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Sexuality and Reproductive Health in Adults with Spinal Cord Injury

1. our physical dexterity can become more limited and some people experience pain and have less mobility Aging for some people is also sometimes associated with diminished desire for sexual activity or more difficulty with sexual function Whether or not these changes will occur for you depends on your individual health issues your personality and your personal and emotional reactions to the changes that come with age If you find you are having sexual problems as you get older your health care provider can help A physical therapist can suggest exercises and different ways of moving that can make positioning during sexual activity easier Physical and occupa tional therapists may also recommend adaptive equipment such as mechanical transfer lifts to make moving from place to place less difficult and less strenuous If indicated your doctor may prescribe medications to help with erectile dysfunction if that becomes a problem associated with age 38 Sexuality and Reproductive Health in Adults with Spinal Cord Injury Lifestyle Issues YOUR COMMUNITY AND CULTURE Your attitude about sex can have a lot to do with your religion your spiritual beliefs your cultural or social environ ment and your personal or family history Your health care provider can work with you to consider your personal views when providing sexual education and counseling For example many people believe that sex is something only to be shared within a marital re
2. blood flow to the genitalia leads to increased vaginal lubrication and enhanced ability to achieve orgasm These devices require a doctor s prescription and are usually not covered by health insurance EJACULATION AND ORGASM IN MEN Men with SCI who are unable to ejaculate during intercourse sometimes find they can achieve ejaculation and orgasm during masturbation or with stimulation from a partner or vibrator The use of a vibrator on either genital or nongenital areas may significantly improve the chances for ejaculation Vibrators designed specifically for people with SCI are available for this purpose these are used both to retrieve sperm in clinical settings and for pleasure These require a doctor s prescription but less expensive vibrators are available online or in stores that specialize in sexual aids Many men with SCI describe pleasurable sensations that they characterize as orgasms even if they are not able to ejaculate People with injuries at T6 and above must be aware that sexual stimulation increases the chance of developing autonomic dysreflexia AD a sudden rise in blood pressure that is a serious life threatening condition so it is important to be aware of the symptoms and take precautions as necessary 10 Sexuality and Reproductive Health in Adults with Spinal Cord Injury ERECTIONS Men normally have two kinds of erections 1 psychogenic erections or 2 reflex erections A psychogenic erection begins in
3. can always find a health care provider who 4 Sexuality and Reproductive Health in Adults with Spinal Cord Injury is helpful and knowledgeable about this topic If you don t feel comfortable talking with your health care provider about these issues find a provider with whom you feel more com fortable discussing these questions MAINTAINING SEXUAL WELL BEING In order to achieve a feeling of sexual well being it helps to understand how your body works after SCI A good under standing of your body can be achieved through a variety of methods such as formal sex education informal discussions with your doctor or other clinician discussions with other people with SCI experimentation and discovery with a part ner or masturbation Masturbation can be useful for learning about your body and your sexual responses after SCI Education LEARNING ABOUT SEXUALITY AFTER SCI Your health care providers not only can give you informa tion about the physical and relationship aspects of sexuality after SCI they also can help you in making sure that your sexual life after injury is enjoyable and fulfilling to you and your partner Sometimes after experiencing a traumatic event like a spinal cord injury people feel vulnerable and find it difficult to talk about feelings and personal matters such as relationships and sexuality Only you and your spouse or partner friends lovers or family members can decide how and how much to communicat
4. during sexual activity can be a source of pleasure but may also increase the possibility of an accident Being prepared for such an event can reduce anxiety and minimize the disruption that a bowel accident may cause during intimate moments It is usually helpful to discuss the possibility of unplanned bowel discharge with your partner in order to reduce anxiety as well as the element of surprise In a sexual situation reduction of anxiety will lead to a more positive experience Try to have a sense of humor about the whole situation Your partner will look for your reaction If you can stay relaxed chances are that your partner will too SKIN CARE After SCI your ability to feel pressure tearing or friction on your skin can be greatly reduced During sexual activity there is usually an increase in friction on various areas of your body that can lead to injury It is especially important to inspect your skin after sexual activity with the help of a partner or caregiver if needed Skin breakdown scrapes cuts abrasions can be treated much more effectively when 34 Sexuality and Reproductive Health in Adults with Spinal Cord Injury caught early With early intervention more serious wounds or pressure ulcers can be prevented or their severity lessened One way to help prevent skin breakdown during sexual activity is to ensure that there is plenty of lubrication in the areas that are being stimulated After SCI women may experi enc
5. of time PDE5s are taken orally usually about 1 to 2 hours before sexual activity Sometimes these medications may not work the first time and your doctor may make some adjustments in how much medication you take and how soon you take it before sex A possible complication with various erection medications is a condition called priapism Priapism is a serious medical condition in which the erect penis does not return to its flaccid state within 4 hours despite the absence of physical and psy chological stimulation Priapism is considered a serious medical condition that should be treated by a qualified medical professional immediately A Guide for People with Spinal Cord Injury 13 INTRACAVERNOSAL INJECTIONS TO TREAT ED Intracavernosal injections are used to treat ED and can be a good alternative when oral medications don t work or if you cannot take oral medications because of other health issues With this method of erectile enhancement medicine is injected into the penis either by the man with SCI or his partner Some times men with sensation in the penis experience a short period of minor pain at the injection site Your doctor or other health care professionals will provide you and or your partner with instructions on the penile injection method With this method of treatment you will have to work with your doctor to determine the correct dose and strength of the medication If used properly intracavernosal injection shou
6. privacy possibly using curtains or other screening devices if you use an alternative room as a bedroom setting up an area for private phone or Internet conversations and using rooms not previously considered for sexual activity Additional suggestions for home modifications may include arranging furniture to increase accessibility encouraging transfers to a sofa where you and your partner may sit together and using remote controls to dim lights operate televisions A Guide for People with Spinal Cord Injury 25 or turn on music More unconventional locations for sexual activity may be considered e g tables sofas or vans however safety must come first Your health care providers can discuss the best positioning for sexual activity depending on your specific injury and your range of motion after your injury It is important for health care providers to Your health care providers can demonstrate various safe positions and discuss the best positioning help you practice them with or without for sexual activity depending your partner Physical and occupational on your specific injury and therapists are often trained to determine your range of motion after explain and demonstrate techniques for your injury the best positioning The extent to which you want this kind of advice from members of your health care team depends on what kind of information you feel you need and your level of comfort discussing sexual activity Ho
7. symptoms called dysmenorrhea which can include sharp throbbing or dull pain nausea or burning may become more intense post injury These menstrual symptoms can be treated with anti inflammatory medications such as naproxen ibupro fen or mefenamic acid your doctor can recommend the best over the counter or prescription medication for your specific symptoms GYNECOLOGICAL HEALTH Gynecological concerns for women with SCI are generally the same as those for women without SCI However there are some issues specific to women who have experienced spinal cord injury in particular not feeling discomfort or pain that might prompt a woman without SCI to seek medical attention For this reason and for overall health it is very important for women with SCI to schedule regular Gynecological concerns for routine gynecological exams these should MOME SERE REl include screening for reproductive health Waele MIO MOM IVOMaMEE issues pelvic exams Pap smear breast without SCI exams etc These regular exams can help prevent problems before they occur or before they become serious Remember to inquire about an accessible examination table and office when you call to set up an appointment Also it is a good idea to ask whether the doctor has experience treating women with disabilities BIRTH CONTROL Important considerations when choosing the best form of birth control include quality of circulation in the lower extremi ties c
8. the sensation changes is often found to be a sensitive area that can provide sensual pleasure A sufficient amount of stimulation of any of these areas may result in sexual pleasure In general the amount of stimulation necessary for sexual arousal will vary from person to person depending on both physical and psychological factors Remember however it takes time and lots Remember however it takes time and lots of experimenta f i tion to figure out what works of experimentation to figure out what works best for you best for you EXPLORING ALL YOUR SENSES To enhance sexual pleasure after SCI it is often helpful to think about all your available senses That is to say if you are a person who has lost sensation in your sexual organs try to enhance your sexual pleasure by using other senses Some examples include Hearing Talking about your desires fantasies and feelings can enhance sexual interactions This kind of talk can include expressing your care and love for your partner Also many people use music to set a mood and bring to mind positive memories and feelings Sight People are often stimulated by watching sexual con tact penetration or pleasure experienced by another person 8 Sexuality and Reproductive Health in Adults with Spinal Cord Injury Many people can become sexually stimulated by watching their partner become aroused a hand mirror may be useful when immobility makes it difficult to see pa
