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Social, Psychological, Sex
Women account for about 12% of all AIDS cases in the United States and 50% worldwide. Furthermore women are being infected at a rate greater than any other population. However, HIV is still under-diagnosed and under-researched in women. This is in part because many women in the United States are not perceived to be "at risk" and often physicians do not recognize early signs of HIV infection in women. Although treatment and care issues are similar for both men and women, certain issues concerning HIV treatment are specific to women. Guidelines for Women with HIV/AIDS will address some of these issues, including social, psychological, and physical issues of HIV and women.
For more information, please also refer to Guidelines for the Management of Opportunistic Infections and Guidelines for the Management of Gynecologic Infections or call our hotline 1-800-822-7422.
It is most important to inform your lover or spouse of your HIV infection, as it also has an impact on him or her. Although knowledge of your HIV status can certainly disrupt a good relationship, don't assume it will destroy one. Finding an appropriate time or method to tell your partner that you have HIV is difficult and will of course vary with each situation. It may be helpful to provide him or her with printed information to help better understand the disease, as well as information on where he or she can seek anonymous HIV testing. Perhaps seek out a support group so that you and your partner will be able to meet other couples that are sharing similar concerns regarding HIV and relationships. If you're in an abusive or threatening relationship, it would be a good idea to consult first with your local AIDS organization and battered women's center. If not currently in a relationship (but wish you were), don't assume that HIV means you can no longer give and receive love. Although sex may not be your top priority at this time, it is important to remember that sex is something which can help affirm life. Safer sex practices will be discussed later in this fact sheet.
In addition to discussing HIV with your lover, you also should consider informing your children of your HIV status. Children are very perceptive and often know (although they may not have been told) that something is wrong, and may think that your illness or stress is their fault. Reassure them that they are not the cause. Honesty may be the best approach in telling your children that you have HIV, yet remember to provide information to them at an educational and developmental level they can understand. For example, a very young child won't understand that fatigue often accompanies HIV, but would accept that sometimes mom's get sick or tired and need to take naps, just like little kids. Upon learning that their mother is infected with HIV, older children often experience anger or frustration. Unfortunately, few special services are available to address their special needs. It may help to find someone, such as a social worker, family member, special teacher, or therapist with whom your children can talk freely. Acknowledge that you and your doctor do not have all the answers concerning HIV, but as you learn more you will explain more to them.
Unfortunately, many women discover their HIV status during pregnancy or when a child is diagnosed HIV+. In the case of an HIV+ child, it is even more important to be honest. A child knows if he or she is different than other children. Included in the resource list at the end of this fact sheet are some organizations which offer special services to families with HIV. Further considerations regarding pregnancy and parenting can been found later in this fact sheet. A Pediatric HIV Fact Sheet is also available through the Project Inform Hotline.
Just as it is important that you address the ways in which your HIV infection can affect your relationship with others, it is equally important to address the ways in which HIV affects your relationship with yourself. First, last and always, remember that guilt, blame or shame accomplish nothing. Nobody asks for HIV anymore than they beg for a car wreck. Certainly, your life has been physically and emotionally assaulted, but not necessarily beyond repair.
Support groups and community organizations can provide you with the opportunity to learn more about the disease while allowing you to learn the ways in which others are dealing with similar problems. Being among women (and men) with some of the same concerns as yourself provides the feeling that you are not alone in facing this disease, and can lead to valuable friendships. Also, studies have shown that support groups can actually have "clinical benefit," helping to delay the onset of disease. The extent of participation and sharing is entirely up to you and you should never feel that you are being forced to participate in anything that makes you feel uncomfortable. For a list of support groups, contact an AIDS organization in your area. A list of other resources for women is located at the end of this fact sheet.
Having a life-threatening disease naturally will produce stress. However, since stress can adversely affect your immune system, controlling it plays a key role in controlling HIV. So anticipate and learn the skills needed to handle stress and to help prevent it affecting your health.
Try to identify the symptoms of stress, both physical and mental, such as muscle pain and depression.
Find out what you believe is the source of the stress. In many situations (such as finding out you have HIV) anxiety is a very natural reaction.
