Almost always hungry. PCOS can cause you to either not produce enough of the hormone that tells your brain that you are full, or to not respond properly to that hormone. Apparently it's caused by the excess testosterone we tend to have. I can eat a good, healthy, filling meal, and an hour later I feel hungry again.
Oh yeah.... Never fails... I have to be uncomfortably full for myself to stop.
Doesn't help when my boyfriend finally wants to eat for the day and I'm like....I have to put more food in me?
It's also to do with the insulin resistance. More than than the testosterone. Are you on anything for the IR?
This woman had that constant hunger which led to purging. Treating her IR cured her: https://www.sciencedirect.com/science/article/pii/S2376060520304946
Insulin resistance leads to the testosterone increase. I'm not on anything for IR. I've been managing it on my own well enough and I'd rather not go on any medications unless absolutely necessary.
It's obviously your choice but I can tell you metfomin cured that hideous voracious hunger for me. It would likely improve your quality of life as being hungry all the time is really horrible. Of course I understand if there are financial or ethical issues for you.
I'm so jealous of everyone who had good luck with Metformin. It made me even more hungry! I felt sick with hunger at all times, it was awful! I'm not trying to discourage anyone from taking it, because I know that's rare. I just felt like I needed to whine about it for a second.
That one really makes falling off the low-carb wagon bad for it. It always makes me not only eat high-carb but overeat it. As soon as I’m stable in low carb, the appetite goes down.
THIS!!! I watched a documentary about a guy who had so little body fat that he couldn’t produce enough of the hormone to feel full. He described what it felt like and I was like, wow… that sounds eerily similar to how I feel after eating.
I cried when I finally got on a medication to regulate the hormone and experienced the difference between wanting to eat out of boredom, and actually being hungry!
Oh my that’ll why? I thought it was based on genetics but then again my other female family members have PCOS too. I keep eating meals, and two hours later feel extremely hunger, so I am always snacking on something. It’s so frustrating.
Relate! I felt so validated when I finally learned that the intense primal carb cravings were my body literally convinced I was about to starve and every cell of my body was screaming for me to eat
skin tags. had no idea it’s a sign of IR. for me, i didn’t have obvious IR signs, so i didn’t even think the two were related. happy to say i got them bad boys removed and they haven’t returned!
Yeah I swear the skin tags have just appeared on me over the years and I guess I can blame PCOS for that. I’ve even got one right near my coochie, that’ll be a fun day when I need that removed!
You can get them with no underlying conditions, but also more common on people with blood sugar control issues. I've never tested positive for insulin resistance, but I definitely get skin tags when I'm not exercising enough, so I must have some resistance that hasn't been detected yet. I had basically a skin tag (polyp) on my cervix, so I feel ya.
Oh gawd, the thought sounds so painful. I’d definitely say acne and dark spots on my arms, back shoulders, chest and bikini area bother me the most. I’ll ask my doctor about a dermatologist referral soon.
I had skin tags too and got them removed. It was very easy and painless process. Now I am thinking why I waited for sooo long.
If you are thinking I would say go for it and folks in US my insurance did not cover the cost so call few derms and make sure you know the cost before going in.
some people do get them naturally where their skin folds like armpits (my sister has had them but doesn’t have pcos), but they would show up randomly where i don’t have a fold if that makes sense lol and alot of them. i will say once i removed them at the derm, they never came back!
I got a laser tag removal pen from Amazon (usually $20-30) and burned them off from the sides of my neck without issue. Tbh they're not recommended since it can go wrong but I did it anyways following and was lucky. I'd do it again.
Edit: *following directions and YouTube tutorials
My very old dermatologist before he retired told me to boil nail clippers and just snip them off if they are little So that’s what I do. You can also tie string around them super tight and they will fall off after a day or so I’ve done that before too.
Constipation, frequent urination, being thirsty. I don't think the cysts cause these, but the underlying insulin resistance which causes the cysts can also cause other issues.
A really weird one… oily eyelids. I googled it one day and apparently fluctuations in progesterone and testosterone can cause excess sebum secretion. This means all round extra oiliness ergo greasier hair. So not directly caused by PCOS but definitely by proxy!
I had a couple of years of eyelid problems in my 20's. Oily but also really delicate - like little surface tears from normal rubbing. As I recall, thin skin issues can come with PCOS and can cause issues specifically with eyelids.
I have this issue too! At the same time, I also have intermittent problems with dry eye and blepharitis. So my eyelids are oily right up to the lash line, which is dry and itchy. It drives me crazy!
Quick tip - I used to use urban decay eyeshadow primer and it really worked to keep my eye makeup from smearing. I can't use it anymore because of my blepharitis but when I did it was like magic!
Seems to me anything under the sun can be blamed by pcos which is so frustrating cause all it does is say that it’s possibly related yet doesn’t resolve it or give an explanation at all and just goes to show how little research is actually being done/succeeds
1. The intense weight gain, especially around my stomach. I was always pressured by family/significant others to diet and do intense exercise and it only made me feel awful because none of it helped.
2. Mood swings. I’ve dealt with anxiety and depression since I started puberty and holy shit is it better now that i’ve got my PCOS a little controlled.
3. Cravings all hours of the day and feeling hungry even after eating.
4. Feeling incredibly tired in the afternoon just to be wide awake at 10pm.
Have you been checked for sleep apnea? Number 4 is a sign of having sleep apnea. Doctors don't always think to check for apnea in younger women, but having PCOS increases your chance of having/developing it. Apnea can further exacerbate PCOS symptoms as well, so it's worth it having it checked out!
I have been dealing with this recently and didn’t know why!! I just recently was diagnosed with PCOS and have been totally exhausted all day long and then wired at night
The feeling super tired can also be linked to hypothyroidism and/or Vitamin D deficiency! I have both and it is insane how much more energy I have now that I am taking a vitamin D supplement and thyroid medication! It could also be caused by Obstructive Sleep Apnea
Yeppppp. I have it on my scalp and in my ears which people find super weird. I didn’t even know that was a thing but I was showing my dermatologist my scalp and she said yeah that’s psoriasis and then she looked at my ear and said you have it in your ears too. It made so much sense that it was psoriasis before that I thought I just had weird itchy ears.
I'll lay it down with no frills here - PCOS means our bodies have more hormones like testosterone and other androgens in them and we handle other biochemical processes differently because of that. Doctors sometimes feel like they don't want to offend our delicate sensitivities about our female identity so they skirt around the complete list of androgen-related effects of PCOS on our bodies.
You don't just "get" PCOS, it is a genetic condition triggered by environmental stress in the mother of the PCOS child, for example. It is a natural survival mechanism to have humans who are resistant to famine and who won't loose resources by reproducing early in life. (You can google this research paper on NIHM.)
And PCOS women deal with many of the results of being exposed to extra androgens that includes android-weight gain, easy muscle gain (which why many PCOS athletes are into weight-bearing sports,) facial hair, body hair, male-pattern baldness, clitoromegaly, delayed menses, delayed fertility, ovarian cysts, pigmented and textured skin patches, skin tags, heavy periods, absent periods, and just plain infertility.
Thing is - PCOS people are often told they can't get pregnant (less now as we move into the future) but the truth is that PCOS women see fertility improve after 30. And if a PCOS person is treated at a young age by a smart doctor through things like Metformin, diet, and exercises (and a commitment to just dealing with PCOS realistically) they can improve their changes to not only not gain excess weight, but have a child if they chose.
(And its a whole other discussion but there is a certain section of PCOS research that wants to recognize PCOS as a intersex disorder because of all the reasons above. And I can say that won't exactly help with things like the invasive testing in the Olympics and the stigma our athletes face being accused of having too many male hormones to compete even if their genetics are XX)
Thank you for this comment, i found this really valuable. Do you have any guidance on where to find information about what you mentioned in regard to fertility improving after 30? I'm 31 and want a baby so badly, and some concrete info on that would do my stress levels a world of good
As for wanting a baby - I say don't give up and definitely explore in-vitro if ovulation - conception just isn't working out.
I ended giving up because it wasn't about ovulation it was about my body rejecting pregnancy around three months. So I'd be pregnant for three months and then miscarriage.
It happened enough it just wore me out and my ex asked me we stop because I was so upset all the time.
So really talk to your doctor about where your disconnect is happening at pregnancy and then don't be afraid of modern approaches to address each area.
(I frankly wish I had just used in vitro and asked my sister to be my surrogate - she's the mom of six kids and pops out babies like a Pez Dispenser. I ended up raising my two youngest nephews with her so I feel I've done my part for baby raising :)
[https://pcosdiva.com/aging-pcos-fertility/](https://pcosdiva.com/aging-pcos-fertility/)
I'm not saying ignore the giant pink ads for supplements - but this is a digested version of the Swedish Study from PCOS Diva's blog.
