Sexual function among women with disabilities Carina Joy O’Neill, DO

Data from the 2000 US Census revealed that of almost 50 million Americans with disabilities, more than 25 million were women. 1 Some of these women are born with disabilities. In other women, the dis - abilities develop during childhood (eg, cerebral palsy, spina bifida) or are acquired later in life as a result of accident or illness (eg, chronic pain, multiple sclerosis, spinal cord injury, stroke). The present article focuses on women with physical disabili - ties and the concerns of these women regarding sexuality. Sexual function is an important domain of quality of life and is vulnerable to dis - ruption and dysfunction when a physical disability is present. 2 Healthy sexuality is difficult to define, partly because of cultur - al, religious and personal values, all of which contribute to one’s expression of sex - uality. Sexuality does not comprise only intercourse; it also comprises physical and verbal expressions of warmth, tenderness, love and affection. 3

Lack of communication with patients The reasons for altered sexuality after a dis - ability are complex, and they are rarely discussed with patients. In a study by Teal and Athelstan 4 about sexuality after spinal cord injuries, sexuality was found to be a most of these young people would have typically lack training in how to address universal concern and an unexpressed anx - appreciated such counseling. 6 Although sexuality with their patients. Therefore, iety of the women in the study. However, is not restricted to per - even when we discuss these issues with our 85% of the women stated that they had sons with disabilities, physical disabilities patients, we might not have enough knowl - never discussed sexuality with their physi - substantially raise the incidence of sexual edge to adequately answer their questions cians, and 65% of the women stated that dysfunction. Zorzon et al 7 reported that or provide appropriate counseling. 8 they had not discussed sexuality with any - the incidence of sexual dysfunction is 73% one, including their partners. 4,5 in individuals with multiple sclerosis, Congenital versus Women with congenital disabilities also 39% in those with chronic disease, and acquired disabilities report a lack of communication about sex - 13% in the general population. Development of sexuality in individuals uality. Studies suggest that few adolescents The personal and private nature of sex who have had disabilities since birth can and young adults with spina bifida report produces a reticence among patients to be expected to be substantially different having discussed sexual relationships with discuss their sexual concerns with physicians. than development of sexuality in persons a health professional or counselor, although Furthermore, health care professionals who become disabled as adults. Social and

