Why Is there So Much Mystery Surrounding Polycystic Ovary Syndrome (PCOS)?

by | Sep 7, 2022

What Is Polycystic Ovary Syndrome (PCOS)?

Polycystic Ovary Syndrome (PCOS) is a common hormone disorder in women that is also the leading cause of female infertility. How common? It is estimated that PCOS affects 6% to 12% (as many as 5 million) of US women of reproductive age. But since it is a lifelong condition, the issues and impact continue far beyond the child-bearing years.

Why is this so important to the clinicians at New Hope Counseling and Wellness Center? Our owner, Amy, was diagnosed with PCOS when she struggled with infertility and she personally understands the importance of early intervention and appropriate treatment.

For a variety of reasons which we will discuss in this article, PCOS is one of the most mysteriously underdiagnosed and misunderstood diseases in the world, with less than 25% of women with PCOS actually being medically diagnosed.

And since September is recognized as PCOS awareness month, this is the perfect time to understand, recognize, and most importantly, demystify PCOS.

PCOS: Signs, Symptoms, and Conditions

One of the reasons that PCOS is such a mystery is because unless you have had trouble conceiving, you may never have even heard of PCOS – BUT you may actually be suffering from it. That is because most women will not know or understand that they even have a diagnosable condition unless it is related to their infertility. And if you are one of the millions of women who choose to remain childless – or simply wait to become a mother – this condition could likely go undetected.

PCOS is characterized by three common characteristics:

  1. Irregular or absent periods,
  2. Excess androgens (elevated testosterone and androstenedione levels), and
  3. Multiple cystic areas on the ovaries.

But that is not all. And here is why there is so much confusion and even mystery around this condition. There is a long list of disparate and disconnected symptoms that could be related to so many other conditions.

Patients with PCOS might also experience:

  • Infertility (as mentioned above)
  • Heavy periods and spotting between periods (when they do experience menses) 
  • Insomnia or poor sleep
  • Mood swings and/or changes
  • Pelvic pain
  • Weight gain
  • Fatigue, exhaustion, or low energy levels
  • Hirsutism or excess hair growth on the arms, face, back, chest, abdomen or hands and feet
  • But despite additional hair growth, there is actually hair loss or male pattern baldness on the head
  • Excessive acne

And to make matters worse, women who suffer from PCOS can develop complications and conditions that can include:

  • Infertility, miscarriage, or premature birth
  • Type 2 diabetes, prediabetes, or gestational diabetes
  • Pregnancy-induced high blood pressure
  • Liver inflammation caused by fat accumulation
  • Metabolic syndrome (high blood pressure, high blood sugar, and abnormal cholesterol)
  • Sleep apnea
  • Depression, anxiety, and eating disorders
  • Cancer of the uterine lining (endometrial cancer)
  • Obesity – can also worsen nearly all of the conditions listed above

It is this outrageously long list of symptoms and conditions that make this disease so hard to pinpoint, diagnose and understand; making it a complete mystery to millions of women who currently suffer from PCOS and remain undiagnosed.

Difficulties Recognizing and Diagnosing Polycystic Ovary Syndrome

Adding to the mystery, there is no test to definitively diagnose PCOS.

This is problematic when you consider that most women will not even seek out a diagnosis of their problem unless they are struggling to become pregnant. That is because most women (especially older women who are not concerned with fertility) will brush off symptoms as signs of aging, menopause, or just a natural byproduct of monthly periods.

We have been taught early and often to simply bear the brunt of our changing bodies and rise above, or simply ignore, the discomfort and pain.

When a woman does seek answers, their doctor will likely start asking questions about their medical history, menstrual cycles, and weight fluctuations. A physical exam will include visual signs of excess hair growth, insulin resistance, and acne. The doctor should also conduct a pelvic exam, run blood tests, and may even recommend an ultrasound to check the appearance of ovaries and uterine lining.

If your doctor determines that you suffer from PCOS, they should also test and/or check your blood pressure, glucose tolerance, and cholesterol and triglyceride levels. You should also be screened for depression and anxiety, as well as sleep apnea.

