Back to Other Printed Materials

Treatment Issues for Women

Contents

• Hormones and HIV
• Anemia
• Gut Health
• Muscle Mass
• Lipodystrophy
• Bone Health
• GYN Care in HIV
• Menstrual Problems
• Yeast Infections (Vaginal Candidiasis)
• Herpes
• Genital Tract Infections
• HPV and Cervical Dysplasia
• Anal HPV and Anal Dysplasia
• Conclusion
• Resources
• Credits

Introduction
If you are a woman living with HIV, you probably have a lot of questions. We all do. Since the first studies of HIV in the 1980s, many treatment advances have been made. However, many questions remain about how HIV and its treatments affect women and men differently. Few sources of treatment information and support focus on HIV-positive women.

This booklet was written for women living with HIV. Some of the conditions discussed here affect men as well. Due to limited space and the availability of information about various treatment issues in other places, we have chosen to focus on certain HIV-related conditions and health issues as they specifically affect women, including hormones, anemia, lipodystrophy, and bone density – issues that greatly affect our quality of life.

Whether you’re reading this booklet for yourself or for someone else, we hope you find useful information here. We also encourage you to keep asking questions, learn as much as you can about HIV, and be involved in decisions about your body and health.

To learn more about drugs used to treat HIV, treatment strategies, or anything covered in this booklet, you may want to read some of the free treatment publications listed in the resource section. Some of these resources discuss treatment issues as they specifically relate to women. If you need more detailed information or want to talk about a particular subject – such as pregnancy – you may also want to contact one of the women’s agencies listed, where you can speak with a treatment educator or advocate for further information and support.

While there are references to specific HIV treatments throughout,
this booklet does not discuss antiretroviral therapy in detail. Decisions about whether to start, stop, or switch regimens are not covered.

Hormones and HIV
The endocrine system is made up of numerous cells and organs, each of which carries out important functions that help regulate your body and keep it in balance. Hormones are chemical substances that act like messengers, traveling through the bloodstream between the glands that make them and the cells and organs they act upon. Some hormones help specific organs – like the liver – function by speeding up or slowing down chemical reactions. Others act on cells, proteins, and tissues, triggering growth, metabolism, sex drive, and fertility. Hormones play an important role in our overall health. Since women living with HIV may be at increased risk for certain hormone problems, it’s important to know how you might feel if your endocrine system isn’t functioning properly.

Estrogen, progesterone, and testosterone are three of our main sex hormones. They are part of a class of hormones called steroid hormones and regulate many aspects of our growth. The ovaries make progesterone, most of the estrogen, and some of the testosterone in our bodies. The adrenal glands (located just above the kidneys) also make testosterone and some estrogen. Together, these three hormones influence our sexual desire, behavior, and ability to have children – along with our mood and overall body composition. Levels of estrogen, progesterone, and testosterone fluctuate throughout the month and decrease over time as a part of the aging process.

Balance among these hormones is very important, since changes in the amount of one can affect levels of the others. For example, a drop in estrogen can affect levels of testosterone, progesterone or related hormones such as DHEA. In order for estrogen, progesterone, and testosterone to do what they’re supposed to, our bodies need to make these hormones regularly and get rid of them when we don’t need them anymore. Otherwise, many bodily functions can be disturbed.

How Does HIV Change the Picture?
HIV itself can affect the body’s ability to produce and maintain healthy hormone levels. Changes in the balance of estrogen, progesterone, and testosterone can affect HIV-positive women in many ways. In some cases, this may lead to:

• Menstrual irregularities
• Weight loss 
• Changes in mood and behavior, including sleep patterns
• Decreased bone density
• Fatigue
• Depression
• Decreased sexual feelings or difficulty having orgasms 
• Vaginal changes (lining of the vagina becomes thin, dry, and may tear easily)
• Difficulties getting pregnant or having a healthy pregnancy.

Testosterone
Many people think of testosterone as a male hormone, but it’s also extremely important in women. Testosterone is critical for healthy skin, bones, organs, and muscle. Without it, we’d have a hard time maintaining our sex drive and energy levels.

HIV can lead to low testosterone levels in men and women. Low levels are more common in women with low CD4 counts, women experiencing wasting syndrome, and postmenopausal women. Some drugs used to treat HIV-related conditions – Cytovene (ganciclovir), Megace (megestrol acetate), Nizoral (ketoconazole), and possibly others – can also lower testosterone levels.

Because women generally have so much less testosterone than men, our bodies are sensitive to smaller degrees of change in the amount of testosterone. A small drop may not be noticed by a man but could cause symptoms in a woman. When testosterone is low, you can feel tired, depressed, moody, or weak. You may not feel much like having sex, either. Since low testosterone can also increase your risk for weight loss – including loss of muscle – it’s important to maintain healthy testosterone levels.

Treatment and Replacement Options
Testosterone replacement has been offered to men with HIV for years to treat weight loss and low sex drive, but there is limited experience using it in HIV-positive women. In the last few years, controlled studies have shown that HIV-positive women using replacement testosterone often see their levels return to normal and their symptoms partially or fully resolve.

We need to learn more about dosing and possible long-term effects of testosterone use in women with HIV. So far, research suggests that testosterone therapy may be especially important for women who have wasting or low weight, an increase in fat compared to muscle, and/or bone density loss. If you’re considering testosterone, make sure your provider has experience in this area. Otherwise, get a referral to an endocrinologist.

