September is PCOS Awareness Month

PCOS DIAGNOSIS

There is not one special test that can diagnose PCOS. Your doctor will start by asking questions about your medical history of symptoms such as irregular or skipped periods, weight changes, hair changes, and acne. Your doctor will also ask about your family’s medical history. Your doctor will check your weight and vitals and do a complete physical exam. A number of lab tests may be ordered including blood sugar and androgen levels. A sonogram may also be done to evaluate the ovaries.

These tests help to make a diagnosis of PCOS and exclude other causes for your symptoms.  Your primary doctor may also refer you to a hormone specialist, or endocrinologist, to help direct the workup needed to rule out other causes and confirm the diagnosis of PCOS.

Is there a cure for PCOS?

There is no cure yet, but there are many ways you can decrease or eliminate PCOS symptoms and feel better. Your doctor may offer different medicines that can treat symptoms such as irregular periods, acne, excess hair, and elevated blood sugar. Fertility treatments are available to help women get pregnant. Losing as little as 5% excess weight can help women ovulate more regularly and lessen other PCOS symptoms. The ideal way to do this is through nutrition and exercise.

You may feel that it is difficult to lose excess weight and keep it off, but it is important to continue the effort. Your efforts help reduce the risk of developing serious health complications that can impact women with PCOS much sooner than women without PCOS. The biggest health concerns are diabetes, heart disease, and stroke because PCOS is linked to having high blood pressure, pre-diabetes, and high cholesterol.

PCOS treatments

If a woman is not seeking to become pregnant, hormonal birth control (most often birth control pills) is a standard treatment. Birth control pills regulate periods and improve excess hair growth and acne by lowering androgen levels and protect the endometrium (inner lining of the uterus) against abnormal cell growth. Older types of birth control pills have a lower risk for dangerous blood clots and are preferable over new types of birth control pills.

Although metformin is not approved by the FDA for treatment of PCOS, many doctors prescribe it for PCOS patients. Metformin is a medicine that makes the body more sensitive to insulin. This can help lower elevated blood glucose levels, insulin levels, and androgen levels. People who use metformin may lose some weight as well. Metformin can improve menstrual patterns, but metformin doesn’t help as much for unwanted excess hair.

Many women who are diagnosed with PCOS are often automatically prescribed metformin. However, it’s important to have a reason for taking metformin and not be on it just because of a diagnosis of PCOS. Discuss with your doctor the reason why you are taking metformin and whether it is providing a benefit to you.

Clomiphene (Clomid) is an oral medication that is the most common treatment used to induce ovulation. The use of both metformin and clomiphene has about the same fertility results as clomiphene use alone. A benefit is that metformin may help reduce the risk for ovarian hyperstimulation syndrome (see also “What is ovarian hyper-stimulation syndrome (OHSS) during assisted reproductive technology (ART) fertility treatments. Other treatments to stimulate ovulation include another oral medication called letrozole (Femara) and gonadotropins which are hormones that are given by injection. In vitro fertilization (IVF) and in vitro maturation (IVM) may be other fertility treatment options.

Lifestyle measures to achieve a weight loss of 5%-10% in overweight women can help regulate ovulation and periods. Although the basic approach of nutrition is needed, it can be more challenging to lose weight and maintain weight loss with PCOS. Dr. Dunaif from Northwestern is very encouraging that even “a little bit of weight reduction and exercise can improve insulin sensitivity.”

Drugs that curb androgen levels are another common treatment used for PCOS, although they are not officially FDA-approved for PCOS treatment. By lowering androgen levels, many patients have significant improvements in androgen-related symptoms such excess hair. Spironolactone is the anti-androgen drug most often used.

To curb hirsutism (excess hair), typically patients start with spironolactone. The unwanted hair doesn’t disappear but grows in finer and lighter. Improvement of acne generally comes more quickly. Unfortunately, this drug is unlikely to help with androgen-related hair loss (aka androgenic alopecia) which is more difficult to treat.

Two important things to note are that the long-term safety effects of use are not known (but the drug has been in use for decades already) and spironolactone IS NOT SAFE in pregnancy, so it is commonly used in conjunction with birth control pills. This use of birth control pills also protects against abnormal growth of the lining of the uterus. Some women cannot take birth control pills, in which case it is important to use other means of birth control if you are sexually active while taking spironolactone.

Treatments targeting the skin or hair more directly are also available to help with hair problems. These include the prescription cream eflornithine hydrochloride (Vaniqa), acne products, and cosmetic treatments such as laser therapy and electrolysis.

