I have Polycystic Ovarian Syndrome (PCOS), let's talk about it.

[@emilymontague8550]

Totally bloody agree that more doctors should ask what the patient's priorities are, what's bothering them most, and what they want out of their medical care.

[@asterismos5451]

Epileptic here, and yeah, completely agree. I'm having to deal now with being constantly sleepy during the day because of some medication I'm on and when I brought that up with my neurologist to see about changing to something different he dismissed my symptoms saying he'd never heard of that happening on this medication and I shouldn't change meds since these were effectively controlling my seizures. The last one is a fair point but I have seizures triggered by bad sleep and this is causing me bad sleep so I don't know that it's really going to be too effective long-term. I also made it clear that I was aware of the risk of switching meds but still thought it was worth it since I'm sort of unable to function normally like this and it's very unpleasant and I can't continue this way. And then recently I had an appointment with a sleep doctor who turned out to also be a neurologist working in epilepsy and she said it was uncommon but she had heard of this happening on these meds and it was well-documented as a side effect etc. and basically she validated everything my doctor had dismissed and without me even bringing it up she recommended I switch to something else. So that was lovely and I now need to ask my og neurologist to take me seriously. (I know he can be persuaded eventually thank god since he gave me meds that he thought weren't good to prescribe to someone who could potentially get pregnant. Another thing that was an example of a doctor not taking the patient's priorities into account. He was avoiding giving me the medication most likely to be effective on the off chance that I get pregnant despite my adamant request that he not do that since I am never going to get pregnant much less stay that way. Anyway doctors should only prioritize potential fetuses if the patient acknowledges this is something they would like too. I get that it is super important for a fetus that will come to term to be safe right from the start of a pregnancy and many people don't know when they get pregnant that this will happen, but it should be a choice they make, not one that's already made automatically based on their sex. And the health of the patient should ALWAYS come before the health of a potential fetus.)

[@rhea933]

@@asterismos5451 Thank you for sharing this story. It really emphasised for me the need to advocate for yourself in a medical situation.

[@asterismos5451]

@Rara Si That's a diet designed for children with epilepsy and I am an adult. I am also prone to develop an eating disorder if I have to think about my diet too much plus I fucking love cake so no thank you. I'll stick to the more medically sound stuff my doctor actually advises me.

[@asterismos5451]

@@rhea933 Happy ending because I was just given a new prescription after meeting with my neurologist again! Took a while but I'm so glad it happened finally.

[@asterismos5451]

@Rara Si Thank you I absolutely will. Enjoy being sad and cakeless.

[@SamWest96]

Hearing your story about "healthy weight" reminded me of the only time I was a "healthy weight." I worked 60 hours a week and danced for maybe 20 of those. I lived off pringles and pizza, was depressed, was in an abusive relationship and barely slept. But, you know, healthy.

[@sjokkoladehjerte]

What's fucked about this is i've had actual to goddess pain centre physio and doctors expressing how jealous they were of me (while being so in so much pain I could not get enough food onboard to be healthy, like full on giving me the "so your heart don't explode on your way back to regular meals" treatment -i was well under 50kg- but while i was at their side of the hospital they just ignored all of that/acted like i had achieved something great or even remotely healthy weight loss) I have ACNES, witch seems to go together with PCOS or endometriosis a lot (from the groups i've joined), but yeah point being the parameters for "healthy weight" and how differently it's treated on the different sides that plainly just plain sucks!

[@SophieJHill]

Yes to this. Having being consistently told that losing weight would help my PCOS, I ended up with bulimia. I was told my organs were shutting down. I was terrified of eating fruit (?!?) and would eat one meal every other day. Yet my BMI never dropped below "healthy".

[@__-gn3tp]

You were a healthy bodyweight. Don't confuse it with other aspects of your life. If you just ate pringles and pizza you probably had a myriad nutritional deficiencies etc.

[@laurendieterich902]

I struggle with Endometriosis, and while it's not PCOS, I feel like they're siblings. Both are under researched, deal with periods, experience pain, weird societal norms, infertility, and gaslighting from doctors. I was in the dark for so long, it was a relief to be diagnosed after 4 years of gaslighting and wondering if I was 'just making it up'. Turns out, NO. Haha, thank you for sharing your experience, it really helps to bring out information and real life experiences. And also you sharing that it effects more than just cis women, as a gender queer person I really admire that ☺️

[@JoyandSerenity.]

