How to Know If You Have PCOS or Hypothalamic Amenorrhea
It’s really, really common for women with hypothalamic amenorrhea to first receive the diagnosis of PCOS or polycystic ovarian syndrome.
Although it’s a common mix up, it honestly makes no sense – at least to me.
I see why people get it confused: both result in menstrual cycle irregularities! But the buck stops there.
Today we're discussing the difference between the two and how to approach recovery when you're unsure of your diagnosis.
Difference 1: periods or no periods
I’m going to keep this simple. If you have a period, it’s just really long, say 60+ days, that’s more indicative of PCOS.
If you have NO period, and it’s been missing for more than 3 months, this is hypothalamic amenorrhea.
Difference 2: elevated hormones and androgens or low hormones and no elevated andgrogens
If you’ve had lab testing and your hormone levels are coming back within high to normal ranges, that is more indicative of PCOS.
If the test results show low to normal ranges, that is more indicative of HA.
Difference 3: Follicles on the ovaries
This one is tough…but basically, when you have PCOS you’ll typically see what’s coined a “string of pearls” – a build up of cysts on your ovaries.
Here’s the thing…it’s not uncommon for HA’ers to have a few more than normal follicles hanging out on your ovaries too. But they really won’t display at the same level as PCOS. My feeling is that most doctors feel like it’s “close enough” and are happy to call it polycystic ovaries and leave it at that. I recommend prying your doctor a bit more and asking her to describe what she sees.
Difference 4: Your lifestyle factors – which lines up more for you?
One of the things that helps women finally self diagnose is quizzing themselves on the following to see which sounds more like them. I suggest you run through this list:
A few lifestyle signs that indicate you more likely have HA:
You exercise daily
When you exercise, it’s intense
When you don’t exercise, you feel anxious or get upset
You are usually dieting/watching what you eat
Your bodyweight is low (not 100% indicative of HA, just a good clue)
You have type A tendencies and strive for perfectionism
You don’t experience coarse excess hair growth on your body or face
You have not had a period in 3+ months and this doesn’t happen to you regularly.
A few lifestyle signs that indicate you more likely have PCOS:
You do not exercise out of compulsion
You don’t have type A or obsessive tendencies
Your bodyweight is not low (not 100% indicative of PCOS, just a good clue)
You do experience coarse excess hair growth on your body or face
You have had a period in the last 3 months and it’s common for you to get one every few months like that.
Remember that these are not exclusive symptoms and that you should look closely at your hormone markers in addition to these symptoms. I do not mean to gaslight anyone here, but the reality is when I dig into the root cause of missing periods, people who answered “yes” to the HA factors do not end up having PCOS.
Having both PCOS and HA
Having both diagnoses is a thing. This might look like having symptoms of coarse excess hair growth and a string of pearls on ultrasound but also having no period at all.
If you’re feeling like maybe you fit the bill for both, here’s what you should know…
You can’t really address your PCOS symptoms until you have an actual menstrual cycle to look at. At least in the way that I help women with their period recovery and optimization.
So, if you’re missing a period from your hypothalamic amenorrhea, we need to address that first so we can see the function and frequency of your PCOS affected cycle.
Once you’re cycling to some degree, we can start to make changes to your lifestyle to help get the PCOS under control.
How to start recovery when you don't know if you have one or the other, or both.
I know that the typical protocol for PCOS recovery is different to HA, which can be confusing.
PCOS usually comes with the recommendation to eat super clean, low calorie and exercise a lot.
HA, the total opposite.
This is often why people who do actually have PCOS also get HA…because they over did diet and exercise to control it!
I don’t particularly prescribe to either of those methods 100%.
Both diagnoses really can have a similar approach to recovery, addressing the HA with a nutrition and relaxation protocol will help with PCOS at the same time – it’s totally possible.
When we look at the symptoms of each individual, we’re able to come up with a protocol specific to YOU. We’re able to systematically knock each symptom out and progress you from zero period, to a period, to an optimized period in that order. It just may take more time than if you had only one of the diagnoses.
Want help? Enlist us!
We’ve worked with women to get their periods back and then get them on track with their PCOS at the same time, and we’d love to do that with you, too.
