Do you really have PCOS?
Did you know PCOS is can often be misdiagnosed?
Polycystic ovary syndrome (PCOS) is a reproductive hormone condition caused by elevated androgen levels, when all other causes of androgen excess have been ruled out. Its symptoms include irregular or absent periods, excess facial and body hair growth (hirsutism), acne, and hair loss.
A PCOS diagnosis can often be made without the exclusion of other possible causes, including reproductive health conditions that present with similar signs and symptoms.
An incorrect PCOS diagnosis can be very distressing for you as it can cause considerable, often unnecessary stress around present or future fertility and/or the risk of developing insulin resistance or Type 2 diabetes.
An incorrect PCOS diagnosis can also lead to inappropriate treatment of the actual underlying reproductive health condition that is causing your symptoms.
PCOS can also be temporary, with certain oral contraceptive pills triggering short-term elevated androgen levels and teenage girls often ‘outgrowing’ PCOS within the first 3 years of getting their period.
Did you know PCOS cannot be diagnosed or ruled out by ultrasound?
Even if your pelvic ultrasound showed polycystic ovaries, you may have been incorrectly diagnosed with PCOS.
In the term polycystic in PCOS, poly means many and cystic means ovarian follicles. Ovarian follicles contain your developing eggs that are getting ready to be released during ovulation.
When you ovulate in a menstrual cycle, one of the ovarian follicles becomes larger than the rest and then releases an egg.
If you don’t ovulate in a menstrual cycle, which is common in PCOS and also in other reproductive hormone conditions, your ovaries will contain many small undeveloped follicles, usually around 15 or more.
Multiple ovarian follicles only indicate that you did not ovulate that menstrual cycle, not that you will not ovulate next cycle. They also don’t explain why you did not ovulate.
In PCOS, the main reason why you do not ovulate regularly, resulting in absent or irregular periods, is excess androgen levels. An ultrasound cannot diagnose elevated androgen levels, only a blood test can.
Polycystic ovaries are common, also occurring in women with normal hormone levels up to 30% of the time. This is because the size and number of ovarian follicles can change from cycle to cycle, depending on whether you ovulated or not.
Therefore, it can be normal for you to have multiple ovarian follicles and not have PCOS. This is especially true if you are a teenager or young adult, since younger women have more ovarian follicles.
These normal follicles should also not be mistaken for abnormal ovarian cysts that often require medical treatment.
It is also possible to have non-polycystic ovaries and still have PCOS, particularly if you have other diagnostic signs and symptoms including irregular or absent periods and elevated androgen levels.
How do I know if I have a correct PCOS diagnosis?
PCOS should only be diagnosed if you have:
absent or irregular periods and/or polycystic ovaries
plus elevated androgens on a blood test and/or symptoms of androgen excess, that cannot be ruled out by other causes.
How do I correctly test for PCOS?
To correctly test for PCOS you should ask your naturopath or GP to test for:
androgen levels, including testosterone, androstenedione, and DHEA
luteinising hormone (LH) and follicle stimulating hormone (FSH) ratio
sex hormone binding globulin (SHBG)
fasting insulin levels
Elevated androgen levels, a high LH to FSH ratio, and low SHBG can all indicate PCOS.
Elevated fasting insulin levels can indicate that you have the most common form of PCOS, insulin-resistant PCOS.
Common conditions that can be misdiagnosed for PCOS:
PCOS can often be misdiagnosed for conditions that present with:
irregular or absent periods and/or polycystic ovaries
elevated androgen levels and/or symptoms of androgen excess.
A health condition that can present with polycystic ovaries and/or irregular or absent periods:
Hypothalamic amenorrhea (HA)
HA is frequently misdiagnosed as ‘lean PCOS’ as it often presents with polycystic ovaries.
Both conditions also have similar symptoms including:
irregular or absent periods
excess facial or body hair growth (hirsutism)
hair loss
acne.
Each condition has very different causes:
HA is caused by undereating, chronic stress, and illness
PCOS is caused by elevated androgens and often elevated insulin.
If your HA is mistakenly diagnosed as PCOS, you may be given inappropriate medical advice, such as reducing carbohydrate and sugar intake. This can worsen HA, a condition often caused by too little rather than too much food intake.
To distinguish whether you have PCOS or HA you need to test for follicle stimulating hormone (FSH) and luteinizing hormone (LH) on Day 2 of your menstrual cycle. LH to FSH ratio is high in PCOS and low in HA.
A health condition that can present with elevated androgen levels:
Hyperprolactinaemia
Hyperprolactinaemia, a reproductive hormone condition where you produce too much of the hormone prolactin, also causes elevated androgen levels.
It can frequently be misdiagnosed as PCOS as it has other similar symptoms including:
irregular or absent periods
acne
hirsutism.
However, it can also present with additional symptoms not always found in PCOS, including:
premenstrual mood symptoms (PMS)
breast tenderness
headaches
low sex drive
vaginal dryness.
To diagnose or rule out hyperprolactinaemia you need to test your prolactin levels. A normal prolactin level in a woman who is not breastfeeding is less than 500 mIU/L.
Prolactin levels in the blood can be affected many factors, including stress and exercise.
To get the most accurate prolactin reading, do your blood draw:
whilst fasting and well hydrated
from Day 1-7 of your menstrual cycle
between 8am and 12pm
not directly after exercise
after sitting down for 15-30 minutes.
PCOS can also be temporary:
Post-Pill PCOS
Post-pill PCOS is caused by androgen suppressing progestins in oral contraceptive pills (OCPs) such as drospirenone (Yasmin or Yaz) or cyproterone (Brenda or Diane).
These progestins can cause a temporary surge in androgens after you stop taking them which can lead to symptoms such as irregular or absent periods, acne, weight gain, and hair loss.
Post-pill PCOS symptoms usually reach their peak 3–6 months after stopping the OCP but they usually resolve over time as androgen levels gradually normalise. Naturopathy can help to speed up this process by prescribing androgen lowering herbal and nutritional medicine and dietary and lifestyle advice.
OCPs can also increase insulin resistance which can contribute to the most common type of PCOS, insulin-resistant PCOS.
OCPs can also disrupt the hypothalamus-pituitary-ovarian (HPO) axis, making it more difficult to resume ovulating once you stop them.
You may have post-pill PCOS if:
you have excess androgen levels on a blood test
you had regular periods before starting your OCP
your symptoms, including irregular or absent periods, started 3-6 months after stopping the OCP
Puberty
Polycystic ovaries, elevated androgen levels, and irregular cycles are considered normal during the first few years of menstruation. It can take up to 3 years for the hypothalamus-pituitary-ovarian (HPO) axis to normalise so PCOS should not be diagnosed in this time.
In conclusion, to ensure you have a correct PCOS diagnosis you need to:
not rely on the presence of polycystic ovaries on an ultrasound alone, you need to also have excess androgen levels and/or symptoms of androgen excess, after all other causes have been ruled out
complete all of the above-mentioned testing for PCOS
rule out other reproductive health conditions such as HA and hyperprolactinaemia
consider if you may have temporary post-pill PCOS
ask your GP to defer a PCOS diagnosis if you are still within 3 years of the onset of menstruation, as you may outgrow it as your HPO axis regulates.
Want to find out how I can help you correctly diagnose PCOS and treat it with naturopathy?
As a hormone naturopath, I can develop a personalised treatment plan to both diagnose and treat your PCOS to regulate your cycle, clear your skin, improve your fertility, and shift weight. Take a look at my PCOS service page for more info…