11 environmental barriers—such as inadequate sulting from disability or illness) and psy - traumatic brain injury) may have difficulty social skills, social isolation, lack of oppor - chosocial causes. 10 No list can account for achieving . Women with these con - tunity, or lack of sexual knowledge—among every type of disability, but some causes of ditions may also experience orgasm individuals with early-onset disabilities lead sexual dysfunction include the following: 10 differently than they did before the condi - to decreased sexual activity compared with tions developed. For example, they may the level of sexual activity among the able- Organic causes experience increased spasticity followed by bodied population. 3 Individuals who have Ⅲ Neurogenic regulation difficulties prolonged relaxations, or they may experi - late-onset physical disabilities resulting from caused by brain or spinal cord injury ence an unusual warm sensation. 13 such conditions as multiple sclerosis, spinal Ⅲ Pain is decreased by serotonin and cord injury, and stroke report various Ⅲ Spasticity increased by dopamine. Thus, medications changes in their sexual behaviors. These Ⅲ Bladder or bowel incontinence that affect the levels of these substances changes typically include decreased sexual Ⅲ Cognitive challenges (eg, anger, can also affect sexuality. For example, se - interest, sexual satisfaction, and self-esteem, distractibility, inattention) lective serotonin reuptake inhibitors have as well as physiologic dysfunction. 3 Ⅲ Fatigue a 50% to 70% chance of delaying orgasm, Ⅲ Weakness even if no neurologic disease is present. 19 Four stages of sexual response Ⅲ Sensory changes Difficulty achieving orgasm after de - Normal sexual function can be divided in - veloping a disability is a common source to four stages: 1) excitement, 2) plateau, Psychosocial causes of sexual dysfunction. Sipski et al 13 com - 3) orgasm, and 4) resolution. 9 Ⅲ Depression/anxiety pared women with spinal cord injuries to The excitement (ie, ) stage Ⅲ Personality changes able-bodied women in terms of their abil - is characterized by increased heart rate, Ⅲ Fear ity to achieve orgasm in a laboratory blood pressure, and respiration—respons - Ⅲ Communication issues setting. Patients used audiovisual es that can result from either touch (ie, with and without manual stimulation. reflexogenic) or imagination (ie, psy - Effects of sexual dysfunction Results showed that 52% of the women chogenic). 9 In women, the excitement on sexual response with spinal cord injuries were able to stage is also defined by , During the excitement stage, female sexual achieve orgasm, compared to 100% of the swelling of the , and clitoral . arousal disorder is associated with inability able-bodied women. Of note, the rate of The duration of this stage can range from to attain or maintain the lubrication and arousal in each group was similar. 13 a few minutes to a few hours. swelling response. This disorder can stem Dysfunction in resolution occurs when The plateau stage is described as a pleas - from emotional causes, such as anger or fear, the sexual interaction is unsatisfying. This urable sense of well-being. 9 This stage can as well as physical changes associated with dissatisfaction may result from a number be brief or prolonged. the disability, such as insensate erogenous of reasons, such as pain, a demanding The orgasm stage is defined as supreme zones or low estrogen levels. partner, and feelings of shame because of pleasure followed by a feeling of well-being Interestingly, the demarcation between the disability. 14 and satiation. 9 Orgasm arises from the insensate and sensate skin may become a new brain’s limbic system. In women, orgasm erogenous zone, which patients should be Special considerations includes a motor response involving sym - encouraged to explore either themselves or Spasticity of a woman’s pelvic floor and ad - pathetic contractions. with a partner. Difficulties achieving vaginal ductor muscle can restrict penile penetration. Resolution is the important bonding lubrication may be addressed by increased Premedication with benzodiazepine can re - stage of the sexual response, helping to stimulation or by use of lubrication jelly. 11 duce such spasticity. Patients with neurogenic develop and maintain emotional intimacy Dysfunction in the plateau stage may bowel or bladder should empty the bowel between partners. This stage lasts about be prolonged or abbreviated by being in - and bladder before sexual activity in order to 5 to 15 minutes and is followed by return sensate in the genital region or other regions avoid incontinence during intercourse. 12 to the pre-arousal state. 9 of arousal. Dysfunction in this stage may Patients with spinal cord injuries should void also be associated with anxiety—and even or self-catheterize after coitus to reduce the Causes of sexual dysfunction with distractibility in individuals with brain risk of urinary tract infection. 12 Normal sexual function depends on the in - injury or stroke. 12 Sexual dysfunction in For most women with disabilities, sexu - teraction between libido and potency. The women who do not progress through the al interaction is safe. Many patients who sudden onset of disability and associated is - plateau stage is a form of anorgasmia. have had strokes are fearful that participat - sues, such as medical illness, pain and stress, The brain is the most important organ ing in sexual activities might lead to another can contribute to decreased libido. in achieving orgasm. Multiple loci responsi - stroke, but findings from a study by Although the potential causes of sexual dys - ble for sexual activity arise from the brain’s Ebrahim et al suggest is function after a disability are broad, they limbic system. Women with conditions that not likely to result in substantial increase in can be separated into organic causes (re - affect the brain (eg, multiple sclerosis, stroke, risk of strokes. 20 However, if a patient had

12 a hemorrhagic stroke from an aneurysm symptoms persist, the patient should con - contraceptive methods that confer protec - and is awaiting surgery, sexual interactions tact emergency response. 13,15 tion against sexually transmitted diseases. 1 should be avoided until after surgery. For women with spinal cord injuries Contraception Ⅲ Contraceptive foam higher than the level of the T6 vertebra, a Women with disabilities make their deci - Foam is a readily available and accepted potentially life-threatening condition can sions about having children in the same contraceptive method. However, contra - occur after orgasm. Autonomic dysreflexia manner as do able-bodied women. 16 For ceptive foam is only moderately effective at is an acute syndrome of massive sympa - women who are of childbearing age and preventing , and it does not pro - thetic discharge resulting from increased are not ready for children, clinicians should tect against sexually transmitted diseases. 1 autonomic activity after a stimulus. Such a discuss options. In many cases, stimulus could be sexual intercourse and women with disabilities are not offered Ⅲ Diaphragm orgasm, extended bladder or bowel evacu - contraception because their physicians er - A woman requires dexterity to place a ation, or any painful stimuli that does not roneously presume them to be asexual. The diaphragm, though her partner can be cause injury. 13 Signs of autonomic dysre - following special considerations must be trained to insert the diaphragm before in - flexia include pounding headache, taken into account when discussing birth tercourse. If a woman has weakened pelvic sweating, nasal congestion, flushing, control options with disabled women. 1,17 floor muscles, the diaphragm may not hold piloerection and reflex bradycardia. in place, rendering it ineffective as a birth Autonomic dysreflexia is a serious condi - Ⅲ Coitus interruptus control option. 1 In addition, diaphragms tion that can lead to confusion, visual The literature does not support the use of are associated with increased risk of uri - disturbance, loss of consciousness, en - this method, also known as withdrawal, as nary tract infections, which may be of cephalopathy, intercerebral hemorrhage, an effective means of birth control. 1 special concern for women with disabili - seizure, atrial fibrillation, flash pulmonary ties, particularly those who are predisposed edema and even death. 15 Ⅲ to autonomic dysreflexia. 17 A patient should be informed of the are a popular contraceptive choice signs of autonomic dysreflexia and advised because they are readily available. For a Ⅲ awareness that, if it occurs, she should sit upright with woman who has an indwelling catheter, this (rhythm method) her feet over the side of the bed. If possi - birth control method would not be recom - Contraceptive methods based on monitor - ble, she should also monitor her blood mended because the device could tear the ing of body temperature will not be reliable pressure and catheterize her bladder. If condom. Condoms are one of the few in women who have spinal cord injuries.

