How hard is it to get a PCOS diagnosis?

Getting diagnosed with polycystic ovary syndrome (PCOS) can be a challenging process for many women. PCOS is a complex hormonal and metabolic disorder that affects up to 10% of women of reproductive age. However, because symptoms can vary greatly between individuals, getting an accurate diagnosis can take time.

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What are the symptoms of PCOS?

Some of the most common PCOS symptoms include:

Irregular, infrequent, or prolonged menstrual periods

Excess hair growth on the face, chest, back, or other areas of the body (hirsutism)
Thinning hair or hair loss on the scalp (male pattern baldness)
Acne outbreaks

Difficulty getting pregnant (infertility)
Weight gain or difficulty losing weight
Darkening of skin, particularly along the neck, underarms, inner thighs and groin (acanthosis nigricans)

Skin tags on the neck or armpits

However, keep in mind that the symptoms and their severity can vary widely from person to person. Some women with PCOS may only experience mild symptoms while others can have more severe symptoms that disrupt their quality of life.

Why is getting a PCOS diagnosis difficult?

There are a few key reasons why getting an accurate PCOS diagnosis can be challenging:

No single test for PCOS – Currently there is no single lab test that can diagnose PCOS. Diagnosis requires a combination of medical history, physical exam, blood tests, and sometimes ultrasound imaging of the ovaries. The complexity makes diagnosis tricky.
Overlapping symptoms – Many symptoms of PCOS like irregular periods, acne, and weight gain can also occur in women who do not have PCOS. This can muddy the diagnostic waters.
Different criteria – There are several different sets of diagnostic criteria and guidelines that doctors may follow to diagnose PCOS. The lack of universal consensus can lead to confusion.

Mild symptoms – Women with milder PCOS symptoms may not realize anything is wrong and never seek medical evaluation.
Dismissive doctors – Some women report their symptoms are initially dismissed by physicians, delaying workup and diagnosis.

Diagnostic criteria for PCOS

While there are several different medical guidelines, the three main sets of diagnostic criteria for PCOS include:

National Institutes of Health (NIH): This 1990 criteria requires women have menstrual irregularity and clinical or biochemical signs of hyperandrogenism for a PCOS diagnosis. Ovarian cysts are not required.
Rotterdam criteria: Developed in 2003, this expanded criteria requires two of the following three features – menstrual irregularity, evidence of hormonal imbalance, and polycystic ovaries on ultrasound – for a PCOS diagnosis.
Androgen Excess Society (AES): The 2006 AES criteria requires clinical or biochemical signs of hyperandrogenism plus ovarian dysfunction such as irregular menses or polycystic ovaries.

While the Rotterdam guidelines are currently the most widely used, some physicians also factor in the NIH and AES criteria when evaluating patients.

Common PCOS lab tests and evaluations

As part of the diagnostic process for PCOS, physicians may order some or all of the following tests and evaluations:

Medical history – Details about menstrual cycle, gynecologic health, symptoms, medication use, and family history.

Physical exam – Assess height, weight, blood pressure, signs of excess hair growth, acne, or insulin resistance.
Pelvic exam – Check for any abnormalities in the reproductive organs.
Blood tests – Measure hormone levels like testosterone, FSH, LH, prolactin, and 17-hydroxyprogesterone to uncover any hormonal imbalances.

Metabolic panel – Evaluate blood glucose and insulin levels to screen for insulin resistance.
Lipid profile – Assess cholesterol and triglyceride levels which may be elevated in PCOS.
Ultrasound of ovaries – Used to count the number of follicles which can appear as cysts in women with PCOS.

Glucose tolerance test – Further assesses the body’s response to sugar intake.

Not every patient requires every test. Doctors will determine which evaluations are needed on an individual basis.

Steps to getting diagnosed with PCOS

The typical steps for getting a PCOS diagnosis may include:

Seeing your primary care doctor – Primary care physicians can make an initial evaluation, order basic lab tests, perform a pelvic exam, and refer to specialists if needed.
Seeing an endocrinologist – If hormone imbalance is suspected, an endocrinologist can order more detailed labs and oversee complex hormone testing.
Seeing an OB/GYN – Gynecologists can evaluate menstrual problems, perform ultrasounds, assess fertility, and conduct PCOS screening.

