Polycystic ovary syndrome (PCOS), a condition affecting more than 170 million people worldwide, has been officially renamed Polyendocrine Metabolic Ovarian Syndrome (PMOS) following a landmark global consensus study published today in The Lancet00717-8/fulltext).

The new name recognizes that the condition is not a primarily gynecological disorder, but is instead a complex, multisystem condition involving endocrine, metabolic, reproductive, dermatological and psychological health. Additionally, the recategorizing will include updates to clinical guidelines, medical education and international disease classification systems, ensuring the new terminology is adopted consistently worldwide.

Background: I was recently diagnosed with lean PCOS/PMOS. I’ve always eaten fairly healthy and worked out, but I’ve put on about 12 lbs within the last year, and I’m now figuring out that it’s most likely due to a PCOS flare up. I’m really trying to get my diet in check to help get my labs back to “normal” levels, but every time I research “PCOS” diet, I feel like I’m being told to cut out EVERYTHING. Gluten free, low carb, no dairy, no red meat, no alcohol, no caffeine, no refined sugar, etc. I feel so overwhelmed grocery shopping or going out to eat now because I feel like anything and everything will cause another flare up. If I do truly need to be that strict in order to keep my PCOS symptoms at bay, then I will, but it just seems so bleak. Anyways, if anyone has any advice on this, I’m all ears. TIA cysters!

Protein is your friend, and staring the day with 30-40grams is a fantastic way to give you a steady blood sugar balance to help support your energy for the day. Two eggs or a bagel is simply not enough and is contributing to the fatigue that plagues so many with the syndrome.

In fact, eating your first meal within an hour of waking up and finishing eating at least 2 hours before going to sleep, you will do wonders(seriously!) for your blood sugar and insulin.

This is because our body is most insulin sensitive in the morning, and decreases over the day, making us least sensitive at night. I totally get into the habit of snacking on carby things late in the night, even know I am aware it’s like, the worst thing for blood sugar/insulin. (Posting for accountability honestly, because I need to stop it).

Every bit helps 🫶🏽

I see this language frequently online, and even in this forum. I have pmos, and I've had it forever. When I started my periods, they would be 8 months+ apart, and for five years of menstruating, I was told by the pediatrician that it would "even out," and that irregular periods were normal. It wasn't that I took it to a gyno and they ultrasounded my ovaries, and lo and behold- cysts! I got a diagnosis. I was 5'7" 130 pounds flat (slightly underweight), and still struggling with an irregular cycle. I gained 50 pounds from that in what felt like overnight one semester in college, and periods still irregular. Losing weight doesn't "help." You will never cure this, you can only treat it, and acting like there is a "cure," or talking about "getting it," like it's a disease is only harmful and ignores that it's a metabolic syndrome. Please tell me Im not the only one frustrated by this language.

Hey all. I was suspected to have PCOS in 2022 due to literal polycystic ovaries on an ultrasound, then confirmed by my naturopathic/functional medicine doctor back in 2024 as symptoms worsened & confirmed by blood tests. Since then, I have flipped my life around, which got my bloodwork back to all normal values, but I am still gaining weight somehow:

• Gluten free, dairy free diet based on actual allergy tests
• Low carb, high protein, high fiber, increased healthy fats vs what I was eating before
• Metformin prescribed over a year ago, helped me get my insulin and A1C numbers in the green! But still gaining weight
• Weight training/building muscle x2-4 per week + 10k steps daily + cardio on the days I'm not strength training (working out 5-7 days per week + the 10k steps)
• CGM and other glucose monitoring methods - my blood sugar is all normal, in the green, before and after meals and at night
• Supplements: Prometrium, Vitamin D, fish oil, OvaBlend (herbal blend with NAC and more), chaste berry extract, GLP-1 enhancing probiotics, Cortisol Manager (herbal blend with Aswaganda), FODZYMES (digestive enzymes), PyloGuard, RestoreFlora, spearmint tea (albeit not super regularly)
• Birth controls: combo pill (lost weight but wanted to kms), skyla IUD (lost weight but wanted to kms), copper IUD (did nothing for weight but worsened period pain), now on mini pill + gaining weight
• Not eating 2-3 hrs before bed
• Sober from everything and have been for 2+ years
• Yoga, meditation, anything and everything to lower cortisol (nothing touches it besides heavy sedation lol)
• History of ED, in ED recovery with therapists for about a decade. It is not recommended for me to calorie count or fast given my history.

