Chronic Illnesses and Disabilities

Affecting Women's Sexuality

The treatment of an acute medical condition usually does not require special consideration of the patient’s sexual functioning, unless it is the primary concern (eg, sexually transmitted infections, HIV/AIDS, and gynecological or reproductive disorders). In life-threatening conditions, sexual concerns usually have low or no priority at all. However, if a medical condition develops into a chronic one, an extended range of pertinent issues includes sexuality.

Take for instance sexuality issues in women with breast cancer. During the initial stages of breast cancer treatment, the focus is on survival. Once the female cancer survivor has completed treatment, possibly including mastectomy and reconstructive surgeries, adjustment to this new situation may strongly affect sexuality. The female patient may have to adjust to a changed cosmetic appearance and her energy levels may be drained from chemotherapy or radiation therapy, leaving little room for sexual activity; yet, her need for closeness and intimacy may be stronger than ever.

Table 1. Definition of the Term “Disability”
• Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genito-urinary, blood and lymphatic, skin, and endocrine.

• Any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.

Women living with disabilities also frequently experience negative effects on their sex lives. An estimated 30 million women in the United States live with disabilities and many others have chronic illnesses Unfortunately, many health professionals are ill-prepared to counsel patients with chronic illnesses or disabilities with respect to their sexual functioning and response. In this article, we will provide a general overview of how common disabilities and chronic medical conditions may affect women’s sexuality as well as selected current resources for patients and professionals.

Table 2. Chronic Illnesses and Disabilities With an Impact on Sexuality Autism • Cancer • Cerebral Palsy • Developmental Disability • Diabetes • Hearing Impairment • Heart Disease • Lung Disease • Loss of Limb • Multiple Sclerosis • Postpolio Syndrome • Psychiatric Conditions • Rheumatoid Arthritis • Spinal Cord Injury • Stroke • Traumatic Brain Injury • Visual Impairment.

General Overview

Common disabilities and chronic medical conditions with an impact on sexuality are summarized in Table 2. In general, the primary effects of various conditions on sexuality may vary, while secondary and tertiary effects often remain the same. To clarify this further, we will use multiple sclerosis (MS) as an example.

Multiple sclerosis affects women’s sexuality at three levels Primary MS-related sexual dysfunctions occur as a result of MS-related neurological changes that directly affect sexual feelings and/or sexual response. These include decreased libido, altered genital sensation (eg, numbness, pain, burning, or discomfort), decreased vaginal lubrication, and decreased frequency or intensity of orgasm. Secondary sexual dysfunctions are due to MS-related physical changes, which affect the sexual response indirectly. These may be caused by MS symptoms that do not directly include nervous system pathways related to the genital system. Examples are fatigue, muscle tightness, weakness, spasms, bladder and bowel dysfunction, incoordination, difficulty with mobility, side effects of MS medication, cognitive difficulties, numbness, pain, burning, and discomfort in non-genital areas of the body. Tertiary sexual dysfunctions are related to psychological, emotional, social, and cultural aspects of MS that affect sexuality. These include negative changes in self-image, mood, or body-image; depression and anger; feelings of being less sexy or attractive, less feminine, or less confident about one’s sexuality; fears of being rejected sexually; worries about sexually satisfying one’s partner; difficulties communicating with one’s partner; fears of isolation and abandonment, guilt, changing gender roles; and feelings of dependency (8,9). This summary of possible effects of MS on sexuality should help health providers identify potential concerns of the female MS patient. Obviously, symptoms vary from patient to patient and even from time to time in one particular individual. Many of the symptoms apply to other disabilities and chronic illnesses as well. In the following, we will discuss various treatment options.

Table 3.
Primary Sexual Dysfunction: Occurs as a result of MS-related, neurological changes that directly affect sexual feelings and/or sexual response.

Decreased libido • Altered genital sensation (eg, numbness, pain, burning, or discomfort) • Decreased vaginal lubrication • Decreased frequency or intensity of orgasm

Secondary Sexual Dysfunction: Multiple sclerosis-related physical changes, which affect the sexual response indirectly. Caused by MS symptoms that do not directly include nervous system pathways related to the genital system.

Fatigue • Muscle tightness • Weakness • Spasms • Bladder and bowel dysfunction • Incoordination • Difficulty with mobility • Side effects of MS medication • Cognitive difficulties • Numbness, pain, burning, or discomfort in non-genital areas of the body

Tertiary Sexual Dysfunction: Psychological, emotional, social, and cultural aspects of MS that impact sexuality.