I have just been diagnosed with Endo and told I have a 7cm cyst on my right ovary which is what causes my daily pain, I was even referred to Gynae to be sorted or something I guess, but my appointment is in a literal years time and I have just been left, again, by my doctors to fend for myself. I guess I will just wait :/

[@Sonadira]

Was just about to say an endometriosis sister over here loving this video and happy for the vibes from the comments.

[@spookyyjazz]

I have both, they’re definitely siblings 🥲 they’re super not talked about enough at all either, this video is so nice!

[@barefootpixie2809]

I have endo and pcos and I can say they are definitely closely related! A lot of my symptoms cross over each other, which is why I was just put as pcos for about 10 years because those symptoms can mask endo symptoms!

[@joanadamas7223]

Up

[@sarnea5331]

I have PCOS and was often told it meant I was infertile, it was something that I found really difficult to deal with and wasn't really given any support. Well here I am 30 weeks pregnant with a healthy little gal, so don't always take what doctors say as absolute truth about PCOS :)

[@fish-fingers_and_custard7685]

Congratulations!! Wishing you and your little one all the best :)

[@greenblue1959]

Same thing happened to me!

[@MsLivinglegend19]

Thank you for dispelling the myth! As long as you can regulate your periods and ovulate, conceiving shouldn’t be hard! Congrats on your daughter, hope you have a safe and healthy labour + baby xx

[@fuxiacaramella]

I'm 28 with pcos, currently on a diet (second time), been on the pill for 8 years...you know the drill. Well, thank you!I'm so worried about infertility!

[@Pipcation]

Congrats. Since I was diagnosed at 21yo I thought I wouldn't have children. I have a 2 yo boy and pregnant with my second. No meds, no nothing. So don't worry girls. It is not an infertility sentence💛

[@nimrodgrrrl]

This was brilliant, sensitively done, and I really appreciate the cozy atmosphere as a chronically ill babe myself.

[@leenanorms]

xxxx

[@rhon0x]

As a person who has PCOS (recently diagnosed !!) and someone who is a registered healthcare professional, I just want to try to promote the idea that YOU DO NOT NEED CYSTS ON YOUR OVARIES TO HAVE POLYCYSTIC OVARY SYNDROME Edit: snail trail and nipple hair sisters UNITE

[@autism_and_niamh]

This video was so relaxed and refreshing, loved it!! I also have PCOS and was put on Dianette aged 15. It cleared up my acne and hirsute face, and regulated my periods, but apparently it's such a 'strong' contraceptive that you're not supposed to be on it for more than 2 years? Well, I too stayed on it for 6 years and it was like night and day when I finally stopped. Beforehand, my mood swings were terrible and I never really felt awake, just as you described! Plus I'm convinced it affected my attraction to other people - I had little to no attraction to anybody whilst I was on it? (fairly unusual for adolescence) Then I came off Dianette and I felt like I was attracted to people everywhere! I find it pretty terrifying how teenagers can be placed on these super strong drugs just because doctors are like: woah she hairy!!! let's fix that!

[@leenanorms]

omg this is so validating to read! Especially about not feeling fully awake. Agreed, terrifying! But thank you for sharing, at least it's not just me!

[@autism_and_niamh]

@@leenanorms You’re very welcome lovely, I’m glad I could help you feel less alone!! Barely anyone I know has been on Dianette so thought I’d share my experience :)

[@MsLivinglegend19]

Dianette was horrible for me, massively worsened my mental health. PCOS can cause a lower sex drive so could be that!

[@nicks596]

Friendly pharmacist here- not heard of dianette being ‘stronger’, but all pills do contain different forms of estrogen and progesterone, which is which the side effects differ between brands. Mood swings and low libido are common adverse effects for all brands of hormonal based contraception unfortunately. A lot of contraception counselling is just finding a brand of OC to suit each person Defiantly more research into other viable contraceptive options is needed!

[@autism_and_niamh]

@@nicks596 Hey there, ah thank you for your wisdom :) How odd, maybe I thought it was 'stronger' because it was only recommended to be used for 2 years? In any case, I agree that more research into different options is definitely needed!