Testosterone supplements are prescribed as injections, tablets, patches, gels, or creams. Gels and creams don’t have specific approval for use in women, but women often use the gels or creams prescribed for men, in smaller amounts. Each form has pluses and minuses in terms of cost, ease of application, and the ability to maintain consistent testosterone levels in your body. Too much testosterone can cause mood changes, a swollen clitoris, and more facial hair. If you take testosterone, it’s important to minimize side effects while keeping levels in the normal range. Replacement options include:

• Oral: Low-dose testosterone pills are available through compounding pharmacies. Oral testosterone is processed through your liver and shouldn’t be taken if you have liver or gall bladder disease.
  
• Topical: Alternatives to pills include patches, creams, or gels. Patches are like small Band-Aids that you apply directly to your skin. They need to be changed often – every day or every few days. Patches deliver consistent amounts of testosterone to your bloodstream but are only available in a limited range of doses. With creams, your provider can set the dose to control the precise amount of hormone you receive. Testosterone cream is sometimes used to treat low sex drive and vaginal dryness.
  
• Intramuscular: Testosterone injections are rarely used in women.
  

Estrogen and Progesterone
Estrogen regulates your ovaries, causes monthly changes in your uterus, cervix, vagina, and breasts, and is important for vaginal and emotional health. Estrogen also plays a role in insulin release, along with other metabolic and cardiovascular functions. Progesterone – nicknamed the “feel good” hormone – affects your mood, sex drive, and metabolism and is key during pregnancy. Progesterone opposes the effects of estrogen in different parts of your body, so balance between these two hormones is very important. Too much progesterone, for example, can lead to mood changes and depression in some women.

Estrogen levels normally decline as we age. For 5 to 10 years leading up to menopause (called perimenopause), estrogen levels fluctuate significantly. Once you reach menopause, your body produces far less estrogen, progesterone, and testosterone, and levels decline accordingly.

Women with HIV sometimes experience early menopause and/or related symptoms of hormonal imbalance. It’s still unclear exactly how HIV and antiretroviral drugs contribute to estrogen deficiency and/or conditions associated with low estrogen like early menopause. Since so many factors (including age, use of street drugs, medications, and nutrition) affect the way your body makes, uses, and eliminates these hormones, it can be hard to pinpoint the reason for changes in hormone levels. More research is needed to understand the mechanism of endocrine dysfunction in women with HIV.

When estrogen is low, we can be more prone to missed periods, vaginal infections, changes in the lining of the vagina, and pain during sex. Years of premature low estrogen – regardless of the cause – may increase a woman’s risk for high cholesterol and triglycerides, heart damage, and bone loss. It’s important to identify estrogen deficiency and consider ways to restore endocrine balance given that HIV and some drugs used to treat it create additional risks for these same conditions. 

Checking Other Hormone Levels
If you’re much younger than fifty and are missing your periods or having difficulty getting pregnant, it’s important to figure out what’s causing the problem. Specific blood tests can help your provider rule out certain factors like menopause and may give insight about the causes of any symptoms you’re experiencing.

Together, lutenizing hormone (LH), follicle stimulating hormone (FSH), and estradiol (a type of estrogen) regulate your periods and your ability to get pregnant. Blood tests of LH and FSH are often used to determine whether a woman is entering menopause, but levels fluctuate, and these tests won’t tell the whole story for HIV-positive women. If you’re having levels checked, be sure to go the extra mile and check estrogen and perhaps progesterone as well. These tests aren’t routinely done, and your provider may need to send your sample to a special lab. Since test results vary a lot between labs, ask your provider to use the same lab every time.

The timing of your test is equally important since levels of these hormones vary during the normal course of a menstrual cycle. Estrogen levels are highest in the middle of your cycle, while progesterone levels peak later, around day 21. To check estradiol and FSH levels, have blood drawn on day two, three, or four of your period (two, three or four days after you start to bleed). Ask your provider about the best time to have blood drawn for an LH level.

To get a sense of what’s normal for you, you may need to measure estrogen several times a month or measure estrogen, LH, and FSH levels over several menstrual cycles. Results are most reliable if you have your blood drawn at the same time of day and on the same day of your cycle each time. If your FSH level is high (above 20 mIU/ml) for several months, you may be approaching menopause.

Age, stress, and medications also affect estrogen levels. As with testosterone, we don’t have clear guidelines for what’s normal. Plus, it’s possible to have symptoms with a normal estrogen level if there’s an imbalance between estrogen and related steroid hormones. For these reasons, it’s important to pay attention to how you feel and discuss any symptoms with your provider.

Hormonal Therapy: Estrogen and Progesterone
Hormonal therapy is a general term that most commonly refers to the use of estrogen and progesterone – either with or without testosterone – to relieve menstrual and perimenopausal symptoms and, less often, to restore balance to overall hormone levels in the body.

In the past several years, our understanding of the risks and benefits of hormone replacement therapy (HRT) – defined as the long-term use of systemic estrogen and progesterone to replace levels after menopause – has changed dramatically. Estrogen and progesterone therapy provide symptom relief for women during menopause. But, for close to twenty years, many healthcare providers believed that prescribing estrogen and progesterone also had potential long-term health advantages in older women, even though the evidence was limited. Due to this belief and marketing by hormone manufacturers, estrogen and progesterone were widely prescribed to symptomatic women ages 45-70 as long-term “replacement” therapy in the years leading up to and after menopause.

