According to the Centers for Disease Control and Prevention (CDC), an estimated 255,900 women were living with HIV at the end of 2014, representing 23% of all Americans living with the virus. Of women living with HIV, around 12% (or 1 in 8) do not know they are infected.
More than 7,000 women received an HIV diagnosis in 2016 in the United States, representing 19% of new diagnoses. Black women are disproportionately affected by HIV, compared with women of other races/ethnicities.
In the United States, most women are infected with HIV during sex with an HIV-positive man or while using HIV-contaminated syringes for the injection of drugs, such as heroin, cocaine, and amphetamines. Of the new HIV infections diagnosed among women in the United States in 2016, the CDC estimated 87 percent were attributed to heterosexual contact and 12 percent to injection drug use.
Women with HIV can live long, healthy lives with care and treatment. Finding a doctor that you feel comfortable with and who you trust enough to share personal information with is the first, most important step you should take. You need to find a doctor that you can build a good relationship with so that you can feel free to discuss issues that are important to you (such as sexual behavior, birth control preferences, pregnancy concerns) without being judged in a negative way. The good news is that there are many caring and understanding doctors available to treat HIV-positive women.
If you don’t know where to go or who to ask for advice on finding a doctor with experience treating women with HIV, then try searching the POZ directory to find a local AIDS service organization. They usually have a list of recommended doctors in your area.
How often should I go to the doctor?
It is important for all people, regardless of whether or not they are living with HIV, to visit a medical doctor on a regular basis for a checkup. For HIV-positive women, regular checkups are crucial for two reasons:
HIV infection: The activity of HIV in the body, including its effects on the immune system and other bodily functions, needs to be watched carefully. Generally speaking, HIV-positive women should see their doctors every six months for important blood tests (e.g., CD4-cell counts and viral load) and a general checkup (e.g., checking blood pressure, listening to the heart and lungs, looking in the eyes, ears, and mouth). Once antiretroviral treatment is started, many doctors recommend blood tests and a quick checkup every three months. If HIV progresses, more frequent checkups may also be necessary.
Gynecologic health: HIV-positive women are at a greater risk for gynecological problems, such as vaginal yeast infections, pelvic inflammatory disease and cervical problems. As a result, when a women finds out she is HIV-positive, she should always have a gynecologic exam the first time she goes to the doctor. If everything is normal, it’s best to repeat the test six months later. After that, an annual gynecologic exam is sufficient. If, however, a gynecologic exam is not normal or your doctor discovers a problem that requires treatment, more frequent gynecologic exams are usually necessary. Note: If you ever experience abnormal bleeding between your periods or unusual discharge, pain, swelling, or itching in or around your vagina or lower abdomen, you should contact your doctor right away. Even if it is not time for your regular gynecologic exam, these problems need to be checked out if they occur.
How should I prepare for a visit with my doctor?
When visiting your health care provider—which may include a doctor (MD or DO), a nurse practitioner (CNP), or a physician’s assistant (PA)—for the first time, you should provide as much information as you can about your medical history. The best way to do this is to write down as much information as you can before seeing your doctor for the first time. You should be prepared to discuss the following with your health care provider:
- Your medical history (any serious illnesses, sexually transmitted diseases, surgeries, miscarriages, abortions, pregnancies, or allergies in the past).
- Current health problems, including the date and place you learned you were infected with HIV.
- Sexual history (estimated number of partners, history of anal as well as vaginal sex).
- Menstrual cycle.
- History of emotional health (anxiety, depression, moodiness, etc.).
- Medications you are taking or have taken in the past.
- Herbs or nonprescription pills or liquids you are taking for any reason.
- Vaccination history.
- Your method of birth control and how often you use it.
- Any recreational drugs you use.
- Drinking and smoking habits.
- Your immediate family’s health history.
Don’t be shy! It is important that your doctor knows as much about your history as possible. For example, sex and drug use are two things many people are embarrassed to talk to their doctors about. However, they can both have a major impact on physical and mental health and should be discussed openly so that the doctor will know to look for specific problems.
The best time for your appointment —if you know you’re going to have a gynecologic exam—is one week after your period, while the worst time is the week prior to your menstrual cycle.
Some doctors recommend that their patients have blood drawn by a phlebotomist (a person certified to draw blood for laboratory testing), usually at a hospital- or clinic-based laboratory, so that CD4-cells, viral load, and other important blood values can be reviewed at the time of the appointment. This usually requires having blood drawn one to two weeks before the actual appointment with the doctor.
Do not douche at least two to three days before your doctor’s appointment. You should also refrain from sexual intercourse for 24 hours prior to your examination.
You will feel more comfortable during your pelvic exam, if you empty your bladder beforehand.
What can I expect during my exam?
There are several different steps involved in a physical examination. If you want to learn more about the examination process and to understand what your doctor is looking for, ask questions.