[@oliviamiller-davis4667]

I was diagnosed with PCOS a few months ago and was struggling with it mentally (worries about infertility etc) so I decided to join the Verity support group for my area (verity is a pcos charity). Only had one session so far, but it was so amazing to meet other people who I could relate to. The lady who ran the group enlightened me SO MUCH. she explained everything to me better than any doctor has. I was just put on metformin and left to it. Fun fact, they aren't even cysts! They're eggs that haven't been able to get through the fallopian tubes. Anyway she said people with PCOS aren't infertile, they're SUBfertile. I've also asked my doctor to be referred to an endocrinologist (not a gynecologist - they won't be able to tell you anything you don't already know about your pcos) so that appointment is in December.

[@caitie226]

That’s so great for you! Yes, PCOS cysts are just a normal thing in egg development that gets a little bit out of hand, and it quite different to all the other kinds of trouble-causing cysts. Good luck with everything!

[@ellimakesmusic]

Thank you for your comment 🖤

[@wendytuxworth965]

I found your discussion about gender near the end very interesting - I have PCOS and it's actually one of the ways I discovered that I'm non-binary! The gender euphoria of not having periods was unlike anything I'd experienced before. Thanks for this video, I learned a lot and definitely connected with it!

[@GwnMoon]

Do not have PCOS but stuck around to the end. Morbid fascination club unite! To all the people with PCOS: I hope the shit stuff gets easier to deal with, and that more people (especially in the medical field) will have greater understanding of the condition ❤

[@leenanorms]

hahha I wish Morbid Fascination Club was a real thing, that would be an amazing podcast. Thanks for watching and taking the time to understand stuff, you're a gem! x

[@angiekoutsiouroumpa799]

As a medical student, soon to become doctor, hearing about your experience with your GP and other doctors is fascinating to me. I believe there is a lot to learn simply by listening to patients and their experiences, not just listing the medical terms and “solving the problem”. What an eye opening perspective!

[@Gandellion]

I have seen several quite young doctors recently and you guys are amazing! I have experienced similar things with older doctors, but the newly qualified ones are so empathetic and caring and diligent, it’s fantastic. Go you, Angie!

[@ceryshancock9191]

This felt like a hug. I was diagnosed when I was 17 and given like 0 information from my GP. I just chucked on to the pill and told to loose weight. That really messed me up but now I feel a bit better about it (now 22). I just recently got a letter from my GP that they are changing the way they treat PCOS and I will have to do yearly blood tests- hopefully this will be a better experience!!

[@fromthefens]

Wanted to thank you for making this video, as a medical student it's really helpful to see such a balanced and in-depth view into a patient's perspective of a condition that is so often badly managed

[@jackiee7921]

Don’t have pcos, stuck around until the end. I do appreciate hearing about women with dark hair, since that’s a thing I naturally have. My leg hair has always been dark and I’ve got some facial hair. Being somewhere on the non-binary spectrum, I actually kinda like it but there’s a lot of shame from society for having “masculine” features (like I’ve had my hair been called disgusting).

[@9thgalaxy778]

I always struggled with this. I'm a cisgendered woman, and when I was younger I felt awful about my eyebrow hair in particular. I started getting them done and it was pretty painful at first, but it was a good decision for me and I'm glad I do it now. I do struggle with facial hair, but this video has helped me see that it's not super anti-feminist to shave it if I want.

[@Jodie_May92]

I cannot tell you how comforting it is to hear another cyster talk about how inappropriate they feel their “healthy weight” BMI range is. The only time I have ever been in my “healthy” range is when I was in boarder-line ED territory with my relationship with food, I was skeletal in appearance and even then I was in the upper end of that “healthy” range. I’m currently a UK size 14 and yet my BMI is over 30 - how?!? Thank you for this absolute gift of a video Leena ❤️

[@lilichong7941]

I’m not an expert but BMI was actually invented in the 1800s by, not a doctor, but a STATISTICIAN. And he based it all on..white men!! And it hasn’t really been updated since!! So you’re not alone. A lot of ethnically indigenous (so including mestizos in Latin America) are CONSTANTLY confronting this because OUR BODIES ARE DIFFERENT FROM WHITE MEN. ((: so keep doing what feels healthy for you.

[@ashleyrae9231]

Same here. I got close to a "healthy" BMI only by being on my feet for like 10 hours a day and eating one small meal a day that was essentially more of a snack. It's just not sustainable for very long.

