Women’s Experiences of Sexuality after Spinal Cord Injury
Research into sexuality after spinal cord injury (SCI) has focused on men rather than women and although some studies into women’s experience of sexuality have been published, none are from the UK and may not reflect the experiences and feelings of women in the UK.
The aim of this study was to understand women’s experience of sexuality after spinal cord injury with the aim of improving the advice and support offered to women around sexual issues by healthcare practitioners and to identify any gaps in knowledge or service provision. The study also aimed to explore how women manage the physical effects of injury, such as bowel dysfunction, in order to engage in sexual activity, education and support during rehabilitation and menstruation management.
This study recruited women from three UK spinal centres with SCI and cauda equina and explored the experience of sexuality with a focus on how they manage SCI symptoms which affect sexuality and how rehabilitation meets their needs.
Six themes were identified: physical change, psychological impact, dependency, post injury sexual life, relationships and partners, sexuality in healthcare. Menstrual management was also explored.
Anxieties about being able ability to satisfy a sexual partner, when it is OK to have sex again after injury, risk of further injury during sex and what to expect of sex after SCI are common. Women are less satisfied with their body and self-image after injury, which for some women can lead to feelings of detachment from their body.
Women’s expectations of their sex life after SCI are low; loss of the ability to orgasm is devastating and frustration over the loss of spontaneity due to the preparation required before sex was universal. However, positioning aids are helpful, and sex toys and pornography can increase sexual enjoyment. Sex remained an enjoyable and valuable experience for most.
For more dependent women, accepting the help they need from a sexual partner is difficult and can lead to confusion between lover and carer roles for their partner. Knowing that employed carers are in the home can be off putting.
Relationship status is important to how women deal with sexuality after injury as individuals: those in relationships from pre-injury felt they helped with adjustment, others felt being chosen with their injury was better, single women worried about future relationships. For all, disclosing information or teaching a partner about their disabilities is challenging.
The study found that many women’s experience of sexuality rehabilitation was poor. They felt that healthcare practitioners lack knowledge and confidence to give women the information and support they need and often do not acknowledge women’s sexuality issues. Participants want women-only education and support groups, increased peer support, self-esteem, communication and social skills training and even fashion advice and pampering sessions both during rehabilitation and across the lifespan. Support and education for partners are also needed.
Their sexuality remains important to women after SCI and although sexual activity is altered by the SCI it is still enjoyable and rewarding for most. Sexuality rehabilitation should commence early after injury, preparing women for the changes to their body in relation to sex and how they can discuss this with a sexual partner. Healthy ways to avoid incontinence and to deal with other symptoms during sex should be taught during rehabilitation. Further research is needed to explore how the effects of symptom management on sexuality can be reduced.
Project Lead: Dr Maureen Coggrave
1-Year Project costs: £60,572 funded by Masson Legacy and Buckinghamshire Healthcare Trust