Sometimes, it may be possible to prevent the stress through problem solving methods, changing the environment that causes the stress, or simply avoiding the stressful situation altogether (without avoiding life altogether). Since no one can avoid all stress, finding ways in which to manage your stress is beneficial. Some suggestions include: exercise, yoga, massage, meditation, support groups, network of family and friends with whom you can talk, and therapy (often non-profit agencies provide therapy at low cost).
You and your lover can still have great sex (one way to release stress), but special precautions need to be taken to reduce the risk of transmission of HIV to an uninfected partner, transmission of a different "strain" to or from an infected partner, or transmission of another infection, such as herpes or chlamydia. Even if your first experience with Safer Sex reminds you of your very first sexual experience, don't give up! Practice does make perfect.
A federally- funded program will provide family planning services (annual pap and physical, condoms, etc.) for those who cannot afford them. Consult your city health department or family-planning clinic.
Activities that pose no risk of HIV transmission:
Considered safe, but may still pose some risk of HIV transmission:
Considered absolutely unsafe:
Latex condoms, latex dams, or plastic wrap provide a barrier to the body fluids referenced above. These barriers need to be used properly and consistently. With the use of both condoms and latex dams, it is important to note that ONLY-WATER BASED LUBRICANTS should be used. Oil- based lubricants literally eat latex, making the condom ineffective. Also, condoms, dams and plastic wrap should never be reused.
Instructions are included in every box, but here are some points to remember: Lubrication! Lubrication! Lubrication! (Experiment until you find your favorite). Prepare in advance (Or practice opening the package with your teeth). Always leave room for what "cums" later! (Squeeze air from the tip of the condom)
A new product called the Reality Pouch has recently been approved as a method of birth control and is thought to also offer protection against STD's (although not officially approved as such). It fits inside a woman's vagina, is made out of a different type of plastic (some people are allergic to latex), and has received mixed reviews. PROS: No latex allergies, allows women more control, men say it feels more natural, some women say it also stimulates the clitoris. CONS: It's more expensive than regular condoms, and some claim it makes a strange noise during intercourse. Once again, experimentation is the key.
How to Use a Latex Dam for Cunnilingus (oral sex on a woman):
Uses for Kitchen Plastic Wrap:
Kitchen
plastic
wrap provides the same protection as a latex dam, and is larger,
thinner,
less expensive, more readily available, and preferred by many
couples.
Simply follow the same steps as above, except (step 2) there is no
need to
stretch the plastic wrap.
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Physical
Women with AIDS experience many of the same infections as men. Unfortunately, many women do not access the information needed to extend their lives - some of it as simple as an inexpensive antibiotic which can prevent PCP (pneumonia). In addition to the women specific information included in this fact sheet, we encourage you to seek out general treatment information and find a sensitive and knowledgeable doctor who will work with you to develop a personal treatment strategy. Idiopathic Thrombocytopenia (ITP)
ITP is an abnormally low platelet count and common in people with HIV as well as intravenous drug users. Anecdotal data suggests it is particularly common in IV drug users who are women. Symptoms include: easy bruising, bleeding in the mouth and gums (more than usual), rectal bleeding and/or blood in vaginal secretions (non-menstrual). If your platelet count falls below 25,000/mm3, continue to monitor your platelet count closely and/or began therapy. Sometimes platelet counts will return to normal levels without therapy. A definitive standard-of-care has yet to be established but some options include: IVIG (immuno globulin), high dose AZT, short term corticosteroids, Vitamin C, interferon, Dapsone, or (as a last resort) removal of the spleen. Unfortunately, the results of most ITP therapies are temporary. Avoid drugs that interfere with platelet formation such as aspirin, anti- inflammatory agents (i.e.: Advil, Motrin, Naprosyn), and alcohol.
