Getting pregnant was never the problem for Jennifer Smith. Every time she and her partner tried to conceive, they were successful.
It was everything that came after that was hard — years of recurrent miscarriages without any explanation as to why. Smith, a library media specialist, says the time before she found answers was filled with “very difficult years full of a lot of anger and heartbreak.”
She would eventually be diagnosed with Polycystic Ovary Syndrome (PCOS), a condition that caused her to release a lot of poor-quality eggs every month. It was the reason why she was able to so easily get pregnant, and why those pregnancies never seemed to last.
There is no cure for PCOS, which is believed to affect at least one in ten women with symptoms ranging from infertility to irregular periods, acne, and weight issues, but there is hope. Two months after being diagnosed and beginning treatment, Smith got pregnant again. Today, she is the happy mom to a four-year-old son.
Understanding Polycystic Ovarian Syndrome (PCOS)
PCOS is about more than just infertility. While a lot remains unknown about its causes, reproductive endocrinologist Dr. Aimee D. Eyvazzadeh, describes the disorder as a metabolic condition that is likely genetic in nature.
While more research is required to develop a fuller understanding of why PCOS occurs, most believe the answer is likely a combination of genetics and environmental factors that lead to a hormonal imbalance between androgens (the “male hormones” like testosterone) and estrogen. Women with the syndrome have heightened levels of androgens that are typically to blame for many of the PCOS symptoms.
According to the CDC, PCOS affects somewhere between 6% and 12% of women in the U.S, and that rate appears to be on the rise. Determining a more exact number is difficult as there are few tests for identifying PCOS, and even fewer PCOS experts to treat patients. Diagnosis is further complicated by the fact that research now suggests there may be a polycystic ovarian spectrum, where women can have some of the identifying features of PCOS, including a degree of hormonal imbalance, but not meet all aspects of the clinical definition.
A recent study found it can take an average of two years and visits to multiple doctors for women to get a definitive diagnosis. “Sadly, I've seen patients in their late 30s not get a diagnosis until they see me,” Dr. Eyvazzadeh says. “They have reported their symptoms to doctors since their teenage years, but no one made the proper diagnosis.”
This was the case for Smith, who now believes she likely suffered from PCOS for years prior to her diagnosis at the age of 29.
Recognizing the Symptoms of PCOS
The symptoms of PCOS vary widely from woman-to-woman, as the experiences of the many celebrities who have opened up about their own diagnoses show: Victoria Beckham dealt with unpredictable periods and infertility; Daisy Ridley has been outspoken about her severe acne resulting from PCOS; and Lea Michele says she experienced weight fluctuations and skin problems.
To be diagnosed with PCOS, you must have at least two of these three signs: high levels of testosterone (also known as hyperandrogenism), erratic, infrequent, or absent periods, and cysts on your ovaries. Experiencing any of these can result in developing some of the symptoms of PCOS:
Irregular periods: One of the most common signs of PCOS is an erratic menstrual cycle due to disrupted hormones, which can prevent ovulation. While this is the main symptom, not all women, including Smith, experience missed periods or other easy-to-recognize symptoms.
Acne and Hirsutism: PCOS causes high levels of androgens, which can result in acne and unwanted hair growth that generally appears as coarse, dark hair in unexpected areas, like on the face or stomach.
High levels of insulin: Many women with PCOS have trouble processing insulin, which causes their bodies to overproduce it in an effort to maintain blood sugar balance. Signs of high insulin levels can include extreme thirst or hunger, increased urination, a waist over 35 inches, skin tags, and patches of dark skin. Exercise and diet changes can help ease this symptom.
Weight Issues: As many as 80% of women with PCOS also struggle with weight issues. Smith says her weight is another symptom that went unnoticed for a long time. “Dropping weight is very hard, even with sticking to a diet and having no cheat days,” Smith explains. “It still takes days to even drop a pound.”
Infertility: Smith is also one of a large percentage of women who experienced infertility as a result of PCOS. In fact, research has found that infertility rates are 15 times higher among women with PCOS compared to those who don’t have the condition, and The Office on Women’s Health (OWH) lists PCOS as the most common cause of infertility in women.
Depression and anxiety: Some women with PCOS also notice symptoms of depression and anxiety. According to Dr. Eyvazzadeh, PCOS can also affect brain chemistry since research has shown that increased levels of testosterone directly impact the areas of the brain that regulate emotion.
Steps to Overcome the Impact of PCOS
“I struggled for a long time thinking I was somehow defective,” Smith says. “I was ‘punch a hole in the wall of my house’ angry. We’re told from such a young age that girls just grow up and get married and have babies. It seemed everyone I knew was having babies with no effort. I thought I had done everything right, and yet…my life had gone so wrong.”
While there is no quick fix for PCOS, treatment that focuses on managing symptoms and keeping hormones balanced can dramatically improve quality of life for women who have been diagnosed.
“If you have PCOS, consider it a condition of HOPE,” Dr. Eyvazzadeh says, using her preferred acronym for the disorder (H=high androgens, O=lots of eggs in the ovaries, P=irregular periods, E=eating and exercise habits). “Surround yourself with a PCOS team that will provide long term care for you and monitor your levels and symptoms over time.”
Finding a doctor who specializes in PCOS can sometimes be difficult, but your OBGYN is often a good place to start. From there, depending on the severity of your symptoms, you may want to seek out an endocrinologist as well.
Working with a medical team to ensure you are on the right medication is important, but so are lifestyle changes, which are often the first line of treatment. Dr. Eyvazzadeh says that it is important to take a “multi-disciplinary approach” when it comes to treating PCOS.
This multi-disciplinary approach includes lifestyle changes that will hopefully aid in weight loss, which research has found can help improve the symptoms of PCOS. When it comes to your diet, experts suggest reducing sugar and refined carbohydrates (think pasta, white bread, and processed foods). Replace these with meals that are filled with lean meats, fish, and high-fiber grains and vegetables. It is also recommended that you limit your alcohol consumption and cut out smoking altogether.
Moderate exercise for at least 30 minutes a day is also advised, as it can help with your management of several of the symptoms of PCOS, like weight gain and insulin resistance.
You don’t have to embrace all of these changes at once. Doing so could be overwhelming and hard to stick to. But by choosing one lifestyle change to focus on a month, you can slowly work your way toward a healthier way of living—and better management of PCOS.
For Smith, treatment really was a game-changer. Today, the proud mom also has a different perspective on her condition.
“Just because we’re wired a little differently doesn’t make us broken or defective,” she says. “Everyone is different. Every body is different. Find a doctor who will listen to you and be on your team. I know how lucky I was to have amazing doctors on my side who cared and researched on my behalf for so many years.”