The Ugly Truth About Diagnosing PCOS

1 in 10 women are diagnosed with PCOS yet it takes an average of 2 years and 3 or more office visits with a medical provider to make the diagnosis. As a healthcare provider, I am so passionate about talking about the delay that exists in diagnosing PCOS because these gaps in early diagnosis, education, and support are opportunities for use to improve care. We need to do better than telling you “lose weight and implement lifestyle changes” then send you on your way. PCOS is the most common endocrine disease in women. Did you catch that? Endocrine not reproductive.

Not Every Woman is the same

 We know that symptoms vary greatly from one woman to the next thus some patients may have a few symptoms while others have them all.

How is the diagnosis made?

Making the diagnosis of PCOS is a judgment call on the part of a doctor, and studies show that many healthcare professionals misunderstand this disease. This leads to symptoms being missed that would indicate a diagnosis should be made. So if you are a healthcare professional listening today please reach out to me and let’s chat more about this!

I want to acknowledge the frustration that patients with PCOS experience in addition to confusion. The mental health aspect this disease carries is overlooked. There are studies that indicate patients feel frustrated, lack receiving a proper education upon being diagnosed, and feel dismissed by healthcare practitioners.

The study went on to demonstrate many of you noted that you were eventually diagnosed due to your own research and suspicion versus the healthcare provider coming forward with the diagnosis. This study broke my heart. I want to empower you today that moving forward you will continue to speak out if you feel symptoms are being missed. It is ok to seek second opinions.

PCOS Diagnostic Testing

There is no single test that says “ You have PCOS” which makes putting the pieces of your puzzle together challenging for some providers. Always consult your healthcare provider about proper testing but here are some that I encourage you to ask for. Initial lab testing should include free and total testosterone, dheas. 17-hydroxyprogesterone, prolactin, TSH, fasting glucose, and lipids. Some will further indicate the need for an ultrasound however we know this depends on several factors including which criteria your provider follows.

Refer back to last week’s blog for diagnostic criteria!

What DO Medical Text Books Say?

I open my medical books from when I was in school and this is what they stated about diagnosing PCOS. It is noted that the purpose of doing lab draws is primarily to exclude serious disorders. For example measurements of prolactin and TSH excludes hyperprolactinemia with or without thyroid dysfunction. In patients without clear signs of hyperandrogenism, drawing levels of total and free testosterone and dheas may be helpful however the best predictor of androgen symptoms is clinical presentation.

As I move on to my second textbook it notes a diagnosis of PCOS is made with evidence of clinical symptoms or biochemical (lab draws) presence of ovarian dysfunction and excluding other conditions producing hyperandrogenism and ovarian dysfunction. The common thing is that we must look at clinical symptoms to make this diagnosis.

Long term complications of PCOS

As a healthcare provider, I feel it is vital to diagnose this disease as early as possible in order to implement the proper care because we know that those with PCOS are at risk for cardiovascular disease, type 2 diabetes, hypertension, obesity, sleep apnea, uterine cancer, and let’s not forget the psychosocial impact this disease carries.

Remember my inbox is open, send me a DM on social media, lets chat if you are feeling frustrated by your symptoms or if you have these symptoms but have yet to be diagnosed

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