[@amara560]

The only time I was on the upper end of my healthy BMI was when I was a teenager and US size 4-6. Oh and I still hadn't even developed breasts. BMI is such nonsense.

[@yulebones]

Appreciate your attempts to be gender neutral about it! I'm nonbinary and have lived with it since I was a teenager. I know a lot of trans guys and and nonbinary AFAB folks, and while I don't have official numbers on it, the incidence of PCOS among those groups seems really disproportionate. I don't know when we'll be able to get some studies on statistics, but I find the correlation really interesting.

[@gamewrit0058]

I'm six minutes in and you've already told me tons more than my doctors have over the last 20-plus years. Thank you. ❤️

[@sarahannekerley8681]

This is so timely. I was just unpacking the fact that I've not seen my actual full brows in 22 years, because I was bullied into plucking them at 9 years old. I'm letting my "eyebrow" grow out and really enjoying just having my face be my face. Thanks for the solidarity today!

[@charlottestephensonart]

I felt so in the dark about body hair as a teenager and the body standards I was exposed to on the internet have still got me so confused about what is 'natural' and 'normal' for my body.

[@jessicaharrison4719]

Something I learned when I had children is that those with PCOS have a much higher chance of struggling to nurse babies. Apparently about a third of PCOS parents over produce milk, and about a third of PCOS parents struggle with low milk supply, but no one told me it might be a factor until I was struggling to feed my 10 pound newborn. No one told the lactation consultant I was sent to, either, because she shamed me for giving my baby formula when he hadn't soiled a diaper in over 24 hours.

[@BellaHardcastle]

So sorry you had to go through this! I think there is so much wrong with helping women breastfeed in general. I had so many problems and they ended up putting my baby on a feeding tube while I was trying to breastfeed as I didn't feel like wanted me to just give him a bottle when really he just needed food. Its such a under resourced, under studied and under talked about subject.

[@JoyandSerenity.]

Honestly the breastfeeding resources we have in this country are shocking. A lot of women are either shamed off breastfeeding because they aren't good enough or just not helped to do it properly, so they end up failing eventually.

[@jessicaharrison4719]

I bottle fed both my kiddos, and they are happy, healthy, intelligent kids with plenty of caring and empathy, so it isn't the end of the world, and I don't think they would be any more amazing if I had managed to nurse. But I also tried really darn hard to make it work because I was made to feel like it was my fault if I "gave up" and fed my oldest formula, which almost led to a failure to thrive diagnosis.

[@immeremma]

I'd watch lots of hour long Leena podcasts. I'm sorry your doctor was so rude!

[@brianahopson2683]

So the strangest part of being diagnosed with PCOS for me is that I have several other incurable illnesses, most of which are genetic, and they weirdly work well together most of the time. So PCOS can cause infertility, which was my doctors main concern till I pointed out that I am not supposed to get pregnant as it would most likely be deadly for either me or the fetus. I take a ridiculously amount of meds for my illnesses, most of which could be considered poison to your average person as they do things like reduce nerve activity and reduce cell production. Those would both be catastrophic for a fetus, and the hormones that go with pregnancy would be catastrophic for me. The hardest thing is that one of my illnesses actually makes it where I am not supposed to take birth control, so I can’t take the pill or use the arm implant. I’m not supposed to use any kind of hormone birth control at all but my doctor agreed that my symptoms were to severe to just ignore. We ended up going with an IUD because they have less hormones that go out systemically, as they mostly just affect the lining of the uterus but don’t have the hormones hit your bloodstream. This is actually great for the pain and the crazy heavy periods as now I just basically don’t have one. However I still get doctors who want to try and help “fix my fertility” so I don’t “have to worry about becoming pregnant” and it drives me insane. If they would just listen to me they would realize I worry about getting pregnant in a very different way to them. The infertility in PCOS is kinda a peace of mind for me as it adds one more layer of protection between me and pregnancy as that way would only lead to sadness. I have 5 genetic illnesses ranging from Asthma, to PCOS, Lupus and a rare brain condition... there is NO WAY I am gonna stick a kid with this cesspool of genetics when there are tons of kids who need a home and family... But I also see the trouble the infertility causes as my cousin has struggled for over 4 years to get pregnant and is having a tough pregnancy now... I just wish we weren’t all fed this narrative that to have the full “parenting experience” you need to have a pregnancy and be with the baby the whole way. I don’t feel like you are missing out on anything if you adopt, but it seems like society does.