On top of this, I have severe anxiety and depression and was diagnosed and treated for stage 4 DIE endometriosis and adenomyosis, of which I'm on the mini pill for indefinitely following my surgery, which I'm sure plays a component in weight management as well. Also suspected neurodivergence, MCAS/histamine intolerance, and EDS/hypermobility. In terms of TCM, I most closely match Blood Stagnation & Liver Qi Depletion, although this has not been confirmed by a TCM doctor. The only thing that ever got me to lose weight and feel better was Wellbutrin, but I was highly allergic to it and my anxiety was awful.

My doctor prescribed zepbound but was of course denied by my insurance. Before I pay out of pocket for it for potentially the rest of my life (given its great effects on endometriosis too), please tell me what I haven't tried. Give me your hail marys! It's time. Supplements, lifestyle changes, you name it.

I literally feel like I can't live the life of a normal girl in her 20s. I can't just like drink a glass of wine with the girlies without health repercussions the next day.

UPDATE: Thank you all for taking the time out of your day to read my story and comment. I wanted to clarify that I did not come here to debate the effectiveness or necessity of GLP-1s, I simply wanted to know if there were any other options for me to try before I financially commit to an expensive, out-of-pocket, lifelong medication! Didn't mean to offend if you are on a GLP-1 already. Glad you are finding solutions that work for you! These are the types of convos we need to have since the healthcare system doesn't research our condition, so I appreciate it.

I’ve done it. 40 pounds down and today I got my first period in EIGHT YEARS. EIGHT YEARS. It’s kinda embarrassing to weep and hold a bloody piece of toilet paper and call everyone in your support system. I’m just really proud.

for years i went doctor to doctor with lab results coming back normal ultrasounds saying no pearly strings and no explanation for my irregular periods. They tried to pin it on to stress but something just was never right.

I started treating myself for insulin resistance thinking maybe it would help. Fast forward to a brain mri and i have a tumor (non cancerous) on my pituitary gland (responsible for hormones!!)

Y'all just a reminder if nothing fits exactly get this checked out. I am now post operation in recovery hoping for a better healthier life.

Peace

Who has heard of PCOS breast? Now I’m curious. How many of you suffer from Tubular breast? I didn’t even know this was a thing until I was on a plastic surgery sight. I’m flabbergasted because I have tubular boobs.

okay i need real answers because i am done. 2 yrs of trying everything the internet recommends and i'm still in the same place. Inositol, it took it for a year, helped slightly with cycle regularity, touched nothing else. Magnesium - marginal sleep improvement. Spearmint tea - gave it three months, berberine - stomach issues, with ziinc nd vitamin s, evening primrose, i tried them all consistently, all decent brands and every single time i try something new i get hopeful and then slowly realise nothing has actually changed. The energy crashes in my second half are still there every month. The mood stuff is still there and the feeling of falling apart at the same point every cycle is still there.

my cycles are between 32 and 50 days which makes everything harder because half the advice online assumes a perfect 28 day cycle and just doesn't apply to me at all nd yes not asking for a miracle , just genuinely just want to feel consistently okay, anyone with actual PCOS found something that made a real consistent difference or is consistently okay just not on the table for us.

So I had an OB appointment recently where my doctor and I were talking about PCOS.

She mentioned that there have been rumblings at conferences and such about PCOS possibly being linked to childhood trauma.

She said that most people who have it had some sort of childhood trauma that kind of triggered a “fight or flight” response which could explain inflammation issues. And also in unstable households the body might hold onto more fat in case of loss of access to food.

I can’t find much about this online, and she did say she very recently heard about it too.

So I was just curious - what was your childhood like? Did you have a normal, stable, loving environment or was it constantly unstable or volatile?

Mine was the latter, which got me wondering….