9. to sug gest encourage or engage in sexual activity with patients If you ever feel uncomfortable with a health care provider it is important to report the provider to someone else and take whatever precautions are necessary for your own well being COMMUNICATION In this section let s look at some suggestions for clear communication between you and your health care team and between you and your sexual partner so that you can get the information that you want and need If you feel comfortable try to initiate and maintain an open discussion with your health care team about sex and ask any questions you might have about sexual activity and fertility These questions may be about erections ejaculation orgasm pain fertility birth control or sexually transmitted diseases Your health care team can be an excellent resource for information about sex If you don t feel youre getting the information you need try not to become discouraged As with many health issues some health care providers are more knowledgeable and are better at communicating their knowl edge than others If you re not comfortable talking about sex with your current doctor try to find another medical profes sional with whom you do feel comfortable talking so that you can get the information you need 6 Sexuality and Reproductive Health in Adults with Spinal Cord Injury If for any reason you are not comfortable discussing sexu ality or sexual functioning
10. Academy of Physical Medicine and Rehabilitation American Association of Neurological Surgeons American College of Emergency Physicians American Congress of Rehabilitation Medicine American Occupational Therapy Association American Physical Therapy Association American Psychological Association American Spinal Injury Association Association of Academic Physiatrists Association of Rehabilitation Nurses Christopher and Dana Reeve Foundation Congress of Neurological Surgeons Insurance Rehabilitation Study Group International Spinal Cord Society Paralyzed Veterans of America Society of Critical Care Medicine U S Department of Veterans Affairs United Spinal Association Copyright 2011 Paralyzed Veterans of America This guide has been prepared based on scientific and professional information found in Sexuality and Reproductive Health in Adults with Spinal Cord Injury A Clinical Practice Guideline for Health Care Professionals published in 2005 Users of this guide should periodically review this mate rial to ensure that the advice herein is consistent with current reasonable clinical practice Sexuality and Reproductive Health in Adults with Spinal Cord Injury What You Should Know A Guide for People with Spinal Cord Injury Consortium for Spinal Cord Medicine and Paralyzed Veterans of America Copyright 2011 Paralyzed Veterans of America All rights reserved This book may not be reproduced in whole or in part by any
11. CI it is common to lose some flexibility or range of motion Loss of flexibility or range of motion com bined with bone density loss which is more common after SCI can make it easier to damage dislocate or even break limbs To help prevent this unwanted outcome support limbs with pillows or bolsters during sexual activity Try to avoid any forceful pressure when positioning your body for sexual activity It is worth a little extra effort and experimentation to figure out the best placement of your body and the best ways A Guide for People with Spinal Cord Injury 35 to support yourself with pillows or bolsters to alleviate worry about limb injury increase your comfort and the comfort of your partner and ultimately improve sexual encounters SEXUALLY TRANSMITTED DISEASES Anyone who is sexually active should be educated about sexually transmitted diseases STDs This is no less true for people with SCI Using condoms male or female condoms can reduce the risk of contracting or transmitting STDs Some individuals may be allergic to latex materials If you are talk with your doctor or pharmacist about possible alternatives to latex materials You should always use a condom when engaging in vaginal oral or anal sex unless 1 you are in an exclusive relationship in which you are sure that neither you nor your partner are having sex outside the relationship and 2 you are certain that neither of you already has an STD as determi
12. Sexuality and Reproductive Health in Adults with Spinal Cord Injury asleep with the ring in place you may develop more serious complications from blood beginning to clot in the penis This is a severe complication that can cause permanent damage to the penis and should never be taken lightly For this reason it is not a good idea to use a ring if you have been drinking alcohol or using any form of recreational drugs Vacuum devices tend to be more acceptable for people who are in established sexual relationships where spontaneity is not a major issue Many people tend to feel that the vacuum device seems unnatural and is clumsy to use It is not a good idea to use these devices if you are taking blood thinners or have been diagnosed with sickle cell disease VIBRATORS AND PENILE RINGS Vibrators purchased online or at a store that specializes in sexual aids sometimes provide the stimulation necessary for a man to achieve an erection Even if the erection does not occur a vibrator may be a good source of sensual pleasure for both men and women Many men also use a simple rubber band or a penis ring purchased online or at a store that spe cializes in sexual aids to improve their erections These bands are slipped around the base of the penis and keep the penis hard by preventing the blood from leaving the penis As with a VCD rings left on the penis for more than 30 minutes may lead to more serious complications from blood beginning to cl
13. Wu Q 5 W ce Lu 5 N 2 O U Sexuality and Reproductive Health in Adults with Spinal Cord Injury What You Should Know A Guide for People with Spinal Cord Injury sortium for INAL CORD EDICINE CLINICAL PRACTICE GUIDELINES Administrative and financial support provided by Paralyzed Veterans of America Consumer Guide Panel Stanley H Ducharme PhD Boston Medical Center Boston University School of Medicine Caryn Cohen MS College Park MD Consumer Focus Group John Bollinger Member Paralyzed Veterans of America Fred Cowell Senior Health Policy Analyst and Acting Director Research and Education Paralyzed Veterans of America Charlie Croteau Worcester MA Marion Dawicki President Board of Directors Independent Living Center Saugus MA Laura Ellington Member and Vice President Executive Committee Paralyzed Veterans of America Doris A Ganzy RN BSN AN Saxonburg PA Bob Herman Senior Advocacy Attorney Paralyzed Veterans of America Terry McManus Associate Director Medical Services Paralyzed Veterans of America Staff Writers J Paul Thomas Paralyzed Veterans of America Kim S Nalle Paralyzed Veterans of America Consortium for Spinal Cord Medicine Member Organizations Academy of Spinal Cord Injury Professionals Spinal Cord Injury Nurses Spinal Cord Injury Psychologists and Social Workers e Paraplegia Society American Academy of Orthopaedic Surgeons American
14. al emergency AD can occur when the autonomic nervous system Autonomic dysreflexia is a experiences a period of severe overactivity condition that can be experi This overactivity can cause the sudden enced by people with injuries onset of dangerous symptoms such as very at the T6 level or above high blood pressure which if not treated and is considered a medical can cause seizures stroke or even death emergency Some symptoms of AD which are caused by the unusually high blood pressure can be a pounding headache sweating goose bumps a slowed pulse nasal congestion being flushed or a reddening of the face or blotchy skin body hair standing on end restlessness feeling nauseated clammy cold skin blurred vision and of course high blood pressure Unfortunately AD can occur without any symptoms that you notice this is sometimes called silent autonomic dysreflexia These symptoms or silent AD may be more severe with ejac ulation and orgasm Because AD is such a serious condition it is important to talk to your doctor to discuss precautions to take before and during sexual activity to prevent the onset of AD and to know what to do if AD occurs or you suspect 30 Sexuality and Reproductive Health in Adults with Spinal Cord Injury you are experiencing the symptoms of it Consumer Guide Autonomic Dysreflexia What You Should Know 1997 There are medications your doctor may prescribe to help reduce you
15. cal diseases Men should have regular exams of the penis prostate and testicles It is becoming routine in many health care settings for sexually active men and women to be screened for HIV AIDS and other sexually transmitted diseases early detection leads to more effective treatment Women may also want to ask their doctors about screening and or immunization for the human papillomavirus HPV Also don t forget to ask your doctor to provide you with regular neurological assessments Neurological changes over A Guide for People with Spinal Cord Injury 29 time may affect sexual function and the sooner any such changes are detected the better AUTONOMIC DYSREFLEXIA See the Consortium for Spinal Cord Medicine s consumer guide Autonomic Dysreflexia What You Should Know 1997 available at www pva org cpgs Sexual activity especially orgasm and ejaculation can increase the likelihood that autonomic dysreflexia AD may occur in people with injuries at T6 or above Other stimuli that can trigger the onset of AD include wounds such as pressure ulcers harmful stimulation of the skin bladder and bowel problems and joint or bone injury In general any stimulus below the level of injury has the potential to cause AD Anal sex can also raise the potential for both AD and bowel accidents Autonomic dysreflexia is a condition that can be experi enced by people with injuries at the T6 level or above and is considered a medic
16. ces between the conditions and knows what to do if either is detected MENOPAUSE Research studies have demonstrated that there are no significant differences in the menopausal symptoms of women with SCI and those without SCI in both cases symptoms and time of onset vary greatly from one person to the next Some common symptoms of menopause are depressed mood or unusual fluctuations in mood headaches trouble sleeping hot flashes memory problems bladder changes dryness of the mucous membrane and changes in skin For women with SCI symptoms of menopause may be the same as symptoms relat ed to injury and so may not be menopause at all For this reason talk to your doctor about any symptoms that you think may be related to menopause so that he or she can determine the cause and treat them correctly Male Fertility Generally the amount of sperm in the semen of men with SCI falls within the normal range therefore most men with SCI have sperm that can fertilize an ovum egg in order to achieve pregnancy However sperm motility meaning the sperm s ability to move spontaneously in order to increase the chances of fertilizing an egg tends to be slowed in men with SCI This means the sperm in men with SCI may not be as likely to find its way to an egg for fertilization For this reason couples in which the man has SCI may need to use medical fertility procedures to achieve pregnancy for example in vitro fertilization Also b
17. changes in your mood It is normal for people to feel sad or depressed at different times especially in response to adverse events It is certainly understandable to feel sad and scared after experiencing a major physical trauma such as SCI Work with your medical team your friends and family and or your partner to get the comfort A Guide for People with Spinal Cord Injury 37 and help you need during your period of recovery and rehabil itation As time passes however you may begin to feel more hopeful and positive about the future Generally two weeks is considered too long to feel depressed before getting help If you experience such symptoms as an unusual disinterest in sexual activity poor concentration persistent tiredness thoughts of suicide or hurting yourself or changes in your sleeping or eating habits feeling like you want to eat too much or not at all you may be suffering from depression Depression can be dangerous It is a condi tion that can be treated and your doctor can help you No one should simply suffer through a bout of depression depression can negatively affect your work life your If you experience symptoms of unusual disinterest in sexual activity poor concentration persistent tiredness thoughts of suicide or hurting yourself or changes in your sleeping or eating habits you may be suffering from depression social life and your sex life AGING AND SEXUALITY As we age
