Our Bodies, Ourselves (43 page)
Read Our Bodies, Ourselves Online
Authors: Boston Women's Health Book Collective
Perimenopause/menopause.
During the years leading up to menopause (which occurs when menstrual periods have stopped for a full year), estrogen levels spike and fall erratically while progesterone levels decline. By one year after the last menstrual period, both progesterone and estrogen are steady at low levels. You may experience less desire and increased vaginal dryness. For some, relief from the fear of pregnancy after you enter postmenopause may allow newfound sexual freedom. (For more, see
Chapter 20
, “Perimenopause and Menopause.”)
Adrenal or ovary removal (oophorectomy).
Either of these surgeries may result in a dramatic decrease in sexual interest and frequency of orgasm, in part due to a reduction of testosterone (see more on testosterone above). This is one of many reasons for avoiding unnecessary removal of the
ovaries or adrenals
.
Some of us have chronic diseases or disabilities we were born with, such as cystic fibrosis or blindness, or have developed later in life, such as multiple sclerosis or bipolar disorder. Regardless of onset, each of us has the right to fulfillment of sexual desires and to feel good about expressing sexuality. Yet all too often, some people, including health-care providers, assume that teenage girls and women with disabilities are sexless.
Gimpgirl Community (GimpGirl.com) aims to bring women with disabilities together in the spirit of support, positivity, and inclusivity. The site includes useful information for women with disabilities and their allies, including a list of recommended gynecologists and clinics with accessible exam chairs or tables. Add your recommendations to help the list grow.
Not only are these attitudes condescending; they can also negatively affect our health and self-esteem. While more is being done to educate the medical community, the pressure is often on us to explain our sexual desires and capabilities and to inform the world around us.
Samantha, who has quadriplegia, says of her relationship with her husband, Michael:
We love each other passionately and often. While the disability does, in reality, affect how we do things and what we are able to do together, it does not define our relationship. Assumptions are always the problem. People can assume, because I'm disabled, that my sexuality, and my ability to enjoy and participate in sex, has been taken away from me. It is fun to be part of an education process aimed at challenging this perception.
Compounding the problem is the fact that having a disability can trigger feelings of alienation or disconnection from our own bodies, causing shame and embarrassment. Reclaiming our bodies for positive sexual experiences may take time and patience, as well as experimentation and support:
I am visually impaired and had to endure multiple medical procedures to prevent blindness or improve my eyesight. Growing up with these challenges often left me feeling like my body was my enemy, so I feel like my sexual development and intimate relationships with others were/are affected by my heightened insecurities about my body, and I worry about whether or not my significant other would stick around if my vision problems took a turn for the worse.
From dating to the logistics of partner sex, challenges may arise. Lack of knowledge and poorly designed spaces can turn simple issues into huge barriers. We must also decide when and how much to disclose if our disability is not obvious:
I have been surprised at how little most men I have had sex with are bothered by my urostomy [in which urine is collected from the bladder in a small bag attached to the abdomen]. I do tell them before we are in the buff, and it hasn't been too much of an issue. I think they must already accept my disability to some extent before becoming intimate, so perhaps they just see the urostomy as more of the sameâpart of the disability, which is how I see it.
After my brain injury, I couldn't get spontaneous pictures of people masturbating in public out of my mind and even flirted with the idea of lifting my skirt and doing it myself. These new thoughts were disturbing, and I was afraid to tell my partner, because I worried it would damage our relationship. Then I learned in a support group how a brain injury can change our ability to maintain appropriate sexual boundaries. Eventually, my urges were less frequent, and I became more comfortable with my sexuality.
A great deal of sexual expression involves verbal and nonverbal communication. When one partner is deaf, is hard of hearing, or has a speech disability, we may need to learn new
ways of communicating. Honest and frank discussions about what makes us feel good can be a model for all sexually active people.
DOIN' IT: SEX, DISABILITY & VIDEOTAPE
© Salome Chasnoff/Beyondmedia Education
The Empowered Fe Fes visit Early to Bed in the documentary film
Doin' It: Sex, Disability & Videotape.
View the film's trailer at vimeo.com/1474473.