[@anjalibhat14]

I truly commend you for this stellar video. It takes a lot of faith and trust in your audience, as well as patience and self-reflection, to make a video like this. Thanks for sharing so candidly and carefully about your own experiences with PCOS, and for providing so many more nuggets of knowledge in the description.

[@lillybingo2]

I was put on the pill from the age of 14 years old to manage my painful and irregular periods, I was on the pill for 11 years. I stopped for several reasons, but I cannot explain how different I feel being off it. Your comment “it was like a cloud lifted” resonates so strongly with me. I am the happiest I have ever been and I now recognise that who I am now was who I should have always been. I remember being put on it and the mental health side effects were never explained to me. It was only after I came off the pill that I discovered so many others had lived the same experience.

[@9thgalaxy778]

I went on the pill when I was 14 and I've been on for about 2-3 years. Wondering if/when I should come off.

[@meame1136]

I don’t know anyone else personally that has PCOS besides myself. It’s comforting knowing that there are others who go through coping cycles too. While my symptoms are different it is nice to have a community.

[@cara807]

I so relate to what you said about that hair removal procedure. I have pretty severe acne, and a lot of skin treatments are extremely painful, especially facials where they literally slap acidic stuff on your face and pop zits for like an hour. Realizing how much pain I put myself through for years just for the sake of conforming to beauty standards really shook me to my core. As you said, having deconstructed most of that stuff has brought me so much peace.

[@a.laddinsane]

Wow, I can really relate to this. Just went down a rabbit hole of youtube videos relating to accutane yesterday and felt so so anxious and scared. I appreciate the timing of watching this video + reading this comment because I’ve felt so trapped in this box of needing to do very painful/harmful things to myself just to clear my acne. I think you 100% have the right idea in deconstructing the beauty standards that make us feel this way in the first place, rather than suffering and struggling to conform to them

[@cara807]

@@a.laddinsane the pressure to go on accutane is so real! I totally get why people would take the risk, having acne in our ~society~ can be a real struggle (+one people never talk about), but it's so scary that risking serious health consequences for (in most cases) cosmetic purposes is super normalized. I'm allergic to something in accutane so I'll never be able to take it, and finding that out was devastating at the time, but I feel so grateful I didn't end up taking it. I feel like opening up the conversation can be really healing, so thanks for sharing!

[@borkbork4124]

Acne can be caused by so many things, which is frustrating when trying to treat it. Mine cleared when I was 16 after being severe for 5 years. I would like to think my change in diet and exercise did it (it may have been a factor), but I was still an adolescent at the time, so it could have changed with my cHanGInG bODy and HoRMonEs tbh. I will never truly know and that is what keeps me up at night-when I went on birth control I was terrified my severe acne was going to come back. Well it did the opposite and it lessened my rosacea, so I count myself extremely lucky.

[@mbick4d]

Being trans nb (afab) I soooo appreciated the facial hair discussion. Most days I’m pretty femme but I’m just starting to grow a puberty beard. I really don’t mind it but I do mind other people’s 2cents on it. Most off hand opinions just come across as judgement. I’m on this planet to normalize and glamorize “bearded ladies.” ✊ It was nice to hear some solidarity out in the world today! Also Ps. I LOVE the new ink! (I’ve been wearing way more animal print since your leopard print vid. More joy every day bb!)

[@srchocolate101]

Current nursing student here!! Just learned about PCOS in one of my health and illness courses and I found this video so helpful in understanding how people experience it and all the emotional implications that go along with it. I loved this sit down chat and all the political and social topics that intersect with PCOS. Thanks for sharing, Leena!

[@mikayladuquette1086]

Your experience seems so similar to mine! For me everytime I went to see a doctor their focus was only on fertility (even though I don't want kids) and it got so annoying I just stopped going. This video really made me feel like I'm not alone, thank you Leena!

