Sexuality, sexual health and relationships

EB can significantly impact intimate relationships in a variety of ways, the team can help you with a variety of the ways this can manifest.

• How much privacy you get and how easy it is to meet people  
• How EB can affect confidence in speaking with potential partners  
• Problems with sleep, pain, and energy levels  
• Protect particular areas of the body during sexual expression 
• Fears of physical harm from sexual expression 
• Consent and your rights 

Practicalities of sex with EB  

The Debra sexuality guidelines provide information on some of the practicalities of physical intimacy with EB. There are however, many things that have not yet been researched, and so we are still learning what is helpful and what works.  

• Debra international, sexuality guidelines

Enjoyable, safe sex 

Sex and sexual expression should be enjoyable, please speak with the team if it is not. The multidisciplinary team can help. For some patients, this will require a lot of time and adaption to find what works best

Within relationships, it is important to remember that your body is your own, and you have a right to stop any touching or activity if you are experiencing pain, experiencing something that you know will cause pain later, or you just want to stop. This is true for everyone, and not only relevant for people with EB

Assertiveness about your body and your rights can feel difficult for some people. EB can involve a lot of people looking at your body over the years and physical touch can sometimes become associated with pain which can make physical relationships difficult.  

Some people tell themselves they are “letting their partner down” if their EB impacts their physical relationship at all. This is something we hear often

If you are feeling anxious about potential pain or have memories of pain previously that is impacting this part of your life, you can speak with the team psychologist. They can help you unpack the associations you have between touch and pain, and to empower you to make choices and communicate your needs so that you can have a more positive experience of intimacy and touch.