The Empowered fe Fes, a Chicago-based peer group of young women age thirteen to twenty-four with different disabilities, use video to investigate truths about their lives and their communities and shatter stereotypes about their individual abilities. In the documentary
Doin' It: Sex, Disability & Videotape
, the Fe Fes (slang for female) educate themselves about sex from many angles by talking with activists and scholars. The viewer tags along on a date between a woman with a disability and her able-bodied boyfriend and accompanies the group to a sex toy shop where they learn about feeling comfortable exploring their bodies.
The Fe Fes are sponsored by Access Living (accessliving.org), a disability rights organization.
Doin' It
was created in a media workshop and produced by Beyondmedia Education. A previous yearlong workshop that explored growing up as a girl with disabilities led to the creation of the film
Beyond Disability: The Fe Fe Stories
. During that workshop, it came up that only one of the sixteen participants had heard the word clitoris before. This is not uncommon; young people with disabilities are systematically left out of sex education in the schools, the implication being they don't need it. Girls with disabilities are sorely undereducated
about sex, and there is a high rate of sexual abuse and domestic violence among girls with disabilities.
The girls' interest in learning more led to the workshop that created
Doin' It: Sex, Disability & Videotape.
The film premiered in 2007 and has been screened in festivals and other venues. It received a best documentary (short) award from the San Francisco Women's Film Festival and an award at Picture This â¦Film Festival in Calgary, Canada. In 2009, Feminist Active Documentary Video Festa in Tokyo translated the video and began distributing the video in Japan.
In the still pictured above, the Fe Fes (Veronica Martinez, left, and Krystal Martinez, right, no relation) are exploring toys at Early to Bed, a feminist sex shop in Chicago. The subtitle in the frame captures the voice-over of Susan Nussbaum, who founded the Empowered Fe Fes with Taina Rodriguez in 1999.
“We're capable as women of having great pleasure from our bodies,” says Nussbaum. “And as disabled women, that is something we are often not told about ourselves.”
Since the completion of the video, several of the girls who helped produce it have continued to grow as disability activistsâchallenging the American Medical Association on ethical issues around disabilities, demanding that public officials address access issues, and traveling to the state capital and Washington, D.C., in support of disability rights legislation. To purchase
Doin' It
or other Beyondmedia films on womens' and girls' activism, visit beyondmedia.org.
I needed to find out if I could actually feel comfortable and communicate to someone who really didn't know me before my accident in order to have sex. At this party, I met a guy, and we eventually had sex. The morning after, I asked him what it was like to be with me, and he answered, “Honestly, at first I was afraid I might hurt you because you are so small, but you talked to me and told me what felt good, and what to do that was good for me, too, so it was great!” In more ways than one, it was great for me as well.
The cultural pressure to be spontaneous with sex can be frustrating if some assistance is needed.
To help maintain independence, a personal-care attendant can help us, or our partner, prepare for sexual activities, though that can be intrusive.
My husband and I are both disabled, so we need a lot of help. We decided that hiring a personal-care attendant was too much of an invasion of our privacy, though. It is very frustrating, but we just don't have intercourse anymore. We have our orgasms through oral sex now, and my husband says we are lucky and that other people would be jealous if they knew.
Certain chronic illnesses and disabilities such as fibromyalgia and some spinal cord injuries have associated pain, so there may be times when we want sexual activity but can't bear to be touched. For some, direct genital stimulation can actually help to block the pain.
6
Members of the disability community have taught the medical establishment much about sexuality over the years. Research has validated what some of us knew all alongâour orgasms are real and can result from genital stimulation or stimulation of other highly eroticized areas. This is true for women with and without spinal cord injury.
7
The first time I had sex with my boyfriend after I became paralyzed, it was awful. But then, over time, it got better with communication and experience. I was surprised that I could still orgasm after my injury, since no one at the hospital had discussed it with me.
Some disabilities also make us more susceptible to depression by causing changes in brain chemistry and hormone and activity levels, causing us to withdraw from sexual activities. These feelings can be made worse by the medications prescribed. No matter the cause, though, we are not our disability or a bundle of symptomsâa fact that we need to assert and the medical establishment needs to recognize.
Recommended Resources on Sex and Disability:
Much writing about sex and disability focuses on male erection issues to the exclusion of women's concerns. These resources are recommended:
⢠The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness
by Miriam Kaufman, Cory Silverberg, and Fran Odette (Cleis Press, 2007).
