9 Things No One Tells You About PCOS, According To Experts

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Polycystic ovary syndrome (PCOS) is a hormonal disorder among women that you may be familiar with — whether you have it or you know someone who has it. But sometimes the facts on PCOS get confusing. For example, PCOS was recently a storyline in This Is Us. Although it’s great that it got coverage, many with PCOS felt it fed into harmful stereotypes regarding fertility and weight. Women are often told by doctors they have PCOS due to their weight. In actuality, the issue is actually about hormone levels and insulin.

Penn Medicine states that the correlation between weight and PCOS is about the body’s inability to use insulin properly, which can lead to weight gain. But PCOS affects women of all shapes and sizes. Oftentimes, lifestyle changes are recommended so that the way your body uses insulin can change, and, thus, this may better regulate your hormone levels.

PCOS is an endocrine disorder affecting women of reproductive age,” Dr. Kecia Gaither, MD, a double board-certified physician in OB/GYN and Maternal Fetal Medicine, tells Bustle. “The exact cause of PCOS is unknown; however, a genetic basis may be involved, as most women affected have close degree family members — like a sister, mother, or aunt — with the same disease.”

According to the Centers for Disease Control and Prevention (CDC), PCOS is one of the main causes of infertility among women, affecting six to 12 percent — up to five million — U.S. women of reproductive age. Although PCOS is common when a woman is of reproductive age, particularly in her 20s or 30s, it can also begin after your first period, at just 11 or 12 years old.

Usually, there are three main symptoms of PCOS: irregular periods, the absence of periods, or prolonged periods; more male hormones (androgens) — which can cause excess facial and body hair, acne, and thinner scalp hair or male-pattern baldness; and multiple ovarian cysts. The CDC states that if you have at least two of these three PCOS symptoms, doctors will see if PCOS is the cause. Complications can occur down the line, such as heart disease or type 2 diabetes, so it’s best to see a doctor if you are exhibiting any symptoms of PCOS.

However, even when going to a doctor and finding out you have PCOS, there are still things that nobody tells you about it. Below, experts weigh in.

1You Are Not Alone

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You may feel alone if you are diagnosed with PCOS, but the fact of the matter is, you’re not. “Often, women do not realize how common PCOS is,” Dr. Armando Hernandez-Rey, Miami fertility expert at Conceptions Florida, tells Bustle. “But it affects one out of 10 women of childbearing age.”

2PCOS Symptoms Vary From Person-To-Person

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Although there are some telltale signs of PCOS, different women may have different symptoms. “PCOS is very individual,” Hernandez-Rey says. “Not every woman with PCOS has unwanted hair and not everyone has irregular periods.”

3PCOS Is Rarely Proactively Addressed

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Crystal Clancy, MA, licensed marriage and family therapist and the owner of Iris Reproductive Mental Health Services, has PCOS and says it played a large role in her own infertility. “PCOS is rarely proactively addressed,” she tells Bustle. “It is much more common than people realize, but is usually not assessed until there is a problem — such as trying to conceive — and, often, the PCOS has then progressed to a stage where more treatments are needed.”

The solution? She says women need to self-advocate. “If you are having symptoms that are not normal — lack of menstrual cycles, hair growth, acne on the jawline, and/or weight gain without cause (especially around the midline) — and your provider insists that you continue to try to conceive without intervention for one year, seek the care of a reproductive endocrinologist,” Clancy says. “Don’t wait.”

4Women With PCOS Should Use Hormonal Birth Control When They Don't Want To Get Pregnant

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You may already know about the benefits of hormonal birth control — such as less painful periods — but it can also benefit you if you suffer from PCOS. “Irregular periods can be dangerous for women with PCOS,” Dr. Kara Ehlers, MD, a fellow of The American Congress of Obstetricians and Gynecologists, a reproductive endocrinologist and infertility specialist at Vios Fertility Institute, tells Bustle. She says this is because women with PCOS do not ovulate regularly — they do not produce progesterone regularly, but they still produce estrogen. While estrogen builds up the lining of the uterus, the body still needs progesterone to properly shed the lining.