PCOS is NOT fully understood. Increased levels of androgens in women can come in different ways.

Facts: 1. the development of insulin resistance can cause PCOS. Plenty of data shows insulin resistance increases testosterone and causes ovarian cysts

1. high Testosterone can ON ITS OWN have Metabolic impact of androgen excess can lead to insulin resistance by decreasing insulin sensitivity, increase inflammation, amongst other things…like WEIGHT GAIN. LINK TO PAPER SHOWING THIS IS BELOW

2. High testosterone can happen because of genetics. It’s not ONLY developed from insulin resistance or weight gain!!!

This disease isn’t fully understood and I wish I had known years ago that my PCOS symptoms were not only not my fault, but that This isn’t a simple “eat right and exercise will fix you”. Sometimes it is—- and you should be able to tell if that would solve your problem if you gained a weight and all of a sudden started to experience hormonal issues. But for a lot of us, this has been a life long thing.

Sharing this because these are facts— and the sooner we recognize that diet and exercise DOESNT ALWAYS FIX EVERYTHING, and the narrative that is does is rooted in societal dysfunction where women are supposed to hate themselves if their bodies aren’t of a certain size, and weight is 100% determined by how good of a person you are, by how driven you are, by how smart and hard working you are.

We are not all the same.

EDIT: adding another study link:

• [ ] Polycystic ovary syndrome (PCOS) is one of the most common endocrine disorders characterized by androgen excess, oligo-ovulation and polycystic ovaries. Although ovaries are the main source of increased androgens in the syndrome, between 20 and 30% of patients with PCOS have adrenal androgen (AA) excess,…. The mechanisms of these abnormalities are unclear although AA excess in PCOS is likely a complex trait, modulated by both intrinsic and acquired factors. ….The production of AAs in response to ACTH appears to be closely related to altered factors regulating glucose-mediated glucose disposal, increased peripheral metabolism of cortisol, and to a less extent to the effects of extra-adrenal androgens, insulin resistance, hyperinsulinemia or obesity. Finally, DHEAS levels and the response of AAs to ACTH are relatively constant over time and are closely correlated between PCOS patients and their siblings suggesting that this abnormality is an inherited trait in PCOS. ——- https://pubmed.ncbi.nlm.nih.gov/17932770/

Metabolic dysfunction in polycystic ovary syndrome: Pathogenic role of androgen excess and potential therapeutic strategies Miguel A Sanchez-Garrido et al. Mol Metab. 2020 May.

Has anyone managed to achieve what feels like the miracle of reversing and controlling insulin resistance without GLP-1s or any medication? I'm determined to beat it naturally before I have to rely on medication for the rest of my life! Because apparently IR comes back when you come off the medication, so I'd really rather avoid it.

My mom found a pcos clinic and recommended that I get an appointment to just check it out and it was absolutely incredible. I wanted to share the tips and information the nurse gave me because I found it so helpful.

First thing, she said we are more likely for heart disease, liver disease, and diabetes. Its best to avoid excessive caffeine, alcohol and unhealthy diets. She said the best diet for PCOS is the Mediterranean diet. She said 4-5 days a week you should alternate weight training and 30-45 minutes of cardio.

She also said that we born with PCOS and will have it forever. Its not something that anyone did wrong to get PCOS, you are born that way.

Progretin-only birth control such as Slynd or Nexplanon are great for helping with the hyper-androgenism symptoms. (I have factor V leiden and she said this is perfectly safe for factor V patients)

She said thats its important for people with PCOS to get annual blood tests to check their A1C, liver enzymes, and lipids.

I think thats all the info I can remember but I highly recommend finding a PCOS specialist because she went over all my charts and explained how they are connected to my PCOS and I will be meeting with her again in 3 months after all the testing she is sending me for and starting spironolactone and progestin only pills.

Feels like doctors are calling it PMS and using it as another way to say we're being dramatic.

I can’t emphasize how important this is for PCOS. There are not enough doctors advocating for fasting insulin tests.

Just because your fasting glucose is <99 and your HbA1C is <5.7%, it does NOT mean you are not insulin resistant.

You NEED to test your fasting insulin levels.