Vitamins, supplements, and other complementary treatments are popular among women with PCOS. Researchers are studying the effectiveness of such treatments. Popular treatments include cinnamon, myo-inositol, vitamin D, B complex vitamins, and acupuncture.

 
 

Tips on how to talk to your doctor about PCOS

It will help to jot down questions or topics to discuss prior to your doctor’s appointment. It is easy to forget things when you are at a medical appointment, so this will help to ensure that all important items are covered. Anticipate questions your doctor may ask such as;

  • How your symptoms have been
  • What measures have helped
  • What changes have been made in your treatment regimen (that you have initiated on your own or as a recommendation from another provider)
  • Many women see more than one doctor to address different aspects of their PCOS. This can lead to feeling frustrated with having to share your PCOS situation over and over with different doctors. Visual aids can help.

BE STRONG AND FIGHT PCOS

PCOS Symptoms

Symptoms of PCOS may begin shortly after puberty, but can also develop during the later teen years and early adulthood. Because symptoms may be attributed to other causes or go unnoticed, PCOS may go undiagnosed for some time.

Women with PCOS typically have irregular or missed periods as a result of not ovulating. Although some women may develop cysts on their ovaries, many women do not.

Other symptoms include:

  • Weight gain. About half of women with PCOS will have weight gain and obesity that is difficult to manage.
  • Fatigue. Many women with PCOS report increased fatigue and low energy. Related issues such as poor sleep may contribute to the feeling of fatigue.
  • Unwanted hair growth (also known as hirsutism). Areas affected by excess hair growth may include the face, arms, back, chest, thumbs, toes, and abdomen. Hirsutism related to PCOS is due to hormonal changes in androgens.
  • Thinning hair on the head. Hair loss related to PCOS may increase in middle age.
  • Infertility. PCOS is a leading cause of female infertility. However, not every woman with PCOS is the same. Although some women may need the assistance of fertility treatments, others are able to conceive naturally.
  • Acne. Hormonal changes related to androgens can lead to acne problems. Other skin changes such as the development of skin tags and darkened patches of skin are also related to PCOS.
  • Mood changes. Having PCOS can increase the likelihood of mood swings, depression, and anxiety.
  • Pelvic pain. Pelvic pain may occur with periods, along with heavy bleeding. It may also occur when a woman isn’t bleeding.
  • Headaches. Hormonal changes prompt headaches.
  • Sleep problems. Women with PCOS often report problems such as insomnia or poor sleep. There are many factors that can affect sleep, but PCOS has been linked to a sleep disorder called sleep apnea.  With sleep apnea, a person will stop breathing for short periods of time during sleep.

 

What is an ovarian cyst?

The definition of a cyst is a fluid-filled sac. Cysts can occur anywhere in the body. With PCOS, women can develop “cysts” due to eggs not being released over time. The follicles keep growing and form multiple “cysts.” These may be described as appearing like a “string of pearls” in an ultrasound image.

Despite the name, women with PCOS don’t need to have ovarian cysts. Women without PCOS may develop cysts related to other reasons. The most common type of ovarian cyst is called a functional cyst.

These cysts are described as “functional” because they often develop during the menstrual cycle. There are 2 types:

  • Follicular cysts: These usually go away on their own in 1 to 3 months. These form when an egg doesn’t get released as expected, so the follicle keeps growing.
  • Corpus luteum cysts: These also usually go away on their own. These form after the follicle ruptures and releases the egg (ovulation). The follicle reseals and fluid starts to build up within it. They can enlarge and cause pain, bleed, or twist the ovary. Fertility medicines used to promote ovulation (such as clomiphene) can increase the chances of developing these type of cysts.

Ovarian cysts can also be related to endometriosis, or formed from the outer surface of the ovary (cystadenomas), or formed with non-ovarian tissue (dermoid cysts).

 
Sources: Office of Women’s Health, Department of Health and Human Services. American College of Obstetrics and Gynecology.

PCOS DURING PREGNANCY

PCOS Pregnancy and Delivery Complications

Women with PCOS are at higher risk for pregnancy and delivery complications. These include a three-fold increase in miscarriage risk in early pregnancy compared to women without PCOS, gestational diabetes (diabetes during pregnancy) which can lead to large babies, preeclampsia which is characterized by sudden elevated blood pressure and body swelling after the 20th week of pregnancy, preterm birth, and C-section delivery.

Diabetes during pregnancy is a concern many women with PCOS must face.

What care do you need during pregnancy?

Blood glucose. While pregnant, you will probably need to check your blood sugar more often than before pregnancy. Check your blood sugar as often as your doctor recommends. You should probably test it before meals, one or two hours after a meal, at bedtime, and during the night.

