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Sexual Health & Intimacy

Chronic Illnesses and Disabilities Affecting Women’s Sexuality

Annette F. Owens, MD, PhD; Mitchell S. Tepper, PhD, MPH

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.^1-6 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.

Women living with disabilities also frequently experience negative effects on their sex lives. An estimated 30 million women in the United States live with disabilities⁷ (Table 1) and many others have chronic illnesses (Table 2). 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.

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^8,9 (Table 3). 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.

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.^10,11 A 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. The book Love Skills¹² provides an excellent resource for health practitioners and patients, as it specifically describes various exercises and suggestions for self-help step by step.

Generally, three options for increasing sexual communication and sexual pleasure are as follows: (1) sensate focus exercises described by Masters and Johnson¹³; (2) pleasure mapping described by Stubbs¹⁴; and (3) charting the personal extragenital matrix described by Whipple and Ogden.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.⁸

Decreased 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 pleasuring¹⁶ 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.” ¹⁷

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.⁸

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.¹⁸

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.

Resources

Organizations

Sexuality Information and Education Council of the United States (SIECUS); Phone: (212) 819-9770, Fax: (212) 819-9776; email: http://www.siecus.org.
This key organization provides links to current sexuality resources and educational materials about sexuality and religion, parenting, teenagers, disability, etc.

The American Association of Sex Educators, Counselors, and Therapists (AASECT); Phone (804) 644-3288, Fax (804) 644-3290; http://www.aasect.org.
AASECT facilitates contact to certified sex educators, counselors and therapists in the United States and other selected countries.

Disability Web sites

http://www.ICan.com has a good selection of sexuality and relationship issues.

http://www.SexualHealth.com provides articles and frequently asked questions and answers about disability and chronic illness. Some of the over forty sexual health experts associated with the site have a disability and can give first hand advice.

Sexual Aids For Disabled Individuals

Sinclair Institute; http://www.BetterSex.com; (800) 955-0888

Xandria Collection; http://www.Xandria.com; (800) 242-2823

http://www.MyPleasure.com has a good disability section by Linda Mona.

Books

Choices: A Guide to Sex Counseling with Physically Disabled Adults
Maureen E. Neistadt and Maureen Freda. Written for rehabilitation professionals who provide sexuality counseling, this book contains guidelines for limited sexuality counseling and examines issues of intimacy and communication, as well as the sexual response cycle. This book discusses functional and sexual difficulties caused by disabilities and the impact of disability on social issues such as privacy, dating, marriage, and childbearing. Reading and resource lists are included.

Intimate Resources for Persons With Disabilities
Wheeler, SD, Crabtree, L.

Living and Loving: Information About Sexuality and Intimacy
Arthritis Foundation. This book offers tips for solving problems when arthritis interferes with sexuality. It includes illustrations of comfortable sexual positions for individuals with arthritis.

Reproductive Issues for Persons With Physical Disabilities
Florence P. Haseltine, Sandra S. Cole, and David B. Gray, editors. This resource features contributions from both consumers with disabilities and health professionals from a variety of backgrounds. Chapters focus on dispelling myths about sexuality and disability and exploring sexual issues that challenge people with disabilities. Topics include basic information about congenital and acquired physical disabilities, reproductive rights and opportunities, sexual dysfunctions, sexually transmitted diseases, reproductive physiology, sexual development, health care needs, fertility, birth control, adoptions, pregnancy, labor and delivery, and parenthood. Personal stories of people with disabilities appear throughout the book, and various clinical and policy issues are discussed.

The Sensuous Heart: Guidelines for Sex After a Heart Attack
Suzanne Cambre. This cartoon-style booklet explains the emotional and physical needs of persons who have had heart attacks or heart surgery. It answers questions about frequency of sexual activity; suggests comfortable positions; and covers the effects of alcohol, prescribed drugs, stimulants, and illegal drugs.

Sexual Function in People With Disability and Chronic Illness: A Health Professional’s Guide
Marca L. Sipski (Editor), Craig Alexander.

Sexual Rehabilitation of the Spinal-Cord-Injured Patient
J. F. J. Leyson (Editor). Twenty-eight experts in the fields of sexuality, sexual dysfunction, and spinal cord injury contributed to this practical guide to the management of every type of sexual dysfunction arising from spinal cord injury. The book also explores fertility, pregnancy, and sexual orientaiton among individuals with spinal cord injury.

Sexuality After Spinal Cord Injury: Answers to Your Questions
Stanley H. Ducharme & Kathleen M. Gill.

Sexuality & Cancer: For the Woman Who Has Cancer and Her Partner
Leslie R. Schover. This booklet offers information about cancer and female sexuality. Information includes the effects of cancer and treatment on sexuality, keys to staying sexually healthy during cancer treatment, how to seek professional help, and a list of resources.

Sexuality And Chronic Illness: A Comprehensive Approach
Leslie R. Schover and Soren Buus Jensen. Using an integrative biopsychosocial approach, this volume reviews basic skills needed to comfortably discuss sexuality with chronically ill patients, assess sexual problems through both psychological and medical approaches, and create a systematic treatment plan.

REFERENCES

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3. Harpham WS. After cancer. A guide to your new life. HarperPerennial; 1995.
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5. Schover LR. Sexuality and fertility after cancer. New York: John Wiley & Sons; 1997.
6. Show Me. A photo collection of breast cancer survivor’s lumpectomies, mastectomies, breast reconstructions and thoughts on body image. Presented by the Breast Cancer Support Group of the Penn State Geisinger Health System.
7. Welner SL, Simon JA, Welner B. Maximizing health in menopausal women with disabilities. Menopause. 2002;9(3):208-219.
8. Foley FW, Sanders A. Sexuality, multiple sclerosis, and women. MS Management. 1997;4(1):1-10.
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14. Stubbs, KR. Romantic Interludes: A Sensuous Lovers Guide. Larkspur, Calif, Secret Garden; 1988.
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17. McGreer G. Possible Effects Of Multiple Sclerosis on A Person’s Sexuality, http://www.SexualHealth.com, accessed December 5, 2002.
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19. Tepper M. Lived Experiences that Impede or Facilitate Sexual Pleasure and Orgasm in People with Spinal Cord Injury, Graduate School of Education. Philadelphia Pa, University of Pennsylvania; 2001.

Annette F. Owens, MD, PhD, is chief medical officer and cofounder of The Sexual Health Network, Inc, and http://www.sexualhealth.com. She is an AASECT-certified sex counselor at the Charlottesville Sexual Health and Wellness Clinic in Virginia. She can be contacted by phone (434) 971-7355, or fax (434) 295-0790, or email info@cvillewellness.com. Mitchell S. Tepper, PhD, MPH, is founder and president of The Sexual Health Network, Inc, and http://sexualhealth.com. He also publishes a continuing sexuality education and training curriculum for healtcare professionals who work with disabled patients. Contact him by email for more information at drtepper@sexualhealth.com.

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