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SCI Forum Report


Women and SCI

Health and Wellness: Opportunities and Challenges

Presented by Maria Reyes, MD, Assistant Professor of Rehabilitation Medicine,
University of Washington, on November 8, 2005.

Women's Health Issues-Research Priorities

Until recently in the medical research field, women's health was thought to differ from men's health primarily in the reproductive domain, and consequently there was little examination of the possibility of other health concerns unique to women. In September the Journal of the American Medical Association (JAMA) acknowledged the need to correct his disparity:

"Fifteen years ago, women's health research primarily focused on reproductive health. Although women were not always excluded from clinical studies of conditions outside the reproductive system, clinical research involving conditions that affect both women and men did not routinely seek to identify differences between women and men." and ".research priorities in women's health must be comprehensive and interdisciplinary and should include not only clinical studies but also the full spectrum of research, from molecular and genetic studies to those of prevention, behavior, outcomes of interventions, and clinical translation of newly proven hypotheses." (1)

Dr. Maria Reyes , acting assistant professor of rehabilitation medicine at the University of Washington, is heartened that now "women's health is one of the fastest growing areas of research," But there is still a lot of catching up to do, "and we know we need to broaden the concept of women's health to address health needs of women across the life span, as well as across socioeconomic and cultural groups, including disabled women."

In addressing women's health, the Institute of Medicine ( IOM) said that there must be a further distinction between sex and gender research, in which "sex" refers to chromosomal differences between men and women, and "gender" refers to differences imposed by culture and society. (2) The National Institutes of Health (NIH) took the important step in 1990 of creating the Office of Research on Women's Health ( http://orwh.od.nih.gov/ ) "and established priorities for women's health research that emphasize chronic and preventable diseases or conditions, which would include disabilities such as spinal cord injury," Reyes said. "Health for women with disabilities is a huge topic-tonight we will only be able to skim the issues."

Women with Disabilities

"There are approximately 27 million women with a physical disability living in U.S. today," Reyes began. Of these, an estimated 39,000 have a spinal cord injury. Historically, many more men sustain spinal cord injuries than do women, at a ratio of about four to one. Due to a scarcity of research, however, little is understood about the differences between men and women with SCI. A 1998 study found differences between men and women in cause of injury, use of medications, attendants and transportation, and type of insurance, but found "more similarities than differences in the ways in which they manage life with SCI."(3)

"We know that women with disabilities face particular healthcare challenges," Reyes said. "A good example is nutrition and weight management. Acutely after SCI there is usually a dramatic period of weight reduction, followed by a steady weight gain." If diet isn't carefully controlled, this trend can quickly lead to overweight and all the associated health risks. People who rely on paid attendants but need to keep caregiver hours to a minimum to save money may resort to unhealthy eating habits. Since women use hired help more than men, who often have a family (usually spouse) caregiver, women may have more barriers to controlling nutrition and weight.

"We don't really know what an ideal body weight is for women with disabilities, and there are no national guidelines for weight management after SCI. There haven't been good studies," Reyes said. The University of Alabama at Birmingham (UAB) developed a program called the Eat Right® Home-Based Weight Management Program for Individuals with SCI, which provides step-by-step guidelines, workbooks, video, and optional cookbook, and can be purchased through the UAB's Spinal Cord Injury Information Network at http://www.spinalcord.uab.edu/show.asp?durki=77527&site=1021&return=19751 or by calling 205-934-3283.

(Editor's note: For more information about nutrition and weight management for women and men with SCI, see the June 13, 2006, SCI Forum report on Nutritional Guidelines for Individuals with SCI at http://sci.washington.edu/info/forums/reports/nutrition.asp.)

While everyone knows exercise is important for health, it's not always easy to do. "I've heard a lot from men and women (with SCI) that there are limited opportunities for exercise," Reyes said. "So the big question is how do we promote health and wellness in this population?"