Little research has documented the relationship between HIV and menstruation or hormone production. Anecdotally, HIV+ women report an increase in menstrual irregularities including hypermenorrhea (increased blood flow), amenorrhea (decreased flow or missed periods), dysmenorrhea (cramps), and increased Pre- Menstrual Syndrome (PMS). Researchers are not certain whether irregularities are due to hormonal changes relating to HIV infection or side effects of the drugs being used to combat the infection. A recent study comparing asymptomatic HIV positive women to HIV negative women did not reveal any significant differences in either hypermenorrhea or dysmenorrhea. Regardless of the scientific research (or lack of) if you are experiencing menstrual problems, consult your health care provider for a diagnosis and treatment. Hypermenorrhea can lead to anemia, while amenorrhea could suggest an unplanned pregnancy, ovarian cysts, or in some cases early menopause. Dysmenorrhea could indicate Endometriosis, an infection in the lining of the uterus, which left untreated can lead to more serious problems.
Medications useful for relief of cramps are now available over-the- counter (OTC). They include: Ibuprophen (Motrin, Advil, or much less expensive generic versions) and Naproxyn Sodium (Aleve). These medications are not recommended for some women (see ITP) and if taken improperly (on an empty stomach or at high doses) may cause stomach problems or liver damage. Although no clinical data exist, many women have suggested a variety of alternative treatments. Certain herbs and roots (including common ginger root) may help relieve cramps or PMS and are readily available through health food stores and some pharmacies. Remember that herbs and other natural medications are still medications. Follow package or practitioner's instructions as you would any other medication. Other suggestions include: a heating pad, medical marijuana, yoga (lie in a "fetal" position on your back), or an orgasm. (Note: for women in drug-abuse recovery, marijuana may not be an option). Since everyone is different, experiment with various medications and/or alternative treatments to find what works best for you. If needed, ask your physician for stronger medication. If PMS is your problem, many women have found that reducing caffeine and salt is helpful.
In 1993, 13,500 new cases of cervical cancer occurred among women in the United States. Approximately, 4,400 women died from cervical cancer. Furthermore, a higher incidence of invasive cervical cancer has been observed in HIV positive women compared to HIV negative women. Although the overall 5- year survival rate for all cervical cancer is 66%, the survival rate for cancers detected and treated early is 100%! Anecdotal data suggest that cervical dysplasia (abnormal changes in the tissues covering the cervix, a pre-cancerous condition) appears to progress more quickly in an HIV positive women, especially those who are severely immune compromised. An observational study in New York compared pap results of HIV positive pregnant women with those of a matched group of uninfected pregnant women. A larger percentage of women with less than 200 CD4+ cells had cervical dysplasia, while positive women with greater than 500 CD4+ cells displayed rates of cervical dysplasia similar to that of the negative women. It is vitally important that positive women have regular vaginal exams and pap smears.
A pap smear involves scraping some cells from a woman's cervix and smearing them on a slide. The slide is then observed under a microscope. Government programs can help pay for yearly exams; consult your local health department. "Abnormal" pap results are graded numerically as CIN 1, 2 or , 3 representing increasing progression of the dysplasia to involve deeper layers of the cervical tissue. CIN stands for Cervical Intraepithelial Neoplasia. The higher the number is, the greater the risk of it developing into cancer. If your pap smear is found to be abnormal, you should be referred for a colposcopy (colpo) exam. During a colposcopy, your doctor actually views the pattern of cells on the cervix using a colposcope (a kind of microscope with a strong light that magnifies the cells on the cervix). If anything unusual is seen, a small piece of cervical tissue will be removed (biopsy). The biopsy may cause some pain similar to menstrual cramps.
In a recent study of 52 HIV positive women, in which all had both paps and colposcopy exams performed, cervical dysplasia was detected by pap smear in 35% of the women. Colposcopy revealed dysplasia in 50% of the women. Early reports from another study have suggested equal sensitivity between pap and colposcopy when paps are performed and read properly. This same study hopes to determine if some positive women should have pap smears done more often than others. Most gynecologists would agree that a colposcopy is the preferred diagnostic tool. However, a colpo is an expensive and more invasive procedure which may not be necessary if you have regular and consistently normal pap smears. Although pros and cons of pap versus colpo are still being debated, and no specific recommendations have been issued; all agree that at the very least HIV positive women should have a pap smear every 12 months. A baseline colposcopy followed with regular paps maybe prudent if you have a history of an abnormal pap, have been diagnosed with Human Papilloma Virus (HPV), or have less than 200 CD4+ cells. Another option for this subgroup of positive women would be more frequent pap smears. It is generally accepted that HPV can lead to cancer. Furthermore, many women with vaginal HPV will also test positive for anal HPV . Therefore, if you have been diagnosed with HPV, get it treated early and suggest that your gynecologist also perform an anal pap smear.