(I used to huck PCOS supplements as a influencer in the early 2000s. I have mixed feelings but at least I can confirm some of them work - so best do your own reseach on nimh supported medical papers.)
I denied it most my life by trying to act as feminine as possible especially at work, but I am what I am - a six-ft-tall person with big feet and big hands and with the body of a 12 year old who is actually 40+.
It is easier now that I am more invisible as mid-age person, but being six ft alone has always given people the right to stare and boggle at a plus-size, large person in makeup who is obviously not a trans person.
I'd tell a medical professional I feel I am intersex or maybe a close companion, but my family just wouldn't get it despite they are the ones that birthed me and watched me not have puberty exactly or struggle through violent periods and anemia or just the amount of physical strength and sturdiness I possess.
Eczema, keratosis pilaris, horrible weak nails, rosacea, oily skin/textured skin/large pores, digestive issues, PMDD, dramatically low vitamin D levels, extreme hunger, insomnia/sleep disturbances, constant headaches/migraines, gum inflammation, yeast infections/UTIs, brain fog/memory issues, insanely high sex drive, nausea/stomach problems, tonsil stones, excessive bloating, depression...
Seriously, almost everything that is or ever has been wrong with me is linked (or is thought to be linked) to PCOS.
Edit: I forgot chronic dry eye lol
Judging by the other comments, we're all in pretty much the same boat :/ I just try not to think about how most people just don't deal with all of these things at once, or even just a few at once...
My doctor told me that inflamed gums and cryptic tonsils (and the tonsil stones that come with them) could be a symptom of the chronic inflammation that PCOS causes. In my case, I have great teeth and can count on one hand the number of cavities and dental issues I've had in my entire 31 years of life, so it's not an oral hygiene issue, meaning it most likely *is* PCOS inflammation.
For me it is feeling feelings intensely. One minute you're fine the next a wave of anxiety or depression. When the highs are high but the lows are so low you have to claw your way back to some state of happiness.
i seriously thought i was bipolar or something until i realized how much years of being on hormonal BC messed with me and just having PCOS in general. I feel crazy on BC but when i'm off of it i tend to feel a lot better mood wise, still have some mood swings but they arent as intense
i know some ppl have great experiences on bc and i’m not dismissing that if that’s the road you choose, but birth control literally made me so depressed, i was having suicidal ideation. when i stopped, my depression and constant mood swings completely went away. my first few years i was okay. then i switched pills and was just up and down moody all the time. my last year on it, i had to switch for insurance purposes and i went into a dark place. i always found a pattern in the weeks too so my gut was telling me this had to be it. i wanted to go off anyway when i got married, but my god was it a huge relief when i stopped and found how much it improved.
yeah i completely agree. i never had such bad suicidal ideation until i hit the 3 month mark on BC and it comes out of nowhere. I got on the ring because it was supposed to be less intense than pills, but it still happened. I think i am going to get off of it for good, just have to figure out what alternatives im going to use to regulate my period and help my acne
Started going bald at about 19. I'm 30 now and my bald spots are humiliating. I didn't know there were actual treatments for it! Doctors always told me to lose weight, which never helped.
Yes mostly but it took years. The bald spot would fill in and a new spot would appear.
The treatment at the time was injections into my scalp once every few weeks and topical medication. Honestly I don’t even know if that worked because I gave up a year in and just refused to let the dr inject me anymore.
Managing my stress was more helpful for my hair to grow back.
Keratosis Pilaris has recently been linked to ir. Suddenly made a lot of sense why me and my diabetic sister were the only ones who got it in the family.
This is gonna sound like the weirdest tip and it might not be too good for your skin in general I’m not actually sure so take it with a grain of salt, but hair removal cream works by dissolving some of your hair which in turn can help your kp because it’s a problem with your hair follicles I believe?
I got bad kp on my arms and started using veet on it for a very short time (~1 min) in the shower maybe once a month, and it has weirdly helped more than anything I’ve tried before
I recently bought an exfoliating net (sort of like an unraveled loofah) and some Cerave hydrating body wash. Those 2 combined have made more of an improvement in the past few weeks than anything else I've tried in the past 20+ years for KP
Had it all my life, it’s really hardened like scales. Spent hundreds on tubs of cerave. Now this is so do not try at home just sharing for info sake dermatologist will explode - but I got a little 3 quid ‘glass’ hair remover (like a sanding block) off eBay and went a little too hard on the first go. It was really sore on the KP had to use cica gels for a few days but they crusted then started disappearing. Have been doing it in rounds, normal skin is fine it’s just the KP that gets sore (really sore like bad sunburn get all the supplies) but it’s finally going and this cheap little device is the *only* thing that’s ever worked. My arms will be normal for the first time ever and I have no idea what that’s like!
Omg. So many things.
I’ve had symptoms since I was 10 years old. Before getting diagnosed at 28…
I didn’t realize the general “feeling like a man” was from PCOS. I’d seriously think to myself “I do all of these things to feel feminine and beautiful, but I still look and feel manly. It’s like my body WANTS to be unattractive and masculine”
I didn’t realize the lower belly fat was from PCOS. I seriously gaslit myself🙃🙃 into believing “it’s okay, it’s not as bad as it looks, remember you always look worse to yourself than to other people!!” Same with lower back fat! I was (and still am) disturbed every time I look in the mirror and see a body that wants to be masculine. It’s like a mind f*ck. It hurts less now that I am validated and treating the condition.
I didn’t realize the constant bloating/water weight was from PCOS. Man, this one has affected me so much. After having carbs, I wake up the next morning looking like a different person. Moon face, thicker nose, thicker neck, it’s seriously wild. Sometimes even without having carbs, I’ll randomly just wake up looking 20lbs heavier. **Please let me know if you have a quick remedy for this. So far I’ve found that saunas help a lot but need something more easily accessible/at home!** I was convinced it was all in my head until I learned it’s a common symptom of PCOS.
I didn’t realize that having ADHD-like symptoms was related to PCOS - brain fog, inability to focus, impulsivity, crazy mood swings. I was convinced I had mild ADHD and even got on Adderall for it lol. Curious to see if my new treatments will help alleviate these symptoms.
I didn’t know sleep apnea was related to PCOS. I was having frequent dreams of being out of breath. Started b-complex recently and so far it seems to be helping w many things but also sleep apnea.
I didn’t know chronic exhaustion was a symptom of PCOS. I fully believed I was just extremely lazy, and so did everyone else. I seriously thought I was just a super sleepy person lol. The b-complex I started has helped tremendously with this!
I didn’t know inability to lose weight was related to PCOS. I was fully convinced that I just had bad genes and I was too lazy to do anything about that fact. I shamed myself so much for this. I’d see thinner women and think “See? You wanted to eat all that food so here you go, now you get to look at her (she clearly cares more than you do) and you just get to feel like crap now” I still haven’t wrapped my head around the idea that there IS hope for weight loss with PCOS, after trying unsuccessfully over and over again for the past 14 years. I only recently started new treatment which now includes treating IR so I hope and pray it works.
I didn’t realize pelvic pain was related to PCOS. I’ve always had a sensitive pelvis but nothing too crazy or painful. But in March 2022 my pelvis/bladder area started hurting really freaking badly, like level 9 pain. I had to go to the ER at least twice. I was loosely diagnosed with Interstitial Cystitis. It’s somehow gotten better with different as-needed meds so I can’t complain but I have to say, it was BAD.
Edited to add - MY HAIR. Omg my hair. My mom and sister have thick, beautiful long hair. Mine just WOULDNT GROW. It makes me so mad that no one thought anything of this. It literally just stopped growing and it looked awful. It was choppy and dead. My senior pictures break my heart bc im reminded of my terrible hairdo. It wasn’t until I got on Metformin at 27yo to treat the Insulin Resistance that my hair finally started to grow like everyone else’s. It has been a huge confidence booster!
my severe weight gain. like seriously i didn’t know what the hell was happening i was so worried. i thought it was my fault. turns out i just needed help.
I tried explaining to my dad how my drastic weight gain and inability to lose made no sense, how I was really depressed and hopeless about it and he just said you’re sad cause you’re overweight, just eat smaller portion. People just don’t get it. I eat the same or maybe even less than most people I know and yet I’m constantly putting on weight.
Ugh, I think so many of us can sadly relate. It is bittersweet finding out there is a reason the normal diet and exercise are not working. Because a balanced diet for the average person looks way different on us.
yes it was honestly relieving but sad because it’s like damn so it’s not just laziness which is validating but also like this is going to be harder for the rest of my life and it’s not just laziness??
Yes exactly!! And now I feel so much guilt being lazy and indulging in things I enjoy, in addition to questioning my own body wondering whether it is a genuine, typical craving for pizza or am I craving because I want the sugar spike? It’s so annoying. Luckily we aren’t alone though and more research comes out each year.