The Center for Research on Women With Disabilities (CROWD) at http://www.bcm.edu/crowd/ surveyed health maintenance behavior in women with and without disabilities and found that the two groups were similar in practice of health behaviors except one: exercise. Only 46% of women with disabilities got regular exercise, compared with 73% of women without disabilities, and the most commonly reported reason for this was the lack of accessible exercise equipment and/or facilities. (4) "We know that women with SCI have a greater propensity toward obesity (than non-disabled women), so it's important to address the exercise issue," Reyes said.

Reproductive Health

As in the non-disabled female population, more is known about reproductive health in women with SCI than any other health area. "We know there are barriers to reproductive and preventive healthcare for SCI women," Reyes noted, "including inaccessible facilities and equipment and a lack of resources and information." This is especially troubling since the majority of women who sustain SCI are in the childbearing years.

Thirty percent of women with disabilities responding to a CROWD survey believed they were given inaccurate birth control information (versus 9% of the non-disabled). (4) And while surgical and oral contraceptives were the most popular methods of birth control in this survey, and barrier methods were the least popular (perhaps due to limited hand function), "this information is 10 years old and contraceptive use has been changing in the general population as well during this time," Reyes said.

What about sex?

Reyes noted there's a distinction between physical intimacy (hugging, kissing, sexual intercourse) and emotional intimacy (the emotional bond, closeness and understanding). "Both issues are important in sexuality," she said.

Reyes outlined three domains that comprise women's sexual experiences after SCI:

  1. Body image issues-learning how to deal with a body that looks and functions differently. It takes time to get comfortable with your changed body.
  2. Relationship issues-do you have a partner who is willing to address and adjust to these changes? What are the opportunities for meeting potential mates?
  3. Sexual function issues-what is typical in terms of sex drive and the sex act for women with SCI?

Women with SCI continue to have a normal sexual response excitation phase that includes vaginal lubrication, clitoral swelling, and increased heart rate, blood pressure and respiratory rate. (5) The excitation phase is caused by sexual arousal, which can be either psychogenic (mental) or reflexive (physical) arousal. "Psychogenic arousal is the excitation you receive from thought, visual input, and fantasy," Reyes explained. "Physical arousal has to do with stimulation of physical areas that we find to be exciting or erogenous. The location and severity of impairment affects how closely your own response cycle mimics the usual cycle," as follows:

"There may be a need for a prolonged period of foreplay before orgasm," Reyes noted. "Studies done in a lab environment found the average time to orgasm was 15-16 minutes for women without SCI and 26 minutes for women with SCI." (6) If there is insufficient vaginal lubrication, artificial water-based lubricants are recommended (avoid petroleum products such as Vaseline if using condoms).

"There is often a loss of vaginal sensation and muscle control that can affect the pleasure you and your partner experience," Reyes said, "so you need to experiment with different sexual positions to try to increase friction."

What about orgasm? "When polled, 52% of women with SCI reported orgasm. (6) The ability to have an orgasm was unrelated to severity of injury and there are no predictive factors at this time, except that women who achieved orgasm scored higher in sexual information and sex drive," Reyes said. This study also found that the sensations of orgasm are similar between the two groups of women (with and without SCI) and that some women achieved orgasm after stimulation of the breasts or upper body only. Some women reported headache or autonomic dysreflexia during orgasm.

In this same study, women with SCI reported a number of sexual activity concerns. Top on the list were bladder and bowel accidents, followed by: not satisfying a partner; feeling sexually unattractive; being viewed as sexually unattractive; not getting enough satisfaction; preparation too much trouble; hurting oneself; loss of interest; and not liking methods for satisfaction. Additional concerns or limitations reported by women in another study were spasticity, autonomic dysreflexia, insufficient vaginal lubrication, and contractures.(7)

Reyes offered suggestions for managing some of these problems:

Pregnancy

After injury, there is a period of amenorrhea (no menstrual periods) for 3-12 months. Once periods resume-and they usually do-fertility is most likely unaffected, although Reyes noted that a few recent journal articles have questioned this. (8 , 9) "In any case, fertility after SCI is much better in women than men," Reyes stated, "and you need to use birth control." There is no research suggesting higher rates of miscarriage or stillbirth in women with SCI.