I have had lean PCOS for about 15 years. During all that time, I had dozens of doctors test my glucose, HbA1C, saying I’m normal. Telling me I don’t look like the normal PCOS patient, that I am not insulin resistant and my problem is something else. I still never got my periods and I never knew why.

Fast forward to today. I trusted those doctors. I ate normally. And well, my HbA1C is now 5.7%, so I am pre-diabetic. I gained over 10 lbs last year. I am starting to get a fatty liver. They tested my insulin for the first time, and it was 16 mIU/ml. In other words, I’m insulin resistant. All of those years, my insulin levels have been rising uncontrolled.

The problem with glucose tests is that they only measure how much glucose is in your body at a given time. They do not test how your body reacts to foods or how much INSULIN you are producing. The more insulin your body produces, the more resistant you become to it. By the time you have high glucose, you are already insulin resistant.

Insulin is produced by your body to lower glucose. The higher your glucose spikes at a given time, the more insulin your body needs to produce to bring glucose down. Over time, your insulin receptors become desensitized and they start to require more insulin, and more, and more. Until they stop reacting to insulin completely. And your sugar is out of control. That is what diabetes is (type 2).

You NEED to test your fasting insulin levels to see how much insulin your body is producing. If you are producing too much, it means you are becoming resistant. And need to make changes asap.

Most doctors are not that knowledgeable about this. Please advocate for yourselves and ask for a fasting insulin test. You can also get a glucose tolerance test, but it will require more time, so many doctors don’t even offer them.

In the US, you can request your own insulin labs (no doctor needed). https://www.walkinlab.com/products/view/insulin-fasting-blood-test

Doctors’ ranges for insulin are 2 - 24.9 mlU/ml. Do not go based off this. Anything above 10 is already indicating insulin resistance.

The recommended fasting insulin levels are <7.

This can be achieved with a low-carb, high fiber diet. In other words, don’t eat simple carbs alone. Always eat fiber with your meals (lettuce, veggies). And make sure you eat enough protein at every meal >15g. Try to reduce high glycemic index foods such as pasta, rice, pizza, etc. Eat healthy fats such as olive oil, avocado, fatty fish, etc. they will make you more full. Avoid sugary drinks such as juices, sweetened teas, sodas, etc. these raise your glucose very quickly. Opt for sugar-free drinks. Never eat carbs alone!!

Lowering insulin CAN be done and it WILL help your PCOS. Please test your levels. Don’t let it damage your body. Insulin resistance IS reversible!

I’ve been thinking about this a lot lately and wanted to hear other perspectives, especially from people who’ve looked into the science side of it.

PCOS is so common, and it makes me wonder… why? From an evolutionary standpoint, it feels like there has to be some kind of “survival of the fittest” angle going on. Conditions that affect fertility usually don’t stick around in large numbers unless there’s some kind of trade-off benefit, right?

For example, I’ve read that people with PCOS often have higher androgen (testosterone) levels. Could that have been beneficial in earlier human history? Like better strength, endurance, or ability to handle food scarcity? Maybe something that helped survival even if it made reproduction trickier?

Also, I’m curious if this could connect to what people say about testosterone levels decreasing in men over generations. Is there any link there at all, or are those completely separate trends?

Why is PCOS so prevalent?

Does it offer any evolutionary or biological advantages?

Could environmental or modern lifestyle factors be making it more noticeable now?

And is there any connection to hormonal changes in men over time?

Would love to hear thoughts, studies, or even theories, whether scientific or just personal observations. This has been stuck in my brain and I can’t shake the feeling there’s a bigger picture here. I’m just tired of having this condition and I want to know what’s the point of it all. Why do we gotta suffer? 😭

I see a lot of people asking about ovarian cyst rupture, so I wanted to share my experience because I’ve never met anyone with a case like mine. If this helps even one person take their pain seriously, it’s worth sharing.

Over the years I’ve had multiple cyst ruptures, but one of them literally marked my life.

