It's September, which means it's PCOS Awareness Month - so let's get aware, shall we? Here's 5 things you should know about PCOS, right off the bat (and here's a good overview article on PCOS if you're looking to brush up on the basics!).
1 | The name "PCOS" is misleading
PCOS, or Polycystic Ovary Syndrome, is poorly named - not only does it affect more areas of health than your ovaries, but it also doesn't even require ovarian cysts for diagnosis. PCOS gets diagnosed using something called the Rotterdam Criteria, meaning you have to have at least two of the following:
Oligo- or anovulation | I.e., you either don't ovulate, or you go a long time between each ovulation. A cycle length (from Day 1 of your period to the day before your next period) of 21-35 days is considered "normal", and if you consistently have cycles shorter than 21 days or longer than 35 days, your provider may look into this.
Hyperandrogenism | Or rather, high androgens (male sex hormones, like testosterone). Clinical (visible) signs of hyperandrogenism may look like facial or body hair, or acne. To check for this, your provider may order a blood test to check testosterone levels.
Ovarian cysts | These are confirmed via ultrasound, and the provider reading your ultrasound is looking at things like how many cysts you may have - because...
2 | Having ovarian cysts and PCOS are different
Ovarian cysts are actually pretty common and can be a normal part of a cycle. A cyst is essentially a fluid-filled sac, and during your follicular phase, which is the first half of your cycle during which your body selects 15-20 eggs, matures them into follicles (a fluid-filled sac, or functional cyst), and then releases the egg from the biggest/most promising follicle - aka, ovulates.
PCOS may come with ovarian cysts, but is overall a metabolic & hormonal condition, and affects more than just your ovaries. It can manifest in several ways - through hair & skin changes (see above), insulin resistance, and changes in your blood lipids (fats).
3 | PCOS doesn't have a "look"
PCOS may be stereotyped as only existing in women in larger bodies - and that's weight stigma. I'll spare you the language used around weight in articles, but they've found that maybe half of women with PCOS live in a larger body, meaning that women with PCOS live in a large range of body sizes - you know, like normal humans.
Not all women have signs of hyperandrogenism (like acne and facial/body hair growth or hair thinning on the head), and it's not required for diagnosis. So while checking for those signs may be part of the exam, you cannot diagnose based on appearance alone. There's no "look" to PCOS, and to make assumptions based on physical appearance is to compromise patient care.
4 | Getting diagnosed can be really frustrating
Over one third of women diagnosed with PCOS wait >2 years for a diagnosis. They also usually see ≥3 health professionals to get diagnosed, and are generally unsatisfied with the amount of information they receive. To quote Julie Duffy Dillon, "PCOS is not a pamphlet disease."
PCOS is not a pamphlet disease. -Julie Duffy Dillon
If you're struggling with a new PCOS diagnosis, in the process of learning about your body, or have been living with PCOS for some time now (or none or all of the above - we're all friends here): please know that there is healing for you, and I see you.
5 | Dieting shouldn't be part of your treatment
Dieting is often touted as the "cure-all" for PCOS while glossing over the damage it causes, such as a disordered relationship with food, weight cycling, and inflammation. So while it may seem like there's an initial improvement in symptoms, we know the vast majority of dieters regain the weight - and PCOS changes how your body's metabolism runs, making diets even more harmful.
That being said, there's still ways to support your body with PCOS (or without!) with food - and we'll cover that in another post this month!
6 | PCOS is not your fault
You didn't do anything to cause your PCOS. While scientists are unsure about what exactly does cause PCOS, the one thing that's clear is that it's likely caused by a variety of factors, including genetics and environment. PCOS is not your fault, and there is hope and healing for all bodies.
If you've been diagnosed with PCOS and feel comfortable sharing - what was the process of getting diagnosed like for you? Do you feel your provider gave you enough information, or sent you to someone who did?