Managing your health: a guide for people living with HIV

15. Women and HIV

While most of the chapters in Managing your health provide information to assist both men and women in living with HIV, this chapter offers information specific to HIV-positive women’s needs. In this chapter, you can find helpful information about how HIV and its treatments affect women differently than men. You can also learn about how HIV affects women throughout their life, including tips on dating and disclosure and how to plan or prevent pregnancy as well as manage menopause.

This chapter speaks to the experiences of women who are cisgender (that is, women who identify with the sex assigned to them at birth). Some of the information will also speak to the realities of trans women with HIV, while some of it will not. Some of the information may be pertinent to trans men with HIV.

HIV in women in Canada

According to 2014 national HIV estimates there are over 16,000 women living with HIV in Canada.  Since 2011, the annual number of new infections has remained relatively stable, with women between 30 to 39 years of age having the highest proportion of new HIV diagnoses.  New infections in women are mainly from heterosexual sex or injection drug use.

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How is HIV different for women and men?

Some HIV-related infections and diseases are specific to women, such as vaginal candidiasis and cervical cancer.

Some HIV-related infections and diseases impact women differently than men. For example, women with untreated HIV are more likely than men to develop bacterial pneumonia, recurrent herpes simplex infections and Kaposi’s sarcoma (see Chapter 12, HIV-related infections and cancers). Some HIV-related diseases and infections are specific to women, such as vaginal candidiasis and cervical cancer. Fortunately, effective anti-HIV treatment has made these infections much less common for all people living with HIV.

Women with HIV are more likely than men to experience drug side effects such as rash and severe allergic reactions. Women are most likely to see the fat gain associated with lipodystrophy in their breasts and stomach. Women with HIV are also more likely to develop anemia and bone loss.

Drug used in the treatment of HIV can affect women differently than men. For example, women are more likely to experience side effects such as rash and severe allergic (hypersensitivity) reactions to the class of anti-HIV drugs called non-nukes (see Chapter 10, Treatments). Both men and women with HIV can have body shape changes due to drug side effects.  Such changes are called lipodystrophy and lipoatrophy. Women are most likely to see fat gain in the breasts and stomach (see Body Weight and Body Shape Changes). However, newer anti-HIV drugs are less likely to cause such changes in both men and women.

Women are more likely than men to develop anemia and bone loss. These gender-based differences may be due to interactions between the drugs and female hormones. Or, they may be because most drug dosing is standardized, based on research done predominantly in men. Women, who in general weigh less than men, may receive unnecessarily high amounts of the drugs.

Treatment advocates continue to demand greater inclusion of women with HIV in clinical trials for anti-HIV drugs, as well as for clinical trials that are specifically designed to answer questions about treatment for women with HIV.

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Psychosocial issues for women living with HIV

Each woman experiences HIV differently. However, there are some important generalizations that can be made about women’s experience of HIV as a group. Women with HIV may be diagnosed later in the course of their disease than men. This may be because women are not perceived to be at risk for HIV infection. In addition, women moreso than men may lack stable housing, educational and employment opportunities, and steady income. Factors such as these can greatly affect a woman’s ability to make use of HIV testing, treatment and other health-related services.

Once a woman knows her HIV status, research has shown that she may postpone seeking medical care. The reasons for this include:

  • limited access to health care;
  • geographic location;
  • immigration status;
  • lack of power to determine her own health needs;
  • other household responsibilities, such as childcare or looking after a sick partner;
  • the stigma associated with HIV;
  • unstable housing;
  • lack of income;
  • partner violence;
  • substance use;
  • depression and other mental health issues.

These factors can affect women’s health, and support services are important for addressing them. HIV organizations provide many services to women with HIV.

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Your healthcare team

Women and men should receive the same quality and level of medical care. When women with HIV receive appropriate care and treatment for this disease, they experience similar benefits to those experienced by men.

It is preferable if your doctors have experience with HIV.

Many women with HIV see different doctors for different needs. They may see an HIV specialist for HIV-related conditions and a family doctor for health matters unrelated to HIV. Women with HIV may also see a gynecologist (a doctor specializing in women’s reproductive health), and an obstetrician or fertility specialist for issues related to pregnancy. While not always possible, it is preferable if these doctors have experience with HIV. Your family doctor or infectious disease specialist should be able to make referrals to knowledgeable medical specialists (see Chapter 3, Your healthcare team).

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Gynecological care of women with HIV

Having HIV can make certain gynecological conditions more common, more serious and more difficult to treat.