However, in 2002, data from several large multi-year controlled studies that began in the early ‘90s found that long-term estrogen therapy was associated with an increased risk of blood clots and stroke in older postmenopausal women and did not protect against heart disease. The same studies found that estrogen/progesterone therapy slightly increased the risk of heart attack, stroke, and certain forms of breast cancer. On the other hand, the treatment offered slight protection against colon cancer and hip fractures. In the past, estrogen was also prescribed to prevent or treat osteoporosis. Since the studies saw increased problems with heart disease and stroke for women using estrogen/progesterone, many women now prefer to use other medications for bone loss.

Hormonal therapies are now most often used to: relieve menopausal symptoms like hot flashes and vaginal dryness; improve heavy or irregular menstrual bleeding; prevent pregnancy; and less commonly to supplement progesterone and estrogen levels around the time of menopause. Estrogen and progesterone can be used for short periods (one to three years) to relieve the most intense symptoms of early menopause and may be cautiously used for longer periods if the benefits outweigh the risks.

Hormonal Therapy and HIV
Sometimes, younger women with HIV have irregular periods or stop having periods altogether, years before menopause is expected. It’s important to recognize that using estrogen and progesterone replacement in these younger women, including HIV-positive women who’ve had their ovaries or uterus removed due to cancer, may have different benefits and risks than when hormonal therapy is used in older women.

Most of what we know about the risks and benefits of HRT comes from the studies of older postmenopausal HIV-negative women who used estrogen/progesterone for more than ten years. Nonetheless, many younger HIV-positive women use either hormonal contraceptives or estrogen/progesterone therapy to correct HIV-related imbalances in hormone levels and to relieve symptoms during and after menopause. A few studies have shown that women with HIV who use hormone therapies to restore hormonal balance experience more consistent sleep, higher energy level, better mood, and improved quality of life.

The increased risks for stroke, breast cancer, and heart attack seen in the HRT studies may be an issue if you’re using estrogen/progesterone for many years. But the level of risk depends on many individual factors, and hormone treatments are still an important option for some women with HIV. Oral estrogen is processed through your liver and gall bladder, so it isn’t recommended if you have liver or gall bladder disease. When used without progesterone, estrogen can increase the risk for uterine cancer, so it’s important to take both if you still have a uterus. If you have a history of – or are at high risk for – diabetes, uterine fibroids, or blood clots, carefully consider whether HRT is safe for you. As discussed above, long-term use of estrogen (5+ years) has also been linked to an increased risk for certain forms of breast cancer, stroke, and heart disease. If you’ve had breast or uterine cancer, you should not use estrogen/progesterone unless you’ve discussed this choice with your provider.

Types of Estrogen/Progesterone Therapy
Estrogen and progesterone treatments come in many forms. The delivery system you choose plays a big role in how well you tolerate hormonal therapy. When deciding, you and your provider should consider your replacement needs; possible side effects; your personal and family medical history, including breast cancer, blood clots, and heart disease; the health of your vagina, cervix, and uterus; and other factors like your weight. Replacement options include:

• Oral: Women who need to replace estrogen or progesterone throughout the body often use tablets. After tablets are swallowed, they’re broken down in the stomach and absorbed by the intestines. This digestive process makes it necessary to use a higher dose than with the other forms. Tablets come in many different doses, including a combination of estrogen and progesterone. If you’re considering tablets, you may want to start with the lowest possible dose. Some pharmacies (called compounding pharmacies) can make lower-dose tablets if you need a dose that isn’t available at your pharmacy.
  
• Creams: Creams are applied directly to the skin, such as on your upper thigh, abdomen, or vagina. The hormone is absorbed directly into your bloodstream, so doses tend to be much lower than with tablets. Creams are sometimes more costly, but they are an important option because they allow you to find the dose that’s best for you..
  
  Progesterone creams can be used alone (for women who need progesterone but not estrogen) or with estrogen creams. Estrogen creams may contain up to three types of estrogen. They are often used to treat specific symptoms like vaginal dryness and atrophy. Creams applied only to your vagina won’t protect against bone loss or other long-term complications related to low estrogen. They contain a low dose of estrogen and don’t provide consistent levels throughout the body.
  
• Patches: Like creams, patches deliver the hormones through the skin to the bloodstream, bypassing your digestive system. This makes them a safer alternative to tablets for women with liver or gall bladder disease. They look like Band-Aids and can be worn anywhere on your body (on your thigh, stomach, or butt for example). They need to be changed every 3-7 days, sooner for some women. Patches deliver consistent hormone levels into the bloodstream but are not available in a range of doses.
  
• Injections: Progesterone injections are sometimes given as an alternative to birth control pills. When used to prevent pregnancy, Depo-Provera (a synthetic progesterone) is injected once every three months.
  

There are many questions about using hormonal therapy in HIV-positive women, including: whether to use it at all; the right dose/schedule to minimize side effects; how long to use it; and interactions between hormone replacements and HIV treatments. Although interactions between HIV medications and hormonal regimens were finally beginning to be studied recently, much of this research was stalled by the data that emerged in 2002. There are currently no specific dosing recommendations for women using estrogen and progesterone regimens and HIV medications at the same time. If you’re considering hormonal therapy, it’s extremely important to have a full health evaluation – including a thorough physical exam – by your HIV provider and your gynecologist to determine whether this is a safe option for you.