13 Ⅲ Oral contraceptive The most cited concern regarding use of oral contraceptives by women with recent-onset immobility is the risk of thromboembolism or deep vein thrombosis. With the use of pills containing low-dose estrogen, there is a low incidence of deep vein thrombosis; although cigarette smoking aggravates the risk of deep vein thrombosis and thromboembolism. Use of progestin-only pills can be consid - ered for patients in whom estrogen is contraindicated, with the understanding that these pills are not as effective as pills containing estrogen and that there is little margin for error in the dosage schedule. 1 Patients must be able to maintain dos - ing and have sufficient manual dexterity to open medication packaging to take oral contraceptives. Continuous cycling by eliminating the placebo week of the contra - ceptive medication to avoid can be considered for patients who have dif - ficulty with menstrual hygiene. 1

Ⅲ Tubal ligation This surgical procedure is a permanent birth control option. Women will contin - ue to menstruate after tubal ligation, and this option may not be appropriate for women who have difficulties with men - strual hygiene. 1

Ⅲ Va sectomy For a woman who has only one sexual part - ner and who wants permanent birth control, vasectomy may be considered as a Nor will such methods be reliable in be carefully evaluated before they use this contraceptive option. 1 women who are at risk for frequent infec - contraceptive method because they may tions, which can affect body temperature. 1 not feel symptoms of pelvic infection or Physical and ectopic pregnancy. Irregular bleeding with issues Ⅲ Hysterectomy the use of intrauterine devices can pose dif - Health care providers should not assume This surgical procedure is another perma - ficulties with menstrual hygiene. 1 that women with disabilities are no longer nent birth control option. Women with targets for physical or sexual abuse, and the disabilities are more likely to undergo hys - Ⅲ Medroxyprogesterone injection providers need to be aware of the physical terectomy than are women without Medroxyprogesterone injection is a popu - and psychological signs of trauma in their disabilities. Hysterectomy, rather than tubal lar contraceptive option among women patients. In one national mail survey, no ligation, is used for sterilization in those with disabilities. Its use may initially in - difference was found between the propor - women who have trouble managing their volve some irregular bleeding, which can tion of women with physical disabilities and menstrual hygiene. 1 be of concern for patients who have diffi - the proportion of able-bodied women who culties with menstrual hygiene. However, reported being physically abused (35% in Ⅲ Intrauterine device amenorrhea occurs after the first few men - both groups) or sexually abused (40% in The use of intrauterine devices may be con - strual cycles. An increased risk of both groups). 18 Intimate partners were the sidered for women with disabilities, but osteo porosis must also be considered with primary offenders in both groups of women. women with decreased sensation should medroxyprogesterone injection. 1 However, women with physical disabilities