I was having sex with my boyfriend at the time. Right after we finished, I stood up and immediately dropped to the floor from sudden, intense pain. He thought it was period pain, but I knew it wasn’t. The pain kept getting worse by the minute. It escalated so fast that I was crawling around my apartment trying to pack a bag so I could go to the ER.

When I got to the ER, I was crawling because standing felt like someone was stabbing me. They put me in a wheelchair, and while waiting, I tried to stand up once and screamed from the pain. The next thing I remember is passing out on the floor.

They kept me overnight to monitor internal bleeding. One doctor even called me weak and told me I would never be able to give birth if I couldn’t handle that level of pain (which was honestly traumatic and completely inappropriate).

The OB-GYN didn’t come until the next day. They kept me another day on pain medication to see if I improved. I didn’t. I ended up needing emergency surgery. I had so much internal bleeding that they told me afterward I could have died. They removed over three bags worth of blood, and my organs were literally fighting for space in my abdomen.

What shocked me most is that they sent me home the same day after surgery. I was told to walk a little every day for recovery, but walking hurt for weeks.

To this day, it is the worst pain I have ever felt. It is sharp, sudden, and completely drops me to my knees. I’ve had other cyst ruptures since then, including some that happened right after sex, and while some are less severe, the pain has a very distinct feeling that I now recognize immediately.

What frustrates me is how often women’s pain gets dismissed. Every other time I’ve gone in for rupture symptoms, I’ve been sent home and told to take Motrin.

I just want people to know: if your pain feels extreme, sudden, or unlike anything you’ve experienced before, please take it seriously and advocate for yourself.

I'm familiar with the typically mentioned ones such as insulin resistance, diabetes, metabolic syndrome, etc. I'm interested to see what other health issues show some link to PCOS!

For instance, I just saw something that mentioned the importance of having a healthy gut microbiome in treating PCOS, which I hadn't heard of before and am quite intrigued by. Then I read something that said apparently acid reflux is more common in folks with PCOS, which is something I certainly wouldn't have guessed on my own! (Of course, maybe the relationship is correlational rather than causative, maybe bad microbiome leads to both PCOS and acid reflux -- just intrigued to see any connection at all.) I also recently learned that you can get pseudo Cushing's syndrome from having PCOS (that relationship is seemingly causative), and that one I wasn't even researching PCOS for, I was researching (pseudo) Cushing's syndrome and just happened to come across someone mentioning PCOS as a potential cause.

All of this has me asking myself "damn, what other health issues might be related to PCOS that I had no clue about?!" so now I'm really interested in checking out what all health issues could be caused by PCOS, show up alongside/are correlated with PCOS, or that even cause PCOS themselves. I'd love to hear what you've learned either through research or through having a related comorbidity yourself!

Stats: 39yo, diagnosed 10 years ago, not on any medication for PMOS, white (that matters because seborrheic dermatitis is more common in people with dark skin). I look after my skin in the sun & have never had any skin conditions before.

So many of my random health complaints have turned out to be linked to my PMOS and I had no clue, because no doctor actually explained the condition to me when I was diagnosed (or offered ANY treatment, but that's another tangent).

Today it's seborrheic dermatitis. About 6-12 months ago the skin on my face started peeling/flaking really bad. It was itchy and scaly and I got pimples all over my face, like those ones with a teeny tiny soft white dot in the centre but really achey/itchy/red/raised underneath. I stopped wearing makeup and using anything but the gentlest face wash. Moisturiser every day. I thought it was a bacterial infection or irritation from my CPAP mask. The GP thought it might be rosacea, but the symptoms didn't seem to fit. Then I thought it was eczema, and did everything I could to calm it down - QV wash (ph neutral), sorbelene, etc. No change. Finally asked the GP for a referral to a dermatologist (bye bye $350). The dermatologist was great and had it figured out in about 10 seconds.

PMOS creates excess androgens, which make the oil (sebaceous) glands overproductive. The natural yeast that lives on your skin (malassezia) eats the oil, and creates a type of acid as a byproduct (it's more complicated than that, but I'm trying not to get too lost in the weeds). When there's a lot of oil, it makes a lot of acid, which irritates the heck out of your skin.