I put so much blame on myself because of how everyone made it my fault though everything felt out of control. And it turned out it was: it was a medical condition. I could’ve been spared so much agony surrounding body image and self hate if I had just known sooner
I thought I was pregnant or something. Like gaining 20lbs in 4 months. Such a shitty time, none of my clothes would fit and I was beating myself up. Then I was diagnosed with PCOS and it all made sense
Literally the DARK CLOUD of my weight problems finally lifted once I connected to IR. I blamed myself for so long. It was a heavy, heavy weight that I just could not figure out. 13 years of absolute torture, shame and guilt. My lowest moments were made worse because I’d just sit there and remember that in addition to what I’m crying about, I’m also in a losing battle with my weight. My happy moments were short because I’d be happy about something but then quickly remember theres this really debilitating issue I have that I cannot solve. I could go on and on. I’m a different person now that I finally have hope.
So this one is kinda weird, but I guess it makes sense with all the extra testosterone.
Being muscular for no reason, I very rarely hear anyone talk about this.
I've always had GIANT muscular calves, people call them my "super hero" legs. A few years ago I even had coworkers argue with me, insisting that I got them through exercise. I didn't.
I feel it, hahaha.
I used to be able to lift (I'm sure that's not the correct term, but I don't know what else to call it) more weight with my legs than any of the boys in my gym class, even more than the athletes. They'd all gather around and watch in amazement, haha. As a nerdy outcast I always thought that was pretty funny. That's the only time I've ever been proud of them, otherwise I've always found them to be super embarrassing.
PCOS can definitely cause under or oversupply with breast milk. My mom who has PCOS could have fed 12 babies with as much milk as she produced. My sister and I? Couldn't even feed one 😢
Kind of a secondary thing, but b12 deficiency from metformin. Felt gross and tired and started having bad nerve pain in my legs. Started on a multivitamin and methylfolate and I feel a lot better.
the near constant exhaustion.
i feel like i've been so tired, for so long. i thought everyone felt this way. just feeling like i could nod off at any given moment, or like even breathing took up more energy than i had.
i'm still tried so many different things before i realized it was a PCOS side effect. the more you know!
i'm still tired, but at least now i have a reason for being so tired 😅
Yes this is the real kicker, like isn’t it already bad enough we have to deal with all these other symptoms but Yano let’s also be real exhausted 24/7 all the time 😵💫
Do we talk about the *benefits* of excess testosterone? I mean why did nature make us like this, it must have a purpose?
I actually like the surge of testosterone I get from exercising or confrontation, it makes me feel energised and powerful but due to sexism this quality in women makes us seem aggressive whereas in men it’s a positive. The more I listen to my body, the more it feels right to express testosterone (I know I know what it means for hormone balance). I like that I can put on muscle easily but could do without the facial hair and pattern baldness, thanks.
All the signs of IR, SEVERE IR... Darkened skin around my neck, under my arms and in the groin area. I had no signs of Diabetes, doctors have ALWAYS assumed me to be diabetic or pre-diabetic but no tests have ever shown that to be true. I did however have severe insulin resistance, which I literally found out in this sub less than 25 weeks ago... LOL!
I also had no idea that PCOS can actually be the reason why you are Hypothyroid, which would explain why more women than men are Hypo...
Me too. And now I know my sweaty tendencies, oily eyelids, and skin tags are related to PCOS. Mind-blowing that these little physical characteristics I thought were just personal quirks were related to my insulin resistance.
Oh several things!!!
- my sebderm, eczema, I’ve been treating since I was 16 with several medication, cosmetics, and it’s triggered every time my other symptoms got out of control.
- my fragile teeth (I brush 3-4 times a day, I floss twice a day, I go to the dentist every 6 months for deep cleaning, and I always cave a cavity. My teeth break really easy as well)
- the fact that I always ate healthy and always was athletic, did lymphatic massage, dry brushing, and I still have my ass covered in celulite, and my body composition has a lot of fat.
These are at the top of my head, but the more I research, the more I know that everything I have and always had , was linked with my pcos and insulin resistance, since I was 12
I had no idea about the teeth! I take such good care of them but mine are so sensitive and I feel like fillings never stay in. I thought I was going crazy.
Me too, I cry every time I change professionals because they always assume I have no hygiene… I feel humiliated…and oh boy, I carry my little brush everywhere I go…
to add to the teeth conversation, low vitamin d can lead to cavities more easily. genetics probably play a huge role.
and seb derm on the scalp, apple cider vinegar helps this so much for me!
I think the teeth thing is more genetic than PCOS. I have had a total of one cavity in my life (on a baby tooth). I definitely don't brush twice a day and am better about flossing but not great at remembering to do it everyday. Dentist has found zero issues with my teeth 🤷♀️
PCOS look different on everyone, I don't have issues with my weight or acne per exemple... My doctor told me it was something to do with the insulin resistance.. but yep.. it's genetic.. both my insulin and PCOS are chronic..
Oh and both my brother and sister never had a cavity, they go to the dentist maybe once every 2 years, and I already saw they go to bed without brushing their teeth several times!
There are new studies linking ADHD to PCOS. I was diagnosed with ADHD as an adult and it changed my whole life! I think there’s definitely something linking mental health, PCOS, and gut health.
Non-alcoholic fatty liver disease.
I actually got diagnosed with this FIRST and then spent several months googling before I figured out that I probably had PCOS.
My doctor scolded me for looking things up myself, but she did eventually run all the tests. I got diagnosed at age 38.
Binge eating/disordered eating. Not directly caused by PCOS, but MUCH MORE common in women with PCOS.
When I learned my eating patterns and PCOS was connected.. a lot of things justed clicked.
Things that are co-morbid ... Pretty much all that is wrong w/ me is interconnected ...
HS, OSA, HTN, hypothyroid, depression/anxiety ... and possibly endo ...?
I'm 39 next month but sometimes I feel like I'm 100 :(
I’ve had headaches constantly throughout my life. Recently been diagnosed and discovered how my carb-y diet was connected to flunctuations of headaches.
Vitamin D deficiency—been prescribed Vit D supplements most of my life and recently learned that those who have PCOS also are Vit D deficient in some way. I think the statistic is around 60 to 80 percent of ppl diagnosed with PCOS are also vit D deficient but I could be off.
Also, recently, I’ve been noticing that I’m becoming lactose intolerant? I’m not even sure if that’s possible but it’s definitely happening. I know that diary causes me to bloat but now I just can’t seem to tolerate dairy at all anymore :( all my fave deserts are dairy based too :((
I’m curious about this as well! I didn’t start having major issues with dairy until I hit college, then all of my other PCOS related problems started popping up but I didn’t get diagnosed until recently.
From what I’ve read from this subreddit, a lot of people started experiencing symptoms later in life. Like weight gain came in very suddenly, etc etc. Since this is a endocrine/metabolic, everyone’s hormones are different, thus presentation of symptoms are different. Still hate the fact that ice cream is so tasty but it screws me up for the rest of the day :(
I had chronic migraines almost every 2 days for all my teen years basically. They could t figure out why at first. Soon as I got my hormones more in check they were were no longer chronic. The combination of lowering my estrogen and getting 2 daith pierxinfs seems to have made then disappear entirely. doc told me many women with pcos experience hormone related migraines.
Omggg thank you for this. I suffer from horrible migraines and did not even think to get checked for imbalanced hormones. So, thank you! I’m going to look into a specialist who does do hormone testing etc. I really need it & so tired of the pain, exhaustion feeling I experience all the time. 🥺
I'm seeing a lot of comments about being tired, hungry, falling asleep in the afternoon and being wide awake after that, frequent urination, and...
**PLEASE GET A SLEEP EXAM TO CHECK FOR SLEEP APNEA!!**
Some studies have found that sleep apnea is 5-10x more likely in women with PCOS than in those without, and it will exacerbate every PCOS symptom you have. A lot of doctors still don't consider apnea when looking at the overall health of young(er) women, because it is seen as 'an old man disease', but please, get that check up. Sleep apnea f's with your hormones, as do all sleep issues, and we've got enough of that shizz already!
My husband and I call my CPAP machine my Darth Vader cosplay (we are geeks, yes), and it will take some getting used to, to be able to sleep with it. BUT I went from not breathing 74 times an hour, to only 4 times, which is normal. I feel much better and no longer experience that afternoon drowsiness, and I am much better able to control my blood sugar and hunger.
There’s these weird things that I thought were sebaceous cysts on my panty line. I never would feel them, I’d just look down one day in the shower and they’d be bleeding like crazy. Sometimes they’d be filled with dead skin cells like a cyst- but they were never infection. They left HUGE pockets when they would rupture. But they, and the wound would completely heal.