As a woman living with HIV, it is especially important to take care of your gynecological health. Having HIV can make certain gynecological conditions more common, more serious and more difficult to treat. These conditions include:

  • some vaginal infections, including yeast infections and bacterial vaginosis (an infection that changes the normal balance of bacteria in the vagina);
  • sexually transmitted infections such as gonorrhea, chlamydia, herpes and syphilis;
  • pelvic inflammatory disease (a potentially serious bacterial infection of the reproductive system).
Women with HIV should schedule annual Pap tests with their doctor. Cervical dysplasia, an abnormal growth of cells in the cervix that may lead to cancer, can be detected by a Pap test. Cervical dysplasia is more common in women with HIV, especially those with untreated HIV disease.

It is very important for women with HIV to schedule annual Pap tests with their doctor. A Pap test checks for changes in the cervix. An abnormal Pap test can indicate problems requiring closer observation or immediate treatment. Women with HIV are more likely than HIV-negative women to have abnormal Pap test results, especially if they have lower CD4+ cell counts.

During a Pap test your doctor will do an internal examination of the vagina and take a small sample of cells from your cervix. You may feel some discomfort. While doing the Pap test, the doctor should also perform an external examination of the vulva to check for such conditions as herpes and genital warts (see Chapter 7, Your sexual health and Chapter 9, Monitoring your health).

Cervical dysplasia, an abnormal growth of cells of the cervix that can be detected by a Pap test, is more common in women with HIV, especially in women with advanced HIV disease. It is often more severe and difficult to treat than in HIV-negative women. Staying on your anti-HIV drugs, as well as early detection and treatment can prevent the progression of dysplasia to cervical cancer, a life-threatening illness. Cervical dysplasia is caused by infection with a virus called human papillomavirus (HPV). HPV is a sexually transmitted virus that can also cause genital warts (see Chapter 7, Your sexual health).

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Pregnancy and HIV

You can have a healthy pregnancy if you are HIV positive provides extensive information on planning, conceiving, pregnancy and birth.

Birth control

Having HIV can make choosing a birth control method more complicated because women with HIV must consider other factors such as the potential for interactions between anti-HIV drugs and some hormonal contraceptives.

Many women with HIV choose to use birth control. Having HIV can make choosing a birth control method more complicated because women with HIV must consider the potential for interactions between anti-HIV drugs and some hormonal contraceptives.

Condoms are often used as birth control by women and men with HIV because they are a birth control method that also effectively reduces sexually transmitted infections.  There are numerous benefits to using condoms:

  • internal (“female”) and external (“male”) condoms are effective ways to prevent the transmission of HIV and many other sexually transmitted infections;
  • condoms are up to 98 per cent effective at preventing pregnancy if used correctly;
  • the internal condom is the only female-controlled method of birth control that also provides protection from sexually transmitted infections;
  • the internal condom can be inserted prior to a sexual encounter;
  • you don’t need a prescription to buy condoms.

There are drawbacks to using condoms:

  • condoms can break if not put on correctly;
  • using an external condom requires full co-operation from your insertive partner;
  • condoms are perceived by some to decrease sexual pleasure;
  • internal condoms are expensive and not available everywhere in Canada.

Other birth control methods can also be used, although they have no effect on HIV and STI transmission. Before deciding on a birth control method, an HIV-positive woman should consider some important questions. 

  • Will this birth control method interact with my anti-HIV drugs or other drugs I am taking?
  • How well can I incorporate it into my lifestyle?
  • How effective is it at preventing pregnancy?
  • How safe is it?
  • How affordable is it?
  • How will it impact my chances of getting pregnant in the future if I choose to?

Currently available contraceptive methods include:

  • hormonal contraceptives;
  • diaphragms and cervical caps;
  • spermicides;
  • permanent birth control;
  • natural birth control, such as the rhythm method;
  • emergency contraception or the “morning after” pill.

Hormonal contraceptives are available in many forms. Some (such as the birth control pill) are taken orally. Some are injected and others are inserted into the vagina (either at home, such as vaginal rings or sponges, or by a doctor in the case of an intrauterine device). There is also a patch available that provides birth control medication through the skin. Depending on which method you choose, you will need to use hormone methods daily, weekly, monthly or yearly.