Polycystic Ovary Syndrome Causes and Treatment

Further heightening the mystery is the fact that the medical community just does not know why women get PCOS. It is thought that genetics somehow plays a role, but for now, at least, the causes are not fully understood.

The bad news is that PCOS cannot be cured, but at least the symptoms can be managed. So if you are one of the unlucky millions who have been diagnosed with PCOS, there are some things that can be done to help alleviate the symptoms.

Because of the wide array of symptoms, treatments and lifestyle changes recommended may vary. In all cases, please consult your doctor or OBGYN before making any changes.


Recommended Lifestyle Changes When You Have PCOS

To help decrease the effects of PCOS, you may want to try these lifestyle changes (but please speak to your doctor before making any lifestyle changes):

  • Maintain (or work on achieving) a healthy weight. Weight loss can help alleviate symptoms and complications. Ask your doctor about a weight-control program, and/or begin working with a Registered Dietitian. Both can help you reach your weight loss goals.
  • Limit simple carbohydrates to help lower your insulin levels. Again, ask your doctor or a registered dietitian about a moderate-carbohydrate diet if you have PCOS. They will help you select the best way to achieve this.
  • Be active and exercise. Increasing your daily activity and participating in a regular exercise program will help to curb your insulin resistance, and help you obtain a healthy weight, thereby possibly avoiding developing diabetes.

As with ALL of these suggestions – please consult your doctor first!


The Benefits of Weight Loss and PCOS

Did you know? Even a modest increase in activity and reduction in your weight can help with the following:

  • Alleviate PCOS symptoms and complications
  • Help stave off diabetes
  • Help with anxiety and depression
  • Increase endorphins and improve mood
  • Help improve sleep
  • Increase the effectiveness of medications
  • Help with infertility

Improving your weight and activity even a little can make a big difference!


Prescription Medication to Treat PCOS

PCOS is largely a hormonal issue, so many of the medications have to do with regulating or managing your hormones as well as regulating your period. As such, your doctor might recommend:

  • Birth control pills or a combination of birth control pills
  • A skin patch or vaginal ring that contains a combination of estrogen and progestin
  • Progestin-only therapy

To help you ovulate, or to help with infertility, your doctor might recommend:

  • Clomiphene
  • Letrozole (Femara)
  • Metformin (added to Clomiphene)
  • Gonadotropins

To reduce excessive facial hair growth, your doctor might recommend:

  • Birth control pills
  • Spironolactone (Aldactone) (Spironolactone can cause birth defects so it MUST NOT BE TAKEN if you’re able to become pregnant or planning to become pregnant.)
  • Eflornithine (Vaniqa)

And although these are not medications, it is perfectly safe (and a viable option) to use electrolysis or laser hair removal to permanently remove unwanted facial or body hair.

Getting Help For Polycystic Ovary Syndrome

It is possible to dispel the mystery behind PCOS. The first step to getting help with your PCOS is to get a diagnosis.

Reach out to a qualified and reputable OBGYN who will take the time to listen, learn, diagnose, and treat your PCOS. You can help your doctor throughout this process by keeping track of all of your symptoms by using a menstrual cycle tracker and writing down daily symptoms on paper.

In addition to seeing your doctor, go online for support groups and resources and know that help is available and you are not alone.

At New Hope Counseling & Wellness Center, our certified therapists, counselors, and specialized registered dietitian nutritionists offer a variety of counseling services, including nutrition counseling. We will give you hope!

Whether you or someone you love struggles with PCOS, an eating disorder, trauma or PTSD, anxiety, depression, chronic pain, body image disturbances, chronic dieting, or needs counseling or therapy, our experienced team of specialized therapists, counselors, dietitians, and nutrition coaches are here to help.

Recommended Resources for PCOS

Since research has shown that diet can play an important role in managing PCOS, this meal plan was designed for women with Polycystic Ovary Syndrome (PCOS).

Or for more valuable non-diet information, New Hope Counseling & Wellness Center recommends, The PCOS Workbook, which provides a comprehensive lifestyle approach to managing PCOS and creating sustainable everyday changes.

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