Have You Been Misdiagnosed with PCOS?
By Clare Goodwin
Last updated: September 3, 2020
This week alone, I’ve seen two clients who have been misdiagnosed with PCOS. Both had been unsuccessfully trying to get pregnant, so were referred to a gynecologist who took a scan of their ovaries and found multiple cysts. They were diagnosed with PCOS on the spot and left with a generic handout about PCOS and a pamphlet about IVF.
While there is no doubt that they have many cysts on their ovaries and therefore poly (many) cystic ovaries (PCO), they had been diagnosed with the syndrome (PCOS). PCOS should never be diagnosed without a hormone blood test and/or other symptoms of high androgens, such as acne or hirsutism.
You might think that there is little difference between PCO and PCOS. However, there can be a huge difference in the mechanisms behind a lack of ovulation. Understanding the mechanism informs the appropriate treatment which can determine whether you get pregnant or not.
What Does ‘Misdiagnosed With PCOS’ Mean?
When I say ‘misdiagnosed’, I want to be clear that I’m basing this off the Androgen Excess and PCOS Taskforce guidelines, which I believe to be the most accurate assessment criteria. The Taskforce recommended that their criteria update the currently accepted Rotterdam criteria, which is being used by most medical professionals today.
Medical professionals need to know about a huge variety of conditions. It’s no wonder that they don’t have the most up to date information on all of them. I don’t blame them at all, they have an incredibly difficult job and are most likely working ridiculous hours to get through their patient load.
In an ideal world, all medical professionals would be experts in PCOS, but this is never going to happen. We can’t change the system but we can take responsibility for our own health and educating ourselves about PCOS. This is why I spend so much of my time focusing on creating free evidence-based educational materials for you!
I’m going to show you why a ‘diagnosis’ of PCOS from an ultrasound alone could be wrong. I’ll also tell you which tests you should be asking for next.
How Can An Ultrasound Showing Polycystic Ovaries Be Wrong?
25% of ‘normal’ women have cysts on their ovaries. Cysts on the ovaries are very common in females and can be present without PCOS. If you have many cysts on each ovary then it’s termed ‘poly’ cysts.
Cysts on the ovaries just mean you haven’t ovulated. A cyst is a ‘fluid-filled sac’ – and they don’t cause PCOS. A cyst is like a little half-baked egg: in a normal menstrual cycle, your body would release Luteinizing Hormone (LH) which would trigger you to ovulate and an egg would be released. However, if your LH isn’t firing then the egg can’t be released. This results in the egg staying kind-of ‘stuck’ on the ovary.
You Don’t Have To Have Cysts To Have PCOS
The name ‘PCOS’ is actually a bit of a red herring. In fact, the Androgen Excess and PCOS Society and a panel of experts from the NHI have both proposed that it needs a name change:
“[The name PCOS] is a distraction, an impediment to progress,” the NIH panel reported. “It causes confusion and is a barrier to effective education and communication. It focuses on … polycystic ovarian morphology, which is neither necessary nor sufficient to diagnose the condition.”
The name that they proposed instead was ‘Metabolic Reproductive Syndrome’. This name is a much more accurate description of what’s actually going on in PCOS. According to the Androgen Excess society, PCOS should be diagnosed using these criteria:
– Hyperandrogenism: this means a higher than normal amount of androgens (including testosterone).
– Ovarian dysfunction: which can be cysts on the ovaries or just a failure to ovulate.
– Exclusion of related disorders: such as thyroid conditions.
Cysts On The Ovaries Do Not Cause PCOS
As I stated above, you don’t have to have cysts on the ovaries to have PCOS. Cysts do not cause PCOS. In fact, it’s not even the ovaries that cause PCOS – they are merely collateral damage in what is a whole body metabolic reproductive disorder.
Why is this important? Because it completely changes the treatment you need. The metabolic side of PCOS includes hormones involved in the metabolism of food, especially carbohydrates.
Insulin is the hormone that is released by our body when we eat carbs and our blood sugar rises. 70% of women with PCOS have insulin resistance. Insulin resistance affects your ability to process carbs and is a precursor to Type 2 Diabetes. This is why you’ll see recommendations for women with PCOS to reduce their carbohydrate intake.
However, excess carbohydrates have nothing to do with cysts or lack of ovulation. Restricting carbohydrate intake is rarely helpful for women without insulin resistance, and can actually be harmful.
Some recommendations also say that a 5% decrease in body weight can stimulate ovulation. Weight reduction is only relevant if you’re overweight, so reducing calories isn’t always helpful in reactivating ovulation.
Luteinizing Hormone (LH) is the hormone that triggers ovulation, so understandably, it’s pretty important. When we eat too few calories or carbohydrates, our hypothalamus detects this and activates the famine response. Our bodies are still wired for periods of feast and famine. In those times, the last thing you wanted to do was to bring a baby into the world of famine, so our body systems adapted to stop this from happening.
An interesting study found that moderately high cardio and reduced calorie and carbohydrate intake disrupted LH and stopped ovulation. So if you don’t have PCOS and are not ovulating for another reason, cutting calories and carbs may be making this worse.
What Should You Do If You’ve Been Diagnosed With PCOS From An Ultrasound Alone?
If you’ve been diagnosed with PCOS from an ultrasound alone, then you need to be asking for the rest of the tests. You may have PCOS, but there could be another reason why you are not ovulating.
Androgen Hormone Tests:
Testosterone is only one androgen. DHEAS and androstenedione should also be measured. You can have normal testosterone, but high DHEAS, and still have PCOS.
Make sure your insulin is working the way it should be by having insulin tests. If you do have PCOS then you have a 70% chance of also having insulin resistance. Untreated insulin resistance can lead to Type 2 Diabetes and other issues, so you want to be making sure you reverse this ASAP. Insulin should be tested by doing a fasting blood glucose and insulin test.