⢠Enabling Romance: A Guide to Love, Sex, and Relationships for People with Disabilities (and the People Who Care About Them)
by Ken Kroll and Erica Levy Klein (No Limits Communications, 2001).
⢠A Provider's Guide for the Care of Women with Physical Disabilities and Chronic Medical Conditions
by Suzanne Smeltzer and Nancy Sharts-Hopko (North Carolina Office on Disability and health, 2005). Though written for providers, this guide gives a clear, comprehensive overview of women's health issues. Available free at fpg.unc.edu/~ncodh/publications.cfm.
Chronic Babe (ChronicBabe.com) was created as an online community for younger women. It includes a help desk, articles, and discussion forums.
SEX WITH A DISABILITY OR CHRONIC ILLNESS | ||
CHRONIC DISEASE OR DISABILITY | EFFECTS ON SEXUALITY | HELPFUL HINTS AND CONSIDERATIONS |
Cerebral palsy (CP) | Muscle spasticity, rigidity, and/or weakness may complicate some sexual activity. Knee and hip contractures may cause pain under the pressure of a partner, and spasms may increase with arousal. Some women experience a lack of vaginal lubrication. | Sex without vaginal penetration, trying different positions, or propping legs up on pillows may ease spasms. A vibrator or another sex toy can be used for self-pleasure or with another person. Estrogen-containing birth control methods are not advisable for women with restricted mobility. For women taking anticonvulsants, see special precautions below for epilepsy. |
Cognitive disabilities (including brain injury, epilepsy, and stroke) | Sexual abilities vary depending upon the location of brain injury (BI). A changed level of interest in sex is possible, as well as decreased vaginal lubrication and difficulty experiencing an orgasm. These reactions are sometimes caused by medications or associated with depression. | If balance, coordination, or strength is an issue, try sexual activities in positions that support the body or require little exertion. Social-skills retraining or working with a neuropsychologist may help to address cognitive or behavioral issues. Estrogen-containing birth control methods and hormone therapy (HT) are not advisable for women with paralysis, stroke, or circulatory disorders. |
Diabetes and chronic kidney disease | Numerous recent studies have examined the effects of diabetes on women's sexual response, often with varying findings. Some women with diabetes and kidney disease report that orgasms gradually become less frequent and less intense. | Using a vibrator enables some women to experience orgasm because the stimulation is more intense. Healthy women with diabetes can generally take the Pill and use other hormonal birth control safely, but women who have hypertension or kidney disease should avoid birth control containing estrogen. |
Heart disease | For those with very serious conditions, including chest pain, palpitations, and shortness of breath, sexual activity may be limited. However, if you can climb two flights of stairs at a brisk pace without inducing symptoms, it's a good sign you're ready to resume sexual activity. | Consult a physician to see when and if you can safely begin an exercise regimen. The AMA suggests engaging in sex when rested, waiting one to three hours after eating a full meal to allow time for digestion, and taking prescription medications before sexual activity. Essential hypertension is now being researched as a factor contributing to sexual difficulties. |
Rheumatoid arthritis (RA) | Swollen, painful joints, muscle weakness, and joint contractures may make it difficult to masturbate or to have sex in some positions. Fatigue, stiffness, and joint dysfunction may decrease desire for sex, | A vibrator or another sex toy can be used for self-pleasure or with another person. If symptoms respond to heat, plan sexual activities after a hot compress or a hot bath. Experiment with sexual positions and use pillows to avoid pain and for support of affected joints. |
Rheumatic diseases (including scleroderma, systemic lupus erythematosus [SLE], Sjögren's syndrome [SS], and systemic sclerosis [SSc]) | A decrease in vaginal lubrication is often present, and skin and/or vaginal tightness can make vaginal penetration more painful. SS also causes dry mouth, SLE causes mouth sores, and both SLE and SSc may cause vaginal sores. | Sex without vaginal penetration, and use of a vibrator, topical anesthetic, and vaginal dam, may help to protect fragile skin and sores. Use estrogen cream to help with vaginal pain and atrophy. |
Multiple sclerosis (MS) | Depending upon the stage and severity of MS, symptoms will vary and may come and go. Common symptoms include difficulty experiencing orgasm and decreased genital sensitivity, vaginal dryness, muscle weakness, extreme fatigue, pain, and bladder and bowel incontinence. | Because sexual difficulties may come and go with other MS symptoms, it helps to be creative. Some medications for spasms and topical anesthetics for pain may be helpful. If balance or fatigue is an issue, use a vibrator or try sexual activities that require less exertion. Some women find that vaginal penetration is painful, but clitoral stimulation feels good. |
