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
- Women with Disabilities
- Reproductive Health
- Preventive Health Issues
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."
"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.
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.
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:
- 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.
- 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?
- 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:
- Most women with upper motor neuron (UMN) injury (above the level of the nerve roots) will retain the ability to have reflexive arousal, but not necessarily the neurological connections between the brain and organs for psychogenic arousal.
- If you have intact light touch/pinprick sensation above the waist (T11-L2), that means some of the sympathetic nervous tract is intact and this increases your likelihood of getting a psychogenic arousal.
- Most women with lower motor neuron (LMN) injury (injury to nerve roots or cauda equina -the paired nerve fibers at the end of the spinal cord) may have psychogenic arousal but are unlikely to have reflexive arousal. This is not a common injury, however.
- "Women with SCI need to find new erogenous zones, and you do this through sexual exploration," Reyes continued. "You, by yourself or with a partner, need to determine where and how you can be aroused." The erogenous zones or areas of greatest sexual arousal reported by women with SCI were mouth and lips, followed by neck and shoulder, stomach, clitoris, thigh, feet, ears, breast, and buttocks. (5)
"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:
- Bladder: limit fluid intake and empty your bladder prior to intercourse. "You may keep your Foley catheter in if you prefer, but if you take it out, make sure you replace it right after sexual activity to drain the bladder."
- Bowel: the key is to maintain as consistent a bowel program as possible. Some people report that avoiding meals prior to sex helps avoid bowel accidents.
- Sexual satisfaction: Gaining experience through self-exploration is important, "because you're better able to tell your partner how you can be pleasured. It builds your self-confidence and increases the chances you'll be satisfied."
- If there is true sexual dysfunction, medications such as sildenafil may be helpful. "But there are few studies in women regarding these medications. You need to discuss this very openly with your physician."
- If you have an autonomic dysreflexia (AD) episode during sex, "you must stop immediately. You'll need to discuss this with your provider to determine if you need medications for this. Usually AD happens in women with T6 injuries or higher, although there have been reports that people with lower thoracic injuries have had AD during sex. You need to be aware and cautious about this possibility."
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:
- There is a substantially higher rate of urinary tract infections (UTIs) and kidney infections.
- Bladder spasms may increase.
- It may be necessary to stop spasm medications during pregnancy, which can be a problem if increased spasticity affects mobility and function.
- There is a higher risk for pressure ulcers, so seating and cushions should be re-evaluated during pregnancy.
- There is a higher risk for gestational diabetes.
- There is usually an increase in edema (swelling) in the lower limbs, and some increased risk for DVT (blood clots). This should be discussed with the rehab physician.
- Weight gain.
- Mobility, equipment needs, and functional capabilities may change.
- "Constipation and hemorrhoids are a fact of life with (any) pregnancy, including SCI."
- There may be a higher risk of developing anemia during pregnancy.
- Women with cervical or higher thoracic injuries may have a slightly higher risk for respiratory and pulmonary dysfunction as the baby grows and pushes up on the diaphragm. This may require monitoring ventilatory status and adjusting positioning and/or abdominal binders.
- In order to optimize blood flow to the uterus and maintain optimal fetal cardiac output, bed positioning must generally be adjusted to create a lateral tilt (head raised). (10)
- There is typically a decrease in blood pressure by the 2 nd trimester, more commonly in high lesions. If your blood pressure is normally low, this should be discussed in advance with your OB or rehab physician.
- Is preterm (early) labor more likely with SCI? "We think this problem is mostly associated with the development of kidney infections in the third trimester, and that's true whether or not you have an SCI."
- If you don't have sufficient sensation for uterine contractions, you may not actually notice you're in labor.
- At T10 or above a woman may not feel the first stage of labor pain; with lower lumbar lesions she may not feel the second stage of labor.
- Feelings of labor may be altered-symptoms may be vague and non-specific, such as fear, anxiety, spasticity changes, breathing changes, backache, unusual pain, abdominal tightening, AD and pelvic pressure.
- There may be an increased need for forceps or vacuum delivery due to the absence of abdominal contractions.
- Women with SCI should start watching for signs of labor at 28 weeks. Women with tetraplegia may want to consider getting a home uterine contraction monitor to determine if they're having contractions.