[@DieAlteistwiederda]

My best friend has endometriosis and doesn't want kids either yet when they had to remove tissue the only thing on the doctors minds was to preserve her fertility instead of removing as much as needed to give her as much relief as possible. I've heard about this stuff before but hearing this from someone so close to you hits differently. Like my mom had breast cancer in her mid 50s, imagine they would have only removed as much of the tumor as they could before it would change the shape of her breast instead of what they did which was remove the whole breast and a bunch of lymph knodes that also had signs of cancer. I think most doctors would agree that it would have been ridiculous to not treat her exactly as they did but yet for my best friend they didn't take as much overgrown tissue as they could because it could have impacted her fertility even more than it already is. Fucking disgusting. She is more important than her ability to reproduce. Something she doesn't want anyway. So now she will need another surgery way sooner than she would have if they had done their job right.

[@isabbygabbyorcrabby]

Thanks for the video Leena, I stuck around in the hope that it will help me be a more supportive friend. Also by the way my friend who has PCOS had an unplanned pregnancy so can definitely second what you said about infertility not being inevitable.

[@leenanorms]

Yeah there's so many scenarios, I'm yet to see any wide, well researched stats on fertility with PCOS but I'd be interested to see it if/when it arrives - there's so much conflicting evidence but anecdotally it sounds common to be able to get pregnant with it x

[@Gemmiejewel]

Lena, I hardly ever comment on videos but this one struck a chord with me so much. I was diagnosed 14 years ago after 18 months of trying to get people to listen to me. It was only an emergency admission to hospital and surgery to remove half of my reproductive system because the cysts had become on the verge of life threatening did my doctor actually admit that I was right all along. Again, I got blamed, two days out of the OR by the doctor who basically said if you weren't so "big" then this wouldn't have happened. I was lucky that a nurse on my ward was an old school friend who ripped him a new one for saying that. I have the fertility problems and yes it upset me greatly but I have made peace with it and give my nephews all the maternal love and instincts that I have. Sorry for the rambling comment I suppose I just wanted to say thank you for making this video, because its not talked about enough.

[@Hannah-dr1rl]

Oh Leena I wish there were more people like you on the internet. I don't have PCOS but I also experienced some level of insulin resistance while dealing with chronic illness and choosing to go on a low-carb, low-sugar diet felt somehow anti-feminist and falling into diet culture. But I truly did it for my health and it has helped me so much mentally and physically (at this particular time in my life, in my specific health situation). Definitely understand why you find it a difficult topic to talk about, but you did so with such consideration and nuance. At the end of the day we should not be attaching shame to whatever we choose to nourish our bodies with 💞

[@raquelgomes5205]

Man I really needed this, I don't know anyone who has pcos and my simptoms have gotten worse since the pandemic started. I've been really struggling because I absolutely hate having a beard and I felt bad because feminism and hair is normal but it was comforting hearing you say that someone not wanting to have hair is okay, I shouldn't feel like I'm a bad person or not a feminist just because I want to get rid of something that makes me feel miserable (not trying electrolysis tho, that is where I draw the line lmao and the razor part? had me howling, so fucking true ahah)

[@moiken90]

I relate so much to the "I don't wanna shave like a _man_" thing. Like women are only allowed to shave other parts of our body?? I've begun to shave my tiny moustache because of you and it feels so good, so thank you for that, and thank you for sharing your experience 💛.

[@rixatrix]

I used to pluck out my chin hairs when I was younger and I always had horrible bumps and acne there. When I started shaving, all my skin issues on my chin went away.

[@emmagracie9272]

Have you guys tried IPL (the one promoted by influencers is the Kenzie but there are cheaper ones from Amazon)? I used to have thick underarm and leg hairs and I started using it and after a couple of weeks, it’s made my hair disappear or become really fine. I use it on face and bikini line too. It works the best on people with lighter skin and dark hair. Definitely recommend. Life changer.

[@rhiannabodell1439]

Doesn't the hair grow back thicker though? That's something I've always been worried about.

[@rixatrix]

@@rhiannabodell1439 Nope, and if you think about it, that doesn't even really make sense. Like when you cut the hair on your head, it's still growing, you haven't affected the follicle at all. Is your head hair 10x thicker than it was when you were a kid? Shaving just cuts the hair, so when it grows out a little it might feel pricklier because it's a blunt cut (rather than the tapered end from new growth). But it's not actually thicker.