Negative changes in self-image, mood, or body-image • Depression and anger • Feeling less sexy or attractive • Feeling less feminine • Feeling less confident about one’s sexuality • Fear of being rejected sexually • Worries about sexually satisfying one’s partner • Difficulty communicating with one’s partner. • Fear of isolation and abandonment, guilt, changing gender roles, and feelings of dependency.

Treatment Options

Decreased Libido

Decreased libido is one of the most common concerns that patients raise with sexual health professionals and also with general practitioners  thorough history usually provides important insights into what the nature of the desire problem might be. The practitioner should explore whether the decreased libido may be related to medication side effects, depression, hormonal issues, or body-image concerns. Sometimes reasons may be more complex, such as when the woman has a past history of sexual abuse. Some causes for low sexual desire include the factors listed as tertiary sexual dysfunctions in Table 3 and mentioned above. Other reasons for why someone may lack sexual desire include lack of attraction to a partner, anger in the relationship and other interpersonal conflicts, fear of closeness, vulnerability or intimacy, and passive-aggressive solution to power imbalance. Treatment will depend on the underlying cause.

Altered Genital Sensation

Altered genital sensation may challenge the woman to explore her body for alternative, sensual areas. If she has a partner, the couple can explore this together. Generally, three options for increasing sexual communication and sexual pleasure are as follows: (1) sensate focus exercises;2) pleasure mapping  (3) charting the personal extragenital matrix (15). These techniques are all ways to explore various body parts without an immediate focus on the genitals. Exploration can include using different kinds of manual touch like stroking, rubbing, and squeezing; different kinds of oral touch like kissing, sucking, and nipping; and incorporating lotions, oils, and powders, feathers, silk, or sexual tools such as vibrators. It is best to set time aside to explore a certain portion of the body at a time. During that time, the focus should be on stimulation to the chosen area without any plans of moving to any other areas or of having sexual intercourse. These exercises place the emphasis on intimacy and pleasure over the goal of performance and orgasm. Everybody, whether disabled or nondisabled, has the potential for sexual growth through these activities.

Uncomfortable genital sensory disturbances, including burning, pain, or tingling can sometimes be relieved with prescription medications, such as carbamazepine or phenytoin

creased Frequency/Intensity of Orgasm

Decreased frequency and intensity of orgasm may be overcome with the use of vibrators, which provide intense stimulation of genital sensory nerves. This option may prove especially helpful for women who suffer from MS, spinal cord injury (SCI), or diabetes-induced neuropathy.

Decreased Vaginal Lubrication

Decreased vaginal lubrication can be relieved with water-based lubricants, such as KY Jelly or Astroglide, applied during sexual activity. Vaseline or other petroleum-based products increase the chance of infection and will deteriorate and reduce the effectiveness of condoms. Use of lubrication applies whether inserting a penis, a vibrator, or any other object into the vagina or rectum. Another option is the over-the-counter vaginal cream Replens, which is applied at regular intervals, independent of sexual activity. In some cases, hormonal treatment may be indicated to improve vaginal lubrication.

Fatigue/Weakness

Fatigue and weakness can be by-passed to certain degrees. The female patient may be able to identify certain times during the day when she has the most energy, often dependent on sleep patterns and administration of medication. Energy conservation techniques include taking naps and using motorized scooters or other ambulation aids (8). Expectations for spontaneous sexual encounters should be re-directed to allowing more planning for sexual activity. There are many alternatives to intercourse for expressing physical desires, such as mutual masturbation, holding, kissing, oral and manual pleasuring (16) Greg McGreer, PhD, sex therapist and MS patient, offers the following advice:“Have sex even if you, the MS patient, do not feel like it, but get into the experience. Think of energy like money. You only have so much, cannot buy everything, therefore spend it on what is important.”

Muscle Tightness

Muscle tightness can be relieved in hot tubs, saunas, steam rooms and even tanning beds. The heat may ease stiff and sore muscles and also loosen up joints. It is important to consider that overheating may be a concern for the multiple sclerosis patient. Another condition requiring careful consideration is autonomic dysreflexia: a sudden, potentially dangerous rise in blood pressure sometimes seen in patients with spinal cord lesions at or above T6.

Spasms

Spasms can be avoided by taking antispasmodic medication prior to sexual activity.

