health could lead to problems in their relationships.  

“You don't want to come across as sort of not wanting to be with your partner, it's getting it across in the right way.” (Benjamin, 20 years) 

The men we interviewed told us that health professionals did not ask them about their sexual health, and that there was very little information available to them. This led us to conduct interviews with health professionals, including nurses, doctors, surgeons, clinical psychologists and dietitians.

These interviews helped us to better understand the problems experienced by men and the barriers faced by health professionals in assessing and treating sexual health. Health professionals told us that they felt sexual health was important - but that they hadn’t received enough training in this area. Rather, they often felt that they were providing a ‘firefighting’ service and didn’t always have the time or the resources to support men in the wider aspects of living with IBD. Health professionals also reported that there was limited understanding in the healthcare community around the sexual health needs of gay and bisexual men with IBD.  

Through listening to the experiences of patients we have learned that there are some important areas of the disease that we need to have greater awareness of. For example, there is little research on how the disease affects puberty, fatherhood, sexuality, and people’s partners.

When we asked healthcare practitioners why they thought that conversations about sex and sexuality were rare, they told us they believed there is a stigma or embarrassment around sexual health. Additionally, for many healthcare workers and people with health conditions, the term ‘sexual health’ is associated with sexually-transmitted infections or fertility. However, the World Health Organisation also defines it as the freedom to have ‘safe and pleasurable sexual experiences’ and therefore these should be matters that can be supported within healthcare services.

My deepest gratitude goes to all those who participated in this research and entrusted me with their stories, and to Crohn’s & Colitis UK who have helped to advertise and promote the research.