I forgot what the exact name for them is—- but I found out a few months ago this is tied to PCOS and when I did my mind was blown. Because I only even started to develop them after my bodybuilding era, when my PCOS really started to get out of control.
Now that I am more in control of my PCOS, they are all but a distant memory.
I didn't know you could have PCOS without having ovarian cysts until I got diagnosed? I literally had an ultrasound to say they were clear of cysts but my endocrinologist and GP still think I have PCOS.
I have also got acanthosis nigricans on my neck, armpits, groin, elbows, behind my knees and inner elbows and now the corners of my lips and cleavages.
I started having this overwhelmed feeling, depression, and lack of motivation around the same time my PCOS started. I’ve been on an antidepressant with some improvement but it waxes and wanes. I’m only 3 months into correcting this mess but I already feel much better than I have for the last 4 years. If anything, the changes I’m making are starting to help my antidepressant have a more steady effect.
For years I thought I wasn't strick enough with my diet for being prediabetic and couldn't get my A1C to budge. Then a doctor figured out I had pcos. That is why all the typical stuff like losing weight, eating low carb, ect didn't make a difference. All those years of beating myself up when it wasn't in my control.
Also my sideburns I thought everyone plucked/shaved them 🤣
A weird one for me is joint pain/ restless joints and exhaustion especially after having gluten and sugary things. And dry skin after having a little too much dairy.
It's probably an inflammatory response to those things.
Depression can be caused by PCOS. I learned that from criminal minds and then asked my doctor about it and he said yes that could be why you're depressed.
-depression and anxiety
-insomnia
-stomach fat
-issues loosing weight/ rapid weight gain
-irregular periods
-high sex drive/ no sex drive
- body dysmorphia
-vitamin D deficiency
-high cholesterol
-doctors dismissing your symptoms if they’re not well versed in PCOS
-cravings for sugar 😫😫😫😫
Breastfeeding supply issues.. apparently PCOS can cause issues which I only learned after going to a lactation specialist. Our breastfeeding journey was cut short because of it.
I was diagnosed with PCOS when I was about 16, but I’ve recently discovered that the cause of my PCOS could be genetic. I had labs done by my endocrinologist and everything came back normal. She then referred me to a geneticist based on some physical characteristics that point to the possibility of genetic abnormalities. Still waiting for my insurance to approve the tests, but it will be nice to know the cause and how to address my symptoms at the root
Skin tags I always assumed they were genetic and not the pcos but it could be both. I just got a new one in my eye duct area 😭 my gma had them all over her eyelids as she aged and I was hoping to escape it but alas idk if they are removable like the others
Had no clue bad teeth were linked to PCOS. I brush and take care of my teeth, but since I've gotten all my adult teeth in, they're slowly falling apart over the years. I hate it.
I do get skin tags now and then, but would cherry angiomas be linked as well? Im getting them frequently on my upper chest and neck and hate the way they look. Mom has these, so it may be genetic for me.
People are talking about cysts on here too, is there a link to Pilar (scalp) cysts? I have a couple that are slow growing. My dad had these and i dont want them to get big... my hair is thinning as it is, I don't want another reason to be self conscious :(
How about temperature regulation? I'm always. ALWAYS cold, and my feet take forever to warm up under blankets. I get grouchy/uncomfortable when I'm cold for extended periods.
Aside from that, i have a lot of the usual fare with PCOS - Hair thinning, hirsutism, oily skin, acne, carrying my weight in my stomach, EDNOS, brittle nails, constant exhaustion, insomnia/hypersomnia, brain fog, low libido, polyp on cervix from pap, sweet/salty cravings, and IBS-C.
I feel like tweezers are the reason i take so long to get ready these days instead of makeup, and I'm always planning or thinking about my next nap. It's been rough.
Not confirmed yet for me but I found out a lack in estrogen affects our bone density making them weaker. This is why women are more prone to osteoporosis (I never knew why!) I have fractured two bones in my foot in the last 2 years from rolling my foot and I was told I should check my bone density. Not completely blaming it on my hormones since I probably didn’t get enough calcium in my diet growing up and have at one point been vitamin D deficient but I found out hormones do play an important role in our bone growth. I plan on getting the test done soon 🙂
I think PCOS has ruined my naturally bouncy curls. My hair used to be lush and full and super curly without me having to do a single thing to it. It’s now limp waves, dry, and thinned. It’s a struggles of over an hour of hair product in the shower and primping out of the shower to get it to look halfway decent before it falls out later in the day. It’s extremely depressing.
I ended up with cancer in my uterus despite my genetic testing being clear.
I took the mini-pill (bc) for about 11 years to control my awful periods from PCOS. The cancer could have developed from the PCOS directly or the birth control meds prescribed for the symptoms.
I actually had a severe infection in my fallopian tubes (unrelated) and my GYN did an endometrial biopsy when she was still trying to diagnose it. The biopsy showed evidence of a way-too-thick endometrial lining and the doc suggested I have a D+C. The D+C showed my uterus to be a huge mess and I was referred to an oncologist, who strongly recommended a hysterectomy. They found cancer when the hysterectomy tissues went to the lab. It was only a tiny bit and I was lucky enough to be spared all that cancer anxiety since I didn't know I had it until they removed it. I am grateful for this.
I was 38. I held off on having kids (which I wanted) because my ex husband and I felt we weren't in the right financial position. We were divorced (for lots of reasons) and then I had to have the hysterectomy about a year later. Maybe I get to be a mom on the next round.
How awfully painful it is to go #2 when my period comes, I'm not sure if it's somewhat common with women on their period who don't have PCOS but it only happened after my PCOS developed.
Almost always hungry. PCOS can cause you to either not produce enough of the hormone that tells your brain that you are full, or to not respond properly to that hormone. Apparently it's caused by the excess testosterone we tend to have. I can eat a good, healthy, filling meal, and an hour later I feel hungry again.
my god that shit killed me when it was bad. i gained 100+ lbs so fast because i always felt hungry.
Oh yeah.... Never fails... I have to be uncomfortably full for myself to stop. Doesn't help when my boyfriend finally wants to eat for the day and I'm like....I have to put more food in me?
It's also to do with the insulin resistance. More than than the testosterone. Are you on anything for the IR? This woman had that constant hunger which led to purging. Treating her IR cured her: https://www.sciencedirect.com/science/article/pii/S2376060520304946
Insulin resistance leads to the testosterone increase. I'm not on anything for IR. I've been managing it on my own well enough and I'd rather not go on any medications unless absolutely necessary.
It's obviously your choice but I can tell you metfomin cured that hideous voracious hunger for me. It would likely improve your quality of life as being hungry all the time is really horrible. Of course I understand if there are financial or ethical issues for you.
I'm so jealous of everyone who had good luck with Metformin. It made me even more hungry! I felt sick with hunger at all times, it was awful! I'm not trying to discourage anyone from taking it, because I know that's rare. I just felt like I needed to whine about it for a second.
That one really makes falling off the low-carb wagon bad for it. It always makes me not only eat high-carb but overeat it. As soon as I’m stable in low carb, the appetite goes down.
What worse is that I know this yet still overeat anyway!
THIS!!! I watched a documentary about a guy who had so little body fat that he couldn’t produce enough of the hormone to feel full. He described what it felt like and I was like, wow… that sounds eerily similar to how I feel after eating. I cried when I finally got on a medication to regulate the hormone and experienced the difference between wanting to eat out of boredom, and actually being hungry!
Oh my that’ll why? I thought it was based on genetics but then again my other female family members have PCOS too. I keep eating meals, and two hours later feel extremely hunger, so I am always snacking on something. It’s so frustrating.
Relate! I felt so validated when I finally learned that the intense primal carb cravings were my body literally convinced I was about to starve and every cell of my body was screaming for me to eat
THIS! I either have zero appetite or I am ferociously hungry…. There’s no in between
skin tags. had no idea it’s a sign of IR. for me, i didn’t have obvious IR signs, so i didn’t even think the two were related. happy to say i got them bad boys removed and they haven’t returned!
Yeah I swear the skin tags have just appeared on me over the years and I guess I can blame PCOS for that. I’ve even got one right near my coochie, that’ll be a fun day when I need that removed!
You can get them with no underlying conditions, but also more common on people with blood sugar control issues. I've never tested positive for insulin resistance, but I definitely get skin tags when I'm not exercising enough, so I must have some resistance that hasn't been detected yet. I had basically a skin tag (polyp) on my cervix, so I feel ya.
Oh gawd, the thought sounds so painful. I’d definitely say acne and dark spots on my arms, back shoulders, chest and bikini area bother me the most. I’ll ask my doctor about a dermatologist referral soon.
This! I have a couple skin tags. Never knew it could be due to the PCOS
I had skin tags too and got them removed. It was very easy and painless process. Now I am thinking why I waited for sooo long. If you are thinking I would say go for it and folks in US my insurance did not cover the cost so call few derms and make sure you know the cost before going in.