Ostomy | Very little has been written about sexual activities and women with ostomies, even today. Surgery often does not impair genital responsivity or fertility. However, some women report pain during vaginal penetration or a lack of vaginal sensations after ileostomy, colostomy, and proctocolectomy surgery. | Use pouch covers and positions that feel comfortable and keep your pouch secured during sexual activity so it does not get in the way or get pulled off. Tablets to neutralize odors may be put inside the pouch. |
Spinal cord injury (SCI) | Symptoms such as paralysis, loss of sensation, muscle weakness, spasticity, pain, incontinence, and vaginal dryness can all complicate having sex. Changes in the ability to lubricate or feel genital sensations depend on the severity of injury. Arousal, self-pleasuring, and sex may increase spasms and the risk of incontinence. Menstruation may stop for several months after SCI, but fertility is not permanently disrupted. Pregnancy increases the risk of developing blood clots, pressure sores, and bladder infections. | Tape down your catheter and move it out of the way so it doesn't get pulled out during sex. Sex without vaginal penetration may help to avoid pain. Taking spasm medication prior to sexual activity may be of assistance. Using a vibrator helps some women experience orgasm. For women with high-level SCI, intense vaginal stimulation (as in childbirth or vigorous and prolonged penetration/vibrator use) can cause automatic dysreflexia (AD), a life-threatening condition. Many women have healthy and painless births, but be on guard for signs of AD and uterine prolapse during labor and delivery. Estrogen-containing birth control methods are not advisable and should not be used if taking antihypertensive medication. |
Chronic fatigue syndrome(CFS), fibromyalgia, and myofascial pain syndrome | These chronic conditions cause fatigue, widespread pain, and stiffness that can seriously dampen desire for sex. The possibility of experiencing postexertional fatigue or triggering episodes of pain may make engaging in sexual activities feel too risky. | Pacing yourself and prioritizing where your energy will goâa vital strategy for anyone with these syndromesâmay help you have more energy for sex. A vibrator or another sex toy can be useful for hand pain. Experiment with sexual positions and use pillows for support and to reduce pain. Pain is an “antiphrodisiac” and can lead to depression, so symptom management is important. |
A. Many medications are directly responsible for negative effects on our sexuality. From dampened sexual desire and decreased vaginal lubrication to delayed or absent orgasm, these difficulties can be very frustrating. These drugs include antihypertensives (diuretics and beta-blockers), antidepressants (selective serotonin reuptake inhibitors, serotonin-norepinephrine reuptake inhibitors, tricyclic and some monoamine oxidase inhibitors), tranquilizers (phenothiazines), spasticity medications, and antiseizure medications (phenytoin [Dilantin]), as well as lithium, risperidone (Risperdal), digoxin, and reserpine (serpasil). B. The diaphragm may not be recommended if you have poor hand control, recurrent bladder or vaginal infections, or very weak pelvic muscles. If the use of your hands is limited, ask your partner or attendant to help insert the diaphragm. Also, devices are available that make it easier to insert the coil-spring diaphragm, but some hand control is required. C. The IUD is not a good birth control method for women with a loss of sensation in the pelvic area because of the risk that puncture or pelvic inflammatory disease may go unnoticed. D. Estrogen-containing birth control pills can increase the risk of clotting and cause serious medical problems such as embolism, deep vein thrombosis, and stroke. Because some birth control medications may interact poorly or be rendered less effective when taken in combination with other drugs, be sure to inform your health-care providers about the medications and dosage you are taking when seeking contraceptive services. E. A water-soluble lubricant can often be of immense help with a dry vagina or if you feel you have a decreased amount of lubrication. F. Many women find that ongoing pharmaceutical treatment greatly improves their quality of life by minimizing symptoms. At the same time, safe contraceptive use is mandatory if taking methotrexate (Rheumatrex), cyclophosphamide (Oytoxan), or chlorambucil (Leukeran), since harm to a fetus is likely. These last two medications can also cause permanent infertility, and NSAIDs may cause reversible infertility. |