18. e about these matters Remember talking about such matters is not easy for anyone but communication is important and will help to improve the quality of your rela tionship and your sexual experiences A good starting point can be to think of specific questions about sex that you have for your health care provider Most people quality of your relationship wonder how sex will be different for them and your sexual experiences now and whether it will still be satisfying for their partner Communication is important and will help to improve the A Guide for People with Spinal Cord Injury 5 It may be important to consider how old you were when you were injured If you were injured at a very young age you may not have had sexual experiences or education about sex before your SCI In that case you might want more extensive information about sex sexuality pregnancy and reproductive health On the other hand if you were injured later in life you may have had sexual experiences and want information more specific to sexual activity after SCI or information related to conceiving children or how the effects of getting older may affect sexuality Although you can certainly talk with your health care provider it is important to remember that health care providers e g doctors nurses psychologists physical therapists etc must maintain professional boundaries at all times It is never acceptable for any member of your health care team
19. e decreased or absent genital lubrication and men may experience decreased pre ejaculatory fluid these factors may result in irritation of the skin during intercourse or other sex ual activity Using water soluble lubricants preferably gels can provide additional lubrication It is best to use lubricants that are water based with no added color or flavor It is not advised to use warming gels since you may not be able to detect temperature changes Silicone gels are also more difficult to wash off as compared to water based gels The gel should be applied to the genitals prior to intercourse and used on any other part of your body that will receive extra friction during sexual activity You may need to reapply gel during prolonged sexual activity If you develop a pressure ulcer you do not necessarily have to abstain from sexual activity However while the pressure ulcer is healing sexual activity should be While the pressure ulcer is modified and appropriate precautions taken interline AE eT to avoid additional injury to your skin You be modified and appropriate will need to eliminate excess pressure on precautions taken to avoid the area of your ulcer Try to be especially TOTTE careful with the dressings used to treat your wound so that they do not become dislodged or loosened during sexual activity Bandages that do become loosened or damaged need to be replaced after sex PROTECTING YOUR LimsBs DURING SEX After experiencing S
20. ecause men with SCI are more likely to experience some kind of ejaculatory difficulties medical assistance with fertility for biological fatherhood is often advisable The likelihood for men with SCI to achieve natural ejaculation and insemination with vaginal intercourse depends on many factors related to the injury These include the level of injury completeness of injury and type of injury A Guide for People with Spinal Cord Injury 23 Many men with SCI have pointed out that their ability to ejaculate seems to improve over time after injury You may find that with frequent sexual activity you are able to get closer and closer to ejaculation Try adjusting the amount of stimulation on your penis to see if it helps your chances to have an ejacu lation Also try stimulating different areas close to the penis and testicles especially if you have some partial sensation in those areas As always experimenting and trying new things will over time give you the best chance of ejaculating Fortunately if fathering a child is a goal there are a lot of options for semen retrieval if ejaculation is not possible These include the use of medications and gentle vibrator methods such as the use of a showerhead Other more intense methods of sperm retrieval include vibrostimulation with special vibrators and electroejaculation Electroejaculation can only be used in clinical settings where a physician is available to perform the procedure Most
21. ecially true for people with tetraplegia some people with high level paraplegia and people with impaired hand mobility elderly individuals or people who may be carrying extra weight In these cases caregivers may be able to help with undressing preparation such as application of lubricating gels or condom placement and positioning for sexual activity The amount of assistance provided depends on the skills training and professional characteristics of the caregiver as well as the comfort levels of you and your partner In cases where assistance is helpful it is best to have an open and honest discussion prior to the sexual encounter Personal care attendants or assistants should be prepared to discuss their roles related to sexuality including their limits Remember this can be a sensitive topic for everyone and A Guide for People with Spinal Cord Injury 27 many people may feel uncomfortable providing assistance with such personal matters Physical Health Issues TAKING CARE OF YOUR SPINE AFTER INJURY Intimacy and affection can be tremendously healing after a spinal cord injury Being sexual again is a psychological boost for most people after an injury However during the period immediately after injury your doctor might advise you to limit your movement and take other special precautions to promote proper spine healing and to avoid any additional injury Be sure to talk to your health care team about the safest po
22. eelchairs in your favorite color or that can be decorated with decals or other artwork Enjoying any activities that indulge your body and relax your mind such as manicures facials pedicures hair styling and massage In general be creative in your own particular way enjoying the music you love looking at your favorite artwork going to movies concerts plays participating in artistic activities etc The list is endless Participating in activities that you love whether they are related to how you look e g fashion or exercise or how you feel and express yourself e g music art literature will make you feel good about yourself and feeling good about who you are leads to a better body image and comfort with your sexuality A Guide for People with Spinal Cord Injury 3 REPRODUCTIVE HEALTH AND SEXUALITY Reproductive health is also a big component of sexuality For many people having a family and children is a key part of their life plan and many individuals with SCI become bio logical mothers or fathers Even for people who don t want to have children want to adopt or who already have children at the time of their injury maintaining reproductive health is extremely important to overall quality of life and well being Just as there are many ways to express sexuality after SCI there are also many solutions to any changes that people may face This consumer guide is aimed at making sure you and the other people
23. egins because they may not feel the labor pains that a woman without SCI would feel Talk to your doctor about how to recognize the onset of labor Some women become depressed after having a baby this is characterized as postpartum depression It is helpful to be aware in advance that this could happen to you If you begin to feel sad or hopeless or have thoughts of hurting yourself or your child contact your doctor immediately There are excellent treatments available to help you through postpartum depression and enable you to enjoy your new baby and your new role as a mother AUTONOMIC DYSREFLEXIA AND CHILDBIRTH For many women with SCI the most serious compli cation related to labor and delivery is autonomic dysre flexia Your doctor should be aware of this potential problem but be sure to talk about it with your doctor to be absolutely sure he or she knows how to diagnose it and treat it if it does occur Autonomic dysreflexia can have symptoms that are similar to pre eclampsia which occurs with the same frequency in both able bodied women and women with SCI Pre eclampsia is diagnosed when a pregnant woman develops high blood pressure and an abnormal amount of protein is detected in a 22 Sexuality and Reproductive Health in Adults with Spinal Cord Injury urine sample Both pre eclampsia which is the precursor to eclampsia and autonomic dysreflexia are serious conditions be sure your doctor understands the differ en
24. g or alleviating this kind of situation Talk with your partner to evaluate your priorities and the resources that are available to you for assistance A Guide for People with Spinal Cord Injury 41 Both members of the relationship need to understand and communicate about the physical and emotional issues related to SCI It is important that this communication be as non judgmental and as open as possible If your partner doesn t want to help with a particular aspect of your care try to find alternate solutions If you notice that your partner is getting stressed try to take feedback from them without getting too defensive Sometimes just adjusting an attitude or being a little less demanding can go a long way in improving how the two of you get along As a rule of thumb whenever possible see if personal care can be provided by someone other than a romantic partner or significant other This may help prevent partner burnout and maintain romantic feelings in an intimate relationship Conclusion In this guide we have tried to communicate the fact that being sexual is both how you feel about yourself and how your body responds In addition we have tried to emphasize the importance of learning how your body functions and how it reacts to sexual stimulation after an injury This is because feeling sexual and having a positive sexual experience after injury requires knowing your body and the changes that have occurred This takes ti
25. gredients so you won t know if you might be allergic to them or if they can negatively interact with other medications that you are taking Before you try any nonprescription medications or remedies take the time to discuss them with your doctor Your doctor may be able to suggest safer alternatives and can alert you to potential dangers It s important to be a cautious consumer and to maintain a healthy degree of skepticism about nonprescription alternatives SEX TOYS Sexual assistive devices more commonly known as sex toys are sometimes used to enhance sexual experiences A Guide for People with Spinal Cord Injury 17 Many people with SCI find sexual assistive devices such as vibrators or penis rings helpful in improving sexual fulfillment and pleasure Such devices can often help to make up for the lack of sensation or movement in some parts of your body For some people with SCI using vibrators or other sexual devices may be preferred over more traditional prescribed medical treatments to enhance sexual pleasure and or orgasm If you are considering using sex toys it s a good idea to first talk to your health care provider in order to find out about the possible complications associated with such devices For example penile rings can help men to keep an erection but they can also interfere with normal blood flow in the penis and should never be kept in place for more than 30 minutes Vibrators can also help achie
26. heelchair is electric protecting any electronic devices from damage or from getting wet complying with weight limits of your chair and positioning the chair next to a sturdy piece of furniture or a wall for stability This may seem like a lot to do but once you make it part of your routine it can become second nature and can save you and your partner from unnecessary injury Some individuals and couples find that the slippery effect of soap and water can enhance sensual pleasure and arousal Using soap and water to facilitate body exploration or stimulation can increase intimacy and enhance sensation The increased visual stimulation of shared showering can also increase sexual pleasure Adjustable showerheads e g jets and vibratory water massage can facilitate sexual stimulation and arousal However keep in mind that showers or baths can be less stable and are slippery environments so it s especially important to prevent slipping or falling Also if there are areas on your body with little or no sensation you may not be able to feel very hot water so take precautions to lessen the risk of getting burned such as having someone else such as an attendant check the water temperature before entering the shower HELP WITH OPTIMAL POSITIONING FOR SEXUAL ACTIVITY Depending on your injury and your general physical condi tion it may be helpful for caregivers to provide some physical assistance prior to sexual activity This may be esp