Alternatives to HRT
There are prescription and non-prescription alternatives to hormonal therapy that may relieve specific symptoms associated with hormonal imbalance. Two types of prescription drugs, biphosphonates and selective estrogen receptor modulators (SERMs) provide protection against bone loss without the added risk of breast and uterine cancer. However, these drugs don’t replace estrogen, so they won’t help with hot flashes, vaginal dryness, depression, or other symptoms of low estrogen. Effexor (venlafaxine), used to treat depression and anxiety, has been shown to reduce hot flashes in some women, at least for a few months.

There are also non-prescription remedies for pre-menstrual and menopausal symptoms. Soy contains natural estrogens. Soy products like soymilk, soybeans, and tofu may help relieve symptoms, and some women report positive results using them. Increasing the amount of omega-3 fatty acids (found in eggs, salmon, trout, walnuts) in your diet or by supplement (such as evening primrose oil) may help with menstrual cramps, bloating, swollen breasts, and mood changes. Some women report relief from magnesium for cramps and irritability; vitamin B complex or calcium for bloating; and vitamin E for hot flashes and swollen breasts. Others do not experience full relief from these therapies. Getting enough sleep, regular exercise, acupuncture, and/or yoga may also provide some relief from pre-menstrual and menopausal symptoms.

If you’re considering supplements, be sure to consult your providers. They may be able to help you figure out the best dose, suggest certain formulations, and tell you about interactions between supplements and other medications you’re taking.


Anemia
Anemia is a shortage of red blood cells or hemoglobin, a protein inside red blood cells that carries oxygen from your lungs to the rest of your body. If oxygen is in short supply throughout your body, you’ll feel tired. You may also feel lightheaded or short of breath. Other symptoms include palpitations (irregular heart beat), unusually pale skin, and loss of appetite.

Anemia is extremely common in HIV-positive women. A chronic infection like HIV puts stress on your bone marrow, where red blood cells are made. Some HIV medications can also cause anemia. Anemia is more common in women, people with low CD4 counts and/or high viral loads, and African Americans. It's very important to treat anemia, since the risk of HIV disease getting worse is greater in people with anemia.

Anemia can have many different causes, including:

• A thyroid that’s not working right;
• Bleeding (heavy menstrual or internal);
• Bone marrow damage or infection;
• Deficiencies in key vitamins and minerals needed to make red blood cells – iron, folic acid (folate), B12, and selenium;
  
• Kidney damage; and/or
  
• Medications: AZT (Retrovir, or as part of Combivir or Trizivir), ribavirin, amphotericin, and many others.
  

Gut Health
A healthy intestinal tract is critical in order for your body to effectively absorb and make use of everything you take in through your mouth – food, liquids, and medications. Unfortunately, the intestinal lining can be easily damaged by a variety of diseases and some infections, including HIV. Diarrhea, which can be caused by many things, dramatically affects your body’s ability to process foods and drugs.

Uncontrolled diarrhea makes it difficult to absorb nutrients, medications, and fluid. This can be dangerous for your health. If you have diarrhea five or more times a day, or it lasts more than five days, or you lose more than five pounds, it’s very important to identify the cause and try to correct the problem. To figure out what’s causing the diarrhea, your healthcare provider may:

• Assess your medications to see if one or more can cause diarrhea;
• Ask about your diet and possible association with dairy products;
• Collect a stool sample to look for parasites, protozoa, or bacteria;
• Use blood tests to rule out infections that can affect your intestines;
• Check levels of proteins, vitamins, and other important nutrients in your blood to see how diarrhea is affecting them; and/or
• Use a small microscope to look inside your digestive tract (colonoscopy or endoscopy).
  

Lipodystrophy
Lipodystrophy is the term used to describe a cluster of body shape changes that sometimes occur in people with HIV, especially people taking antiretroviral drugs. It also refers to problems in the way that the body processes fats and sugar. Lipodystrophy has been around almost as long as combination therapy, but, until recently, we haven’t had a good definition of it or a clear understanding of how it happens.

One feature of lipodystrophy is an increase in fat in some areas (breasts, belly, and base of the neck) and/or a loss of fat in other areas (face, arms, legs, and butt). Even if your overall body weight stays the same, your body shape can change significantly. Both men and women get lipodystrophy, but women are more likely to have fat gain – particularly in the abdomen and breasts – and men are more likely to have fat loss. Pay attention to changes in your body and how your clothes fit, and tell your provider about any changes you notice.

The latest thinking about what causes lipodystrophy is that one class of antiretroviral drugs, the protease inhibitors (PIs), more often causes fat gain and another, the nucleoside reverse transcriptase inhibitors (NRTIs), more often causes fat loss. We don’t have a definitive list of the specific drugs that are most likely to cause lipodystrophy, but Zerit (d4T) is one NRTI that has been repeatedly found to lead to fat loss in many people. Research suggests that other medication-related factors also contribute to the likelihood of developing lipodystrophy, including how long someone has been on treatment. Still other factors may contribute to lipodystrophy, including age, sex, and maybe HIV itself.