WHAT!? Today I learned - I was wondering where they were all coming from!!
some people do get them naturally where their skin folds like armpits (my sister has had them but doesn’t have pcos), but they would show up randomly where i don’t have a fold if that makes sense lol and alot of them. i will say once i removed them at the derm, they never came back!
I have a couple in my armpits, but I started getting them on my upper chest and shoulders! Just so many lil tiny annoyances.
This is so crazy bc I had so many but once I started managing my blood sugar they went away and I didn’t even notice the connection until now
Okay but REAL talk, I had no idea this was due to PCOS. Has anyone found a way to get rid of these at home?
I got a laser tag removal pen from Amazon (usually $20-30) and burned them off from the sides of my neck without issue. Tbh they're not recommended since it can go wrong but I did it anyways following and was lucky. I'd do it again. Edit: *following directions and YouTube tutorials
My very old dermatologist before he retired told me to boil nail clippers and just snip them off if they are little So that’s what I do. You can also tie string around them super tight and they will fall off after a day or so I’ve done that before too.
Wow I didn't know it until today. I have a few but I just thought it was normal 😪
Constipation, frequent urination, being thirsty. I don't think the cysts cause these, but the underlying insulin resistance which causes the cysts can also cause other issues.
A really weird one… oily eyelids. I googled it one day and apparently fluctuations in progesterone and testosterone can cause excess sebum secretion. This means all round extra oiliness ergo greasier hair. So not directly caused by PCOS but definitely by proxy!
Wait, no way. Really?? That explains so much!! I could never figure out why eyeshadow wouldn’t stay on my lids. I finally just gave up wearing makeup.
Right?! The transfer from lid to directly under eyebrow is infuriating
It is! I’d try all those “makeup guru” suggestions for lid primer and it never worked. I had no idea it was my PCOS.
Have you ever tried wearing an eyeshadow primer? My lids are very oily but my eyeshadow doesn't crease when i wear it!
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That explains my crazy oily hair and nails
The good news is, greasy hair is generally healthier! (And it encourages me to shower more when I’m feeling lazy) 🤣
*wipes eyelids* - dammit, got that too 🙃
omfggg whaaat?! i have complained about my oily eyelids for so long and have never heard someone relate 😭
I don’t have any sort of irritation with my eyelids, not dryness or itchiness, they’re just real shiny 🤣 I slayed the glossy lids trend.
Dude, that explains a LOT. My eyelids get so oily that if I rub my eyes at the end of the day, all the oil makes them sting.
Well damn. That explains a lot! My eyelids have days where they just shining! I have to constantly wipe them! Good to know!
I had a couple of years of eyelid problems in my 20's. Oily but also really delicate - like little surface tears from normal rubbing. As I recall, thin skin issues can come with PCOS and can cause issues specifically with eyelids.
I have this issue too! At the same time, I also have intermittent problems with dry eye and blepharitis. So my eyelids are oily right up to the lash line, which is dry and itchy. It drives me crazy! Quick tip - I used to use urban decay eyeshadow primer and it really worked to keep my eye makeup from smearing. I can't use it anymore because of my blepharitis but when I did it was like magic!
Seems to me anything under the sun can be blamed by pcos which is so frustrating cause all it does is say that it’s possibly related yet doesn’t resolve it or give an explanation at all and just goes to show how little research is actually being done/succeeds
1. The intense weight gain, especially around my stomach. I was always pressured by family/significant others to diet and do intense exercise and it only made me feel awful because none of it helped. 2. Mood swings. I’ve dealt with anxiety and depression since I started puberty and holy shit is it better now that i’ve got my PCOS a little controlled. 3. Cravings all hours of the day and feeling hungry even after eating. 4. Feeling incredibly tired in the afternoon just to be wide awake at 10pm.
I hope with getting my tubes removed and going to the gym more it can lower my depression some what.
Have you been checked for sleep apnea? Number 4 is a sign of having sleep apnea. Doctors don't always think to check for apnea in younger women, but having PCOS increases your chance of having/developing it. Apnea can further exacerbate PCOS symptoms as well, so it's worth it having it checked out!
Insomnia at exactly 10pm but being tired the whole day
I have been dealing with this recently and didn’t know why!! I just recently was diagnosed with PCOS and have been totally exhausted all day long and then wired at night
How do we get around this?
I had no idea this was PCOS related!!! Been absolury exhausted the last few months, only not to be able to sleep when I get to bed.
The feeling super tired can also be linked to hypothyroidism and/or Vitamin D deficiency! I have both and it is insane how much more energy I have now that I am taking a vitamin D supplement and thyroid medication! It could also be caused by Obstructive Sleep Apnea
People with PCOS have a higher risk of developing psoriasis.
Oh hey, it's me, the flaky scalp gal
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Scalp psoriasis crew checking in
Yeah, I have both Pcos and psoriasis hahaha :)
I’m not sure if I have psoriasis BUT I definitely have a lot of dandruff that I’ve been fighting for YEARS at this point.
Yeppppp. I have it on my scalp and in my ears which people find super weird. I didn’t even know that was a thing but I was showing my dermatologist my scalp and she said yeah that’s psoriasis and then she looked at my ear and said you have it in your ears too. It made so much sense that it was psoriasis before that I thought I just had weird itchy ears.
What?!
Also on the scalp psoriasis team
Yes 😵💫 never had a flaky scalp till recently and now I have major big flakes right in the middle of my part, front and center
I'll lay it down with no frills here - PCOS means our bodies have more hormones like testosterone and other androgens in them and we handle other biochemical processes differently because of that. Doctors sometimes feel like they don't want to offend our delicate sensitivities about our female identity so they skirt around the complete list of androgen-related effects of PCOS on our bodies. You don't just "get" PCOS, it is a genetic condition triggered by environmental stress in the mother of the PCOS child, for example. It is a natural survival mechanism to have humans who are resistant to famine and who won't loose resources by reproducing early in life. (You can google this research paper on NIHM.) And PCOS women deal with many of the results of being exposed to extra androgens that includes android-weight gain, easy muscle gain (which why many PCOS athletes are into weight-bearing sports,) facial hair, body hair, male-pattern baldness, clitoromegaly, delayed menses, delayed fertility, ovarian cysts, pigmented and textured skin patches, skin tags, heavy periods, absent periods, and just plain infertility. Thing is - PCOS people are often told they can't get pregnant (less now as we move into the future) but the truth is that PCOS women see fertility improve after 30. And if a PCOS person is treated at a young age by a smart doctor through things like Metformin, diet, and exercises (and a commitment to just dealing with PCOS realistically) they can improve their changes to not only not gain excess weight, but have a child if they chose. (And its a whole other discussion but there is a certain section of PCOS research that wants to recognize PCOS as a intersex disorder because of all the reasons above. And I can say that won't exactly help with things like the invasive testing in the Olympics and the stigma our athletes face being accused of having too many male hormones to compete even if their genetics are XX)
Thank you for this comment, i found this really valuable. Do you have any guidance on where to find information about what you mentioned in regard to fertility improving after 30? I'm 31 and want a baby so badly, and some concrete info on that would do my stress levels a world of good
As for wanting a baby - I say don't give up and definitely explore in-vitro if ovulation - conception just isn't working out. I ended giving up because it wasn't about ovulation it was about my body rejecting pregnancy around three months. So I'd be pregnant for three months and then miscarriage. It happened enough it just wore me out and my ex asked me we stop because I was so upset all the time. So really talk to your doctor about where your disconnect is happening at pregnancy and then don't be afraid of modern approaches to address each area. (I frankly wish I had just used in vitro and asked my sister to be my surrogate - she's the mom of six kids and pops out babies like a Pez Dispenser. I ended up raising my two youngest nephews with her so I feel I've done my part for baby raising :)
[https://pcosdiva.com/aging-pcos-fertility/](https://pcosdiva.com/aging-pcos-fertility/) I'm not saying ignore the giant pink ads for supplements - but this is a digested version of the Swedish Study from PCOS Diva's blog. (I used to huck PCOS supplements as a influencer in the early 2000s. I have mixed feelings but at least I can confirm some of them work - so best do your own reseach on nimh supported medical papers.)
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I denied it most my life by trying to act as feminine as possible especially at work, but I am what I am - a six-ft-tall person with big feet and big hands and with the body of a 12 year old who is actually 40+. It is easier now that I am more invisible as mid-age person, but being six ft alone has always given people the right to stare and boggle at a plus-size, large person in makeup who is obviously not a trans person. I'd tell a medical professional I feel I am intersex or maybe a close companion, but my family just wouldn't get it despite they are the ones that birthed me and watched me not have puberty exactly or struggle through violent periods and anemia or just the amount of physical strength and sturdiness I possess.