“Even when women with PCOS have periods, they may not fully shed the lining of the uterus which, over time, can lead to pre-cancer or even cancerous changes in the lining of the uterus (endometrium),” Dr. Ehlers says. “It is REALLY important for all women with PCOS to use a hormonal birth control when not attempting pregnancy or to discuss with their doctor options for helping them ovulate if they do desire pregnancy.”

5Women With PCOS *Can* Still Become Pregnant

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Many women with PCOS say their doctors have told them that their chances of having children is slim-to-none. But, that doesn’t mean it can’t happen. “Many women with PCOS have difficulty getting pregnant, but it is a myth that they cannot get pregnant,” Dr. Ehlers says. “For most PCOS patients, the only reason they are not getting pregnant is because they are not releasing an egg (ovulating) each month, and there are several medications available to help PCOS patients ovulate.”

She adds that the majority of PCOS patients will be able to get pregnant with the use of oral medications alone. However, for those who are still unable to conceive, the medications are combined with intrauterine inseminations (IUI), or injectable medications are used with either inseminations or in vitro fertilization (IVF).

Dr. Hernandez-Rey agrees. “There is a silver lining if you have PCOS and are planning a family,” he says. “Women with PCOS tend to have a higher ovarian reserve, which means you may have a longer reproductive life and reach menopause later than the usual time.” He also says that if you were to undergo IVF treatment, you may have a larger number of eggs harvested.

6PCOS Can Affect Pregnancy

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You may have heard that PCOS can make it more difficult to become pregnant, but it can also affect pregnancy, Darian Carrow, consumer wellness investigator at ConsumerSafety.org, tells Bustle. “Women with PCOS have higher rates of miscarriage, preeclampsia, gestational diabetes, and may need a Cesarean section (C-section),” he says. “Furthermore, your baby has a high risk of spending more time in the neonatal intensive care unit.”

According to Dr. Gaither, antihypertensive medications and the drug Metformin can help reduce pregnancy-related risks.

Once conception occurs and your doctor knows your history of PCOS, some preventative steps can be taken.

7PCOS Does Not Disappear After Menopause

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While you may think — or hope — that PCOS goes away after menopause, that is not the case. “A common question women with PCOS ask is if it will go away after menopause,” Carrow says. “Unfortunately, it does not; but, some symptoms of polycystic ovary syndrome may improve for most women.”

8Even If You Are Not Having Children — Or Anymore Children — PCOS Can't Be Ignored

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Whether you are done having children or choose not to have any, it's important to take PCOS seriously. “It can lead to Type 2 diabetes, heart risk, and menstrual concerns,” Clancy says. “This is especially important if you are unable to use hormonal contraceptives (which is a first line of treatment for PCOS), or do not want to use them, as you have decided on permanent sterilization.” She also says this may mean you’ll see an endocrinologist and use a medication, make dietary changes, or try other approaches to manage your PCOS symptoms. “Unfortunately, there is no cure for PCOS,” she says.

9PCOS Is Associated With Other Conditions

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Many symptoms can be signs of various medical conditions, and the same goes for PCOS. Dr. Ehlers says it’s important for all associated conditions to be evaluated and possibly treated. “Women with PCOS are at risk for high blood pressure, diabetes or pre-diabetes, obstructive sleep apnea (not breathing all the time when asleep), high cholesterol, and thyroid problems,” she says.

As you can see, there are several things that no one may tell you about PCOS. Of course, it’s best to clarify any misinformation or questions with your doctor or OB/GYN. It’s also important to see your doctor regularly since sometimes PCOS is difficult to diagnose, Dr. Hernandez-Rey says.

“Often, your primary care doctor or gynecologist does not even suggest you may have it,” he says. “We have PCOS patients who don’t exhibit all of the classic symptoms and were never diagnosed properly.” So, getting regular check-ups and paying attention to any body or health changes are key, too. While PCOS is often a misunderstood disorder, that doesn’t mean you should give up on finding the right doctor and treatment. PCOS is manageable for many women, and it can be manageable for you, too.