An exam usually begins with your doctor or nurse taking your blood pressure, weight, and pulse. You should always tell your doctor or nurse when the first day of your last period was and if you are having any problems.
Your doctor will listen to your heart and lungs, check your breasts for any changes or lumps, and palpitate your abdominal area for any irregularities. A reliable examination of your breasts should take approximately 30 seconds per breast.
During your breast examination your doctor should discuss the monthly breast self-exam (BSE) with you. Your doctor should provide instructions if you are unfamiliar with how to perform BSE. If you are 35 or older, your physician should also discuss mammogram screening for breast cancer.
Your doctor may also want to conduct a pelvic exam, which involves feeling and looking at the inside of the vagina. If your primary care doctor or gynecologist is a man and you are nervous about him conducting a pelvic exam, you may request that a female nurse be present in the room.
To conduct a pelvic exam, you will be asked to lie back on the examination table and put your feet in the stirrups. With your legs secure in the stirrups and your knees spread apart, a metal or plastic speculum will be inserted into your vagina. This device allows your doctor to get a better view of the inside of your vagina and the cervix (located at the back of the vagina) to conduct an examination and to perform a Pap smear.
A Pap smear is a gentle scraping of the loose cells at the opening of the cervix. Once collected, these cells are examined under a microscope to look for abnormalities. To conduct a Pap smear, a long cotton swab is inserted and brushed against your cervix. While these is usual not painful, it can be uncomfortable for a few seconds.
After the Pap smear is finished, your health care provider will insert a gloved finger into your vagina while feeling your lower abdomen with his or her other hand to note the size, shape, and movement of your uterus.
Your doctor may also want to insert his or her finger in your anus to check the health of your rectum. Your doctor may also want to do an anal Pap smear to examine the cells that line the rectum. This is because women who have abnormal cervical Pap smears can also have abnormal anal Pap smears.
Does HIV affect women differently than men?
For the most part, HIV affects men and women the same. Both men and women with HIV may have mild symptoms of infection, even before the virus damages their immune systems. These symptoms include low-grade fevers, night sweats, fatigue, and weight loss. As the disease progresses, both men and women are at risk for a number of opportunistic infections, such as Pneumocystis pneumonia (PCP) and Mycobacterium avium complex (MAC). However, just as men are more likely to develop certain AIDS-related diseases (e.g., Kaposi sarcoma, a type of skin cancer) than women, women are more likely than men to develop certain AIDS-related complications (see below).
There has been some debate as to whether HIV-positive women progress to AIDS—and die faster—than HIV-positive men. Studies conducted early in the HIV/AIDS epidemic suggested that there was a difference, with women facing shorter disease-free survival times than men. Research conducted in more recent years confirmed that women seemed more susceptible to illness and death than men, but not because of biological differences. Instead, HIV-positive women seemed to progress faster to AIDS than men because of social/economic barriers, including lack of access to HIV testing, care, and services; decreased self-motivation; more attention being paid to the health care needs of their children than of their own; and lack of support. Based on these findings, public health experts have stepped up efforts to increase HIV testing among women and to ensure that women who test positive are linked to appropriate health care and support services.
Are there any AIDS-related problems that are specific to women?
Gynecologic diseases—infections and other problems of the female reproductive system—occur in both HIV-positive and HIV-negative women. However, HIV-positive women, especially if they have damaged immune systems, are more likely than HIV-negative women to experience gynecologic problems that reoccur more frequently or can be more difficult to treat. Some of these gynecologic diseases do not cause symptoms that can be felt, thus it is very important that you see your doctor on a regular basis to keep an eye out for these problems.
Genital herpes is a very common infection caused by a virus that results in outbreaks of sores in the genital area. HIV-positive women can experience these sores more frequently and with greater severity than HIV-negative women. Symptoms of genital herpes include: itching and/or burning in the vaginal or anal area; pain in the legs, buttock, or vaginal area; discharge of mucus-like fluid from the vagina; and pressure in the abdomen (gut). The most common sites of herpes sores in women are the outer vaginal lips (labia majora) and the inner lips of the vagina (labia minora). To learn more about genital herpes, click here.
Many women experience changes in their menstrual cycle—their periods—regardless of whether or not they are infected with HIV. Some women report that their periods become more irregular after they are infected with HIV; some HIV-positive women experience heavier (or lighter) bleeding or worsening of PMS symptoms. Another condition is amenorrhea—no menstruation for more than three months in women who are not pregnant or not going through menopause.
Studies have not consistently demonstrated that HIV-positive women are more likely to suffer from menstrual irregularities than HIV-negative women. In turn, most experts don’t seem to think that the diagnosis and treatment of menstrual problems should be handled differently in HIV-positive women.
You should continue updating your doctor on your menstrual cycle and report any irregularities. If you have amenorrhea, it is important that you and your doctor investigate the potential cause. Aside from the possibility of pregnancy or menopause, certain opportunistic infections, ovarian cysts, and other gynecological problems can cause amenorrhea and lead to more serious complications.