There isn’t one specific treatment for lipodystrophy. Some research supports switching antiretrovirals to recover fat that has been lost, but the results appear modest. Some people with fat loss in the face have seen improvement with the use of polylactic acid injections (Sculptra) or other surgical options. Liposuction has been used to remove fat at the back of the neck (buffalo hump), but it’s only a temporary solution because the fat usually returns. Using liposuction to remove fat that has accumulated in the abdominal area is dangerous due to the risk of organ damage. Human growth hormone (Serostim) can help normalize the distribution of fat for some people, but the results are usually short-term and it’s expensive. 

People with fat accumulation also often experience an increase in fats (lipids) in the blood – especially cholesterol and triglycerides – which can increase the risk of heart disease. Some people also become less able to process glucose, which can lead to diabetes. If you’re taking HIV medications, especially a protease inhibitor, it’s important to monitor your lipid and glucose levels through regular bloodwork. Lipid levels are best measured in a “fasting state” – at least 10-12 hours after eating. So a morning blood draw is best. Ideally, have your lipid levels checked before starting antiretroviral therapy and monitored periodically while on treatment.

Some people with high lipid or blood sugar levels address the problem by changing HIV medications, but this may not work and isn’t an option for many people. There are medications that help control diabetes and others that lower cholesterol and triglyceride levels. Use of these medications requires a careful look at possible interactions with HIV medications and can cause a new set of side effects.

Three things that you can do: eat healthy foods, exercise regularly, and stop smoking. If you’re overweight, smoke, don’t exercise, and/or are over 40, you’re already at higher risk for diabetes and heart disease – with or without HIV. Dietary changes that help keep your heart healthy include: eating less animal fats like butter, cheese, and red meat; adding more fish, especially salmon and sardines, fish oil or flax seed supplements to your diet; and consuming more nuts, whole grain breads, and cereals. Exercise doesn’t have to mean joining a gym; there are many other ways to get your body moving. The important thing is to work towards exercising for 20-30 minutes three to five times a week and to break a sweat while doing so. Women who use oral contraceptives may also want to avoid long-term use of progesterone-dominant ones – they keep estrogen

Bone Health
When we’re young and growing, our bones get stronger. At some point, perhaps around age 30, we stop building bone. Our bones then get weaker as we get older. Aging women generally experience bone loss at a much higher rate than men, which is closely tied to decreasing levels of estrogen (see Hormones and HIV). Two particular bone conditions have been seen in people with HIV. Osteoporosis (sometimes called brittle bones) is a loss of mineral in bones, making them more porous and more likely to fracture. Osteonecrosis is the death of bone due to a lack of blood supply to the bone. While all the bones can become weak, common sites of fractures are the hip, the spine, and the wrist.

Even without HIV, the risk of losing bone is greater if you are female, over age 50, in or past menopause, white or Asian, slender, and/or have a family history of osteoporosis. Bone loss also happens faster if you smoke, drink alcohol or a lot of caffeine, use corticosteroids like prednisone, don’t get enough calcium in your diet, or don’t exercise.
 
People with HIV seem to experience bone loss more often than people without HIV. We don’t know whether this is because of HIV disease, its treatments, or a combination of both. Researchers are looking at individual HIV drugs to determine which ones may accelerate bone loss.

You can have osteoporosis without any noticeable symptoms, but tests can detect the condition. It’s very important to be tested if you’re at high risk – many women with HIV are – or if you experience bone pain. An X-ray called a DEXA scan is used to measure bone mineral density. It’s also important to have your hormone levels checked, since estrogen deficiency can increase the risk of bone loss.

There are several things you can do to slow down bone loss – stop smoking; reduce or stop alcohol and caffeine intake; and increase vitamin D and calcium with supplements and/or by eating foods such as leafy green vegetables and soy-based or dairy products. Regular exercise that requires you to bear weight, such as walking or lifting weights, also helps strengthen your bones.

Drugs called biphosphonates – Fosamax (alendronate) and Actonel (risedronate) – are often used to prevent and treat bone density loss in postmenopausal women. These drugs haven’t been studied in pre-menopausal women with bone loss, but some healthcare providers offer them to HIV-positive women with low bone density. Additionally, Evista (raloxifene), a selective estrogen receptor modulator (SERM), may offer bone and heart benefit for women with low estrogen without increasing the risk of breast or endometrial cancer (cancer of the uterine lining).


GYN Care in HIV

Finding Good Care
Many women have an HIV provider but don’t get good GYN care. One of the most important things we can do for ourselves is find a gynecologist we feel comfortable with. If we don’t trust or understand our provider, how can we get answers we can trust? Be sure your gynecologist has experience treating women with HIV. It’s okay to ask, “How many women with HIV do you treat?” You can also talk with other HIV-positive women who feel they get good GYN care and find out where they go. Or call your local infectious disease (ID) clinics – many hospitals have ID clinics that offer specialized GYN services for women with HIV.

Since there’s still debate about standards of GYN care in HIV, screening and treatment recommendations for HIV-positive women can vary from clinic to clinic. It’s important to find a provider who knows the different methods used to screen and diagnose GYN conditions seen in HIV. The next few pages discuss some of the most common GYN problems that affect HIV-positive women.