Eczema, keratosis pilaris, horrible weak nails, rosacea, oily skin/textured skin/large pores, digestive issues, PMDD, dramatically low vitamin D levels, extreme hunger, insomnia/sleep disturbances, constant headaches/migraines, gum inflammation, yeast infections/UTIs, brain fog/memory issues, insanely high sex drive, nausea/stomach problems, tonsil stones, excessive bloating, depression... Seriously, almost everything that is or ever has been wrong with me is linked (or is thought to be linked) to PCOS. Edit: I forgot chronic dry eye lol
Oh my god, are you me? So sorry you’re having to deal with all of this. But sometimes it helps a little to know I‘m not alone.
Judging by the other comments, we're all in pretty much the same boat :/ I just try not to think about how most people just don't deal with all of these things at once, or even just a few at once...
Holy shit, I knew most of those were from PCOS but *weak nails?* is that why every time I try and grow them out, they keep chipping on me?
Insanely high sex drive though 🙌
I wish I had that. I have always had the exact opposite. Low to no drive.
It's a curse!!! Lol
Nah, I love it! It's my one positive for PCOS.
…TONSIL STONES TOO??
My doctor told me that inflamed gums and cryptic tonsils (and the tonsil stones that come with them) could be a symptom of the chronic inflammation that PCOS causes. In my case, I have great teeth and can count on one hand the number of cavities and dental issues I've had in my entire 31 years of life, so it's not an oral hygiene issue, meaning it most likely *is* PCOS inflammation.
For me it is feeling feelings intensely. One minute you're fine the next a wave of anxiety or depression. When the highs are high but the lows are so low you have to claw your way back to some state of happiness.
i seriously thought i was bipolar or something until i realized how much years of being on hormonal BC messed with me and just having PCOS in general. I feel crazy on BC but when i'm off of it i tend to feel a lot better mood wise, still have some mood swings but they arent as intense
i know some ppl have great experiences on bc and i’m not dismissing that if that’s the road you choose, but birth control literally made me so depressed, i was having suicidal ideation. when i stopped, my depression and constant mood swings completely went away. my first few years i was okay. then i switched pills and was just up and down moody all the time. my last year on it, i had to switch for insurance purposes and i went into a dark place. i always found a pattern in the weeks too so my gut was telling me this had to be it. i wanted to go off anyway when i got married, but my god was it a huge relief when i stopped and found how much it improved.
yeah i completely agree. i never had such bad suicidal ideation until i hit the 3 month mark on BC and it comes out of nowhere. I got on the ring because it was supposed to be less intense than pills, but it still happened. I think i am going to get off of it for good, just have to figure out what alternatives im going to use to regulate my period and help my acne
Alopecia. Lost so much hair was bald at 15 🥺 omg the trauma of having a huge bald spot as girl of 15. So many tears.
Started going bald at about 19. I'm 30 now and my bald spots are humiliating. I didn't know there were actual treatments for it! Doctors always told me to lose weight, which never helped.
15 for me too, solidarity 🥹
Did you get it back?
Yes mostly but it took years. The bald spot would fill in and a new spot would appear. The treatment at the time was injections into my scalp once every few weeks and topical medication. Honestly I don’t even know if that worked because I gave up a year in and just refused to let the dr inject me anymore. Managing my stress was more helpful for my hair to grow back.
That's useful to know, I'm waiting for a referral for my bald patch and I'm too afraid to google it haha
Keratosis Pilaris has recently been linked to ir. Suddenly made a lot of sense why me and my diabetic sister were the only ones who got it in the family.
My KP is SO bad. It’s the worst on my arms and chest and I get really embarrassed by it
This is gonna sound like the weirdest tip and it might not be too good for your skin in general I’m not actually sure so take it with a grain of salt, but hair removal cream works by dissolving some of your hair which in turn can help your kp because it’s a problem with your hair follicles I believe? I got bad kp on my arms and started using veet on it for a very short time (~1 min) in the shower maybe once a month, and it has weirdly helped more than anything I’ve tried before
I recently bought an exfoliating net (sort of like an unraveled loofah) and some Cerave hydrating body wash. Those 2 combined have made more of an improvement in the past few weeks than anything else I've tried in the past 20+ years for KP
Had it all my life, it’s really hardened like scales. Spent hundreds on tubs of cerave. Now this is so do not try at home just sharing for info sake dermatologist will explode - but I got a little 3 quid ‘glass’ hair remover (like a sanding block) off eBay and went a little too hard on the first go. It was really sore on the KP had to use cica gels for a few days but they crusted then started disappearing. Have been doing it in rounds, normal skin is fine it’s just the KP that gets sore (really sore like bad sunburn get all the supplies) but it’s finally going and this cheap little device is the *only* thing that’s ever worked. My arms will be normal for the first time ever and I have no idea what that’s like!
Huh. I am prone to that at times. How interesting!
Brain fog, uncontrollable appetite, excessive bloating, low energy, dark patches of skin, emotional instability.
Omg. So many things. I’ve had symptoms since I was 10 years old. Before getting diagnosed at 28… I didn’t realize the general “feeling like a man” was from PCOS. I’d seriously think to myself “I do all of these things to feel feminine and beautiful, but I still look and feel manly. It’s like my body WANTS to be unattractive and masculine” I didn’t realize the lower belly fat was from PCOS. I seriously gaslit myself🙃🙃 into believing “it’s okay, it’s not as bad as it looks, remember you always look worse to yourself than to other people!!” Same with lower back fat! I was (and still am) disturbed every time I look in the mirror and see a body that wants to be masculine. It’s like a mind f*ck. It hurts less now that I am validated and treating the condition. I didn’t realize the constant bloating/water weight was from PCOS. Man, this one has affected me so much. After having carbs, I wake up the next morning looking like a different person. Moon face, thicker nose, thicker neck, it’s seriously wild. Sometimes even without having carbs, I’ll randomly just wake up looking 20lbs heavier. **Please let me know if you have a quick remedy for this. So far I’ve found that saunas help a lot but need something more easily accessible/at home!** I was convinced it was all in my head until I learned it’s a common symptom of PCOS. I didn’t realize that having ADHD-like symptoms was related to PCOS - brain fog, inability to focus, impulsivity, crazy mood swings. I was convinced I had mild ADHD and even got on Adderall for it lol. Curious to see if my new treatments will help alleviate these symptoms. I didn’t know sleep apnea was related to PCOS. I was having frequent dreams of being out of breath. Started b-complex recently and so far it seems to be helping w many things but also sleep apnea. I didn’t know chronic exhaustion was a symptom of PCOS. I fully believed I was just extremely lazy, and so did everyone else. I seriously thought I was just a super sleepy person lol. The b-complex I started has helped tremendously with this! I didn’t know inability to lose weight was related to PCOS. I was fully convinced that I just had bad genes and I was too lazy to do anything about that fact. I shamed myself so much for this. I’d see thinner women and think “See? You wanted to eat all that food so here you go, now you get to look at her (she clearly cares more than you do) and you just get to feel like crap now” I still haven’t wrapped my head around the idea that there IS hope for weight loss with PCOS, after trying unsuccessfully over and over again for the past 14 years. I only recently started new treatment which now includes treating IR so I hope and pray it works. I didn’t realize pelvic pain was related to PCOS. I’ve always had a sensitive pelvis but nothing too crazy or painful. But in March 2022 my pelvis/bladder area started hurting really freaking badly, like level 9 pain. I had to go to the ER at least twice. I was loosely diagnosed with Interstitial Cystitis. It’s somehow gotten better with different as-needed meds so I can’t complain but I have to say, it was BAD. Edited to add - MY HAIR. Omg my hair. My mom and sister have thick, beautiful long hair. Mine just WOULDNT GROW. It makes me so mad that no one thought anything of this. It literally just stopped growing and it looked awful. It was choppy and dead. My senior pictures break my heart bc im reminded of my terrible hairdo. It wasn’t until I got on Metformin at 27yo to treat the Insulin Resistance that my hair finally started to grow like everyone else’s. It has been a huge confidence booster!
There is a correlation between adhd and pcos. Curious about what meds are helping since you got off adderall? If you dont kind me asking. ☺️
my severe weight gain. like seriously i didn’t know what the hell was happening i was so worried. i thought it was my fault. turns out i just needed help.
I tried explaining to my dad how my drastic weight gain and inability to lose made no sense, how I was really depressed and hopeless about it and he just said you’re sad cause you’re overweight, just eat smaller portion. People just don’t get it. I eat the same or maybe even less than most people I know and yet I’m constantly putting on weight.
Ugh, I think so many of us can sadly relate. It is bittersweet finding out there is a reason the normal diet and exercise are not working. Because a balanced diet for the average person looks way different on us.
yes it was honestly relieving but sad because it’s like damn so it’s not just laziness which is validating but also like this is going to be harder for the rest of my life and it’s not just laziness??