Ask your doctor what your blood glucose numbers should be. Most pregnant women with diabetes should aim for these blood sugar levels as long as they do not cause low blood sugar:

Before meals (fasting blood glucose)
One hour after the start of a meal: 140 mg/dL or less Two hours after the start of a meal: 120 mg/dL or less

Insulin. If you were already using an insulin pump before pregnancy, you should keep using it. You probably should not start using an insulin pump for the first time during pregnancy. But if other types of insulin treatment do not control your blood sugar, your doctor may want you to switch to an insulin pump.

Medical nutrition therapy. You should see a dietitian for nutrition therapy. This healthy eating plan, tailored to you, helps make sure you get the nutrients you need and gain the right amount of weight while controlling your blood sugar. The dietitian may suggest you limit the number of carbohydrates, or “carbs” (for instance, potatoes, bread, and fruit), that you eat. It is a good idea to eat three small meals and two to four snacks a day. Your dietitian also will advise how often to eat and how many calories to eat a day.

Vitamins. Your doctor likely will decrease the dose of folic acid you take once you finish your first trimester of pregnancy (week 12). Most often, the recommended dose of folic acid is 0.4 mg (400 micrograms) to 1 mg per day through the rest of pregnancy and until you stop breastfeeding. Ask your doctor what other prenatal vitamins you need.

Will you be able to breastfeed?

Women with diabetes are encouraged to breastfeed their baby. Breastfeeding lowers your baby’s risk of childhood obesity and for type 2 diabetes later in life. Women with gestational diabetes have an increased risk of developing type 2 diabetes; breastfeeding seems to lower that risk. It also may help you lose the weight you gained during pregnancy!

Insulin is safe for breastfeeding women. If you take metformin or glyburide pills to treat type 2 diabetes, you can safely continue taking these medications while breastfeeding.

What can you do to help have a healthy baby?

You can help ensure your baby’s health and your own health. Work with your obstetrician and your diabetes specialist to get proper medical care before, during, and after pregnancy. Take your diabetes medicine as prescribed and keep your blood sugar in control. Follow the healthy eating plan that you made with your healthcare team. Also, be physically active. Ask your doctor what type of activity is best for you.

The good news is that with careful planning, proper medical care, and good self-care, you can have a safe pregnancy and a healthy baby. 

PCOS health complications

Besides fertility problems, complications include risk for developing insulin resistance and prediabetes/diabetes, abnormal cholesterol, and triglyceride levels, heart disease, stroke, endometrial cancer (cancer of the inner lining of the uterus), obesity, and sleep apnea. 

PCOS and fatigue

Fatigue is one of the leading symptoms reported among women with PCOS. Additional causes of fatigue may include an underactive thyroid, low vitamin B12 or vitamin D levels, and anemia (low blood count). Factors such as sleep problems and side effects of medications can also play a role. For example, metformin may play a role in lowering vitamin B12 levels.

If you haven’t been checked out for other contributing causes of fatigue, talk to your doctor about further evaluation. Conditions like hypothyroidism, low vitamin B12, and anemia are treatable. Your doctor or pharmacist can identify drug and supplement side-effects or interactions that may be causing fatigue and recommend adjustments to your regimen. Also, too little sleep can affect energy, mood, and other symptoms such as pain. 

ORGANIZATIONS

Below, you will find multiple organizations that have helpful information about PCOS and PCOS related health issues.

myPCOSteam

myPCOSteam is the only social network dedicated to the millions of women diagnosed with PCOS. It’s where women can meet others who share their symptoms, treatment paths, age and location. Get perspective and validation from others who get it. You may feel alone, but you’re not alone. It’s free to join. Sign up today.

EXPERTSCAPE – YOUR TRUSTED RESOURCE FOR FINDING PCOS EXPERTS

After extensive research and evaluation, PCOSAA has selected Expertscape as its preferred resource for finding physicians and other medical expertise in PCOS. Expertscape uses the National Institute of Health’s PubMed database to identify those individuals and institutions that are conducting research, publishing papers, and conducting clinical trials around PCOS and thousands of other medical conditions. We particularly like that the site is completely objective and unbiased, current, covers the world, and is free and easy to use.

To visit the site, simply click here. You’ll be taken directly to the PCOS experts page, where you can then drill down on your specific geography or on individual experts or institutions. From there, you can easily learn more about specific publications and access contact information. And we encourage you to contact them at mail@expertscape.com if you have specific feedback on the site or simply want to share your experiences.

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