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After a Spinal Cord Injury many people assume that they’re never going to be sexually active or fulfilled again. Lack of desire can be a direct result of the injury, depending on where along the spinal cord the injury is, but it can also be the result of living with the consequences of the injury. For example, adjusting to paralysis can lead to a period of sadness or grief, which clearly can affect sexual desire whilst the discomfort of certain symptoms can have a huge impact on your self-esteem. Your sex life as you knew it has changed, but that doesn’t mean that it’s over forever! Sex is a crucial part of living a full life and can ease physical pain as well as boosting your mental wellbeing. Naturally there are difficult dynamics to balance depending on your circumstances which may affected by whether or not you are in a relationship or if your primary carer is your parent or relative, as it can be awkward for them to balance your need for intimate independence with your care needs, however these are all issues that need to be addressed and help is out there.
Talking to a healthcare professional is a good place to start, however it can be hard. Most specialist spinal health care professionals should know how to deal with this and be able to suggest possible treatments and options available to you. However, other healthcare professionals may not bring up this topic themselves as it can feel intrusive, and instead wait for you to address it. Learning about your options, as well as how exactly your body works after your Spinal Cord Injury (SCI), is crucial to getting rid of myths and misconceptions.
Medical treatment is more commonly available to men with a SCI as they struggle to achieve an erection naturally and so more has been done to develop the science behind this. There are pills that your doctor can prescribe, as well as prostaglandins, which are man-made hormones that stimulate blood flow. Prostaglandins can come in injection or be inserted into the urethra in pellet form. Another form of treatment is a vacuum pump which uses pressure to create an erection and a rubber ring to maintain it. The NHS Choices website can be helpful for suggestions as to which kind of treatment best suits your needs, and which treatments are available on the NHS. Whilst these treatments deal with erections, ejaculation is a separate issue. Penile Vibratory Stimulation is recommended for men with a SCI as it has a high success rate, especially devices released more recently.
For women the physiological changes after injury are fewer, but do include a potential decrease in vaginal lubrication and a change in surface sensation. Arousal is still very much possible, however you may find that using a water-based lubricant can help if your SCI has limited the degree of natural lubrication. Some women with a SCI lose the ability to contract their muscles, and so different sexual positions or activities may need to be tried especially if muscle spasms are occurring during certain sexual activities. The majority of women with SCI are able to experience orgasm due to the female body having two separate kinds of arousal- psychogenic (mental) and reflexive (physical). It is the reflexive kind that can be damaged following a SCI, however the psychogenic kind remains effective. One aspect of being a woman with a SCI is that it can take longer to reach orgasm: one study reported an average time of 15-16 minutes for women without SCI and 26 minutes for women with SCI. This means that more stimulation may be required, and more foreplay, however it does not mean that getting pleasure from sex following a SCI is too difficult to even attempt.
Sexual fulfilment is for everybody and it is fair to say that the needs of people with disabilities are neglected in this respect. Certain companies, however, have identified this market and make products suited to a range of disabilities: Spokz has a very successful line of chairs called ‘the IntimateRider’ which helps couples overcome a limited range of motion by rocking with minimal effort to enable a thrusting effect. This is a very popular product for those with a high level spinal injury as it requires little or no core stability to be used safely. It’s not just mobility that can be an issue but also dexterity and sensation, and there are novel ways that makers of these ‘toys’ get around the problems that some customers may face. For instance, there are a range of hands-free masturbation devices that can be turned on/off via remote control (the ‘Turbo Stroker’/the ‘Humpus’) so upper body weakness doesn’t have to be an obstacle, and some products especially for the female market include underwear with vibrators already sewn in. The MA+ Guide is a guide to sex toys, which is written for people with Multiple Sclerosis (MS) a muscle wasting condition, but which can apply to both those with MS and those with a SCI.
Many supportive sexual experiences happen within loving relationships and this is an important facet of anyone’s life. Coping with a SCI when you already have a partner throws up one set of difficulties, and finding a partner following a SCI throws up very different issues. What is important in both contexts is being able to communicate your wants and needs with whoever it is you hope to be with, whether they are also disabled in some way or not. The Outsiders Trust organisation is a great way to meet people in similar situations, and their Outsiders Club can help provide friendship and potentially something more.
One particular fact that many people are not aware of is that paying someone to help you sexually is not actually illegal. Activities that commonly accompany this exchange, such as soliciting in a public place, or kerb-crawling, are illegal however a number of websites and directories online can direct you to a local sex worker. The Sexual Health & Disability Alliance (SHADA) offers advice on how to ensure that it is a beneficial experience and no one is taken advantage of, and links visitors to The TLC Trust which connects disabled men and women to responsible sexual services. The term ‘Surrogate Partner’ is used by those who prefer it to describe someone offering sexual help in exchange for money.
For many disabled people feeling accepted physically and embraced is an incredibly powerful experience.
Peer support is crucial to explore and fulfil your sexuality after a SCI and there are a number of forums and sources of information that can help you recover your sensual side: SHADA as discussed above; Sex and Disability Helpline (0707 499 3527 11am-7pm weekdays); TLC for disabled men and women to contact responsible sexual services; ASAP Sexual Advocacy for disabled people and their professionals; and Apparelyzed forums, in particular the fertility forum which gives a lot of peer advice on what to use and how best to use it.
And for those that are desperate to get away from the internet, there are plenty of modern books about sex that include aspects of disability and advice on different approaches: edited by Miriam Kaufman, Cory Silverberg, and Fran Odette 2006; by Susan Quilliam 2008 Octopus; by Suzi Godson 2002 Cassell; by Paul Joannides 2000. The MS Guide is also a good and reassuring read that can apply equally to those with a SCI.
In an ideal world, following a SCI your care plan would include personal relationship support that encompasses sexual fulfilment, and sources of support would be clearly made available. Until this happens, however, do not dismiss your sex life as being over. Whilst previous enjoyment may change, that does not rule out all enjoyment, and the overriding message from many peers that have rediscovered their sex life following a SCI is that you just need to think creatively and be persistent.
At Bolt Burdon Kemp we understand that life with a SCI shouldn’t mean giving up on everything you previously did and enjoyed. Whilst we can help with your claim for compensation for the SCI, you have the rest of your life to live to the full and we aim where possible to obtain the security to enable you to do so.
Mariel Stringer Fehlow works with Raquel Siganporia in the Spinal Injury team at Bolt Burdon Kemp.
If you or a loved one have suffered an injury as a result of someone else’s negligence or you are concerned about the treatment you have received, contact us free of charge and in confidence on 020 7288 4844 or at firstname.lastname@example.org for specialist legal advice.