27. heir injury occurred Other people may have experienced traumatic events such as sexual abuse molestation 28 Sexuality and Reproductive Health in Adults with Spinal Cord Injury or rape It is important to talk to your doctor or another member of your health care team about any difficulties traumas or concerns you had before your SCI as well as questions you have now and about your future Consider the following questions these issues are important to address with your health care team Were you sexually active before your injury Did you have any sexual problems before you were injured What are your concerns about sex now that you have experienced a spinal cord injury What are your worries about future sexual activity Have you ever experienced any kind of sexual trauma such as rape or other molestation Have you ever experienced sexual dysfunction such as pain during sex the inability to have an orgasm or the inability to have an erection Do you have any sexually transmitted diseases such as herpes or HIV AIDS Do you have any biological or adopted children Do you want to have your own biological children Do you want to adopt children MAINTAINING YOUR SEXUAL HEALTH Regular thorough examinations of your sexual organs are an important part of your overall health care regimen For women it is important to have regular breast and pelvic exams including screening for ovarian breast uterine and cervi
28. ho meets your needs ESTABLISHING NEW RELATIONSHIPS People with SCI face certain specific challenges when trying to establish new romantic relationships Medical issues wheel chair accessibility personal care or other medical issues may present problems when trying to date someone new or develop an intimate relationship When you have a spinal cord injury asking for assistance and being able to explain your injury are important skills that will help in developing romantic relation ships or even friendships The ability to communicate effectively and to be positive about oneself is critical in order to meet new people and establish potentially romantic relationships Sometimes the best people to talk to about these issues are other people living with SCI They may have had successful experiences to share with you and may be helpful in problem solving From their 40 Sexuality and Reproductive Health in Adults with Spinal Cord Injury experiences they may be able to offer some creative ways to meet new people and form new relationships Online dating is an extremely popular way for people to find potential friends and love interests The Internet offers people access to others who are looking for companionship and a relationship Many websites provide opportunities to develop online profiles highlighting personal qualities characteristics likes and dislikes and to describe the kind of relationship you are looking for There are so
29. in your life understand all the options and possibilities available to enhance sexuality and maintain reproductive health after SCI SEX AFTER SCI Sexual function is more than just the physical ability to have sex It is also about feeling like a sexual being and if you choose to share your sexuality with another person No injury no matter how serious can take away your ability to have a relationship experience love and experience the attraction between two people If you have a spouse or partner it is important to begin experimenting with him INYe injury no matter how or her after your injury in order to find out serious can take away your how sex may have changed and how the ability to have a relationship two of you can share sexual pleasure If experience love and experi you do not have a spouse or partner or ence the attraction between if you would prefer to learn about the two people changes in your body on your own you may want to use your own touch to find out how you respond sexually after injury Because sensation and functioning may change over time the sexual feelings you experience immedi ately after injury may change over time as well Try to start talking about sexuality and sexual function as early as possible in the rehabilitation process Ask your doc tor nurse therapist or counselor direct and honest questions and bear in mind if your provider isn t giving you the informa tion you need you
30. kes it harder to achieve healthy circulation through out the body Cigarette smoking also greatly increases the chances of getting cancer and developing heart disease If you want to stop smoking talk to your doctor about med A Guide for People with Spinal Cord Injury 39 ications or programs aimed at reducing the urge to smoke Pregnant women should never smoke Relationship Issues EXISTING RELATIONSHIPS After experiencing spinal cord injury it is common for people to be fearful about the stability of their romantic rela tionships Such fears are almost universal after a serious life change Unfortunately people are often reluctant to talk about these fears with their spouse or partner and this can hurt a couple s ability to maintain open and honest communication Try to begin discussing your concerns with your partner as soon as possible after SCI in order to alleviate undue anxiety and stress This kind of open discussion can help you identify areas that are a source of anxiety for both of you Talking about these issues is a good first step in easing your mind and reducing stress In some cases you may want to discuss concerns or worries with peer counselors psychologists psychiatrists members of the clergy or rehabilitation therapists If this is the case try to find someone who has experience working with people with SCI Remember if you don t feel comfortable with the first counselor you see continue to seek one w
31. l Response and Enjoyment EFFECT OF INJURY ON SEXUAL FUNCTION RESPONSIVENESS AND EXPRESSION The temporary loss of sexual desire can be expected after any traumatic occurrence such as spinal cord injury However if this loss of desire lasts for an extended period of time it may be a sign that you are experiencing an unrecognized medical condition such as a urinary tract infection hormone deficiencies depression or negative side effects from medications It is important to talk to your doctor if your desire for sexual activity A Guide for People with Spinal Cord Injury 7 does not return once you begin to resume other regular aspects of your life Also if you are experiencing pain or discomfort during sexual activity your desire for sex is naturally going to be diminished Your health care providers can help you with these problems After experiencing SCI people lose sensation in various parts of their body this can include the penis testicles vagina or clitoris It is important to recognize that other parts of the body can provide sensual pleasure when sensation in the genitals has been compromised by injury After SCI other parts of your body such as ears neck underarms lips tongue hands fingers feet toes and face can be sources of sensual and sexual pleasure These parts of the body are often used for sensual pleasure and for some people after injury they may be more sensitive Also the area of your chest where
32. lationship Other people believe that sex can be a healthy part of a close relationship or friendship Some religions or cultures have specific teachings about sex People s beliefs regarding when where and with whom to have sex are as varied as people themselves It s important that you deal with sexuality in ways that are in line with your personal beliefs ALCOHOL AND NONPRESCRIPTION DRUG USE Drinking alcohol or using recreational or nonprescription drugs can negatively affect your sexual response and perfor mance and can have negative effects on fertility as well as your overall health While many people can drink alcohol in moderation without negative side effects some people cannot This is an area of life where it is important to be honest with yourself if you think you may be abusing alcohol or drugs For many people the capacity to drink alcohol may change after SCI due to medications or bladder management programs Talk with your health care team to determine what is best for you Pregnant women should not drink alcohol or use drugs SMOKING Smoking cigarettes is a serious health risk for everyone Because smoking cigarettes affects blood circulation it can impair sexual response sexual organs need blood to function This can be even more problematic for people with spinal cord injury given that circulation may be somewhat impaired due to the injury and the resulting limitations of movement Smoking cigarettes ma
33. ld allow for an erection to occur within 5 to 10 minutes after injection and last approximately 1 hour When pills are not effective for improving an erection such injections are usually the next best choice As with oral medications a possible complication with intracavernosal injections is priapism a condition in which the penis does not return to its flaccid state within 4 hours Priapism should be treated by a qualified medical professional immediately VACUUM DEVICES TO TREAT ED A vacuum constrictive device VCD for the treatment of ED consists of a long tube with an elastic penile ring The VCD is placed over the shaft of the penis in order to create a vacuum suction The suction causes blood to flow to the penis making it become hard Once the penis is hard the elastic penile ring is slipped off the tube and placed over the base of the penis to maintain an erection that will be sufficient for sexual intercourse VCDs use a pump that is either manually powered or powered by battery In order to use a VCD you usually have to transfer out of your wheelchair and lie down so that the VCD can create a good vacuum seal at the base of the penis Using a VCD requires some manual dexterity If you have limited use of your hands and or are tetraplegic your sexual partner can assist with the process The elastic penile ring should never be left in place for more than 30 minutes If you leave the ring on the penis for too long or fall 14
34. let s face it many of us have not had to talk much about sex look for ways to make it easier The following are some suggestions that might help e Write down your questions and take them with you to your doctor s appointment e Ask your partner spouse or a friend to go with you when you see your doctor e Take this consumer guide or other written materials with you to your appointment and show it to your doctor For example you can open this consumer guide and say It says here it s important for us to talk about sexual function I want to be sure we cover these issues as part of my treatment EXPLICIT EDUCATIONAL MATERIALS Some sex educators find using explicit educational materials materials that show people engaging in sexual activity after SCI to be useful for teaching people about sex after injury These materials can be videos pictures books magazines etc Visual illustration of people with SCI talking about sex or having sex can be instructional however while sexually explicit information may be helpful for some people others may prefer not to view these kinds of materials Be sure to express your personal choice if presented with the option of looking at sexual materials for instructional purposes If you choose to view such materials it s a good idea to discuss them with your partner or with a professional Otherwise viewing such material could lead to some confusion or anxiety about sex Sexua
