If you haven’t heard, today PolyCystic Ovarian Syndrome has been renamed to Polyendocrine Metabolic Ovarian Syndrome. This change reflects that this is not a reproductive “problem” but a whole body disease.

a health policy paper has been published saying the name is officially updated to polyendocrine metabolic ovarian syndrome (PMOS)

polyendocrine= multiple endocrine factors

metabolic = affecting/affected by metabolism

ovarian = from the ovaries

essentially, instead of using the symptomatic term (many people with PMOS do not develop cysts) the new term widens the diagnostic area and makes it easier to diagnose, treat, and do research on people with PMOS (even atypical types, such as no cysts).

it may seem like a waste of time to change a name instead of focusing on research, but for a lot of medical professionals a name can be associated with a hard set collection of symptoms, so the name needs to change to acknowledge that the disorder is not well understood and has a broader, subtler, and often missed set of symptoms. for example ADD is considered an antiquated/unused term, and now comes under the ADHD umbrella. in healthcare names and terminology changes all the time, and this is a positive change. your local healthcare professional may not know about this unless theyre really up on the news though!

in case you want to read about the name change process that was published in the Lancet (one of the most impactful and well respected medical journals):

Women who suffer bad cramps are told cramps shouldn't affect school/work/etc, but no one ever investigates further because no one can possibly know if what someone experiences is just typical pain or something much worse.

Well after 15 years of stage 4 treatment-resistant endometriosis that came with pain as bad as, if not worse than, actual labor contractions every month, all the while being told I was 'typical' and 'just had bad cramps', I've finally been healed (another post for another time). I have had what everyone describes as the elusive 'normal period pain' for several months now, and I am begging you to look me in the eyes and listen because I need everyone who can hear this to hear this.

I have been on both sides of this. I have the hard-earned knowledge of what a period 'should' feel like.

If you have to put in any effort to hide your cramps, you need to get help.

Even during of the PEAK OF CRAMPING (i.e., as bad as your cramps possibly get), you should still be able to stand, speak, walk, eat, work, and sleep with no problems. These tasks should require very-little-to-no extra effort beyond what you would normally do when you aren't on your period. When you do these things, you should feel grumpy and a little bit icky and maybe a twinge of nerves and NOTHING MORE.

If you have to sit in the corner and hope no one approaches you because you can't speak or stand without showing pain, even slightly, you need to get help. If your pain is showing on your face, you need to get help. And most importantly, IF YOUR PAIN DOES NOT RESPOND TO 1-2 TYLENOL OR IBUPROFEN, YOU NEED TO GET HELP.

Your period cramps should make you grumpy. Your period cramps should make you feel a little icky and tired. Your period cramps should make you feel your insides existing/moving a bit and a twinge of nerves that makes you groan slightly then the "pain" should stop there, NOTHING MORE.

If your cramps put you on the floor but you make believe you're the captain of a ship who has just been stabbed and has to hide it to fight on, and you force yourself to power through the day, please understand: you are not okay, that does not make you okay. Just because you can power through the pain doesn't mean you aren't sick. If you have to force yourself through any basic task beyond the effort it takes you to do when you aren't on your period, and I am holding your face and looking you in the eye as I say this because I need you to hear me: You aren't normal. You don't 'just have bad cramps'. You are sick and you need to get help.

Now most people will tell you if your cramps are beyond a 3 out of 10 on the pain scale, you should see a doctor. While this is usually true, you have to consider chronic pain CAN AND WILL BREAK YOUR PAIN SCALE. Most people will only compare pain they currently feel to pain they may experience one day but probably never will. "Sure these cramps feel bad now, but if I had a leg amputated with no anesthesia, that would hurt WAY worse, so this pain can't be that bad-" No. Your pain is what it is, objectively, full stop. My cramps were at a 10 out of 10 every. Single. Time. And nobody told me claiming they were a 6-8 because I thought to myself 'what if I lose a limb one day?' was completely wrong. 10 pain is 10 pain. And if there's something that hurts worse than that, guess what. The thing you are experiencing right now is still a 10 out of 10 on the pain scale. Just because you experience it every month doesn't mean it's magically not as bad is it is. And if your pain is worse than a 3 out of 10, you need to get help.

Now when I say get help, I mean find the root cause of your pain. You can't just throw drugs and hormones at it without knowing what it causing your pain. Endometriosis, fibroids, pcos, cancer, adenomyosis, polyps, thyroid issues, there is always a cause. And if you leave it untreated, it will grow and get worse to the point where it resists treatment and the drugs and hormones you've been throwing at it for years don't work anymore. You have to find a doctor that will investigate. If your doctor tells you you 'just have bad cramps' get a new doctor. I know you've been told that but please hear me: no one ever just has bad cramps. A healthy human body doesn't spontaneously cause itself pain so bad you can't stand up; there is ALWAYS a cause.

I was sick for more than 15 years. My entire life was put on hold and now I'm in my late 20s trying desperately to play catch up for everything I missed. I want to pick up 12yo me, spin her around, and tell her she doesn't have to die before she finally stops hurting. I don't want anyone to suffer the same fate I did simply because everyone told them they were normal. A little twinge of pain here and there is normal, suffering is not. I promise you your pain is real, it is not normal, and dear heavenly day I am begging you you need to get help now.

Surely it isn't due to the fact every time people with PCOS try to get help for their symptoms they instead get recommended hair laser removal over it?? Or get told weight is the problem when PCOS is specifically making any weight loss much harder??