September is PCOS Awareness Month: What You Need to Know

September 9, 2018 by Meredith 515 Comments

September is PCOS Awareness Month, and I’m encouraged by the increase in information and awareness being shared about this disorder. Whether you have PCOS, or whether you are a loved one supporting a woman with PCOS, thank you for taking the time to educate yourself today.

I was diagnosed with PCOS on a snowy March day in 2013. And in those five years, I’ve found myself under the covers in tears, curled up in physical, mental, and spiritual torment. I’ve been poked and prodded more times by doctors in these few years than most women will in an entire lifetime. I’ve listened to ignorant comments and accepted meaningless advice. I’ve felt the eyes of judgement. I’ve wanted to confine myself to my home. I’ve thrown away countless negative pregnancy tests. I’ve hated my body. I’ve bled, I’ve been sick, I’ve been polluted with undeniable fear and pain. That is my life with PCOS.

But PCOS is a personal, individual disorder as well. It is not a one-size-fits-all condition. Let’s dive in:

What is PCOS?

PCOS stands for Polycystic Ovary Syndrome (aka Stein-Leventhal Syndrome), and is one of the most common hormonal endocrine disorders that can affect a woman’s:

Menstrual cycle
Ability to have children
Hormones
Heart
Blood vessels
Appearance

How do you get diagnosed?

PCOS has been recognized and diagnosed for 75 years. There are many signs and symptoms that a woman may experience, but PCOS can’t be diagnosed with one test alone. Women with PCOS typically have:

High levels of androgens (Sometimes called male hormones, though all females make them)
Missed or irregular periods
Many small cysts (fluid-filled sacs) in their ovaries in a “string of pearls” pattern

Early diagnosis of PCOS is important as it has been linked to an increased risk for developing several medical risks.

How does PCOS affect a woman’s body and life?

Women with PCOS may suffer from:

Infertility (not able to get pregnant) because of not ovulating. PCOS is the most common cause of female infertility.
Infrequent, absent, and/or irregular menstrual periods
Hirsutism — increased hair growth on the face, chest, stomach, back, thumbs, or toes
Cysts on the ovaries
Acne, oily skin, or dandruff
Weight gain or obesity, usually with extra weight around the waist
Male-pattern baldness or thinning hair
Dark patches of skin on the neck, arms, breasts, or thighs
Skin tags
Pelvic pain
Anxiety or depression
Sleep apnea

What are the associated health risks?

Women with PCOS have greater chances of developing several serious health conditions, including life-threatening diseases:

More than 50% of women with PCOS will have diabetes or pre-diabetes (impaired glucose tolerance) before the age of 40.
The risk of heart attack is 4 to 7 times higher in women with PCOS than women of the same age without PCOS.
Women with PCOS are at greater risk of having high blood pressure.
Women with PCOS have high levels of LDL (bad) cholesterol and low levels of HDL (good) cholesterol.
Women with PCOS can develop sleep apnea. This is when breathing stops for short periods of time during sleep.
Women with PCOS are also at risk for endometrial cancer. Irregular menstrual periods and lack of ovulation cause women to produce the hormone estrogen, but not the hormone progesterone. Progesterone causes the endometrium (lining of the womb) to shed each month as a menstrual period. Without progesterone, the endometrium becomes thick, which can cause heavy or irregular bleeding. Over time, this can lead to endometrial hyperplasia (when the lining grows too much) and cancer.

PCOS by the numbers

5-10% of childbearing-age women are affected by PCOS, with less than 50% of women diagnosed.
70% of infertility issues in women are caused by PCOS.
40% of patients with diabetes and/or glucose intolerance between the ages of 20-50 have PCOS.
70% of women who have PCOS have not been properly diagnosed.
4 billion dollars are spent annually by the United States every year toward identifying and managing PCOS.
PCOS affects 1 in 15 women worldwide.
Ovaries of women with PCOS tend to be 1.5 to 3 times larger than the average woman.
Some studies found that if a mother has PCOS, there is a 50% chance that her daughter will have PCOS.

How does PCOS affect a woman while pregnant?

The good news is: pregnancy is possible for women with PCOS. However, pregnant women with PCOS appear to have higher rates of:

Miscarriage
Gestational diabetes
Pregnancy-induced high blood pressure (preeclampsia)
Premature delivery

Babies born to women with PCOS have a higher risk of spending time in a neonatal intensive care unit or dying before, during, or shortly after birth.

Myths and misconceptions about PCOS

Polycystic ovaries: Not every woman with PCOS has cystic ovaries. It’s not required to have them to be diagnosed.
Obesity: Nearly 1/2 of women with PCOS are of average weight or underweight.
Periods: You can still have a regular period with PCOS. The menstrual cycle is only one aspect of how our bodies are affected.
Reproductive system: PCOS is not a reproductive disorder; it is an endocrine disorder.

Is PCOS curable?

Unfortunately, there is currently no cure for PCOS. However, medical management and lifestyle modification are the best ways to treat the syndrome. Medical treatment should be based on symptoms and goals. Treatment can depend on whether a woman is considering pregnancy, is menopausal, or does not want to conceive. Some options include:

Medication
Birth control pills
Fertility treatments
Surgery
Lifestyle modification
Weight loss

Does PCOS mean you will never have children?

Absolutely not! PCOS doesn’t mean we are barren or incapable of having children. Women with PCOS actually have more egg follicles than the average woman! We just need a little extra help and have more hurdles to jump to get there.

PCOS is undoubtedly a battle, no matter how severe or mild one’s case is. All the blogs in the world can be helpful, but they are not substitutes for a medical evaluation! Please schedule an appointment with a trusted doctor to share your concerns about PCOS. Keep asking questions. Don’t settle for vague answers and quick solutions. Be proactive, be bold. Be your own advocate!

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
(2 Corinthians 4:16-18)

PS: Download my #positivelyunashamed image for PCOS Awareness Month — and share it on social media if you are positively unashamed that you have PCOS! (Tag #positivelyunashamed on Instagram so I can find you!)