35. lity and Reproductive Health in Adults with Spinal Cord Injury MASTURBATION For some people masturbation is associated with nega tive societal religious or cultural connotations however masturbation offers a safe method of self pleasuring and self exploration It is a positive and healthy way to learn about your own sexual responsiveness what works and what doesn t without the potential stress of including another person It can be especially important early after injury when learning about your body is an important thing to do Whether or not you are in a relationship masturbation can be a healthy enjoyable method to achieve sexual pleasure and to enjoy sexual arousal NONPRESCRIPTION SEXUAL REMEDIES If you watch TV surf the Internet or listen to the radio you are probably aware that there are many over the counter treatments for erectile dysfunction and sexual enhancement These may include herbal remedies devices to enlarge the penis various penile stretching exercises and other devices that have not been approved by the Federal Drug Administration FDA You should be aware that these devices supplements and medicines may not be safe if they have not obtained FDA approval Medications sold via the Internet may not be approved by the FDA may be considered illegal by the U S government and may contain unknown and potentially dangerous substances Also nonprescription treatments may not include a list of all in
36. lly started only when spasticity interferes with sleep or limits an individual s functional capacity For some people with SCI spasticity can interfere with sexual activity however other people find they can use spas ticity to help with functional mobility or stability Sometimes spasticity can facilitate sexual activity through movements that can stimulate your partner Your ability to use or control spasticity in other situations may help you determine if or how you can use or handle spasticity during sexual encounters A Guide for People with Spinal Cord Injury 31 In any case you need to be aware that orgasm can affect your muscle tone causing instability In other cases increased spasticity may be caused by body position or different sensa tions related to sexual activity If possible approach the issue of spasticity with an open mind to better understand whether it can add to or enhance the sexual experience Be sure to discuss all factors that may increase or decrease muscle tone with your health care provider when considering treatments for spasticity EFFECTS OF MEDICATIONS Some medications can affect sexual response and fertility With certain medications you may notice a loss of sexual interest more problems in becoming aroused or added difficulty in reaching an orgasm Usually your doctor or pharmacist will let you know if the medications prescribed to you are known to cause sexual side effects If you begin t
37. lotting abnormalities remaining genital sensation man ual dexterity potential problems with menstrual hygiene and avoidance of skin breakdown e g diaphragms for example may cause irritation to the lining inside the vagina Estimates indicate that more than 70 percent of women use birth control after SCI The most popular form of birth control for women with SCI is the penile condom The second most popular form of birth control is a permanent surgical procedure A Guide for People with Spinal Cord Injury 19 such as tubal ligation However before making a decision to undergo permanent birth control procedures you need to think about how sure you are that you do not want to become pregnant in the future Oral contraception the pill is the third most popular form of birth control for women with SCI While there is no indication that the pill is more risky for women with SCI any kind of hormonal birth control needs to be prescribed with caution In general your doctor should make sure there are no health risks specific to your birth control preference Intrauterine devices IUDs are associated with higher risk of pelvic inflammatory disease which is a greater risk in women with SCI Because you may not be able to detect pain as readily as before SCI any internal device that may cause infection or become dislodged may be a poor choice Again discuss these issues with your doctor or health care professional to determine
38. me and practice If you have a partner communicating this information and sharing this knowledge about your feelings and body are just as important The ways in which you handle early frustrations and disap pointments about sex can make all the difference for your future sex life Try to remember that although a positive sexu al experience is what you are striving for and is achievable there may be difficulties along the way In relationships try to push beyond your comfort zone and seize opportunities that come your way Each sexual experience can teach you some thing important about yourself and about your body after SCI In doing this your experiences will get better with time and knowledge The important thing is to know that you are still a sexual being With this knowledge and with experience you can have the kind of sexual life that you desire 42 Sexuality and Reproductive Health in Adults with Spinal Cord Injury Resources Websites Paralyzed Veterans of America www pva org www sexualhealth com www spinalcordcentral org Books Autonomic Dysreflexia What You Should Know Bladder Management Following Spinal Cord Injury What You Should Know Neurogenic Bowel What You Should Know Preservation of Upper Limb Function What You Should Know Sexuality after Spinal Cord Injury Answers to Your Questions Spinal Cord Injury Education amp Training Foundation by Stanley H Ducharme amp Kathleen M Gill Sexual Fu
39. me websites specifically for individuals with disabilities Sometimes people meet potential partners through other online forums such as discussion groups or gaming sites The downside to online socializing is that it can increase your chances of being exploited by people with bad inten tions For this reason it is important to take common sense precautions for example do not disclose too much personal information such as your address or phone number and do not believe everything people say about themselves in an online forum There are many commonly known websites especially designed for single people to meet other single people These may provide a safer structure through which to meet people however the same precautions must be used If you decide to meet someone in person begin by using a public phone or service to block your number before the decision to meet only meeting in a public place with which you are very familiar taking a friend along and always telling a friend or family member where you are going with whom and when you plan to return Always take your cell phone with you and have a plan for how to get home independently Your safety should always be the priority CAREGIVERS Individuals who also provide physical assistance to their partner with SCI can develop physical or emotional burnout that may negatively affect romantic or sexual relationships Communication with your partner is the first step to avoidin
40. means without written permission from the Paralyzed Veterans of America ISBN 0 929819 23 3 Table of Contents Foreword faa y2isss coi casa sua sncawciakas Ea a a EaR i Modu CtON sien ater esas cass ones eae ation octes pins eae 1 The Importance of Sexuality and Reproductive Health Body Image and Sexuality Reproductive Health and Sexuality Sex after SCI Maintaining Sexual Well Being Education areia aa E A a a panwacenien bee ERA 4 Learning about Sexuality after SCI Communication Explicit Educational Materials Sexual Response and Enjoyment ss achscszsasetsassictevsedacisnsssabassbsvanbendaadeaoutaseases 6 Effect of Injury on Sexual Function Responsiveness and Expression Exploring All Your Senses Genital Arousal and Orgasm in Women Ejaculation and Orgasm in Men Erections Erectile Dysfunction Testosterone Testosterone Replacement Therapy Oral Medications to Treat ED Intracavernosal Injections to Treat ED Vacuum Devices to Treat ED Vibrators and Penile Rings Penile Implants to Treat ED Alternatives to Vaginal Intercourse Masturbation Nonprescription Sexual Remedies Sex Toys Female Reproductive Health and Fertility ssessesssesssessssesssssseees 17 Menstruation Gynecological Health Birth Control Pregnancy Childbirth Autonomic Dysreflexia and Childbirth Menopause Male Fertility sssi ance aaetndciocciosernsenga E EE E EENE 22 Practical Considerations for Sexual Activity s eeseeeereerresrreseee
41. men with SCI prefer vibro stimulation rather than undergoing electroejaculation for semen retrieval Surgical sperm retrieval can be used if less invasive procedures are not effective Usually a urologist is the specialist that can help you with issues related to fertility or ejaculation Over the past several years more and more men with SCI have been fathering children Although it may seem complicated and frustrating to find a method that works for you it usually is not a complicated process and can be done fairly easily The difficulty may be in finding a doctor who is knowledgeable about this aspect of SCI and can help you find a solution Practical Considerations for Sexual Activity PHYSICAL CONSIDERATIONS After SCI there are physical and practical considerations that you need to understand in order to stay safe and healthy during sexual activity Basic issues such as how do I move my body to get into position what do I do if I have a bladder accident or what do I do with my equipment are important questions that need to be answered Physical occupational and recreational therapists nurses as well as peers who have also experienced a 24 Sexuality and Reproductive Health in Adults with Spinal Cord Injury spinal cord injury can be excellent resources for practical advice Before becoming sexually active after your injury it s good to have some understanding of potential difficulties and possible solutio
42. most sexually transmitted diseases although these are not necessarily cures and they can be more effective if started soon after the infec tion is contracted So request screening for STDs whenever you have concerns Women may want to ask about HPV vaccination or screening Psychological Health Considerations COUNSELING AND SEX THERAPY FOR UNRESOLVED SEXUAL ISSUES For some people sexuality can be associated with negative experiences such as early trauma or abuse as a child or as an adult As a result these individuals have prior issues that may make sex more complicated for them and that can make the sexual adjustment more difficult after SCI If you feel that there are other personal issues interfering with your sex life consider talking to a counselor or sex therapist Therapists or counselors can also help with difficult relationships whether the difficulty started before or after your injury In the United States sex counselors and sex therapists are certified by the American Association of Sexuality Educators Counselors and Therapists These professionals are trained to help people with sexual difficulties and have experience providing suggestions aimed at improving sexual health and well being Many people with SCI find that professional assistance in this area is especially helpful in the months following discharge from the hospital when issues regarding sexual activity may begin to surface DEPRESSION Try to be aware of
43. n order to find sexual pleasure Limiting sexual activity strictly to intercourse may greatly reduce the opportunities for sexual satisfaction Limiting sexual activity strictly to intercourse may greatly reduce the opportunities for sexual satisfaction and and pleasure Be creative and open your pleasure mind to trying different things in your sexual life There are many options for sexual expression and pleasure for people with SCI It is important to find a safe and comfortable place where you can explore new or different sexual practices or positions to enhance sexual experiences and pleasure This may be done alone or with a partner You may want to try different or alternative sexual positions or use the mouth tongue or hands for sexual pleasure Erotic pleasure from touching kissing licking and intimate stroking is an important part of a healthy sexual experience After SCI sensual exploration between partners gives couples important information about how erotic pleasure can be achieved and enjoyed Sometimes touching and caressing parts of the body that have actually lost sensation can be sensual sexually arousing and pleasurable and discovering this is often a matter of trial and error For other people touching areas where sensation is intact also can be pleasurable It is impor tant to realize that finding ways to enjoy sexual pleasure after SCI may take some time and experimentation so be patient 16 Sexua