Treatment of cervical cancer or cervical dysplasia will vary depending on the severity of the problem. Cryosurgery is the most common and involves freezing the top layer of cervical skin with liquid nitrogen. By destroying the top layers of skin in this manner, it is hoped that new healthy skin will grow back. Cryosurgery will also probably cause cramping. If the cancer is more advanced, it may require laser surgery, burning the skin, radiation, chemotherapy, or surgery.
PID is usually caused by untreated sexually transmitted infections, such as chlamydia and gonorrhea. Often, early symptoms are ignored and PID is not diagnosed until an advanced stage. PID can cause tubal scarring leading to infertility or ectopic (tubal) pregnancy. The most common symptom is pain ranging from moderate to intense in the lower abdomin. Additional symptoms may include: fever, cervical tenderness and/or abnormal vaginal discharge. Bloodwork which may suggest PID include: elevated erythrocyte sedimentation rate and elevated C-reactive protein. A positive lab result for Gonorrhea Chlamydia combined with symptoms would confirm a diagnosis of PID. Other diagnostic methods include: Pelvic exam, sonogram (using sound waves to create an image of internal organs), or Laparoscopic examination (a surgical procedure in which a small microscope is inserted through an incision in the lower abdomen, often performed as outpatient).
Hospitalization is recommended for treatment of PID in HIV+ women although mild or early infections might be treated on an outpatient basis. HIV+ pregnant women suspected of PID should be hospitalized, treated IV with antibiotics approved for use during pregnancy, and monitored closely. Many antibiotics used to treat PID are contraindicated (not recommended) for use during pregnancy. Below are treatment options for non- pregnant women (after first treating the original cause of the infection):
Cefoxitin (2g IV q 6 hr) or Cefotetan (2g IV q 12 hr) PLUS Doxyclycline (100mg IV or PO q 12 hr). Continue therapy at least 48 hours after improvement.
Clindamycin (900mg IV q 8 hr) PLUS Gentamicin (loading dose IV or IM 2mg/kg) followed with Gentamicin (mx dose 1.5mg/kg q 8 hr)
In very severe cases, a hysterectomy may be recommended. A hysterectomy involves removal of all or part of the reproductive organs. As with any major surgery, complications could arise. The risk of complications may be heightened by HIV infection. A second opinion is advised whenever major surgery is being considered.
Vaginal infections, especially yeast infections; are common and will usually respond to standard therapies. However, a woman with a compromised immune system may notice infections which don't respond as well to topical treatments and require more aggressive therapy. Furthermore, if exposed to an STD; she may experience a more serious infection especially if left untreated. Consult "Guidelines for Management of Gynecologic Infections" for more information and remain diligent in preventing STD.
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Pregnancy, Resources, References
One important choice that arises with many HIV-infected women, is whether or not to have a child and what (if any) intervention should be used to reduce the risk of transmission from mother-to-child. Several factors need to be considered when making these decisions or when counseling a woman who is.
In the United States, there is an average 20%-30% chance of transmitting the virus to the fetus during pregnancy, labor, or delivery.
The possibility of transmitting HIV to a child also exists through breast feeding. Therefore, HIV+ women in developed countries such as the United States are advised against breast-feeding.
If a woman's overall health is very poor or she does not receive adequate prenatal care, the risk of transmission could be much higher and possibly place an increased strain on her health.
Factors involved in perinatal transmission of HIV are not fully understood. A high level of virus in the mother's bloodstream or a deficiency in Vitamin A may predict an increased risk of mother-to-baby transmission.
Who will care for the child if mom becomes ill and can no longer do so? Some states allow joint guardianship between the parent and a future or temporary guardian. A responsible and caring mother should never feel pressured into giving up her child unwillingly or prematurely. Refusal of treatment or the decision to continue a pregnancy does not legally constitute irresponsible behavior. Local AIDS organizations can usually provide legal advise or a referral. Adoption services are included in the resource list at the end of this document.
