Have you recently been diagnosed with polycystic ovarian syndrome (PCOS), or queried yourself if that is what is leading to your missing period? If so, you’re not alone. 

Many women who actually have hypothalamic amenorrhea (HA) are misdiagnosed with PCOS, leading to confusion, frustration, and stress, and many women with PCOS are often given advice that leads to HA like to lose weight or cut carbs (which you usually don’t need to do)!

 

Why does a misdiagnosis happen?

 

The primary reason is that both conditions share a key symptom: irregular or absent menstrual cycles. However, there are crucial differences between hypothalamic amenorrhea and polycystic ovarian syndrome, and understanding these differences can help ensure you receive the right diagnosis and treatment. 

 

The management of both of these conditions can look quite different. There are also a lot of associated health consequences from not having a period due to HA e.g. reduced bone mineral density and increased cardiovascular risk, and a misdiagnosis could delay an individual restoring their period and put them at an increased risk of the health consequences associated. 

 

Let’s break it down and explore what makes HA and PCOS different.

 

What is PCOS and HA?

PCOS is an endocrine disorder that affects between 4%–20% of women of reproductive age. Its symptoms vary, but may include:

• Irregular or missing periods
• Acne
• Weight gain
• Hair loss
• Excess body and facial hair growth (hirsutism)

The diagnostic criteria for PCOS requires the presence of at least two of the following (after ruling out other endocrine disorders):

• Signs of androgen excess (high levels of male hormones), such as acne, facial hair, or male-pattern baldness
• Irregular or absent menstrual cycles
• Polycystic ovaries visible on an ultrasound

 

HA is when your period stops for three or more months after previously having a normal cycle. Unlike PCOS, HA is caused by some form of stress – whether physical, psychological, or a combination of both.

The hypothalamus (the brain’s control centre) is very sensitive to stress. When the body is stressed, it reduces its production of gonadotropin-releasing hormone (GnRH). This, in turn, prevents the pituitary gland from producing follicle-stimulating hormone (FSH) and luteinizing hormone (LH), which are essential for ovulation and menstrual cycles. HA is diagnosed through a process of exclusion, meaning other causes of irregular/missing periods (such as pregnancy or PCOS) must be ruled out first.

Key Differences Between HA and PCOS

Hormone Levels

	HA	PCOS
FSH and LH	Low	LH-to-FSH ratio is usually high or within the normal range
Androgens	Usually normal or low	High, leading to symptoms like acne and excess hair growth
Oestrogen	Low due to suppressed ovarian function	Normal or high

 

Polycystic Ovaries on Ultrasound

• One major reason for misdiagnosis is the presence of polycystic ovaries on an ultrasound. Many women with HA also have cysts on their ovaries because their follicles aren’t maturing due to hormonal imbalances. However, having cysts alone does not confirm PCOS.

Insulin Resistance

• Insulin resistance is often associated with PCOS, but it can also be present in HA. This makes it an unreliable factor in distinguishing between the two conditions.
• Insulin is a hormone that controls the amount of glucose we have in our blood, moving sugar from the blood into our cells for energy. Insulin resistance is when your body’s cells don’t respond to insulin as it should, and the body ends up producing more insulin to compensate. This ultimately leads to high levels of insulin in the body, which causes the ovaries to produce too much testosterone, which can prevent ovulation
• Remember how high androgen levels are one of the diagnostic criterias for PCOS? – Well the interlink between high insulin levels and excess androgen production is why insulin resistance is so commonly seen in women who have PCOS. 

 

Lifestyle Clues

Your lifestyle can provide significant clues about whether you are more likely to have HA than PCOS. 

You may have HA if you:

• Exercise daily, intensely, or for long durations with little to no rest days
• Feel anxious or upset when you miss a workout
• Are frequently dieting or watching what you eat
• Do not experience excess facial or body hair growth
• Have not had a period in over three months, and this is unusual for you

 

The Bottom Line

If you’ve been diagnosed with PCOS but resonate more with the signs of HA, it might be worth discussing this with your doctor. Misdiagnosis is common, and the correct diagnosis is crucial for getting the right treatment and support.

It is also possible to have both HA and PCOS at the same time! However, the management of these two conditions are different which often leaves women in a sense of confusion. Managing both conditions requires a two tiered process, whereby you must address your missing period from your hypothalamic amenorrhea and then look at how gentle nutrition and lifestyle approaches may support your PCOS symptoms. 

I often see women in my clinic who have PCOS and due to poor advice they’ve been given, they fall into behaviours like cutting carbs and exercising intensely, subsequently leading to developing HA. There is often a misconception that you must eat “super-clean” and do lots of intense exercise to manage PCOS symptoms, however this is not the case. Instead of going on a low-carbohydrate diet, you should think about consuming complex carbs like wholegrains and legumes. You could also swap out your intense exercise regime for more gentle forms of exercise such as walking, swimming or yoga. This type of exercise can still help with your insulin resistance without adding too much stress on your body (which we know is the main driver to HA development!). 

If you suspect HA, it might be worth considering adjusting your lifestyle, reducing stress, and fuelling your body properly. However, we know HA recovery is not just as easy as simply eating more and moving less. This is because the power to be able to recover your period for a lot of people usually lies within improving your relationship with food, your relationship with your body and your relationship with exercise.

If you feel like you need some support and guidance on your period recovery journey, you can get in touch with me through my email elle@eknutrition.com