44. nction in People with Disability and Chronic Illness A Health Professional s Guide by Marca L Sipski amp Craig J Alexander Yes You Can A Guide to Self Care for Persons with Spinal Cord Injury Magazines PN The magazine for wheelchair users www PN magazine com New Mobility www newmobility com Information is available from Paralyzed Veterans of America at www pva org publications A Guide for People with Spinal Cord Injury 43 Acknowledgments The Consortium for Spinal Cord Medicine the Consortium was founded in 1995 with the goal of improving the quality of life for persons with spinal cord injury by making their care more evidence based and through concerted outreach efforts bringing this knowledge to the widest possible audience The professional health care payer and consumer organizations that comprise the Consortium work in partnership with Paralyzed Veterans research and education team to realize this goal through the publication and dissemination of clinical practice guidelines CPGs for health care providers and companion consumer guides written specifically to provide useful information to con sumers of SCI related health care Paralyzed Veterans of America is proud to fund and administer the Consortium We are honored to partner with this esteemed group to continue to provide groundbreaking guidelines that consolidate recommendations from the highest level of experts in the field of SCI For more info
45. ned by blood test results However this should be a mutual decision based on trust and verifiable knowledge of yourself and your partner It is very reasonable and common for people who are becoming sexually involved with each other to have a series of blood test to confirm the absence of STDs If you decide to use a condom be sure you know how to correctly place it for maximum protection Your doctor or other members of your health care team can help with education as needed For some people with SCI physical limitations of the arms and hands may make proper placement of a condom difficult Your partner may be able to help and in fact place ment of the condom can be a mutually satisfying aspect of the sexual encounter The risk of contracting an STD is greatly increased when people have sex with multiple partners have sex with a person whose sexual history is not known or have sex with strangers The use of alcohol or other drugs can impair judgment thus increasing the risk of engaging in potentially dangerous sexual behavior Let s face it sometimes it is difficult to ask a new partner about personal sexual practices however it is important to have the conversation in the long run it is less stressful to talk about STDs before having sex than after 36 Sexuality and Reproductive Health in Adults with Spinal Cord Injury Early diagnosis is very important for people who do con tract an STD There are effective treatments for
46. ng sexual activity Some people prefer to remove the catheter altogether during sex and then replace it after This may be a problem if you need help to remove or to reinsert the catheter Some men who use indwelling catheters fold the tubing down the shaft of the penis or clamp the end of the catheter and then place a condom over the penis and tubing prior to intercourse A Guide for People with Spinal Cord Injury 33 If you use the technique of leaving the catheter in place you should be aware that it can damage the catheter s balloon port tubing causing the balloon to remain inflated Damage to the balloon port may cause bladder distention ultimately resulting in a urinary tract infection sepsis or AD in men with injuries at T6 and above Because of the issues associated with indwelling catheters some people with SCI switch to suprapubic catheters which can be more conducive to sexual activity It is important to ensure that your catheter is clean before and after sexual activity Emptying leg bags prior to sexual activity can go a long way in preventing spills if breakage occurs Towels or disposable protective bed pads can be very useful should leakage or bodily discharge occur Some people prefer to empty their bowels prior to sexual activity however even with an empty bowel residual bowel or mucus discharge can occur as a result of digital rectal stim ulation or some medications such as bisacodyl Stimulating the anus
47. ns Each person and every injury is unique so experience is often the best teacher SEXUALITY IN INPATIENT SETTINGS If you are living in an inpatient setting you may want to request a separate apartment or room that allows you to be intimate without interruption If this is not available ask a staff member to put a Do Not Disturb sign on the door For many couples cuddling together or lying in bed is the best way to build intimacy during the recovery period Try to take things slowly until you build confidence and know your body better and how it will respond to sexual stimulation OPTIMAL SETTINGS AND POSITIONING FOR SEXUAL ACTIVITY AFTER SCI After you have been discharged from an inpatient setting you may need a hospital bed at home to make it easier for you to make transfers from your wheelchair or to reposition yourself for various activities You may also want to use a more accessible room in your home as the bedroom if your original bedroom is not wheelchair accessible Eventually you may be able to transition back to a regular bed and to your original bedroom The ultimate goal is to make your life more comfortable and more convenient For many people using a queen or king sized bed is just as versatile as a hospital type bed for sexual activities It is very helpful for a professional SCI health care provider to do a home assessment after your discharge from an inpatient setting to look at such options as providing
48. o experience unwanted sexual side effects while taking certain medications consult your doctor as soon as possible He or she may be able to change the medication or dosage in order to remedy the problem t is never wise to stop taking prescription medications or to alter the dose you re taking without first consulting your doctor Over the counter medications and herbal remedies can also affect sexual response and reproductive health Make sure your medical team knows of any over the counter medications and or herbs that you are taking RISK OF PENILE TRAUMA Men with SCI are at a higher risk for penile bending Peyronie s disease because of a lack of sensation or no sensation in the penis During sexual activity unintentional blunt force on the erect penis may go unnoticed in men with SCI because you cannot feel the pain For this reason it is a good idea to inspect your penis after sexual activity to check for any kind of injury including skin irritation If you find any sign of penile trauma consult your doctor 32 Sexuality and Reproductive Health in Adults with Spinal Cord Injury BLADDER AND BOWEL It is very important to find bladder and bowel management practices that work well for you Maintaining good bowel and bladder function will keep you healthier and more comfortable Sometimes it will require trying several Maintaining good bowel and methods before you find the ones that best bladder function will keep suit yo
49. one has to work on by enhanc ing the things we love about ourselves and accepting the things that we cannot change 2 Sexuality and Reproductive Health in Adults with Spinal Cord Injury BobDy IMAGE AND SEXUALITY Body image refers to the way we see or perceive our own appearance It can have an impact on sexual function and desire After a serious injury it is natural that your feelings about your body are in a state of confusion and conflict It may take some time to feel good about yourself and about your body after an injury like SCI Even if you had positive feelings about your body before your injury there will probably be an adjustment period afterward during which you will need to spend time becoming accustomed to your changed body and learning to love and take care of it Focus on the things you love about yourself your own unique talents and personality Some steps you can take may include Spending time with other people with SCI who can share experiences and ideas about how to achieve a positive body image e Finding role models in the media sports TV politics writers artists etc with SCI or other challenges Selecting comfortable clothing that works well with your needs and expresses your individuality Discovering ways to express your individual style with hair styles or colors jewelry body art or other style choices Choosing assistive equipment that can be modified to express your style e g wh
50. or if you have problems keeping the erection This information will help your doctor determine which type of treatment may help your situation When SCI is the primary cause of your sexual diffi culties your doctor will most likely want you to try the least invasive method of treatment first and then use more advanced treatments later on if needed Usually in this kind of situation a doctor will start with the easiest remedy and then progress if necessary to more complicated ways of easing the problem A Guide for People with Spinal Cord Injury 11 TESTOSTERONE Testosterone is a hormone produced in the testicles or testes A lack of testosterone can affect your sex drive and your ability to achieve and maintain an erection Testosterone deficiency occurs for a variety of reasons in men whether there has been injury to the spinal cord or not but it occurs somewhat more commonly in men with SCI Sometimes it is a condition that existed before SCI but was not recognized until after the injury There are many possible reasons a man s body may produce less testosterone after SCI including chronic illnesses bladder and testicular infections brain injury problems with the pituitary gland metabolic problems diabetes and use of medications that have the unintended side effect of suppressing testosterone e g narcotics or gastrointestinal medications Treatment of these illnesses and or adjustment of medications may lead to a re
51. ot in the penis which can cause perma nent damage For this reason it is not a good idea to use a ring if you have been drinking alcohol or using any form of recreational drugs PENILE IMPLANTS TO TREAT ED Penile implants can be very effective and satisfying for the treatment of ED However a penile implant is usually consid ered a last option for restoring sexual function because the procedure is permanent That is once put in place the implant destroys the surrounding tissue in the penis so if the implant is removed alternative methods for treating ED are no longer an option As with any permanent medical procedure people need to very carefully consider the decision to insert a penile A Guide for People with Spinal Cord Injury 15 implant This is something to talk about at length with your partner There are two kinds of implants available a flexible silicone device and a more complex inflatable hydraulic device With the flexible device the penis is always semi rigid and only needs to be moved into the right position for sexual intercourse The inflatable hydraulic device employs a more complex design which some people prefer because after use the penis returns to a natural flaccid position ALTERNATIVES TO VAGINAL INTERCOURSE For all people sex and sexual expression includes a variety of activities not simply penis vagina intercourse People with SCI may need or want to explore a wider range of sexual activities i