Human Papillomavirus (HPV)
Human papillomavirus is spread through sexual activity. In women, it can cause different types of disease, mostly in or around the genital area. These include warts—small, raised, hard lumps that grow in clumps—in or around the vagina or anus. There is also dysplasia—patches or abnormal cells—that can occur on the cervix and in the anus. There is also cancer of the cervix or anus, which can be caused by dysplasia. HIV-positive women are more likely to be infected with HPV than HIV-negative women. HIV-positive women are also more likely to develop dysplasia, and possibly cervical or anal cancer, as a result of HPV.
Pelvic Inflammatory Disease
Pelvic inflammatory disease (PID) is a serious infection that is often caused by a number of common infections, including the sexually transmitted diseases (STDs) gonorrhea and chlamydia. PID starts after these infections travel up from the vagina to other organs in the body, where they can cause serious damage. The most common symptoms of PID are lower abdominal pain, irregular menstrual cycles, vaginal discharge, and painful or frequent urinating.
The infection is usually treated in the hospital with a number of IV (intravenous) antibiotics, and typically requires two weeks of bed rest. Each year in the United States, more than one million women develop PID, and many have tubal pregnancies (pregnancies that occur in the tubes that carry sperm up to the ovaries), resulting in more than 100,000 cases of infertility. This is why it is very important to communicate with your doctor about any problems you may be experiencing and to have regular gynecologic exams to look for problems that you might not know exist.
Vaginal candidiasis is a yeast infection that is relatively common in many women. However, it is much more common in HIV-positive women who have low T-cell counts. The signs of vaginal candidiasis are vaginal bleeding between periods and frothy, stinking vaginal discharges. To learn more about vaginal candidiasis and the ways it can be treated, click here.
Are the treatment recommendations different for women?
The recommendations for starting HIV treatment are similar in women and men. To learn more about starting antiretroviral treatment and some of the issues you’ll want to talk to your doctor about, click here.
It’s worth taking your time to learn about the drugs used to treat HIV before you make a decision about starting treatment.
Do treatments work differently in women than in men?
We still do not know if antiretroviral medications work differently in women than in men. However, there is good reason to believe that all of the drugs used to treat HIV today work just as well in women. HIV-positive women are now living longer and healthier than ever before.
We do know that the amount of some HIV drugs are higher—and can last longer—in the bodies of women compared to men. For example, the amount of the non-nucleoside reverse transcriptase inhibitor Rescriptor (delavirdine) is often higher in the blood of women than in men. There have been a few studies demonstrating that side effects can be worse in women than in men. For example, a study of the protease inhibitor Norvir (ritonavir) found that women experience more nausea, vomiting, and weakness than men. There have also been studies suggesting that HIV-positive pregnant women are at a greater risk for certain side effects than HIV-positive men and HIV-positive women who are not pregnant.
The reasons for higher drug levels and side effects in HIV-positive women are not understood. One possibility has to do with body weight and body size. Because clinical trials enroll a much higher percentage of men than women—and because men generally weigh more and often have a large body frame than women—the doses of medications used to treat HIV-positive women may be higher than they need to be and, as a result, increase the risk of side effects. This, however, does not mean that HIV-positive women should take lower doses of their medications. Until clinical trials determine that women can, in fact, be treated with lower doses of certain antiretroviral medications, women should continue taking their medications at the doses currently recommended for all adults living with HIV.
HIV-positive women do need to be very careful about drug interactions. Specifically, certain anti-HIV drugs can affect the levels of other prescription (and nonprescription) drugs in the body. For example, it is known that several anti-HIV drugs can interfere with the way the body processes oral contraceptives containing ethinyl-estradiol—a popular hormonal form of birth control among both HIV-positive and HIV-negative women. If you’re taking Aptivus (tipranavir), Norvir (ritonavir), Kaletra (lopinavir/ritonavir), Prezista (darunavir), Viracept (nelfinavir), or Viramune (nevirapine), oral contraceptives may not work as well because these drugs lower ethinyl-estradiol levels. If you’re taking Crixivan (indinavir), Sustiva (efavirenz), Reyataz (atazanavir), Lexiva (fosamprenavir) or Rescriptor (delavirdine), you may be getting more ethinyl-estradiol than you need.
Can I get pregnant if I’m HIV positive?
While having children is definitely an option for HIV-positive women (and men), it requires careful planning with a health care provider. This includes “preconception” planning—exploring available options to help you conceive—and taking necessary steps during pregnancy (whether its planned or unplanned) to protect your health and your baby’s.
The good news is that there are many ways to plan a healthy pregnancy and a number of strategies to help you reduce the risk of transmitting the virus to your infant. Click here for more info.
Last Reviewed: March 19, 2018