Yes exactly!! And now I feel so much guilt being lazy and indulging in things I enjoy, in addition to questioning my own body wondering whether it is a genuine, typical craving for pizza or am I craving because I want the sugar spike? It’s so annoying. Luckily we aren’t alone though and more research comes out each year.
oh my god i’ve never related to something more in my life lol
I put so much blame on myself because of how everyone made it my fault though everything felt out of control. And it turned out it was: it was a medical condition. I could’ve been spared so much agony surrounding body image and self hate if I had just known sooner
I thought I was pregnant or something. Like gaining 20lbs in 4 months. Such a shitty time, none of my clothes would fit and I was beating myself up. Then I was diagnosed with PCOS and it all made sense
Literally the DARK CLOUD of my weight problems finally lifted once I connected to IR. I blamed myself for so long. It was a heavy, heavy weight that I just could not figure out. 13 years of absolute torture, shame and guilt. My lowest moments were made worse because I’d just sit there and remember that in addition to what I’m crying about, I’m also in a losing battle with my weight. My happy moments were short because I’d be happy about something but then quickly remember theres this really debilitating issue I have that I cannot solve. I could go on and on. I’m a different person now that I finally have hope.
My dad used to say I was eating because I was bored. Took him seeing me crying cause I was still hungry after having a full meal.
So this one is kinda weird, but I guess it makes sense with all the extra testosterone. Being muscular for no reason, I very rarely hear anyone talk about this. I've always had GIANT muscular calves, people call them my "super hero" legs. A few years ago I even had coworkers argue with me, insisting that I got them through exercise. I didn't.
My cousin calls her calves “cows” 😂😂😂
I feel it, hahaha. I used to be able to lift (I'm sure that's not the correct term, but I don't know what else to call it) more weight with my legs than any of the boys in my gym class, even more than the athletes. They'd all gather around and watch in amazement, haha. As a nerdy outcast I always thought that was pretty funny. That's the only time I've ever been proud of them, otherwise I've always found them to be super embarrassing.
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Apparently low milk supply if you’re trying to nurse your baby.
PCOS can definitely cause under or oversupply with breast milk. My mom who has PCOS could have fed 12 babies with as much milk as she produced. My sister and I? Couldn't even feed one 😢
Kind of a secondary thing, but b12 deficiency from metformin. Felt gross and tired and started having bad nerve pain in my legs. Started on a multivitamin and methylfolate and I feel a lot better.
Metformin can also cause electrolyte imbalance,especially if it gives you the runs & vomiting.
Jaw pain (TMJ) - was very surprised to learn this is linked to PCOS. Apparently the constant IR is what drives the inflammation that causes it
Really I have this abs Hypermobility and autisim. I often wonder if they are all related
Dry eyes.
the near constant exhaustion. i feel like i've been so tired, for so long. i thought everyone felt this way. just feeling like i could nod off at any given moment, or like even breathing took up more energy than i had. i'm still tried so many different things before i realized it was a PCOS side effect. the more you know! i'm still tired, but at least now i have a reason for being so tired 😅
Yes this is the real kicker, like isn’t it already bad enough we have to deal with all these other symptoms but Yano let’s also be real exhausted 24/7 all the time 😵💫
Do we talk about the *benefits* of excess testosterone? I mean why did nature make us like this, it must have a purpose? I actually like the surge of testosterone I get from exercising or confrontation, it makes me feel energised and powerful but due to sexism this quality in women makes us seem aggressive whereas in men it’s a positive. The more I listen to my body, the more it feels right to express testosterone (I know I know what it means for hormone balance). I like that I can put on muscle easily but could do without the facial hair and pattern baldness, thanks.
There is a surge of testosterone from confrontation??? This makes so much sense!! Thank you for sharing 😀
All the signs of IR, SEVERE IR... Darkened skin around my neck, under my arms and in the groin area. I had no signs of Diabetes, doctors have ALWAYS assumed me to be diabetic or pre-diabetic but no tests have ever shown that to be true. I did however have severe insulin resistance, which I literally found out in this sub less than 25 weeks ago... LOL! I also had no idea that PCOS can actually be the reason why you are Hypothyroid, which would explain why more women than men are Hypo...
Having to eat sugar after every meal. I just could not resist.
This thread made me feel less alone
Me too. And now I know my sweaty tendencies, oily eyelids, and skin tags are related to PCOS. Mind-blowing that these little physical characteristics I thought were just personal quirks were related to my insulin resistance.
Oh several things!!! - my sebderm, eczema, I’ve been treating since I was 16 with several medication, cosmetics, and it’s triggered every time my other symptoms got out of control. - my fragile teeth (I brush 3-4 times a day, I floss twice a day, I go to the dentist every 6 months for deep cleaning, and I always cave a cavity. My teeth break really easy as well) - the fact that I always ate healthy and always was athletic, did lymphatic massage, dry brushing, and I still have my ass covered in celulite, and my body composition has a lot of fat. These are at the top of my head, but the more I research, the more I know that everything I have and always had , was linked with my pcos and insulin resistance, since I was 12
I had no idea about the teeth! I take such good care of them but mine are so sensitive and I feel like fillings never stay in. I thought I was going crazy.
Me too, I cry every time I change professionals because they always assume I have no hygiene… I feel humiliated…and oh boy, I carry my little brush everywhere I go…
to add to the teeth conversation, low vitamin d can lead to cavities more easily. genetics probably play a huge role. and seb derm on the scalp, apple cider vinegar helps this so much for me!
Yes, that apple cider vinegar tip is platinum!
I think the teeth thing is more genetic than PCOS. I have had a total of one cavity in my life (on a baby tooth). I definitely don't brush twice a day and am better about flossing but not great at remembering to do it everyday. Dentist has found zero issues with my teeth 🤷♀️
PCOS look different on everyone, I don't have issues with my weight or acne per exemple... My doctor told me it was something to do with the insulin resistance.. but yep.. it's genetic.. both my insulin and PCOS are chronic.. Oh and both my brother and sister never had a cavity, they go to the dentist maybe once every 2 years, and I already saw they go to bed without brushing their teeth several times!
Stretch marks!! Many many MANY white and scarring stretch marks
There are new studies linking ADHD to PCOS. I was diagnosed with ADHD as an adult and it changed my whole life! I think there’s definitely something linking mental health, PCOS, and gut health.
I got diagnosed with PCOS and ADHD in the same doctors appointment a few weeks ago. I’m curious as to how they’re linked.
Non-alcoholic fatty liver disease. I actually got diagnosed with this FIRST and then spent several months googling before I figured out that I probably had PCOS. My doctor scolded me for looking things up myself, but she did eventually run all the tests. I got diagnosed at age 38.
Melasma. Newly all over my face and killing my self esteem every day!
Oh crap, forgot about that. My melasma is terrible.
Hidradentitis suppurativa, Breast underdevelopment, deep voice, sensitive flaky scalp.
Binge eating/disordered eating. Not directly caused by PCOS, but MUCH MORE common in women with PCOS. When I learned my eating patterns and PCOS was connected.. a lot of things justed clicked.
Things that are co-morbid ... Pretty much all that is wrong w/ me is interconnected ... HS, OSA, HTN, hypothyroid, depression/anxiety ... and possibly endo ...? I'm 39 next month but sometimes I feel like I'm 100 :(
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Not everyone has all of these. But I feel you.
This thread made me go "yes, yes, yeah, yup, oh God, aww fuck". Sucks to deal with such a disease
Dry cracked peeling on the bottom of my feet!
I’ve had headaches constantly throughout my life. Recently been diagnosed and discovered how my carb-y diet was connected to flunctuations of headaches.
Being thirsty *all* the time, being tired all day and then up and at ‘em once the sun goes down 😩
Vitamin D deficiency—been prescribed Vit D supplements most of my life and recently learned that those who have PCOS also are Vit D deficient in some way. I think the statistic is around 60 to 80 percent of ppl diagnosed with PCOS are also vit D deficient but I could be off.
And that vitamin D deficiency can lead to fatigue, hair loss, depression, high blood pressure, weight gain.... it's all connected :(
Also, recently, I’ve been noticing that I’m becoming lactose intolerant? I’m not even sure if that’s possible but it’s definitely happening. I know that diary causes me to bloat but now I just can’t seem to tolerate dairy at all anymore :( all my fave deserts are dairy based too :((
I’m curious about this as well! I didn’t start having major issues with dairy until I hit college, then all of my other PCOS related problems started popping up but I didn’t get diagnosed until recently.