14 were more likely to experience physical or for activities of daily living, which include 9. Cunningham FG, Grant NF, Leveno KJ, sexual abuse by attendants or caregivers than dressing and undressing, eating, mobility (as Gilstrap LC, Hauth JC, Wenstrom KD. Williams Obstetrics. 21st ed. New York, NY: were able-bodied women. In addition, opposed to being bedridden), personal McGraw Hill Companies; 2001. women with physical disabilities experienced hygiene, transferring from bed to chair and abuse for significantly longer periods than back to bed, and voluntarily controlling 10. Christopherson JM, Moore K, Foley FW, Warren KG. did women without physical disabilities. urinary and fecal discharge. A comparison of written materials vs materials and Standard abuse assessment tools that counseling for women with sexual dysfunction and multiple sclerosis. J Clin Nurs. 2006;15(6):742-750. focus on physical or sexual abuse from in - Final notes timate partners are insufficient for assessing Sexual function among women with 11. Fraser C, Mahoney J, McGurl J. Correlates of abuse in women with disabilities. Abuse to disabilities is complex. Sexuality is an impor - sexual dysfunction in men and women with multiple women with disabilities more likely will be tant domain of quality of life. Women with sclerosis. J Neurosci Nurs. 2008;40(5):312-317. identified if disability-specific questions physical disabilities often do not discuss sex - 12. Glass C, Soni B. ABC of sexual health: are added to the assessment. Compared uality with either their physician or their sexual problems of disabled patients. BMJ. with use of the standard questions, the use partner. Physicians should start the dialogue 1999;318(7182):518-521. of the following questions, consisting of with patients. Psychological, social and phys - two standard physical and ical factors exert a strong impact on the sexual 13. Sipski ML, Alexander CJ, Rosen RC. questions and two disability-specific ques - functioning of women with physical disabil - Orgasm in women with spinal cord injuries: a laboratory-based assessment. Arch Phys Med 3 tions, revealed an additional 2% of women ities. A better understanding of the barriers Rehabil. 1995;76(12):1097-1102. with disabilities who suffered abuse. 18 to fulfilling sexual interactions will allow physicians to discuss these issues with their 14. Redelman MJ. Sexual difficulties for persons Ⅲ Within the past year have you patients and help address issues as they arise. with multiple sclerosis in New South Wales, been hit, slapped, kicked, pushed, Australia. Int J Rehabil Res. 2009;32(4):337-347. shoved, or otherwise physically References 15. Braddom RL, Buschbacher RM, Dumitru D, hurt by someone ? 1. Kaplan C. Special issues in contraception: Johnson EW, Matthews D, Sinaki M. Physical caring for women with disabilities. J Midwifery Medicine and Rehabilitation. Philadelphia, PA: Ⅲ Within the past year has anyone Womens Health. 2006;51(6):450-456. WB Saunders Company; 2000. forced you to have sexual activities? 2. Ambler N, Williams AC, Hill P, Gunary R, 16. Baker ER, Cardenas DD. Pregnancy Cratchley G. Sexual difficulties of chronic pain in spinal cord injured women [review]. Ⅲ Within the past year has anyone patients. Clin J Pain. 2001;17(2):138-145. Arch Phys Med Rehabil. 1996;77(5):501-507. prevented you from using a wheelchair, cane, respirator, 3. Nosek MA, Rintala DH, Young ME, et al. 17. Charlifue SW, Gerhart KA, Menter RR, Sexual functioning among woman with physical or other assistive device? Whiteneck GG, Manley MS. Sexual issues disabilities. Arch Phys Med Rehabil. of women with spinal cord injuries. Paraplegia. 1996;77(2):107-115. 1992;30(3):192-199. Ⅲ Within the past year has anyone you depend on refused to help you 4. Teal JC, Athelstan GT. Sexuality and spinal 18. McFarlane J, Hughes RB, Nosek MA, Groff JY, with an important personal need, cord injury: some psychosocial considerations. Swedlend N, Dolan Mullen P. Abuse assessment Arch Phys Med Rehabil. 1975;56(6):264-268. such as taking your medicine, screen-disability (AAS-D): measuring frequency, type, and perpetrator of abuse toward women getting to the bathroom, getting 5. Sadoughi W, Leshner M, Fine HL. with physical disabilities. J Womens Health out of bed, bathing, getting dressed, Sexual adjustment in a chronically ill and Gend Based Med. 2001;10(9):861-866. or getting food or drink? physically disabled population: a pilot study. Arch Phys Med Rehabil. 1971;52(7):311-317. 19. Montejo AL, Llorca G, Izquierdo JA, Clinic visits are typically the only time Rico-Villadermoros F. Incidence of sexual 6. Lassmann J, Garibay Gonzalez F, dysfunction associated with antidepressant that disabled women come into contact Melchionni JB, Pasquariello PS Jr, Synder HM III. agents: a prospective multicenter study of 1022 with health care providers. Thus, there is a Sexual function in adult patients with spina outpatients. J Clin Psychiatry. 2001;62(suppl 3):10-20. need for disability-specific routine assess - bifida and its impact on quality of life. ment for physical and sexual abuse in all J Urol. 2007;178(4 pt 2):1611-1614. 20. Ebrahim S, May M, Shlomo YB, et al. women with disabilities. Sexual intercourse and risk of ischaemic stroke 7. Zorzon M, Zivadinov R, Bosco A, et al. and coronary heart disease: the Caerphilly Study. In many states, if a physician suspects that Sexual dysfunction in multiple sclerosis: a case- J Epidemiol Community Health. 2002:(56):99-102. a patient with a disability is a victim of abuse controlled study. I. Frequency and comparison of or neglect, the physician is legally obligated groups. Mult Scler. 1999;5(6):418-427. Carina Joy O’Neill, DO, is an instructor in physical to report the case to state law enforcement medicine and rehabilitation at Harvard Medical 8. Solursh DS, Ernst JL, Lewis RW, et al. School. She serves as medical director at Spaulding authorities. A disabled person, for such legal The education of physicians in Rehabilitation Outpatient Center in Braintree, purposes, is defined as any person who is to - North American medical schools. Int J Impot Res. Massachusetts and is affiliated with Massachusetts tally or partially dependent on other people 2003;15(suppl 5):S41-S45. General Hospital.

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