From PCOS to PMOS

This past week, the medical community -- as told by The Lancet Journal -- made a big announcement about the condition formerly known as Polycystic Ovarian Syndrome, or PCOS. The condition has been renamed Polyendocrine Metabolic Ovarian Syndrome, or PMOS.

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.

In layperson's terms, what does that even mean? Firstly, it tells us that PMOS is far more common than people without it even realize. Those of us who live with its symptoms are known for just... not talking about it. We are used to symptoms, and to dismissal of those symptoms. But that doesn't mean they aren't there -- the hair loss, the mood swings, the constant cravings... the food noise. Yes, food noise can be a symptom of PMOS! Not to mention, insulin resistance... making weight loss difficult... leading to the disease of obesity. You see where this is going now?

According to the Cleveland Clinic, PMOS symptoms can include: irregular periods, abnormal hair growth, acne, obesity (!!!), darkening of the skin, cysts, skin tags, thinning hair, and infertility.

When PMOS was named PCOS, the "C" of PCOS implied the existence of ovarian cysts in every single case. However, not everyone who lives with PMOS is the owner of ovarian cysts -- and still lives with other symptoms!

Kerrin, one of my best friends from college, had the following to say in our group chat this week:

"It makes it sound like the cyst is what's causing a hormonal, endocrine nightmare, and not the nightmare causing possible cysts."

She hit the nail on the head! While I do have the cysts, I am missing one hallmark symptom of PMOS: irregular periods. As such, I've always felt that I had to validate my condition -- while still living a "hormonal, endocrine nightmare."

The question that begs asking is... why would I have to validate my condition when I have so many symptoms of PMOS? I have the weight gain and difficulty losing weight. The cravings. The hair on my face (I'm lucky, it's blond... but I've had it waxed before I know I'm going to be under stage lights). The absolutely insane shedding of hair. The skin tags (yes, I've had those removed too). The facial acne IN MY 30s that requires a 20-minute skincare routine to keep at bay, and the body acne which is treated by prescription soap. Don't even get me started on how much money I've spent on facial hair removal both by wax and by tools, on skincare -- prescription and non-prescription, and dermatologist visits to remove skin tags.

Additionally, I recently had to undergo testing for medullary thyroid cancer -- as one of the markers for it showed up in my labs. My doctor wanted to cover all bases since lab rats developed medullary thyroid cancer with long-term GLP-1 use. I was relieved to find out that I don't have cancer... BUT there are nodules on my thyroid. According to the NIH (which has not updated its website yet to show that PCOS is now PMOS), 29.9 percent of PMOS patients experience thyroid nodules.

So there you have it. And yet. I used to get, "Oh, you don't have PCOS, you get your period." And "You don't have a thyroid problem, your labs are fine in that department." Subtext: you're just fat. Apparently, if you're missing one symptom, you don't have the condition.

Well... surprise, because by adding the "M" to PMOS... the umbrella of symptoms just opened. "M" stands for... metabolic! As in... metabolism! Also known as... your system that controls weight loss or gain. The condition can effect metabolism! The name change, however, does not end with the "M." The "P" no longer is the prefix to "polycystic"-- it now stands for "polyendocrine!" As in... the endocrine system! The same system that controls... wait for it... hormones! And... your thyroid! The report from my recent testing literally has me tagged as a patient with an "unspecified endocrine disorder." Hi, hello, it's PMOS!

PMOS patients who don't have cysts are now valid, as well as a PMOS patient like me whose periods come every month like clockwork. And while my period shows up every month, I wouldn't wish my hormones on anyone. I suffer from premenstrual dysphoric disorder, or PMDD. I describe PMDD as PMS on steroids, and I use anti-anxiety medication to help manage its mental health-related symptoms. While I could not find anything on the internet stating that there is a link between PMOS and PMDD, I'd be willing to wager that the two are connected -- at least in my case.

But to get back to PMOS and obesity. Obesity is a symptom of PMOS. An entire separate disease is literally a symptom of a bigger condition. And to take that statement to the next level, there are all types of comorbidities that come with what used to be called "morbid obesity:" type 2 diabetes, joint pain, high cholesterol, and heart disease, to name a few. Now, not everyone who deals with the disease of obesity has PMOS; biological men with obesity, for one, don't have it. But if we ever needed further proof that obesity is not the fault of the patient, there's no better proof than knowing that obesity, and all of its collective comorbidities, can be symptomatic of a larger condition.

My hope is that the name change from PCOS to PMOS offered a positive affirmation for all of us PMOS girlies. I felt vindicated upon hearing that obesity was never my fault, and now, I feel vindicated once again.