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Women, sexuality, and disability "101".

I have been a disability columnist for years, and the most common questions I receive from women are:

* What about sexuality and multiple sclerosis (MS) or spinal-cord injury (SCI)?

* What about sexuality and cerebral palsy? Spina bifida (SB)?

* Who has it best? Worst?

* What about reproductive health, sexual response, orgasm, bladder and bowel concerns, and autonomic dysreflexia (AD)?

There are so many variables, how can you compare or contrast one to the other?

As a new contributor to PN, I have an interest in women and disabilities, sexuality, health promotion, abuse, violence, and other issues for women. While many differences exist in disability types, we'll find more commonalities than we expected when we talk about sexuality.

SB is a class of serious birth defects called neural tube defects (NTDs), which involve damage to the bony spine and the nervous tissue of the spinal cord. Some vertebrae don't close properly during development, and the spinal cord's nerves don't develop normally. They are exposed and can be subjected to further damage. At birth, they protrude through the gap instead of growing normally down the bony spinal column. Nerve signals to most parts of the body located below the level of the "split spine" are damaged, and a wide range of muscles, organs, and bodily functions are affected.

The other main type of neural-tube defect is anencephaly, in which the brain and skull don't develop properly. Babies with anencephaly are stillborn or die soon after birth.

SCI results when a traumatic event--such as a motor-vehicle, motorcycle, or diving accident; serious sports fall; or other situation--occurs. This may damage the cells within the spinal cord or sever the nerve tracts that relay signals up and down the cord. The spinal cord does not have to be severed in order for a loss of functioning to occur. In fact, in most people with SCI, the spinal cord is intact but the damage to it results in loss of functioning. SCI is very different from back injuries such as ruptured disks, spinal stenosis, or pinched nerves.

People can "break" their back or neck, yet not sustain an SCI if only the bones around the spinal cord (the vertebrae) are damaged but the cord is not affected. In these situations, the individuals may not experience paralysis after the bones are stabilized.

Cerebral palsy (CP) is a neurological disability. It refers to any of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. Even though CP affects muscle movement, it is caused not by problems in the muscles or nerves but by abnormalities in parts of the brain that control muscle movements.

MS is believed to be an autoimmune disease that affects the central nervous system (CNS). The CNS consists of the brain, spinal cord, and optic nerves. Surrounding and protecting the nerve fibers of the CNS is a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses.

In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis. These damaged areas are also known as plaques or lesions. Sometimes the nerve fiber itself is damaged or broken.

Effects of Disability

All these disabilities affect sexual functioning in a variety of ways. Bowel and bladder concerns are universal. What can you do to prevent accidents? Prepare! What doesn't go in doesn't go out.

Monitor fluid and food intake; use a condom to prevent transmission of bodily fluids if you're having vaginal intercourse (sometimes I recommend the "3 Cs"--condom, catheterize, and Cotrim!) to help prevent urinary-tract infections, and make sure your bowel and bladder are emptied before sexual activity. If you're having anal intercourse, use special precaution, especially if you use digital stimulation with your bowel program. This could facilitate a bowel movement. In addition, anal sex can promote urinary incontinence due to anatomical locale.

This doesn't sound very romantic, does it! To be truthful, disability can take away some of the spontaneity of sex. Just remember the "P" word: prepare! Women with neurological disabilities such as those described earlier can become pregnant--fertility is not affected! Be aware of current birth control methods and potential side effects for women with neurological disabilities, and assume responsibility for reproductive health by consulting a reliable, qualified, and trustworthy clinician.

Access routine reproductive health examinations, along with mammograms after age 40, on a routine basis or as recommended by your primary care or genealogical provider.

Due to decreased sensation, skin breakdown (such as vaginal ulceration) can occur with intercourse. Skin breakdown can also occur if you are positioned for long durations of time, resulting in unevenly distributed pressure. Imagine going to see your primary care provider with a pressure ulcer only to have to disclose how you got it! Seriously, though, we women should be aware and knowledgeable about pressure-ulcer issues and "safe" positioning for sexual activities.

Sexual intercourse or genital stimulation can trigger autonomic dysreflexia (AD), also known as hyperreflexia. Essentially any painful, irritating, or even strong stimulus below the injury level can cause AD. Women with SCI thoracic 5 (TS) and above are very susceptible. Those with injuries at T6-10 maybe susceptible. Women with T10 and below are usually not susceptible. Also, the older the injury, the less likely the person will experience AD.

During sexual activity, AD can develop suddenly and without warning. It is a possible emergency situation. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.

Women who fit the AD criteria should carry an informational card in their wallet, as many practitioners may not be aware of the symptoms and treatment. Medical Alert cards are available from the Paralyzed Veterans of America (PVA), 800-424-8200, or a card is in the patient education book Yes, You Can!, also available from PVA.

More Help

The sexual response cycle (excitement, plateau, orgasm, and resolution) varies from woman to woman and from disability to disability. Sexual response and orgasm is mitigated for women with neurological disabilities. For example, women with SCI may experience AD and the lack of vaginal lubrication and ability to achieve orgasm. For more information, go to: /sci/updates196f_sexualfunction_women .html. Women with CP, MS, and SB may experience similar sexual concerns, with the exception of AD, which is exclusive to women with SCI (see above).

For more information on women with CP visit SEX.html; for MS, visit http://ms.about .com/od/sexuality/Sexuality_and_Multi ple_Sclerosis.htm; and for SB, go to cephalusExplained.htm.

Good resources exist for women with disabilities. An excellent video, "Sexuality Reborn," is available from the Kessler Institute for Rehabilitation. Order from consumer.php?cnav=5.

Enabling Romance is a wonderful book about sexuality and disability from a cross-disability perspective. Purchase it from store3.cfm?type=REG&order_id=new. is a lively, professional Internet site filled with questions and answers, articles, and resources about sexuality and disability (

The Sexuality Information Education Council of the United States (SIECUS) has a free bibliography laden with resources. Visit pubs/biblio/bibs0009.html.

Take Charge

Our sexuality, disability, and sexual responses are personal and intimate issues. We need to confront the issues and overcome the barriers to have a healthy, sexually active life. There is a strong influence of pre-injury sexual behavior and attitudes for women with acquired disabilities such as SCI. There is also a strong influence of peers for women with congenital disabilities when dealing with sexuality issues.

We are responsible for our own sexuality, sexual expression, and orgasms. A positive attitude toward sexuality, good communication skills, and overall good sexual self-esteem are important for women with congenital and acquired disabilities.

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Title Annotation:just for WOMEN
Author:McNeff, Elizabeth
Publication:PN - Paraplegia News
Date:Jun 1, 2007
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