Tracking cycles and symptoms – Keeping detailed records of cycles, symptoms, and labs helps identify patterns suggestive of PCOS.
Reviewing test results – There is unlikely to be one single lab result that “confirms” PCOS. Doctors diagnose it based on the whole clinical picture.
Repeat testing – Because hormone levels fluctuate, repeat labs over several menstrual cycles may sometimes be needed.

Keep in mind that seeing a PCOS specialist who is familiar with the nuances of diagnosis can be extremely helpful. Having a physician that listens to all of your concerns is key.

PCOS diagnostic challenges

Some obstacles that can delay achieving an accurate PCOS diagnosis include:

Irregular cycles since menarche – Since PCOS often begins during adolescence, teens may assume infrequent periods are “normal” for them.

Lack of familiarity by doctors – Many physicians receive little training on PCOS and may fail to recognize its symptoms.
Focus on fertility – Doctors equate PCOS only with getting pregnant, dismissing women who aren’t TTC.
Emphasis on weight – Providers tell patients to lose weight to “fix” issues vs. considering PCOS-specific treatments.

Cost/availability of testing – Hormonal assays, glucose tolerance tests, and ultrasounds may not be affordable or accessible to all.
Time between tests – Diagnosis can stretch out over months between screening, repeat labs, referrals, etc.

Having a doctor who listens carefully, asks the right questions, and thoroughly explains next steps in the diagnostic process can help overcome some of these obstacles.

Tips for seeking a PCOS diagnosis

Some tips that may help speed up the process of getting a PCOS diagnosis include:

Keeping a detailed menstrual calendar to show your gynecologist
Writing down all PCOS-related symptoms experienced

Researching PCOS diagnostic criteria to understand what doctors look for
Asking for referral to an endocrinologist or PCOS specialist if your concerns are dismissed
Having hormone levels, glucose levels, and ultrasounds rechecked if initial results are normal but symptoms persist

Explaining all your symptoms and concerns clearly to your practitioners
Bringing someone along to appointments to help advocate for your health

While the path to a PCOS diagnosis may not be straightforward, being an engaged patient, tracking your health details, and finding an empathetic doctor can help overcome obstacles. With persistence and good communication, an accurate diagnosis is very possible.

When to seek a second opinion

If you suspect you have PCOS but initial doctor visits leave you feeling unheard or dismissed, seeking a second opinion may be wise. Some signs indicating it may be time for a second evaluation include:

Your concerns about PCOS are brushed off as unimportant
You are told normal lab results mean you couldn’t have PCOS, but symptoms continue

Your doctor focuses solely on fertility implications vs. broader health impact
You are told to “just lose weight” with no other treatment plan
Your symptoms are blamed on separate issues vs. being connected as possible PCOS

Feeling like your questions aren’t fully answered by your provider

Finding a physician who specializes in PCOS or women’s hormonal disorders could help provide a more thorough perspective. A fresh set of eyes may pick up on clues or nuances others missed. It may require self-advocacy and persistence, but getting satisfactory answers about your health is worth it.

When to follow up after a PCOS diagnosis

Once a PCOS diagnosis is received, follow up medical care is crucial for managing symptoms and long-term health risks. Recommended follow up care may include:

Repeat bloodwork – Test hormone and glucose levels every 1-2 years to monitor PCOS progression.
Annual pelvic exams – Screen for endometrial hyperplasia and uterine cancer risk.
Regular ultrasounds – Imaging ovaries and uterus every 2-3 years screens for major changes.

Check insulin resistance – Periodic glucose tolerance testing or HbA1c readings to catch diabetes risk factors.
Monitor for hypertension – Check blood pressure at each visit to stay atop cardiovascular concerns.
Yearly lipid panels – Cholesterol checks to keep tab on heart disease likelihood.

Bone density scans – DEXA scans for those at high risk of osteoporosis from PCOS.

Staying on top of recommended screening and labs allows complications to be caught early. Don’t just seek care when problems arise – get established with long term providers invested in your health.

Conclusion

Obtaining an accurate PCOS diagnosis can be difficult – but absolutely possible with the right medical team on your side. Committed advocates who thoroughly explore all diagnostic avenues can help overcome frustrating delays. While the complexity of PCOS makes diagnosis a challenge, the ultimate reward is getting proper treatment to manage this chronic but very manageable condition. With a combination of persistence, good record-keeping, and compassionate care, achieving a PCOS diagnosis – and subsequent symptom relief – is within reach.