- There is a slightly increased risk for pre-eclampsia (elevated blood pressure during pregnancy) in women with SCI (38% versus 13% in women without SCI). (11 , 12) Your OB should monitor you closely for this.
- Regional anesthesia (epidural) is generally recommended to avoid AD.
- Watch out for a sudden drop in blood pressure when first sitting up after delivery.
- If an episiotomy was done, the site should be monitored for infection or reopening of the wound.
- If a tear occurred through the rectum during delivery, avoid digital stimulation and rectal medications until healed.
- Lactation (breast-feeding)
- Upper arm impairment and spasticity may make it difficult to hold the baby for feeding.
- Nursing may cause AD. Watch for symptoms and stop nursing immediately if AD occurs.
- There is some controversy about whether women with tetraplegia can experience the "let-down" response (the physiological response to suckling that sends milk from the mammary gland into the nipple). A recent case study showed that mental imaging, relaxation, and/or oxytocin nasal spray enabled women with SCI at T4 and above to nurse successfully. (13)
- Some medications may need to be stopped during breast-feeding and should be reviewed with your provider.
- Deconditioning-if a woman's activity level decreases substantially during pregnancy, she may become quite debilitated and need physical therapy or other rehab after the baby is born.
- Postpartum depression is a concern for all populations; there are no data suggesting it is worse or more common in SCI.
- Life will be harder-be prepared to ask for additional assistance.
- There has not been very much research on parenting with SCI. A 1994 survey of 26 families with mothers who had SCI (47 children total) found no differences in terms of parenting roles, responsibilities, participation or burden, compared with controls (families in which the mother did not have SCI). (14) One woman in this survey reported that having children gave her extra motivation to stay healthy.
A 1997 study from the National Study of Women with Physical Disabilities found: (15)
- Disabled women are at a higher risk than non-disabled women of getting a delayed diagnosis of breast and cervical cancer, primarily due to environmental, attitudinal and information barriers.
- Actual mammography rates, however, are not significantly different, even with severe functional limitations.
- The most common reasons women reported for not obtaining mammography were positioning issues, the physician didn't recommend a mammography, and the woman didn't believe her cancer risk was high enough to necessitate mammography.
According to the National Study of Women with Physical Disabilities (4) :
- Women with disabilities do not receive the same quality of gynecological health care as non-disabled women.
- Women with disabilities are less likely to receive regular pelvic exams.
- Greater severity of disability further diminishes likelihood of receiving pelvic exams.
Osteoporosis is a serious concern for the entire SCI population, but more so for women.
- Osteoporosis in SCI is multifactorial (caused and affected by multiple factors) :
- Immediate disuse and unloading of bones after injury.
- Bone is dynamic, constantly forming new bone and resorbing (breaking down) old bone. When not weight-bearing (due to paralysis), new bone formation declines, but bone loss from resorption continues.
- In the first 6 months after injury there is a rapid loss of calcium excreted through the urine (2 to 4 times the normal rate). This decreases bone density and also can predispose an individual to kidney or bladder stones.
- Women with SCI have more bone loss than men with SCI.
- Menopause increases bone loss in all women, and postmenopausal women with SCI have more bone loss than postmenopausal ambulatory women.(16)
- Spasticity may protect some people from bone loss.
- Bone loss timetable
- The most rapid bone loss takes place in the first 4 months after injury and levels off at 16 months.
- While bone loss occurs throughout the body, the greatest loss is in the areas rich in trabecular (spongy) bone, first above the knee, then in the pelvis, and last in the arms.
- Bone loss in the lower extremities and pelvis reaches more than 50% by 10 years post injury.
- Bone loss in the lower extremities and pelvis is offset somewhat by an increase in bone density in the arms and trunk over time, so that there is an overall bone loss of about 10-21% at 10 years post injury, depending on level and severity of injury.
- Individuals with complete injuries lose more bone mineral density (BMD) than those with incomplete injuries.
- After 10 years, persons with paraplegia have near normal BMD in the arms.
- Bone loss increases the risk for fractures, even from minimal trauma (such as transfers or range-of-motion exercises).
- National Model SCI System data reports a fracture rate of 14% at 5 years post-injury, increasing to 28% at 10 years and 39% at 15 years.