52. out your self is the foundation for a positive and healthy sexual experi ence It is important to remember however that a satisfying sexual experience is the goal and may take time and practice after injury Throughout this guide you will often read how important it is to be open to new experiences after an injury and to try new ways of receiving and giving sexual pleasure To accomplish this it is important to understand how your body works after injury In a relationship it is also important to be able to share your feelings and yourself with someone that you care about It is our hope that this guide will answer some of your questions about sexuality after SCI Ultimately what you do with this knowledge and whether you chose to be sexually active is your decision Stanley Ducharme PhD Chairman Clinical Practice Guideline Development Panel Clinical Practice Guideline on Sexuality and Reproductive Health for Adults with Spinal Cord Injury Introduction THE IMPORTANCE OF SEXUALITY AND REPRODUCTIVE HEALTH After someone has experienced spinal cord injury SCI one of the first thoughts is often will I be able to have sex Unfortunately it can be difficult to ask this question Talking about sex can be difficult Fortunately in recent years health care professionals and people with SCI have come to realize that it is extremely important to talk listen and learn about sexuality and reproductive health after SCI Fur
53. r chances of experiencing AD Knowledge is your most important tool talk to your doctor and your partner so that you are ready for AD if it should occur If you begin to experience the symptoms of AD during sexual activity the activity should be stopped and your plan of action including seeking medical attention should be set in motion SPASTICITY Muscle spasms may or may not occur after a spinal cord injury each person is unique Muscle spasms or spasticity can occur any time the body is stimulated below the point of injury After experiencing SCI muscles can contract or become hyperactive this is called a spasm These spasms can be difficult to control This is particularly likely when muscles are stretched or something is touching or irritating the body below the injury Regular range of motion exercises can help your muscles and joints become more flexible and can help to control spasticity Still some spasticity may always be present There are some benefits to spasticity It can serve as a warning mechanism to identify injury or problems in areas where there is no sensation Many people know when a urinary tract infection is coming on by the increase in muscle spasms Spasticity also helps to maintain muscle size and bone strength Spasticity helps maintain circulation in the legs and can be used to improve certain functional activities such as performing transfers or walking with braces For these reasons treatment is usua
54. rmation about the Consortium and Paralyzed Veterans please visit www pva org The Consortium wishes to thank Larry Vogel Steering Committee chair for his valuable input into this consumer guide Copyright Paralyzed Veterans of America 2011 nsortium for INAL CORD LUE DAELE
55. rtner as well Imagination Your imagination can be extremely powerful and sexually stimulating Concentrating on your own private fantasies or sharing fantasies with a sexual partner can be very sexually satisfying GENITAL AROUSAL AND ORGASM IN WOMEN A woman s ability to become sexually aroused and experience orgasm after SCI depends to some degree on her specific injury level of injury and the amount of sensation retained in the genitals and other sex organs There are many triggers for A Guide for People with Spinal Cord Injury 9 sexual arousal emotional psychological visual physical etc It is possible that after SCI a woman will need more prolonged stimulation to become aroused and to reach orgasm Experi menting with your body through masturbation or with a partner are two ways to figure out how your body works post injury and what works best and feels best Sometimes a vibrator or other sexual device can also add sexual pleasure for either partner Some women have found that external devices such as the EROS Clitoral Therapy Device CTD can be helpful in achieving arousal and orgasm The EROS CTD is a battery operated device that creates suction around the external genitalia thus increasing blood flow to the clitoris and increasing sexual arousal Usually the device uses a cuplike apparatus that is placed over the clitoris When a vacuum is created increased blood flow creates clitoral engorgement Increased
56. rts of the body Images in movies or books can also be sexually arousing Lighting candles or dimming lamps may enhance the mood Smell The smells associated with sexual activity can be arousing For some people the use of perfume room fragrances scented candles or incense can help create an erotic atmosphere Taste The tastes associated with kissing licking or oral stimulation can be sexually arousing Many people find certain foods and flavors sexually stimulating for example certain fruit chocolates or alcoholic beverages Remember you need to be sure that anything you eat or drink does not interfere with any medications you are taking or negatively impact health conditions you may have Touch The level of physical sensation touch you can feel after SCI is related to your level of injury Be sure to work with your health care providers as well as sexual partner to find out where on your body you can feel sensation After SCI you may want to explore the possibility of new erogenous zones places on your body that when touched can be sexually stimulating such as the neck face underarms nipples etc Many activi ties such as kissing massaging holding hands or being held may provide a sense of intimacy and sensuality Try to be open and use your creativity in exploring new things Also if touch or stimulation in a certain area is not pleasant and is uncom fortable it is important to communicate this to your pa
57. seeseressee 23 Physical Considerations Sexuality in Inpatient Settings Optimal Settings and Positioning for Sexual Activity after SCI Help with Optimal Positioning for Sexual Activity Table of Contents continued Physical Health ISSUES isni tiranit aaien aa RAA ERE ERE Aaa 27 Taking Care of Your Spine after Injury Your Sexual History Maintaining Your Sexual Health Autonomic Dysreflexia Spasticity Effects of Medications Risk of Penile Trauma Bladder and Bowel Skin Care Protecting Your Limbs During Sex Sexually Transmitted Diseases Psychological Health Considerations sssesesessseessesssrssssssersssessresseesee 36 Counseling and Sex Therapy for Unresolved Sexual Issues Depression Aging and Sexuality Lif style ISSUES cronice EREA 38 Your Community and Culture Alcohol and Nonprescription Drug Use Smoking Relationship ISSUS asrar a E a SS 39 Existing Relationships Establishing New Relationships Caregivers Conclusi n 2535655455 steiedinde oivds eles ao bcs ane sab nee EE a a aE a a a EEIE EEan ENES ERE 41 REOS aira NO NEAN ERAEN 42 Acknowledgments siririna nnie iiaa amas etandaxneeneandaanieaianmemmanaeneeted 43 Foreword The Consortium for Spinal Cord Medicine is pleased to pro vide this consumer guide Sexuality and Reproductive Health for Adults with Spinal Cord Injury In developing this guide we have maintained the belief that all people who want to be sexually active after spinal cord injury SCI should have
58. sitioning for sexual activity based on your specific injury and any surgical procedures you may have had after your injury During your initial healing period more gentle activities such as touching kissing and intimate stroking may be preferable to sexual activities that require repositioning and movement With time your spine will reach its optimal healing level and sexual activity will become less restrict ed Sometimes partners of people with SCI often are afraid of further hurting the spine However additional injuries by participating in sexual activity However are unlikely once healing has additional injuries are unlikely once healing occurred has occurred Sometimes partners of people with SCI often are afraid of further hurting the spine by participating in sexual activity YOUR SEXUAL HISTORY Your doctor or other members of your health care team will likely ask you for information about your sexual history It is important that you provide the most accurate information about your past sexual and reproductive experiences that you can If your doctor or other trusted member of your health care team does not bring up the topic of your sexual history ask your doctor when this information will be discussed It is important that your health care team understands your past so that you can work together to address your future sexual functioning Some people who experience SCI had sexual or reproductive difficulties before t
59. special assistance during pregnancy distribution It is best to err on the side of caution and take things slowly while pregnant Be sure to talk to your doctor about your bladder and bowel programs to determine whether or not you need to change your usual practices while pregnant For example indwelling catheters may need to be replaced by intermittent catheters and bowel programs may need to be adjusted during your pregnancy Women who typically use a standard bed may need a hospital bed at some time during pregnancy Seatbelts and other driving equipment will probably have to be moved or adjusted to accommodate your changing size A Guide for People with Spinal Cord Injury 21 Also joints are more at risk during pregnancy particularly during the last trimester due to hormonal changes and weight gain For all these reasons it is very important to maintain open communication with your doctors therapists family and partner during your pregnancy All of these people can be important and helpful resources to you throughout your pregnancy CHILDBIRTH As soon as you decide to have a baby you should see an obstetrician who has experience treating women with SCI Talk to your doctor about how labor and delivery will be managed and be sure to make your doctor aware of your concerns and preferences Some women with SCI need to be hospitalized before labor begins For some pregnant women with SCI it is difficult to know when labor b
60. testosterone levels are truly below normal ORAL IMIEDICATIONS TO TREAT ED A class of medications called phosphodiesterase type 5 inhibitors PDE5s is highly effective for treating ED in men with SCI PDE5s include the medications Sildenafil Viagra Vardenafil Levitra as needed and Tadalafil Cialis once daily which you may have heard of Since these medications have been so well accepted it is very likely that new ED med ications will be developed in the future Men who take nitrates for a heart condition certain alpha blockers for high blood pressure or have the condition called retinitis pigmentosa a hereditary eye disease should not take current erection medications Also if you take nitropaste for the treatment of autonomic dysreflexia the use of PDE5 medications could cause life threatening hypotension or low blood pressure You probably should not take erection medications if you have been diagnosed with hypotension or if you are using other erection enhancement therapies Your doctor is the best judge of what is safe for your individual case Be sure he or she knows your medical history and knows exactly what medications and therapies you are using when considering the use of medica tions for erectile dysfunction PDE5 medications do not create an erection without physical or mental stimulation rather they assist men in gaining more penile rigidity and in sustaining an erection for longer periods
61. the brain when a man sees feels or hears something that is sexually stimulating This message is sent to the brain which produces signals that are sent through the nerves of the spinal cord and triggers a reaction in the penis an erection A reflex erection is involuntary and can occur without sexually specific thoughts or sexually specific stimulation A reflex erection can occur as a result of direct physical contact to the penis or other erotic area such as ears nipples or neck without any sexual intent Such contact can occur for example when a blanket or article of clothing rubs against a part of one s body Men with SCI may experience reflex erections which usually go away on their own after a short period of time less than 5 minutes or when the physical contact stops Reflex erections may not be adequate for intercourse because of difficulty maintaining the erections ERECTILE DYSFUNCTION Erectile dysfunction ED is the inability to achieve and or maintain an erection There are many different ways to treat ED and it is important to have your doctor thoroughly assess your condition so that the best treatment method can be prescribed You can help your doctor diagnose your condition by letting him or her know if you can achieve an erection through genital stimulation or stimulation to other parts of your body If you can achieve an erection it may be helpful for your doctor to know how long you can maintain an erection