Benefits of hormone-based birth control:

  • they are very effective (97 to 99 per cent) in preventing pregnancy;
  • they may reduce the risk of several medical conditions, including certain cancers of the reproductive organs, pelvic inflammatory disease, non-cancerous growths of the breasts and ovaries, and thinning of the bones (osteoporosis).

 Drawbacks of hormone-based birth control:

  • they are not effective against sexually transmitted infections;
  • they can have many possible side effects, including an increased risk of blood clots, heart attack and stroke, especially if you smoke.
Many hormone-based birth control methods can interact with anti-HIV drugs.

Hormone-based birth control methods can interact with anti-HIV drugs. These interactions can decrease the effectiveness of the hormones in preventing pregnancy. These interactions may also decrease the effectiveness of the anti-HIV drugs. If this happens, HIV may develop resistance and future treatment options may be reduced. In all cases, it is important to discuss drug interactions with your doctor before choosing a hormone method. For more information about drug resistance and how it can develop see Drug Resistance and Resistance Testing

Diaphragms and cervical caps are small devices that fit over the cervix at the end of the vagina. Both need to be fitted by a doctor and used with a spermicide cream or jelly. They are less effective than condoms at preventing pregnancy because they do not prevent the sperm from entering the vagina.

Benefits for women with HIV to using diaphragms and cervical caps:

  • they are very effective in preventing pregnancy if used correctly;
  • there are usually few to no side effects;
  • they cannot usually be felt by either partner.

Drawbacks for women with HIV to using diaphragms and cervical caps: 

  • they do not offer protection against sexually transmitted infections;
  • they may be difficult to insert.

Spermicides are available in foams, jellies, creams and suppositories (small capsules of medicine that are inserted into the vagina). They work by killing sperm before it has a chance to reach the cervix. Spermicides are only about 70 per cent effective in preventing pregnancy and offer no protection against sexually transmitted infections. Spermicides do not kill HIV and should not be used as a means of preventing HIV transmission. 

Permanent birth control (sterilization) involves a surgical procedure that can be performed on a woman (tubal ligation) or a man (vasectomy). During a tubal ligation procedure, a doctor closes or blocks a woman’s fallopian tubes so that the egg cannot travel to the uterus and be fertilized. During a vasectomy, a doctor closes or blocks the tubes that carry sperm so that it cannot leave the body. These procedures are almost 100 per cent effective against pregnancy; however, they are not effective against HIV and other sexually transmitted infections, and condoms must still be used to prevent transmission.

Natural birth control methods include abstinence, sex without intercourse, withdrawal of the man’s penis from the vagina before ejaculation, and fertility awareness-based methods, such as the rhythm method, that rely on closely monitoring the woman’s ovulation cycle.

Abstinence—not having intercourse at all—is 100 per cent effective. Other natural birth control methods are only partially effective in preventing pregnancy but offer no protection for the HIV-positive woman from other sexually transmitted infections.

Women with HIV can use emergency contraception to prevent pregnancy after sexual intercourse. The “morning-after” pill is sold over the counter from your pharmacist and is known as “Plan B.” It can be effective in reducing the risk of pregnancy if started within three days after sex. It offers no protection against sexually transmitted infections.

You may be thinking about ending your pregnancy by having an abortion. You may feel you cannot care for a child at this time, or you may have other reasons. Having an abortion is a very personal choice, and only you can decide whether or not to continue your pregnancy. No one can force you to have a baby or force you to end your pregnancy. You may want to know more about abortion. You can discuss your options with your doctor or nurse. Some women worry that having an abortion will make it harder to get pregnant again. Most women go on to have normal healthy pregnancies after an abortion.

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Menstruation and menopause

Throughout their reproductive lives, women with HIV may experience irregularities in their menstrual cycle such as spotting between periods, heavy bleeding or no bleeding at all. Studies have found that menstrual irregularities are more common in women who have low CD4+ cell counts, high viral loads, who are significantly below their ideal body weight or use intravenous drugs, such as heroin or methadone.

Menopause is the point in a woman’s life when her menstrual periods have completely stopped. This usually happens roughly around the age of 50 in HIV-negative women. In women with HIV, it may occur earlier.

A woman can usually tell she is approaching menopause because her periods start changing—they may lengthen, shorten or grow irregular. This time is called perimenopause. During perimenopause and menopause—a period which can last several years—hormone levels fluctuate and you can expect to experience symptoms such as:

  • increasingly irregular menstrual periods;
  • hot flashes;
  • night sweats;
  • vaginal dryness;
  • frequent urination;
  • skin changes, including thinner skin, wrinkling and acne;
  • trouble sleeping;
  • fatigue;
  • lack of sexual desire;
  • forgetfulness;
  • emotional changes;
  • depression.