Bladder/Bowel Dysfunction

Bladder and bowel dysfunction can be managed with use of catheters or possibly ostomies. Avoiding intense genital or anal stimulation when having a full bowel will help avoid an unscheduled bowel movement during sexual activity. Emptying the bladder before sexual activity can sometimes prevent voiding during sex. Protective sheets or towels may lessen someone’s concern about bowel or bladder release. Women with indwelling catheters can leave the catheter in place during intercourse, taping it to the lower abdomen beforehand. Plenty of water based lubricant should be used when having intercourse and leaving the catheter in place. Pelvic floor physiotherapy sometimes may improve bladder and bowel control. Anticholinergic medications help manage incontinence by reducing spasms of the bladder and urethra.

Pain During Sex

Pain during sex can be managed by scheduling sexual activities when symptoms are least problematic; taking pain-controlling or antispasmodic medications prior to sexual activity; experimenting with sexual positions and activities that minimize painful intercourse; including oral or gentle manual genital stimulation; telling the partner exactly what feels good and what is painful; and spending time engaged in other sexual, erotic and intimate activities that do not involve intercourse or orgasm.

Women With SCI

Spinal cord injury can affect the female patient’s sex life and fertility. Although these considerations are drawn from the literature on women with SCI, many are applicable to other female patients with mobility impairment and/or decreased sensation.

Conception, Pregnancy, Delivery

Spinal cord injury does not physiologically interfere with a woman’s ability to conceive. Although menstruation may stop for six to eight months after SCI, it is still possible to get pregnant. Regular menstrual cycles usually resume in time. Carrying a baby to term involves similar risks to any pregnancy. However, there is increased risk of bladder infection, pressure sores, hypertension, and, for women with injuries at or above T6, automatic dysreflexia. All these risks are manageable with a knowledgeable physician. Balancing and transferring weight may also present an increased challenge. With regard to delivery, women can deliver vaginally despite lack of voluntary muscle control. Breast-feeding is still a viable option although adaptive equipment such as a sling or harness to help hold the baby may be necessary.

Parenting

Spinal cord injury does not prevent a woman from being an active parent. An occupational therapist can help choose the adaptive equipment (accessible cribs, changing tables, carrying slings, etc.) one may need. If someone at the time of injury already is a mother of an older child, she can still play an active role in parenting by giving love, support, and direction and finding mutual ways to connect.

Contraception

All options are available to couples interested in contraception. However, a few carry increased risks or may present some specific physical difficulties. The intrauterine device presents increased risk of urinary tract infections and there is decreased ability to self-monitor for perforated uterus or infection for women with loss of sensation. Diaphragms may present a problem with insertion, and atrophy in the muscles surrounding the vagina may create a problem with fit and decrease the efficacy of this method. A partner can assist in inserting the diaphragm if both are comfortable with the situation. Oral contraceptives were once believed to present increased risk of deep vein thrombosis for women with SCI. However, to our knowledge there is no research on newer low-dose estrogen or progesterone-only contraceptives in this population. The woman should consult a health care professional familiar with SCI to help choose the best method. The male condom in conjunction with a contraceptive jelly is still one of the easiest and safest methods of contraception, and it helps prevent the transmission of infections.

Sexual Pleasure

It is of importance to note the self-reported incidence of orgasm in men and women with SCI is consistently around 50%. (19) Reports of orgasm have not been strongly associated with level or completeness of the SCI. Many people report an area of hypersensitivity above the level of injury that, when stimulated, results in sexual arousal and sometimes orgasm. Other people report having orgasms as the result of stimulation of the ears, neck, breasts, or through fantasy. Orgasms in people with SCI usually require a much longer period of stimulation than before injury. It is also important to note that the majority of individuals with SCI report sexual satisfaction even if they do not experience orgasm.

Conclusion

A chronic illness or disability does not inevitably herald the end of someone’s sex life. Many female patients list sexual expression and intimacy as important quality of life factors. It is of utmost importance that health care professionals involved in the care of disabled and chronically ill individuals are able to address sexual concerns. In this article we have presented an overview of some of the most frequent concerns and various treatment options. For those cases that require referral to sex counselors or therapists, we have listed the American Association of Sex Educators, Counselors, and Therapists (AASECT) in the resource section. AASECT facilitates contact to certified sexual health professionals in the United States and some other countries. Finally, we have listed some of our favorite resources that might prove useful to professionals as well as patients in the overall goal of facilitating sexual health.

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