A child can also be an important source of joy and support. A child's presence can decrease one's sense of isolation and provide some women with a reason to survive. In addition, caring for a child can increase self-esteem and often stop a parent from continuing harmful behavior, such as drug abuse.
Many medications used to treat HIV-related infections have either not been studied in pregnant women or are contraindicated for use during pregnancy. Pregnant HIV+ women should seek prenatal care with an obstetrician familiar with HIV and willing to consult with her primary care practitioner. Special Medicare guidelines expand income restrictions, allowing temporary coverage for prenatal, delivery and post-partum care for women who otherwise could not qualify. Often providers at government funded clinics are very knowledgeable in HIV and offer affordable care.
Ultimately, decisions regarding pregnancy must be made by the woman.
It has been assumed that a low CD4+ lymphocyte (T-cell) count may be a risk factor in perinatal transmission. However, more recent observations suggest otherwise. In ACTG-076, women who had around 200 CD4+ cells were no more likely to transmit than women with CD4+ counts much higher. In addition, some prenatal care providers have noticed that CD4+ counts don't indicate as much as CD4%. At time of this printing, no controlled studies have been performed to confirm these observations. A woman's immune system (regardless of HIV status) is naturally suppressed during pregnancy and then rebounds (returns to normal) after birth. It was initially feared that since an HIV+ mother's CD4+ count doesn't always rebound to the pre-pregnancy level, that pregnancy could be dangerous for positive women. However, recent studies have shown that pregnancy does not seem to adversely affect an HIV+ woman's health or cause her disease to progress more quickly.
Data from a recent study (ACTG 076) revealed a significant reduction in the percentage of infected babies in healthy HIV+ women who took AZT on a specified regimen. The women all had CD4+ counts above 200, with the highest CD4+ count at 1800. They took the drug orally during the last half of their pregnancy and were given infusions during labor and delivery. Their babies were given oral AZT for 6 weeks. Among the group of women who took AZT, approximately 8% of the babies were infected. In the placebo group (women who did not take AZT), the rate of transmission was about 25%. Researchers are unclear as to whether AZT reduced the mother's level of virus and therefore prevented transmission, or whether there is something special about the molecular make-up of AZT which reduced transmission. Another unknown is the long term affect on those children given AZT as a fetus and at birth. Although no obvious defects or immediate side effects have been reported, the children who (as fetuses) participated in this study will be followed until age 21.
The Department of Health and Human Services recently issued guidelines regarding the use of AZT to reduce perinatal transmission and can be found in the August 5, 1994 issue of the CDC's Morbidity and Mortality Weekly Report (MMWR). The Centers for Disease Control (CDC) also recently issued guidelines regarding testing of pregnant women for HIV. Both sets of guidelines strongly emphasis the woman making an informed decision with input and advise from her physician.
Another study (ACTG 185), will consider a less healthy population of pregnant women already taking AZT. Women and babies in this study will take AZT as in ACTG 076 with the addition of either Hyper-Immune Globulin (HIVIG) or regularly Immune Globulin (IVIG). A smaller study "nested" within this one will ask whether AZT resistant virus is being transmitted from mother to child and how this may affect the health of the child. An observational study (not administering drug, just looking at lab variables, etc.) of pregnant HIV+ women being conducted by the Ariel Project (Pediatric AIDS Foundation) should provide additional insight into perinatal transmission of HIV.
When a child is born, s/he will still carry the mother's HIV antibodies and therefore may test "false positive." Children usually lose their mother's antibodies by 18 months and you can usually get an accurate antibody test result after your child's 18th month. However, other lab tests (HIV culture and Polymerase Chain Reaction or PCR) can provide a diagnosis much sooner. In the unfortunate case that your baby is HIV+, he/she will require a great deal of special care.
Several factors must be considered if your baby is positive. HIV+ babies usually have a higher rate of health problems, developmental difficulties, and more severe childhood diseases. Caring for a sick child should not cause you to ignore your own health. Remember that as important as insuring your child a healthy happy life may be, it is equally important they have a healthy mom.
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