In addition, some women with HIV have lower CD4+ counts after menopause.

It is important to keep track of your menstrual cycles and discuss menopause with your doctor. Whatever stage of your life, it can be helpful to have your hormone levels checked. 

After menopause, all women are at increased risk of thinning bones and fractures, heart disease and other conditions related to aging. Anti-HIV drugs are also associated with such side effects, so women with HIV may face an even greater risk of these age-related conditions. See A Practical Guide to a Healthy Body for People Living with HIV and Chapter 18, HIV and aging for more information on these issues.

Tips to help stay healthy after menopause

  • Eat a healthy diet (See Chapter 4, Healthy living).
  • Supplement your diet with calcium and vitamin D3 daily to help prevent bone loss.
  • Quit or cut down on smoking.
  • Drink alcohol moderately.
  • Perform intense exercise such as aerobics, swimming, running or brisk walking for 30 minutes three times a week and include weight-bearing exercises in your exercise program.
  • Talk to your healthcare provider about the following tests and exams:
    • mammogram;
    • gynecological exam and Pap test;
    • bone density scan;
    • blood tests for lipid levels;
    • colonoscopy. (See Chapter 9, Monitoring your health, for more information on tests.)

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Dating, sex and relationships

Women with HIV can date, have active sex lives and build healthy relationships.

Women with HIV can date, have active sex lives and build healthy relationships. At the beginning of any relationship, getting to know someone new can be complicated. Adding HIV to the mix makes things even more so. If you are dating someone new, in a relationship or considering one, questions about safer sex and when to disclose your status may be on your mind.

Just as each HIV-positive woman is unique, so is her approach toward whom she tells about her HIV-positive status. Disclosure is often based on a woman’s own experience in relationships. Some women choose to disclose their status before the first date. The benefits to this approach include reducing the stress of keeping a secret. Alternatively, some women prefer to wait until they get to know the person better.

All people with HIV have a legal obligation to disclose their HIV status before having any kind of sex that poses a “realistic possibility of transmitting HIV.” Although the legal definition of significant risk is evolving, it is important to talk with a potential sexual partner about your HIV status before the relationship becomes sexual. A small number of women have been charged for transmitting or exposing a sexual partner to HIV when they had not disclosed their HIV status to them.

For more information about disclosure of HIV status, check out HIV and the Law.

To protect yourself against people who might claim you never disclosed your status, it is a good idea to document your disclosure. You might consider making an appointment for your partner to visit your HIV doctor. Your doctor can then make sure that your partner understands the risks of infection, and can also record the discussion to confirm that disclosure took place.

If you are diagnosed with HIV while in a relationship, it is important that you tell your current partner about your status as soon as possible. This can be an especially difficult task if you rely on your partner for food, shelter, protection or drugs. You may fear losing the relationship and the benefits it provides when you disclose. While this can happen, your partner may also be very supportive. For assistance with the difficult task of telling your partner, a counsellor at your local HIV organizations or a public health nurse can help.

Some women are in abusive relationships and fear violence if they tell their partner that they are HIV-positive. If you are in this situation, it is important that the disclosure takes place in a safe environment and you have a plan in place for your safety. Again, a doctor, friend, counsellor or public health nurse may be able to help.

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Resources

The Positive Side– Health and wellness magazine contains articles about women and HIV.

You can have a healthy pregnancy if you are HIV positive – Comprehensive information for women living with HIV who are pregnant or planning for pregnancy

Menstrual Changes and Sexual Difficulties in A Practical Guide to HIV Drug Side Effects

Hormone changes in A Practical Guide to a Healthy Body for People Living with HIV

Fact Sheets on health issues for women with HIV – Comprehensive information for people living with HIV and their care providers

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About the author

Shari MargoleseShari Margolese has been involved as an active volunteer in the AIDS community since shortly after her own HIV diagnosis in 1993. As a mother of an HIV-positive child, her advocacy efforts have often focused on the needs of the HIV-positive family and the rights of women living with HIV to have children. Shari has been co-principal investigator on several community-based research projects including the development of a proTable of Contentsol for fertility and pregnancy care for people living with HIV in Ontario.

Shari’s volunteer commitments have included working with Voices of Positive Women in Toronto, Blueprint for action on women & girls and HIV in Canada and ATHENA.

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