Reyes identified several prenatal complications associated with SCI that shouldn't discourage pregnancy but that women need to be aware of and proactive about:

Labor and Delivery

Postpartum

Parenting

Preventive health issues

Mammography

A 1997 study from the National Study of Women with Physical Disabilities found: (15)

Pelvic exams

According to the National Study of Women with Physical Disabilities (4) :

Osteoporosis

Osteoporosis is a serious concern for the entire SCI population, but more so for women.

Reyes ended her presentation by encouraging women with SCI to become educated about their bodies and health issues related to SCI, and to advocate for improvements in health care delivery. "The patient-doctor relationship should be a partnership," she said. "My hidden agenda is to inspire you to be more proactive in seeking health and wellness opportunities, and to share experiences and information with each other."

References:

  1. Pinn VW. Research on Women's Health: Progress and Opportunities . JAMA. 2005;294:1407-1410.
  2. Wizemann TM and Pardue M-L, eds. Exploring the Biological Contributions to Human Health: Does Sex Matter? National Academy Press, 2001. Institute of Medicine.
  3. Shackelford M et al. A comparison of women and men with spinal cord injury. Spinal Cord . 1998;36:337-339.
  4. Nosek MA. National Study of Women with Physical Disabilities. Center for Research on Women with Disabilities (CROWD), Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, TX. http://www.bcm.edu/crowd/?pmid=1408 .
  5. Sipski MLand Alexander CJ. Sexual activities, response and satisfaction in women pre- and post-spinal cord injury. Arch Phys Med Rehabil . 1993 Oct;74(10):1025-9.
  6. Sipski M et al, Orgasm in Women with Spinal Cord Injuries: A Laboratory-Based Assessment. Arch Phys Med Rehabil 1995; 76: 1097-102.
  7. Forsythe E and Horsewell JE. Sexual rehabilitation of women with a spinal cord injury. Spinal Cord. Sep 20 2005 .
  8. Deforge D et al. Fertility following spinal cord injury: a systematic review. Spinal Cord Jun 7 2005 .
  9. Linsenmeyer TA. Sexual function and infertility following spinal cord injury. PM&R Cl NA. Feb 2000 (11) 1: 141-56.
  10. Baker E and Cardenas D. Arch Phys Med Rehabil. May 1996 (77) 501-507
  11. Nosek, M.A., Young, M.E., Rintala, D.H., Howland , C.A. , Foley, C.C., Bennett, J.L. (1995). Barriers to reproductive health maintenance among women with physical disabilities . Journal of Women's Health , 4,(5), 505-518.
  12. University of Alabama . Pregnancy and Women with SCI ( SCI InfoSheet #15). http://www.spinalcord.uab.edu/show.asp?durki=21489&site=1021&return=24467 .
  13. Cowley KC. Psychogenic and pharmacologic induction of the let-down reflex can facilitate breastfeeding by tetraplegic women: a report of 3 cases. Arch Phys Med Rehabil 2005 Jun;86(6):1261-4.
  14. Linsenmeyer TA, Sexual function and infertility following spinal cord injury. PMR Clin NA Feb 2000; (11) 1: 141-56 .
  15. Nosek MA and Howland CA. Breast and cervical cancer screening among women with physical disabilities. Arch Phys Med Rehabil . 78(12S): S39-44.
  16. Slade JM, et al. Trabecular bone is more deteriorated in spinal cord injured versus estrogens-free postmenopausal women. Osteoporos Int . 2005 Mar;12(3):263-72.
  17. Eser P, et al. Fracture threshold in the femur and tibia of people with spinal cord injury as determined by peripheral quantitative computed tomography. Arch Phys Med Rehabil . 2005 Mar;86(3):498-504.19.
  18. Moran de Brito CM, et al. Effect of alendronate on bone mineral density in spinal cord injury patients: a pilot study. Spinal Cord . 2005 Jun;43(6):341-8.

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