polyendocrine metabolic ovarian syndrome, the new name for PCOS
Some exciting new for the gals who’ve been through the ringer with misdiagnosis, failed diagnosis, or delayed diagnosis surrounding what was previous called PCOS — In a recently published Lancet article, this syndrome got a new name, polyendocrine metabolic ovarian syndrome.
I’ll say that I’m not generally a big fan of diagnoses and titles — what I see is that women so often absorb this story they’re given as their identity, or as a “life sentence” versus utilizing the info as a stepping stone toward healing, which can then create a spiral of further struggle and delayed recovery.
On the other hand, diagnoses (when accurate) can be helpful in offering us insights into our story in order to gain better awareness of what’s happening in our body and then decide accordingly what our best way to respond is.
But… I see very much how this renaming could be useful for catapulting women into more comprehensive support, connect them with people who can offer them information they didn’t previously consider, and bring them closer to a deeper root of the cause — metabolic dysfunction.
Which for many women isn’t necessarily new news either, this has been known — but to see such a quick shift in diagnostic criteria is pretty exciting, and could offer better moves forward.
PCOS (polycystic ovarian syndrome) was generally characterized by these three symptoms:
Oligomenorrhea or anovulation — delayed ovulation with cycles longer than 35 days and/or fewer than nine periods per year
Hyperandrogenism — excess androgen production
Polycystic ovaries confirmed on ultrasound — 12+ follicles on each ovary and/or an increased ovarian volume
The name “PCOS” emphasizes dysregulation within the ovaries, but when you look at what women are actually experiencing, it’s clear to see that there is more to the story.
Did you know that many women diagnosed with PCOS never confirm that there are actually cysts present on their ovaries?
There is a plethora of symptoms associated with this syndrome that often didn’t fit within the “PCOS diagnoses criteria” such as weight gain/obesity, difficulty losing weight, insulin resistance, abnormal facial and body hair, hirsutism, thinning head hair, cystic acne, irregular cycles, many more — and in talking with women, this created a feeling of “assuming they have PCOS , just undiagnosed” or like they’re just not being taken seriously when they are experiencing some but not all of the symptoms and then being told, “You’re fine.”
Which then (from what I’ve seen) leaves women feeling unsure of what to do or where to even begin or who to talk to.
Spending years and years in pain, often debilitating pain, and not being taken seriously or acknowledged.
The ripple is so so so big.
“Women with PCOS have an increased risk of developing cardiovascular disease, high blood pressure, type 2 diabetes, and cancer (endometrial and ovarian cancer in particular). The concept of your menstrual cycle as a vital sign could not be more clear in the example of PCOS, because the menstrual cycle abnormalities you experience clearly indicate an underlying health issue. Put another way, the disruption that you see in your menstrual cycle is the result of the disease process that’s happening in the background (not the disease itself!). It’s your body’s inner alarm system going off.” — “The Fifth Vital Sign” Lisa Hendrickson-Jack
So if this has been a part of your story, I hope this sparks a flame of excitement for you — because this may be validation that what you’ve always known and felt was in fact true, in spite of care providers not taking you seriously. Shrugging you off instead of helping you investigate what really was/is going on.
“Polyendocrine metabolic ovarian syndrome (PMOS), previously named polycystic ovary syndrome (PCOS), affects one in eight women. However, the term PCOS is inaccurate, implying pathological ovarian cysts, obscuring diverse endocrine and metabolic features, and contributing to delayed diagnosis, fragmented care, and stigma, while curtailing research and policy framing.”
There’s of course so much more to say, and if you’d like to hear some more thoughts on this I’d definitely recommend Lisa’s recent talk on what this shift may mean — listen here. But for now will leave you with the reminder that our body’s do always tell the truth, even when we’re not sure how to interpret that truth or even begin to acknowledge it.
So be gentle on you, and don’t be afraid to advocate for yourself.