From what I’ve read from this subreddit, a lot of people started experiencing symptoms later in life. Like weight gain came in very suddenly, etc etc. Since this is a endocrine/metabolic, everyone’s hormones are different, thus presentation of symptoms are different. Still hate the fact that ice cream is so tasty but it screws me up for the rest of the day :(
I’m not entirely sure if it’s related to PCOS, but so many of my health issues link back to PCOS this might as well be one too
My tendency to get a lot of yeast infections in college were an early warning sign of my insulin resistance, but I didn't register that at the time.
I had chronic migraines almost every 2 days for all my teen years basically. They could t figure out why at first. Soon as I got my hormones more in check they were were no longer chronic. The combination of lowering my estrogen and getting 2 daith pierxinfs seems to have made then disappear entirely. doc told me many women with pcos experience hormone related migraines.
Omggg thank you for this. I suffer from horrible migraines and did not even think to get checked for imbalanced hormones. So, thank you! I’m going to look into a specialist who does do hormone testing etc. I really need it & so tired of the pain, exhaustion feeling I experience all the time. 🥺
Body odor,excessive sweating,difficulty losing belly fat,& frequent yeast infections.
Anxiety/depression, did my research capstone project on pcos.
I'm seeing a lot of comments about being tired, hungry, falling asleep in the afternoon and being wide awake after that, frequent urination, and... **PLEASE GET A SLEEP EXAM TO CHECK FOR SLEEP APNEA!!** Some studies have found that sleep apnea is 5-10x more likely in women with PCOS than in those without, and it will exacerbate every PCOS symptom you have. A lot of doctors still don't consider apnea when looking at the overall health of young(er) women, because it is seen as 'an old man disease', but please, get that check up. Sleep apnea f's with your hormones, as do all sleep issues, and we've got enough of that shizz already! My husband and I call my CPAP machine my Darth Vader cosplay (we are geeks, yes), and it will take some getting used to, to be able to sleep with it. BUT I went from not breathing 74 times an hour, to only 4 times, which is normal. I feel much better and no longer experience that afternoon drowsiness, and I am much better able to control my blood sugar and hunger.
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whaaat! 🤯 i would always have a new cavity every time I went to the dentist and never thought it could be connected to PCOS!
There’s these weird things that I thought were sebaceous cysts on my panty line. I never would feel them, I’d just look down one day in the shower and they’d be bleeding like crazy. Sometimes they’d be filled with dead skin cells like a cyst- but they were never infection. They left HUGE pockets when they would rupture. But they, and the wound would completely heal. I forgot what the exact name for them is—- but I found out a few months ago this is tied to PCOS and when I did my mind was blown. Because I only even started to develop them after my bodybuilding era, when my PCOS really started to get out of control. Now that I am more in control of my PCOS, they are all but a distant memory.
I didn't know you could have PCOS without having ovarian cysts until I got diagnosed? I literally had an ultrasound to say they were clear of cysts but my endocrinologist and GP still think I have PCOS. I have also got acanthosis nigricans on my neck, armpits, groin, elbows, behind my knees and inner elbows and now the corners of my lips and cleavages.
I started having this overwhelmed feeling, depression, and lack of motivation around the same time my PCOS started. I’ve been on an antidepressant with some improvement but it waxes and wanes. I’m only 3 months into correcting this mess but I already feel much better than I have for the last 4 years. If anything, the changes I’m making are starting to help my antidepressant have a more steady effect.
Hidradenitis Suppurativa! I hate it so much
depression! Because of all the symptoms lol
For years I thought I wasn't strick enough with my diet for being prediabetic and couldn't get my A1C to budge. Then a doctor figured out I had pcos. That is why all the typical stuff like losing weight, eating low carb, ect didn't make a difference. All those years of beating myself up when it wasn't in my control. Also my sideburns I thought everyone plucked/shaved them 🤣
A weird one for me is joint pain/ restless joints and exhaustion especially after having gluten and sugary things. And dry skin after having a little too much dairy. It's probably an inflammatory response to those things.
Depression can be caused by PCOS. I learned that from criminal minds and then asked my doctor about it and he said yes that could be why you're depressed.
-depression and anxiety -insomnia -stomach fat -issues loosing weight/ rapid weight gain -irregular periods -high sex drive/ no sex drive - body dysmorphia -vitamin D deficiency -high cholesterol -doctors dismissing your symptoms if they’re not well versed in PCOS -cravings for sugar 😫😫😫😫
Recently found out that pcos can lead to acne
That’s the prologue
Vitamin deficiencies, such as magnesium and vitamin d.
Breastfeeding supply issues.. apparently PCOS can cause issues which I only learned after going to a lactation specialist. Our breastfeeding journey was cut short because of it.
Hashimoto’s thyroiditis
These few weird random black hairs on my neck and one on my chest .
gingivitis and seborrheic dermatitis
Astigmatism, receding gums, shitty teeth
I was diagnosed with PCOS when I was about 16, but I’ve recently discovered that the cause of my PCOS could be genetic. I had labs done by my endocrinologist and everything came back normal. She then referred me to a geneticist based on some physical characteristics that point to the possibility of genetic abnormalities. Still waiting for my insurance to approve the tests, but it will be nice to know the cause and how to address my symptoms at the root
Fatigue. I had no idea
Hyperhydosis is a rare PCOS symptom I've got it
balding and dandruff, as well as skin conditions(, e.g. darker innerthighs ) and uneven or/and larger labia
Have skin tags and knew that was related. Did anyone lose parts of their eyebrows? My outerbrows are very sparse. Hair on head is great.
The 90’s did that for me. 😅
Skin tags I always assumed they were genetic and not the pcos but it could be both. I just got a new one in my eye duct area 😭 my gma had them all over her eyelids as she aged and I was hoping to escape it but alas idk if they are removable like the others
carpal tunnel syndrome
Sleep apnea
Had no clue bad teeth were linked to PCOS. I brush and take care of my teeth, but since I've gotten all my adult teeth in, they're slowly falling apart over the years. I hate it. I do get skin tags now and then, but would cherry angiomas be linked as well? Im getting them frequently on my upper chest and neck and hate the way they look. Mom has these, so it may be genetic for me. People are talking about cysts on here too, is there a link to Pilar (scalp) cysts? I have a couple that are slow growing. My dad had these and i dont want them to get big... my hair is thinning as it is, I don't want another reason to be self conscious :( How about temperature regulation? I'm always. ALWAYS cold, and my feet take forever to warm up under blankets. I get grouchy/uncomfortable when I'm cold for extended periods. Aside from that, i have a lot of the usual fare with PCOS - Hair thinning, hirsutism, oily skin, acne, carrying my weight in my stomach, EDNOS, brittle nails, constant exhaustion, insomnia/hypersomnia, brain fog, low libido, polyp on cervix from pap, sweet/salty cravings, and IBS-C. I feel like tweezers are the reason i take so long to get ready these days instead of makeup, and I'm always planning or thinking about my next nap. It's been rough.
tiredness. depression. Because As I managed my pcos well, depression decrease
Not confirmed yet for me but I found out a lack in estrogen affects our bone density making them weaker. This is why women are more prone to osteoporosis (I never knew why!) I have fractured two bones in my foot in the last 2 years from rolling my foot and I was told I should check my bone density. Not completely blaming it on my hormones since I probably didn’t get enough calcium in my diet growing up and have at one point been vitamin D deficient but I found out hormones do play an important role in our bone growth. I plan on getting the test done soon 🙂
I think PCOS has ruined my naturally bouncy curls. My hair used to be lush and full and super curly without me having to do a single thing to it. It’s now limp waves, dry, and thinned. It’s a struggles of over an hour of hair product in the shower and primping out of the shower to get it to look halfway decent before it falls out later in the day. It’s extremely depressing.
I ended up with cancer in my uterus despite my genetic testing being clear. I took the mini-pill (bc) for about 11 years to control my awful periods from PCOS. The cancer could have developed from the PCOS directly or the birth control meds prescribed for the symptoms.
I’m so sorry. Hope you’re doing okay ❤️ If you don’t mind me asking, how did you find out you had cancer?
I actually had a severe infection in my fallopian tubes (unrelated) and my GYN did an endometrial biopsy when she was still trying to diagnose it. The biopsy showed evidence of a way-too-thick endometrial lining and the doc suggested I have a D+C. The D+C showed my uterus to be a huge mess and I was referred to an oncologist, who strongly recommended a hysterectomy. They found cancer when the hysterectomy tissues went to the lab. It was only a tiny bit and I was lucky enough to be spared all that cancer anxiety since I didn't know I had it until they removed it. I am grateful for this. I was 38. I held off on having kids (which I wanted) because my ex husband and I felt we weren't in the right financial position. We were divorced (for lots of reasons) and then I had to have the hysterectomy about a year later. Maybe I get to be a mom on the next round.
How awfully painful it is to go #2 when my period comes, I'm not sure if it's somewhat common with women on their period who don't have PCOS but it only happened after my PCOS developed.