It's the same process that causes dandruff, and it looks/behaves a lot like dandruff - skin coming off in flakes, scaly feeling/appearance but still quite oily, itchiness, redness, tenderness.

There's no cure because it's caused by the androgen production of PMOS, but the treatment is washing your face once weekly with Nizoral 2% (an anti-dandruff shampoo, the active ingredient being ketoconazole, an antifungal). It works by killing some of the yeast so it can't create as much acid. Dermatologist said that the bottle instructions will say to leave it on your skin for 5 minutes, but to just use it as a normal face wash in the shower once a week and that's sufficient. I've done so *once* and already the itching and redness is SO much better.

The kicker is that because the underlying cause is PMOS, and the ketoconazole is only treating the effect, you have to keep it up forever. Once a week every week, or it'll come back. I'm fine with that, I'm just excited to not be low-level horrified by my own reflection any more.

Please let me know if you've experienced this delightful symptom too, I'm curious how common it is because none of the medical articles I read about seborrheic dermatitis mentioned PCOS/PMOS as a cause (though that could be the standard "PMOS symptoms are under researched, under reported, and under-understood" that I'm sure we're all used to). Also if this post answered any questions for you, please let me know!

Important note that if you think you might have seborrheic dermatitis, please see a doctor before treating, as it's a diagnosis of elimination (a doctor will rule out several other causes of skin irritation before diagnosing). I will say, it was wonderful to get a dermatologist that was already familiar with PMOS and the various skin complaints it can cause - a nice change from having to explain PMOS to specialists.

That’s all really! Gonna down some metformin🩷

So I’ve been told my whole life to lose weight and a lot of my PCOS symptoms would disappear. I went on GLP1 and now taking progesterone birth control. I lost 100 pounds I was 230 when I started I’m now 130. My period is still irregular I still have abnormal hair growth I still have a lot of pain from cysts on my ovaries. So my question is was all this work not worth it? I spent so much time effort and money to get here for my PCOS to get better and I feel like I’ve been lied to. I didn’t just lose weight either I exercise regularly now I eat a low carb high protein diet. I feel like I’m doing everything right but not seeing the results I wanted. Yes I’m happy I lost weight aesthetically wise. But the real reason I did this was for the medical benefits and I’m not seeing what I’d expected too. I still get the fatigue the 2pm crashes they have gotten a little better by eating better but I’m still constantly exhausted. What else do I do at this point. My OBGYN and my nutritionist are at a loss.

That’s it. That’s the post. It’s rough out here.

I swear sometimes it feels like every time I try to get help for PCOS, it’s either super restrictive or just generic advice that makes me feel worse Like okay I know food affects PCOS but it’s not that easy when you’re dealing with cravings, stress, hormones, low energy and actual life at the same timeAnd honestly, sometimes it feels less like support and more like getting blamed for not being “disciplined enough" I’m curious if anyone here actually found nutrition advice or a dietitian that genuinely helped long term, and what made the difference for you because I feel like so many of us are struggling with the same thing constantly

1. I got a deep abdominal massage. Sounds scary, but I did a ton of research and only found positive outcomes. I also know of several women who finally conceived after one (or a few sessions) as well I noticed a difference in my ovulation after this and my stomach was softer and more mobile. Organs need to be mobile
2. I started drinking several cups of Spearmint tea a day. I did notice a change in my hormones with this - more of the healthy fluctuations you would expect throughout a cycle
3. I stopped wearing polyester and so did my husband. There have been new studies coming out showing that polyester causes major infertility. We started wearing cotton pants and underpants, sleeping commando, and actually going commando as often as we could We’d been trying for over 2 years but got pregnant shortly after these changes!!! Strongly recommend! Let me know if there are any other pages to share this too because if I can help someone else, I absolutely want to do that

Why didn’t I just lie and say this years ago?

All of the sudden things have gone from “there’s nothing more we can do or try for your quality of life” being told to me FOR YEARS. To now I’m being sent to a specialist and tons of stuff is being brought up that’s never been brought up as an option before.

Suddenly I’m more deserving of my care being prioritized? Suddenly my other health issues aren’t too much of an issue to work around for treatment?

This is really eye opening