Menstrual Problems 
Many HIV-positive women report changes in their menstrual cycle, including irregular cycles and more pre-menstrual symptoms. Available research suggests the reasons may have less to do with HIV than other things, but it’s important that we pay attention to our periods – especially any changes in the amount of bleeding or pain. The following is a list of some common menstrual changes and things to consider doing if you experience them:
 

Menstrual Symptom	Possible Causes	What To Do  About It?
Lighter bleeding           or Missed periods           or No periods at all	Pregnancy Chronic infection like HIV Malnutrition Regular heroin, methadone, or amphetamine use AIDS-related wasting Steroid use Menopause Cysts and other problems in the ovaries	Take a pregnancy test If you miss two or more periods in a row, have a pelvic exam and blood tests to rule out possible infections Check hormone levels.
Heavy bleeding	Low platelets Fibroid tumors in the uterus PID (Pelvic Inflammatory Disease) Genital tract infection HIV drugs such as Norvir (ritonavir), Retrovir (AZT), or others	Get blood test to check  platelet counts. Review list of drugs and contraceptives you’re taking with your health care provider. Monitor closely for anemia. Check progesterone levels. Possibly, get a sonogram.
Bleeding between periods              or Bleeding after sex	Chlamydia High-grade cervical dysplasia Problems with the pill Vaginal tearing from sex Atrophy (thinning or weakening of vaginal lining)	Get a pelvic exam and Pap smear. Get a sonogram or colposcopyto allow your provider to see where the bleeding’s coming from . Check hormone levels.

Too much blood loss can lead to anemia, so it’s important to identify all possible sources of heavy bleeding and try to correct the problem. Heavy bleeding – along with bleeding between periods – may signal an infection in your cervix, vagina, or ovaries. If you have any of the above symptoms, be sure to discuss them with both your GYN and HIV medical providers.
 

Genital Tract Infections
The vagina, cervix, ovaries, uterus, and fallopian tubes are all part of the genital tract. Most genital tract infections begin in the vagina and are usually easy to treat. Many – but not all – of these infections are sexually transmitted, including chlamydia, gonorrhea, trichomonas (trich), human papilloma virus (HPV), herpes, and syphilis. Condoms can prevent most, but not all, sexually transmitted infections.

If left untreated, simple vaginal infections can progress up your vagina to your cervix, where they may cause inflammation (cervicitis), cellular abnormalities (dysplasia), or both. These conditions are more common in women with HIV, so it’s important to seek prompt diagnosis and treatment for any symptoms you experience. Some infections don’t have early symptoms, but symptoms that you might notice include sores, discharge, pain, or fever. Untreated infections can progress even further up your genital tract to your uterus, ovaries, or fallopian tubes. Here, they can cause pain, inflammation, and fertility problems.

PID (pelvic inflammatory disease) is a general term that refers to inflammation somewhere in your upper genital tract. It usually begins with easy-to-treat infections like chlamydia or gonorrhea. Though no more common in HIV-positive women, PID can be very serious and cause long-term damage if it occurs. The best way to prevent PID is to have regular GYN exams every six months, especially since some sexually transmitted infections don’t have noticeable early symptoms. Go in right away if you have any of the following symptoms: ongoing belly and/or lower back pain; irregular periods; abnormal bleeding; cervical tenderness (during sex or on exam); painful urination; abnormal vaginal discharge; or chills and fever.

Even if you don’t have any symptoms, regular and thorough GYN exams are particularly important for HIV-positive women.

If you’re having sex, at least one physical exam a year should include a pelvic exam; a cervical swab (different from a Pap smear) for chlamydia, gonorrhea, and other common infections; and a blood test to check for syphilis. Other things to consider:

• A simple vaginal sample can identify yeast and bacterial levels in the vagina and measure your vaginal pH.
• Pap smears only detect cervical abnormalities. If you’re having problems higher or lower in your genital tract, you may need a combination of blood test, cultures, pelvic exam, sonogram, colposcopy, or biopsy to diagnose the problem.
• If you have ever had genital warts, anal sex, or have HPV, it’s important to have:
  
- A Pap smear every six months – sooner if results show abnormal cells.
- A rectal (butt) exam to check for warts in the anus.
- An anal Pap smear to check for abnormal anal cells.

• You can be protected from Hepatitis A and Hepatitis B with simple vaccinations. If you haven’t been vaccinated, ask your healthcare provider about this simple series of shots.
  
  

• Chronic HPV infection
• Infection with the HPV strains that are more likely to cause cancer
• HPV in both the cervix and anus
• Several strains of HPV at once
• Reactivation of an HPV infection that was previously under control.
  

Screening Methods
Pap smears are the first step in screening for abnormal cell changes in the cervix and the anus. Pap smears collect surface cells – called squamous cells – from the area of your cervix or anus most likely to show damage caused by HPV. Pap smears can detect inflammation and, in most cases, predict cervical or anal cell abnormalities. The traditional Pap test can miss abnormal cells. This makes it particularly important to be screened on a regular basis. New liquid-based preparations (ThinPrep, AutoCyte PREP) generally appear to be more sensitive.

As an HIV-positive woman, you may need more frequent screening than a woman who doesn’t have HIV. How frequently depends on a lot of individual factors, including the results of your previous Pap smear, whether you’ve been treated for warts or other abnormalities, and the state of your immune system. If your CD4 count is below 250 or your CD4 count is above 250 but has been dropping, have a Pap smear at least every six months. For women with HIV, any Pap smear result showing abnormal cells must be further evaluated by colposcopy.

Colposcopy is an exam of the cervix using a low-powered microscope to look at the tissue more closely. It allows your healthcare provider to see a magnified portion of your cervix and identify any areas of abnormal tissue, such as lesions, warts, and inflammation. A limitation is that colposcopy can’t distinguish well between mildly abnormal tissue (low-grade lesions) and abnormal tissue that is more likely to progress to cancer (medium to high-grade lesions). If lesions are seen during colposcopy, they are often examined by biopsy.

