A little known medical condition known by the four letters PCOS is a major cause of infertility and risk factor for diabetes, heart disease, and high blood pressure. If you watch the popular NBC television series “This is Us,” you may be familiar with main character Kate’s struggles with PCOS-related obesity and infertility. PCOS refers to polycystic ovary syndrome.

Jennifer Dundee, MD, is a gynecologist who specializes in reproductive endocrinology and infertility at the University of Vermont Medical Center. She talks to us about the signs, symptoms, and treatments for PCOS – and how she helps women with PCOS become pregnant.

What is PCOS?

Dundee: It’s the most common endocrine disorder that affects women in their reproductive years, so it’s a condition I see quite frequently in my clinic. The crux of the issue for PCOS is that women do not ovulate regularly, which impacts fertility.

PCOS is not the best name for the condition. It doesn’t mean that these women have ovaries filled with giant, painful cysts. It’s really “poly follicular” ovarian syndrome. A follicle in the ovary is the space where the eggs live and grow. A cyst is a more general medical term that just refers to a fluid filled space in the body. It can be something really small, which is the case for PCOS.

How do you diagnose PCOS?

Dundee: There’s no single blood test or imaging study that can make the diagnosis. It’s a clinical diagnosis, meaning that a woman must have two out of three criteria to get the diagnosis. It’s also a diagnosis of exclusion, meaning we have to rule out a list of other potential endocrine causes of the symptoms first.

The three criteria for diagnosis are 1) irregular or absent periods; 2)unwanted facial hair or other male-pattern hair that can grow on the chest, lower abdomen, or on the back, or severe acne, or lab evidence of elevated male hormones; 3) polycystic appearance of ovaries on ultrasound, which means an ovary that’s larger than average and is filled with small follicles.

What do you consider an irregular period?

Dundee: Anything that’s more frequent than every 21 days, or less frequent than every 35 days, is considered an irregular period. In the first couple of years after a girl gets her first period, it is common to have irregular periods, but any interval longer than three months is considered abnormal and should be evaluated by a doctor.

What are the other health risks of PCOS?

Dundee: Women with PCOS often have very irregular, infrequent periods, and if that goes on for too long, it can lead to an increased risk of endometrial cancer. This typically happens later in life, but we’re seeing it more and more frequently in younger women, even women in their 20s. It’s very important for women with irregular periods to talk to their doctor and find out what the cause is. Obesity is an additional risk factor for endometrial cancer.

There are many ways we can reduce this risk. For example, the progesterone IUD called Mirena can be placed inside the uterus of a women who isn’t trying to become pregnant. Although many women don’t have a period regularly with the IUD in place, in this instance it is safe because the IUD is keeping the uterine lining thin and preventing cancer from developing. The most common treatment that we use is a combined estrogen/progesterone birth control pill, which provides a regular cycle for these women, induces regular shedding of that lining, and prevents the cancerous cells from developing. The pill also decreases unwanted hair growth and acne.

How does PCOS affect a woman’s fertility?

Dundee: It’s a hormone imbalance, which causes the ovary to not release an egg every month as it normally would. PCOS is usually associated with abnormally high male hormones, which are made in part by the ovaries.

Women with PCOS also often have relative resistance to insulin, which is why they are at increased risk of developing type 2 diabetes. Higher insulin levels make the male hormone levels even higher as well, which causes a vicious cycle that further suppresses ovarian function and ovulation. All the eggs get stuck, like they are in suspended animation in the ovary. That’s why, when we look on ultrasound, we see the classic image of a polycystic ovary: an enlarged ovary with all the small follicles lined up around the edge of the ovary, just waiting. Whereas, in a normal cycling ovary, the follicles are at different sizes, because some have been recruited towards ovulation.

How do you treat infertility caused by PCOS?

Dundee: There are oral medications that can be taken to encourage the ovary to release one or more eggs. The first line treatment for PCOS ovulation induction is Letrozole, with Clomid as an alternative. These are pills taken once a day for five days, to jump-start the ovary and get it to start growing one of those follicles and release an egg. That can work up to 27% of the time each cycle attempted. That’s pretty similar to the general population’s chance of conceiving. Reproduction is not efficient. A lot of people are surprised to hear that even in healthy fertile couples, there’s only about a 25% chance each month of getting pregnant.

The difficult part about PCOS is that many women with this condition are resistant to these ovulation induction medicines. We often have to increase the dose to a higher and higher level to achieve ovulation for them. The risk of that is that these medications have a higher rate of multiple gestation pregnancy, which is not always just twins.

For women who don’t ovulate even after taking the maximum dose of these pills, they can use injectable hormones to stimulate the ovaries to release an egg. But this treatment has a much higher risk of multiple gestation pregnancies, twins, triplets, even higher multiples. We try very hard to avoid that, because our goal for each patient is one healthy baby at a time. Even a twin pregnancy is a higher risk pregnancy.

What are the health risks of a multiple gestation pregnancy?

Dundee: Women carrying a multiple gestation pregnancy have higher rates of gestational diabetes and blood pressure complications. They deliver earlier on average, and so those babies generally need to spend some time in the NICU. Most of them do fine, but it’s a more challenging start to life, both for the babies and the parents. It’s a lot more to handle two newborns at a time.

We reserve the injectable hormones for the most resistant cases, and we counsel patients pretty stringently before we start. We only give those medications in combination with ultrasound monitoring, so we can see how many follicles are developing, assuming that each follicle is going to potentially release an egg. If too many follicles grow, we cancel the treatment cycle.

What are other risks for women who are pregnant and have PCOS?

Dundee: We do see slightly increased rates of gestational diabetes in women with PCOS. Along those lines, women with PCOS before pregnancy are at increased risk of developing type 2 diabetes. It’s about a four times higher risk. We recommend routine screening for type 2 diabetes, every one to three years.

During pregnancy, we test to see how the body responds to a glucose load, the glucola drink. This lets us know if the body can adequately process dietary sugar, so the sugar is not just hanging out in the bloodstream, because that can cause problems for the baby’s growth.

If we find that a woman has glucose intolerance before pregnancy, we offer Metformin, a medication that can help the body process the sugars we eat a little better. There are actually slightly increased conception rates for women who have glucose intolerance and PCOS, if we combine Metformin and ovulation induction with Letrozole or Clomid.

Do you see PCOS a lot in your fertility patients?

Dundee: This is one of the most common conditions I treat in my practice. I see somebody almost every day that has PCOS.

I can think of several patients who recently delivered. Overcoming infertility is really a wonderful thing to share with people, something that can cause so much stress for the woman herself, and puts strain on a relationship. Luckily, it’s something we can treat with minimal intervention, most of the time. Many couples can use medication to be able to ovulate and still conceive at home. People tend to prefer less medical intervention, if possible. Sometimes, we have to take it all the way to the most involved fertility treatment, which is in vitro fertilization (IVF). This involves hormone injections for several weeks, with very close monitoring involving frequent ultrasounds and blood tests. Finally, the woman has a procedure under sedation where we remove some eggs from her ovaries, fertilize them in our lab to make embryos, and then transfer one embryo into the uterus hopefully resulting in a pregnancy. Up to 60% of IVF cycles for women with PCOS will lead to a successful birth.

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