62. the knowledge they need to make that decision and be comfortable with their sex life whatever their level of injury In addition we believe that a person who has experienced spinal cord injury has the right to receive the most up to date information about how SCI affects sexuality and sexual function Providing that information to people with SCI and their partners has been our goal in writing this consumer guide Although this guide discusses many of the physical aspects of sexuality after injury we also realize that emotional psycho logical and relationship issues are just as important Such issues as body image communication and self esteem play a pivotal role in how we express our sexuality Feeling sad stressful and alone after an injury is understandable For some individuals the emotional issues after SCI are short lived for others these feelings can last for many years and can be emo tionally painful and hamper relationships or satisfying sexual experiences It is important to recognize these feelings to begin to work through them and seek support if needed Becoming sexually active and enjoying sex after SCI may take time and practice For many people regaining courage and confi dence is the first step to becoming involved in a relationship that may lead to physical and emotional intimacy This means feeling like a person who is important worthwhile and has something to offer to another person For all people feeling good ab
63. thermore clinicians and researchers have found that sexual satisfaction remains an important part of life for people with an SCI Sexuality affects how we feel about ourselves and our rela tionships Sexuality can mean different things to different people but almost everyone agrees it is more than just the act of having sex Sexuality affects how we see ourselves as individuals how we see ourselves in our families and commu nities the relationships we have with others and our moral spiritual and cultural beliefs Sexuality can be expressed in many different ways as part of a romantic relationship in friendships in our appearance and even when we are alone with our own thoughts feelings and fantasies Unfortunately in modern society sexiness is often equated with having a particular body type for both men and women Almost everyone has to work against the urge to compare them selves to the so called perfect images on TV in movies and in magazines these images are nearly impossible for anyone to duplicate in real life At the same time if we really consider the characteristics that make someone seem sexy we find a mix of a million things someone s ability to be affectionate funny kind loving physically unusual in some way quirky or unique in appearance style or dress etc In other words in the real world being attractive is something intangible and feeling attractive is something that every
64. turn of normal testosterone levels If this does not occur you may need treatment specifically for testosterone deficiency TESTOSTERONE REPLACEMENT T HERAPY If you are experiencing erectile dysfunction ED or an unusual lack of sexual desire it may be the result of a testos terone deficiency This means that your body is not producing a sufficient amount of the hormone testosterone Your doctor can measure your testosterone level using blood tests Testos terone replacement therapy is used for men who have been diagnosed with testosterone deficiency also referred to as hypogonadism Testosterone deficiency can affect your overall physical health i e cardiovascular bone health and body fat composition as well as your mood fertility levels and sexual function If you are placed on testosterone replace ment therapy your doctor will monitor testosterone levels using blood tests in order to ensure that your body is main taining a healthy level of the hormone testosterone Testosterone replacement therapy in men with SCI should be considered only after your doctor determines that you do in fact have a testosterone deficiency Your doctor will want to consider both observable symptoms such as fatigue lack of 12 Sexuality and Reproductive Health in Adults with Spinal Cord Injury sexual desire declining strength or loss of bone density and will want to get laboratory confirmation by testing your blood to confirm that
65. ul for the father as well This is a time when open honest communication between the couple is essential Communicating with each other and having as much informa tion as possible from providers helps to ensure that you and your partner will make an informed decision as to what is best for the two of you Prenatal care should begin as soon as you decide to become pregnant Early involvement with an obstetrician is very important in order to get the best information about nutrition vitamin supplements and medication compliance For most women weight gain immobility bladder and bowel incontinence digestive issues and respiratory difficulties may accompany pregnancy some of these problems may be worse for women with SCI For women with SCI skin breakdown is also an impor tant complication that should be monitored regularly All pregnant women should eat properly and refrain from smoking drinking alcohol or using illegal substances or any medications not approved by their obstetrician While pregnant keep in mind that the techniques and strategies you used for movement before Keep in mind that the tech pregnancy may no longer work because niques and strategies you of changes in body size shape and weight used for movement before distribution For example some women who pregnancy may no longer previously were able to enter the bathtub work because of changes in without assistance may need a tub bench body size shape and weight and
66. ur particular needs but it s well you healthier and more worth the effort If the programs that were comfortable started during your rehabilitation are not working well for you let your doctor know For some people with SCI the thought of losing control of bladder or bowel function during sexual activity can cause anxiety for fear of embarrassment Such anxiety can make sex a worry rather than a pleasure It is important to address any concerns you may have about maintaining bladder or bowel control during sex You will probably want to talk to your health care provider in order to find out the best solutions for preventing problems and for dealing with them if they should occur If you have a regular sex partner you may want to talk to him or her as well sometimes talking about potential problems can alleviate anxiety For some men having a full bladder helps to get and keep an erection while for others a full bladder can be an obstacle to getting an erection You can use this knowledge about your body to determine when to empty your bladder and trial and error may be your best strategy However a full bladder may cause increased risk of AD if your injury is at T6 or above You should discuss this possibility with your doctor and develop a contingency plan in case autonomic dysreflexia should occur If you use an indwelling urethral catheter you need to take precautions to prevent it from becoming dislodged or getting contaminated duri
67. ve an erection and can help women to become sexually stimulated however they may cause autonomic dysreflexia in individuals with injuries at T6 and above Any device that causes friction on the skin can potentially lead to skin breakdown It s important to be aware if any red spots begin to develop Ask your health care provider about precautions to take to protect your skin prevent pro longed penile constriction and to prevent autonomic dysreflexia Female Reproductive Health and Fertility MENSTRUATION Sometimes women don t start menstruating again for a while after experiencing SCI usually about six months post injury so if you re at an age at which you are menstruating it s a good idea to get information about using feminine hygiene products before the end of your initial rehabilitation Your health care team can help you to figure out the best and easiest way to use tampons or sanitary pads with consideration to your level of dexterity and personal preferences Some women may just not be able to use their hands to manipulate sanitary products In this case your health care team can help you learn how to instruct attendants or partners on how to best help you with these products 18 Sexuality and Reproductive Health in Adults with Spinal Cord Injury Some women may experience more severe premenstrual and menstrual symptoms after SCI as compared to before their injury Symptoms such as menstrual cramps or a group of
68. wever it may be worth considering that having this kind of discussion may be uncomfortable in the short term but in the long run it can be very helpful and to remember that these types of demonstrations are always done with all parties fully clothed If you have a partner it may be helpful for that person to know how to help you get into the best and most comfortable positions for sexual activity When the male partner has SCI it can be easier to engage in intercourse when he is supported by a backrest and is in a seated position therefore the wheelchair is potentially a good location for sexual activity When the female partner has SCI it can be more difficult to use the wheelchair during sexual intercourse However other sexual activities while the woman is seated in the chair may include manual or oral stimulation use of sexual devices kissing touching and hugging In general staying in the wheelchair during sexual activity can be a good option for sexual activities especially if you have a high level injury because this eliminates the need to transfer and provides stability and support Always take measures to prevent slipping out of your chair tipping your chair or other mishaps during sexual activity Some safety measures you can take include securing chair locks using anti tip bars for stabilization making sure the power is off 26 Sexuality and Reproductive Health in Adults with Spinal Cord Injury if your w
69. what makes the most sense for you PREGNANCY Some research has shown that the quality of life for a woman with SCI increases after childbirth even though having a child creates additional demands and challenges the positive aspects usually outweigh the difficulties Women with SCI face unique challenges with pregnancy and unfortunately some health care providers do not provide enough information about becoming pregnant after SCI For example pregnant women with SCI have an increased risk of urinary tract infec tions may experience breathing problems and have a signifi cant risk of experiencing autonomic dysreflexia During pregnancy you will definitely need expert help to adjust your wheelchair as your body changes throughout preg nancy Some women with SCI need extra assistance during pregnancy for such activities as transferring in and out of the wheelchair dressing monitoring skin surfaces and bowel and bladder care Along with all the physical changes pregnancy also brings psychological changes due to hormonal fluctuations and the knowledge that soon you will be responsible for taking care of a baby this can be both wonderful and scary It is important to try to consider all these issues the good and the bad 20 Sexuality and Reproductive Health in Adults with Spinal Cord Injury and to talk to a specialist and other women with SCI prior to making the decision to become pregnant Having a child is also stressf

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