Biopsy is a procedure that removes and examines a small tissue sample from your cervix. Biopsy is the most reliable way to tell the difference between low-grade and high-grade lesions. Biopsy is important for diagnosis, but it can be uncomfortable, even painful, and some women have mild bleeding afterward. If you need a biopsy, ask your provider about pain management options during the visit before the procedure.

Many HIV-positive women need more than one biopsy as part of diagnosis or follow-up care. Understandably, this can make it hard to go back. But it’s important to stay involved in your care and have input into treatment decisions that affect you. If you need repeated biopsies and find yourself feeling resentful, angry, or scared, tell your gynecologist. Remember – your GYN wants to keep you healthy. The more your providers know about what’s going on with you, the better they’ll be able to care for you.

What Do Pap Test Results Mean?
If you’ve had an abnormal Pap smear, you may recognize the terms LSIL, CIN, HSIL, or dysplasia. These are some terms from the many different systems used to classify cervical and anal tissue abnormalities. Most U.S. labs use the Bethesda System to report Pap smear results. The system includes information about the sample (satisfactory, limited, unsatisfactory) and classifies cell abnormalities according to the following categories:

• Negative for squamous intraepithelial lesions (SILs) or dysplasia
  No changes in size and shape of cells were seen. The cells in the smear appear normal.

• ASCUS - atypical squamous cells of undetermined significance; or
  ASC-H - atypical squamous cells, can’t rule out high-grade lesions(HSILs)
  ASCUS and ASC-H are cells that can’t be classified as completely normal or abnormal. ASCUS may indicate you have inflammation in your cervix. ASC-H is a new category that was added in May of 2002. If you get either of these results, you should have a colposcopy to rule out the possibility of any high-grade abnormalities.

• LSIL - low-grade squamous intraepithelial lesion
  LSIL means there are abnormal cells on the surface of your cervix. This category can be broken down further into HPV infection and CIN I. CIN stands for cervical intraepithelial neoplasia; the “I” indicates severity (I, II or III). LSIL is not considered a serious abnormality, but it needs to be watched carefully. At this time, treatment is not considered standard for HIV-positive women with LSIL.
  

• HSIL - high-grade squamous intraepithelial lesion
  HSIL is a more severe abnormality, with a higher likelihood of progressing to cancer. HSIL can be further broken down into CIN II or III. Any high-grade lesion in your cervix, vagina, or anus requires treatment.
  
  
• Invasive cancer
    Stage I: confined to the cervix.
    Stage II: extends beyond the cervix but not to the pelvic wall;
      may include upper vagina involvement.
    Stage III: extends to either the lower third of the vagina
      or the pelvic wall.
     Stage IV: extends beyond the pelvis to nearby organs, such as the
      bladder or rectum or to organs beyond the pelvic area, such as the
      lungs, liver, or bone.
  

Various sets of screening recommendations exist for HIV-positive women, and there is not complete agreement about what the standard of care should be. Recommendations for women with HIV are generally more aggressive than those for HIV-negative women. They urge Pap smears more often and colposcopy (with possible biopsy) anytime ASCUS or other abnormalities are found. The following chart is adapted from the Bethesda System and incorporates some of the various screening recommendations for women with HIV.
 

If Pap smear shows:	Then:
Negative	Pap smear in 6 months to a year.*
ASCUS or ASC-H	Colposcopy to investigate; Treat any source of inflammation; Follow-up Pap smear in 3-8 months.*
LSIL	Colposcopy plus biopsy; Repeat Pap smear in 3-8 months.*
HSIL	Colposcopy plus biopsy to determine degree of lesions, followed by treatment; Repeat Pap smear in 4-6 months.*
Carcinoma in Situ (precancerous condition) or invasive cancer	Immediate treatment, plus frequent follow-up through Pap smear and colposcopy to prevent recurrences.*

*Depending on CD4 count

Treatment Options for Dysplasia
For those of us with HPV, the best way to prevent damage from the virus is to be screened carefully and regularly for changes in the cervix and anus, and then to treat any high-grade abnormalities so that they don’t progress to cancer.

Treatments for HPV can remove genital warts, HPV lesions, and abnormal tissue. Genital warts can be treated with topical solutions or by laser, freezing, or burning. Dysplasia treatments focus on destroying the abnormal tissue so that it doesn’t progress to cancer. Treatment options include:

• LEEP (loop electrosurgical excision procedure): removes abnormal tissue with an electric scalpel.
• Cone biopsy: removes a cone-shaped piece of tissue from the cervix by surgery or laser. This is done under anesthesia. It’s frequently used to treat high-grade dysplasia in HIV-positive women.
• Electrocautery (burning).
• Topical solutions.
  

• Many respond poorly to standard therapies used to treat HSIL.
• Some need multiple treatments using different methods.
• Treatment of HSIL can only try to manage HPV – it won’t
  prevent a recurrence.
• There is low success treating LSIL. 
• Anal and cervical dysplasia and cancer are more common in           HIV-positive women

As HIV-positive women, it’s important that we are evaluated regularly for cervical and anal HPV. Many providers have no experience with anal Pap smears. If our healthcare providers are unskilled at performing anal Pap smears, we need to encourage them to be trained and become skilled with anal screening. If they refuse, we should insist on being seen by providers who can perform these necessary evaluations. Such providers exist, and anal pap smears are increasingly becoming part of care for HIV-positive people with anal HPV infection. If we demand it, important medical procedures like anal screening will become routine components of our HIV care.

