Data on female sexual function following spinal cord injury are limited. There are validated questionnaires to evaluate female sexual health but none specifically for SCI patients. Achieving an acceptable level of sexual satisfaction is multi-factorial, with areas highlighted including; sensory loss, impaired bladder and bowel control, orgasm, pain, lubrication, feeling ashamed or less attractive, mobility, low mood. 

SCI patients are often dissatisfied with the quantity and quality of information provided to them during rehabilitation. Patient’s needs are highly individual, with timing of advice critical to reception. We feel that information and support provided to female SCI patients during rehabilitation could be improved.  

The aim of our study was to evaluate the level of satisfaction with our current sexual health service with regard to female SCI patients. Our secondary aim was to analyse what is important to women following their SCI and what impacts upon their sexual health.

We invited women with SCI in our unit to complete two questionnaires; one about the information given to them at the time of their SCI and whether they were satisfied with it, and the PISQ-IR: sexual function for women with pelvic organ prolapse, urinary incontinence and/or fecal incontinence, a validated sexual health questionnaire. We excluded women who were in their first year after SCI.

Thirty-four patients completed the questionnaire, with a mean age of 52 years (range 25-83).  There were a range of injury levels from C4 to S1. Average length of time from injury was sixteen years (range 1-43). Main methods of managing their bladders; supra-pubic catheters (11/34), intermittent self-catheterisation (11/34), four had undergone bladder augmentation. Three had stomas for bowel management, while the rest used a mixture of manual evacuation and laxatives. Twenty had pregnancies pre-injury, and 6 had pregnancies after SCI, all of them needed medical intervention ( such as forceps, ventouse or elective c-section)

14/34 received information after their injury regarding sexual function; nine patients felt they had adequate opportunity to discuss this subsequently. The majority of this information was not received until they reached a specialised spinal unit. The quality of the information they received was rated as 7/10. 

28/34 patients resumed sexual activity after SCI, this occurred on average 6-12 months after injury. 9/28 women who did resume sexual activity had no orgasms and 7/28 had less intense orgasms. 14/28 felt usually to almost always sexually fulfilled during sexual activity. 9/28 rated their sexual desire or interest from low to very low or none at all. Satisfaction levels of those that did re-engage was 7/10 on a Likert scale.

Reasons for not engaging in sexual activity included no partner (57%), libido (61%), incontinence (58%), other health problems (50%), and pain (53%). 45% of women were bothered by the fact that they weren’t sexually active.

Several women found the amount of information given to them at the time of SCI was overwhelming, and too much to take in. Many suggested a single point of contact to ring when they were ready to talk about their sexual health, and one suggested regular e-mails with invitations to talk about their sexual health. Overall 44% of patients would have liked more information regarding sexual function after injury and many felt a one-to-one session would have been preferable.

Specific advice and guidance for patients regarding sexual function should be dependent upon level of injury and an individualised approach is recommended.  Group sessions are not always appropriate due to the sensitive nature of the issues patients may wish to discuss.  A women’s view to her sexual health will change over the years post SCI, and it is important to revisit their sexual health periodically.