Hi, my name is Simone. I am an intern for Planned Parenthood Keystone, and I have PCOS. I am 25 years old, and I was diagnosed with PCOS in my later teen years. I have been on my eating disorder recovery journey for about six years now, and I began working with a dietician for support with my eating disorder recovery as well as my PCOS diagnosis about three years ago. 

Having PCOS can be hard. I know it has been for me. However, it can become easier with support and help – whatever that may look like for you. This has been true for me, too. 

I wanted to write this post because I know that getting a PCOS diagnosis can sometimes feel hard, confusing, or overwhelming – and that is largely because there is not nearly enough research or understanding of PCOS in both the research and medical fields. And for a condition that can affect 8 to 13% of people with ovaries – and with up to 70% of sufferers going undiagnosed – there is a disturbing lack of funding provided for PCOS research. Many doctors who treat PCOS do not understand enough about it or its treatment, and many will often just tell patients to lose weight as a form of treatment for it. But that is not safe, realistic, or helpful, because PCOS often makes it harder for patients to lose weight [1], and diets in general do not work (regardless of if a woman has PCOS or not) [6, 2, 14]. 

But despite all of this – there is still hope. There are lots of PCOS advocates working really hard for there to be more research and funding so that we can really improve our current knowledge, understanding, and treatment of PCOS. And there are many things that we can do to help ourselves on our PCOS journeys. Personally, some things that have helped me on my PCOS journey are: 

• Working with a dietician 

• Processing PCOS related things in therapy 

• Following PCOS accounts on Instagram 

• Reading blogs and articles about PCOS 

• Doing yoga, going on walks, and riding my stationary bike (although I would enjoy doing these things even if I did not have PCOS) 

• Advocating for myself. Whether that means finding a new endocrinologist because my first one (who diagnosed me with PCOS) was wildly unhelpful and judgmental, or doing my own research on medications and other ideas that are suggested to me by my medical team or other people in my life – it is important. It can look different for every PCOS patient, but it is worth it. 

If there is anything that you take away from this post, I want you to know that there are resources and support options out there for you. Your list of things that help you does not have to look like mine – just find what works for you.  

You can find me on Instagram @thatjedigirl and I have listed some of my favorite PCOS Instagram pages below, feel free to check them out (I am not affiliated with these pages, I just love their work and what they do).

Simone’s favorite PCOS Instagram pages:

@pcossupportgirl 

@thatpcoscoach 

@pcos.positivity 

@bodyhonornutrition 

@foodvoicerd 

@pcosbodyliberation 

@pcos.nutritionist 

More about PCOS

What is PCOS? 

PCOS is a complex hormonal, metabolic, and reproductive disorder [13]. It affects 8-13% of reproductive-aged people with ovaries, and up to 70% of those affected are undiagnosed [7]. 

What causes PCOS? 

The cause of PCOS is not yet known. However, PCOS may be related to many different factors working together. These factors include insulin resistance, increased levels of androgens (a type of hormone), and an irregular menstrual cycle [9]. There is also research that suggests that a family history of PCOS is a risk factor for PCOS, and that PCOS is considered to be a genetic condition [11].  

What are symptoms of PCOS? 

Common symptoms of PCOS include: 

• Irregular menstrual periods: This can include absent periods, periods that occur infrequently or too frequently, heavy periods, or unpredictable periods [9]. Some people with PCOS get fewer than eight periods a year or none at all [12]. 

• Infertility: PCOS is one of the most common causes of female infertility [9]. 

• Hirsutism: Excess hair growth on the face, chest, abdomen, or upper thighs. This condition affects more than 7 in 10 people with PCOS [9]. 

• Acne: Severe acne or acne that occurs after adolescence and does not respond to usual treatments [9].  

• Oily skin: androgenic hormones can make the skin oilier than usual and cause breakouts on areas like the face, chest, and upper back [12]. 

• Weight gain: As many as 4 in 5 people with PCOS struggle with weight gain [9]. 