Conclusion
For many women, HIV is just one of many daily struggles. Poverty, addiction, and violence are common. While we often talk about physical health in HIV, we rarely talk about the grief, loss, fear, and isolation so many HIV-positive women feel at one point or another. Without support, these feelings can be overwhelming. Regardless of where you’re at, we encourage you to reach out and find support wherever you can. In addition to learning as much as possible about HIV, treatment options, and the physical conditions discussed in this booklet, it’s important to take care of yourself mentally and emotionally.

We encourage all women reading this booklet to reach out to other women with HIV and people in your life who support you. Most importantly, keep asking questions of your healthcare providers, other people with HIV, treatment educators, whomever! The more you know, the better you’ll be able to advocate for yourself and other people living with HIV.

There are lots of unanswered questions about HIV, especially for women, and no one answer about the best way to treat it or live with it. Until we have better answers, we need to keep pressuring research institutions, industry, healthcare providers, activists, and our own organizations to take an active interest in our experience.

FREE INFORMATION & ORGANIZATIONS FOR HIV-POSITIVE WOMEN

Babes Network    BABES newsletter (English & Spanish)   
(206) 720-5566 or write 1120 E. Terrace St., Seattle, WA 98122
                                                        www.babesnetwork.org/BabesTalking.html

NJWAN: New Jersey Women and AIDS Network  Sister Connect Hotline (800) 747-1108                                                                          www.njwan.org

Positive? how are you feeling?  brochure for women.   
Call Project Inform (800) 822-7422               www.projinf.org/pub/ww/positive.html

The Well Project                                                         www.thewellproject.org
Email address and password required to access full site; information about HIV issues relating to women; bi-monthly email newsletter. (434) 293-2955

Women Alive  Los Angeles, CA  (323) 965-1564   Hotline: (800) 554-4876     
Treatment information, supportive services, & lots of links; newsletter available by mail.                                                                               www.women-alive.org

WORLD: Women Organized to Respond to Life Threatening Diseases  Oakland, CA   (510) 986-0340 (Bilingual)                               www.womenhiv.org
Treatment information (particularly about pregnancy), advocacy, news, and HIV University;  WORLD newsletter by & for HIV+ women and their loved ones.

ONLINE SOURCES OF TREATMENT INFORMATION 

AIDS Community Research Initiative of America (ACRIA)       www.acria.org          
Free brochures in English & Spanish and quarterly treatment publication, ACRIA Update. Call (212) 924-3934 ext.120 or order online.

AIDS Nutrition Services Alliance (ANSA)                       www.aidsnutrition.org
Fact sheets on nutrition and HIV and links to other nutrition sites.

AIDSinfo  Guidelines for the Use of Antiretroviral Agents     www.aidsinfo.nih.gov

AIDSmap                                                                          www.aidsmap.com 
Detailed information about the immune system, current and investigational antiretrovirals, opportunistic infections, prevention, and lots of information about women & HIV. 

AIDSmeds.com                                                                www.aidsmeds.com
Treatment information & news, question & answer forums.        

The Body                                                                           www.thebody.com
Site offering treatment materials from a variety of sources.  Check out the women’s section: www.thebody.com/features/women

Hepatitis C Support Project  HCV Advocate                    www.hcvadvocate.org
Information & support for people with hepatitis C/HIV and hepatitis B/HIV co-infections.

National Center for Complementary and Alternative Medicine (NCCAM)                                                                           www.nccam.nih.gov
Not HIV-specific; info about complementary and alternative therapies & clinical trials studying these therapies. (888) 644-6226; TYY/TDY: (888) 464-3615.

New Mexico AIDS InfoNet 
Fact sheets in English & Spanish & lots of links.                  www.aidsinfonet.org

Project Inform                                                               www.projectinform.org
Lots of HIV treatment information: newsletters; fact sheets and articles by topic; and literature specific to women, in English and Spanish. National treatment hotline (English & Spanish): (800) 822-7422

Written by:
Jen Curry
Angela Garcia
Jennifer McGaugh
Heidi Nass
Cathy Olufs
Claire Rappoport

Edited by: Jen Curry, James Learned and Heidi Nass

Graphic Design: Joy Episalla

Additional Contributors: Louise Binder, Constance T. Chang, Susan Cu-Uvin, MD, Judith Currier, MD, Ann Danoff, MD, Jerome Ernst, MD, Lisa Frederick, Steven Grinspoon, MD, Tim Horn, Donna M. Kaminiski, Mark Milano, Jeff Scheuer, Tracy Swan, Claire Wingfield, and ACRIA’s Community Advisory Board.

Funding for this brochure was provided by an educational grant from Boehringer Ingelheim Pharmaceuticals, Inc.

Copyright 2002, 2005 AIDS Community Research Initiative of America (ACRIA). All rights reserved. Reproduction of this booklet is encouraged so long as it is copied in its entirety and appropriately cited. 

230 West 38th Street, 17th Floor, New York, NY 10018
212-924-3934 FAX 212-924-3936

J Daniel Stricker, Executive Director