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Why PCOS Is So Difficult to Diagnose

How to advocate for yourself at the doctor's office, and even help alleviate symptoms on your own.

Why PCOS Is So Difficult to Diagnose

Struggling with PCOS can be an incredibly isolating experience. Symptoms may challenge your sense of confidence, and lack of research on the topics of hormone balance & ovarian function can feel frustrating. Sometimes, the most isolating part of the experience can be the quest of getting a PCOS diagnosis in the first place. A lot of women can find themselves being gaslit by medical professionals, who may offer a band-aid solution for their symptoms instead of spending time investigating the root cause.

While researching symptoms and finding similar stories might feel like a sense of clarity, your doctor may be apprehensive to make it official. But why is PCOS so difficult to diagnose? Let’s dive in. 

What is PCOS?

PCOS, or polycystic ovarian syndrome, is a hormonal condition causing ovarian cysts that affects approximately 1 in 10 people in their reproductive stages. It can present itself as irregular periods, hair loss, and difficulty regulating weight, amongst many more symptoms:

  • Acne or oily skin
  • Infertility 
  • Fatigue and low energy
  • Moodiness
  • Pelvic pain
  • Insomnia
  • Excess body hair, including the chest, stomach, and back
  • Skin tags
  • Extra weight in the belly/abdomen
  • Dark or thick skin patches on the back of the neck, in the armpits, and under the breasts

But while PCOS is the most common hormonal disorder among women, the data that exists is ultimately inaccurate, as it’s so difficult to diagnose. Because of this, many don’t even know they have it. 

The exact cause of PCOS is also not fully understood. Research shows it can stem from a combination of genetic, environmental, and lifestyle factors, and that insulin levels and insulin resistance play a significant role.

How To Diagnose PCOS

Diagnosing PCOS is a bit more complex than simply identifying PCOS symptoms. Because a lot of these symptoms overlap with other hormonal irregularities like hypothyroidism, endometriosis, or amenorrhea, it can be difficult to pin down. For example, while heavy menstrual bleeding could be an offshoot of PCOS, it could be caused by a range of conditions, including uterine fibroids, polyps, bleeding disorders, certain medications, or pelvic inflammatory disease.

PCOS Blood Tests & Hormone Panels

PCOS blood tests can be helpful when properly diagnosing the chronic syndrome. These tests look for high levels of androgens (like testosterone), cholesterol, and other hormones, including your blood glucose. It’s important to request an extensive hormone panel so that nothing is overlooked.

Pelvic Ultrasounds

PCOS is identified by the many small sacs of fluid that develop along the outer edge of the ovary, which makes an ultrasound a helpful tool in the search for a diagnosis. It can be used to measure the size of the ovaries and see if they have cysts, as well as to note the thickness of the uterus lining.

PCOS Self Care

Ultimately, you are your own confidant and if you have enough intuitive reasoning to believe you’re struggling with PCOS, even while a medical professional is overlooking it, there are many at-home remedies that have been shown to help alleviate PCOS symptoms. 

Inositols (types of sugars in the body) is considered to be a PCOS medication that can promote hormonal wellness. Possible benefits for those struggling with PCOS include curbing intense cravings, enhancing egg quality, and reducing cholesterol while improving insulin resistance, and easing inflammation. While there are nine forms of inositol, the two that have the biggest impact on PCOS are myo-inositol (MI) and D-chiro-inositol (DCI). Read about more supplements that support your ovarian & hormone health here

You can also ingest inositols naturally by eating foods such as cantaloupe, grapefruit, lima beans, brown rice, whole wheat, almonds, or walnuts. Beyond that, other PCOS treatments include:

  • A healthy diet
  • Regular physical activity
  • Birth control or progesterone pills
  • Diabetes medication

If Not PCOS, What Else Could It Be?

While PCOS is commonly misdiagnosed, it’s also possible that you’re struggling with some other sort of imbalance. This includes hyper or hypothyroidism, primary ovarian insufficiency (POI), or hypothalamic issues, amongst other disorders with overlapping symptoms.

All in all: don’t feel hopeless. Whether you reach a diagnosis or simply have the suspicion, living with PCOS can be manageable so long as certain lifestyle changes are implemented. Though the progress is slow, research continues to be done and technology continues to advance, nudging us towards a future where a diagnosis—and eventually, a cute—doesn’t feel like such an uphill battle.

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