• Darkening of the skin: Dark patches of skin can form in body creases, like those on the neck, in the groin, and under the breasts [12]. These patches of thickened, velvety, darkened skin are called acanthosis nigricans [9]. 

• Headaches: Hormone changes can cause headaches in some PCOS patients [12]. 

• Loss of hair: Hair on the scalp can get thinner and may fall out [12]. 

• Ovarian cysts: Multiple small fluid-filled sacs in the ovaries [9]. 

How does PCOS affect the body? 

PCOS is a leading cause of infertility in people with ovaries [13]. However, PCOS can affect all areas of the body, not just the reproductive system. PCOS patients often struggle with insulin resistance, which increases the risk of type 2 diabetes and cardiovascular disease [9]. Sufferers of PCOS are the largest group of people with ovaries at risk for developing cardiovascular disease and type 2 diabetes. The National Institutes of Health (NIH) estimate that more than 50% of people with PCOS will become diabetic or prediabetic before the age of 40 [13].  

Metabolic syndrome is another condition associated with PCOS. This syndrome contributes to both diabetes and heart disease. Some PCOS patients can develop a condition called endometrial hyperplasia, where the lining of the uterus becomes too thick. This condition increases the risk of endometrial cancer.  

PCOS patients may also have a higher risk of sleep disorders, such as sleep apnea [9]. Some studies have shown that those who suffer from PCOS have three times higher the risk for endometrial cancer and may also be at higher risk for ovarian and breast cancer [13]. 

How does PCOS affect mental health? 

Mental illnesses including depression, anxiety, bipolar disorder, and binge eating disorder occur more frequently in people with PCOS [11]. Some studies have also shown that, due to symptoms of anxiety and depression, suicide attempts are up to seven times more common in people with PCOS than other people with ovaries [13].  

Research also suggests that children born to someone with PCOS may have a slight increased risk of developing attention deficit hyperactivity disorder (ADHD) and autism spectrum disorders (ASD) [5]. 

When can someone be diagnosed with PCOS? 

Anyone with ovaries can develop PCOS as pre-teens and teens. Having an earlier diagnosis can give them the opportunity to better manage the emotional, internal, and physical effects. This can also help them to prevent the development of more serious illnesses related to PCOS [13]. 

How is PCOS diagnosed? 

Doctors usually diagnose PCOS in people with ovaries who have at least two of these three symptoms: 

• High androgen levels 

• Irregular menstrual cycles 

• Cysts in the ovaries 

Doctors also ask patients if they have had symptoms like acne, face and body hair growth, and weight gain. Doctors may also have patients get a blood test to check for levels of androgenic hormones that are higher than normal, in addition to cholesterol, insulin, and triglyceride levels to evaluate the risk for related conditions like heart disease and diabetes. Doctors might also have patients get an ultrasound of their ovaries and uterus so they can look for ovarian cysts or other problems [12]. 

How is PCOS treated? 

While there is not an official treatment plan or medication dedicated to PCOS, a variety of treatments are available to address the problems of PCOS. Treatment is tailored to each person according to their symptoms, other health problems or concerns, and if they want to get pregnant.  

Combined hormonal birth control pills can be used for long-term treatment in people with PCOS who do not want to get pregnant. Combined hormonal pills contain both estrogen and progestin, and they regulate the menstrual cycle. They also can reduce hirsutism and acne and can lower the risk of endometrial cancer.  

Medications that help the body respond to insulin (which are used to treat diabetes) are often used in the treatment of PCOS. In people with PCOS, these medications can help to decrease androgen levels and improve ovulation. Restoring ovulation may help to make menstrual periods regular and more predictable [9]. 

Exercise can also be very helpful for people with PCOS. Research has shown that doing yoga [8], HIIT (high intensity interval training) [3], and resistance exercise training [10] can be especially helpful for symptoms of PCOS. However, people with PCOS do not have to do these types of exercise. It is just important for them to find exercise that they enjoy and do it. 

Can PCOS be cured? 

Currently, there is not a cure for PCOS. However, there are medications and lifestyle modifications that can help those with PCOS to control and reduce their symptoms [4].