- Fractures occur in areas of bone loss; femur and hip fracture rates are 104 times higher than the general population at age 50. This drops to 24 times higher at age 70 (because bone loss increases with age for all populations).
- In people with complete injuries, lower extremity fracture rates are 10 times greater than the general population.
- It is possible to have a fracture and not know it. Usually there is an inflammatory response with some swelling, but in smaller or stress fractures there may be no symptoms. If untreated, most of these small fractures will heal as long as the bone is immobilized. Problems occur when the bone keeps re-fracturing, which can lead to possible nonunion, deformity and instability.
- Diagnosis and treatment
- There is no consensus at this time about how to monitor and treat osteoporosis.
- Some studies have shown that peripheral quantitative computed tomography can help identify people at risk for fracture through minor trauma. (17) High resolution magnetic resonance imaging is also effective at measuring bone loss, but this imaging technique is not available at this time. (16)
- It's difficult to restore BMD once lost, so partial prevention is key.
- Studies using bisphosphonate derivatives (etidronate) to treat osteoporosis are only preliminary at this time.
- Fosamax (alendronate) may help limit bone loss in some people, but physicians have not come to an agreement about whether to prescribe these medications to everyone with SCI to prevent or stop bone loss. (18)
- There is some controversy as to whether standing tables or bicycle ergometry with FES really help.
- It's hard to reverse osteoporosis once it has progressed, so the key is to try to prevent it from occurring with such methods as early weight-bearing.
- At this time, recommendations are the same as the general population: CDEFGS, which stands for Calcium, vitamin D, Exercise, Fall prevention, Gain weight, Stop smoking.
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."
- Pinn VW. Research on Women's Health: Progress and Opportunities . JAMA. 2005;294:1407-1410.
- Wizemann TM and Pardue M-L, eds. Exploring the Biological Contributions to Human Health: Does Sex Matter? National Academy Press, 2001. Institute of Medicine.
- Shackelford M et al. A comparison of women and men with spinal cord injury. Spinal Cord . 1998;36:337-339.
- 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 .
- 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.
- Sipski M et al, Orgasm in Women with Spinal Cord Injuries: A Laboratory-Based Assessment. Arch Phys Med Rehabil 1995; 76: 1097-102.
- Forsythe E and Horsewell JE. Sexual rehabilitation of women with a spinal cord injury. Spinal Cord. Sep 20 2005 .
- Deforge D et al. Fertility following spinal cord injury: a systematic review. Spinal Cord Jun 7 2005 .
- Linsenmeyer TA. Sexual function and infertility following spinal cord injury. PM&R Cl NA. Feb 2000 (11) 1: 141-56.
- Baker E and Cardenas D. Arch Phys Med Rehabil. May 1996 (77) 501-507
- 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.
- University of Alabama . Pregnancy and Women with SCI ( SCI InfoSheet #15). http://www.spinalcord.uab.edu/show.asp?durki=21489&site=1021&return=24467 .
- 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.
- Linsenmeyer TA, Sexual function and infertility following spinal cord injury. PMR Clin NA Feb 2000; (11) 1: 141-56 .
- Nosek MA and Howland CA. Breast and cervical cancer screening among women with physical disabilities. Arch Phys Med Rehabil . 78(12S): S39-44.
- 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.
- 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.
- 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.
- Center for Research on Women With Disabilities (CROWD ), Baylor College of Medicine, One Baylor Plaza, Houston, Texas 77030; 800-443-7693; http://www.bcm.edu/crowd/ .
- Pregnancy and Women with SCI ( SCI InfoSheet #15). Spinal Cord Injury Information Network, University of Alabama at Birmingham (UAB) -Spain Rehabilitation Center, 1717 6th Ave. S, Birmingham, AL 35233; (205) 934-3283 . http://www.spinalcord.uab.edu/show.asp?durki=21489&site=1021&return=24467
- Online resources: http://www.mollyhale.com/links.htm
- Washington Wheelchair Women Network email list: sign up at http://ravenblue.net/mailman/listinfo/wwwn_ravenblue.net .
- Mobilewomen.org : http://carecure.rutgers.edu/mobilewomen
- National Institutes of Health Office of Research on Women's Health : http://orwh.od.nih.gov/ .