[@rhiannabodell1439]

@@rixatrix That's so good to hear, I've started getting a tache recently and I was really worried about making it worse! Thanks for your reply! 😊

[@carly6107]

Ok I know this video is multiple years old now, but definitely reminds me of how I was treated as a teenager with skin picking disorder by both doctors and therapists-they were always recommending and prescribing me different scar prevention gels and lotions, and it made me feel like shit, because I didn’t feel self conscious about the scarring before that-I just wanted to not be in pain.

[@lizzymorang8048]

Thank you so much for your honesty, kindness, and openness about this. I also got my PCOS diagnosis as a young teen and felt so incredibly alone for years. In college I did a final project for a health class about PCOS and chose not to shave my beard beforehand so I could show the people in my class what the realities of the condition are. I have also struggled with defining how "serious" it is.

[@aeolia80]

the weight loss thing kinda peeves me. I am totally in the same boat. I used to train in professional classical ballet, got injured when I was 17 right before auditions for companies, and I gained 30 pounds/15 kilos from healing and not dancing (no change to my diet), and 2 directors of different companies told me that if I could get the weight off in 3 months they would let me in without an audition, because supposedly I had "potential". It was too much pressure, couldn't get the weight off no matter what I did, was not gonna go the extreme route, and a year later I quick dancing completely. I'm now 40, I'm MUCH bigger than I was then, much much bigger, but my weight has settled in a roughly 30 pound radius for the last 15 years or so. My diet still hasn't changed, though I am a much better cook now and my body is really good at telling me when to stop eating, don't have that problem, lol, actually I think my diet is better now than it was when I was in my early 20s. I could be more active, of course, could always do that, but there is no way in hell I'd ever go back to the routine I had when I was dancing full time, I'd get a serious injury if I did. But it irks me to high heaven when doctors say my weight is the cause of any thing that's wrong with me, which there isn't much, my last blood an urine analysis was in the normal range. And now I've moved to France where the doctors are NOTORIOUS for claiming weight is the reason for ALL health problems (France has the highest amount of eating disorders in Europe, wonder why, lol). I've come to accept my genetics of being a bit larger person, if that's the only thing wrong with me, oh well.

[@jenniesaur]

I recently got diagnosed and having this video to come back to was a great source of comfort. To hear someone talk about it in a non judgemental way and in a way that isn't hopeless really helps with my anxiety, thank you

[@bradiemaree2822]

I can’t describe how much I appreciate this video, have been watching leenas videos for ages and then I got diagnosed with pcos like 3 days ago. I’m 21 and have bean aware something is ‘wrong’ for a while, it’s really lovely to hear other people’s stories

[@emilylouise9705]

I'm really glad you made this video Leena. I feel like there is so much knowledge and conversation lacking around the subject of PCOS, it can be so isolating. I've never been diagnosed, but I suspect I have it as I have many of the symptoms. I did go to the doctor a few years back after having done some research, putting a little case together and then saying 'Hey, I have a lot of the symptoms associated with this; what do you think?' And you know what the doctor said? She said (*drumroll*)... 'Try losing weight and see if the symptoms go away'. Losing weight... I was a size 10, and no doctor had ever before suggested that I needed to lose weight. It felt like a punch to the gut, but I think what felt even more insulting was just the way she was so dismissive - it felt like there was absolutely no desire from her to take the discussion further. Incidentally, my weight has since fluctuated up and down quite a bit (owing to, at one point, having a very physically active job). At my smallest I was about a size 6, and the symptoms didn't go away, so...

[@tomg268]

How did you end up doing manual Labour in the Nevada desert? There has to be a story in that.

[@joeyleery2002]

As a person who struggles with thee ol' BMI, and has lost and gained weight in all sort of ways, I just wanted to say I very much admire and support the boundaries you have on the topic within your public persona. I completely relate to it, and I sometimes wish I could speak to someone in our same situation about it, without either feel shamed, awkward, and most importantly (as I feel confident enough in myself to hopefully not feel too shamed or awkward) without worrying that my thoughts and feelings would badly influence that other person. It is a struggle. I see you :)

[@lalonimagnuson9859]

Thank you for being genuine about this subject. You are doing a great job. Please keep staying open and healing. - with LOVE from a fellow PCOS holder

[@caoimhenimhuireadhaigh1303]

Fellow chronic illness sufferer here! Thank you for talking about your own, the more of us who talk honestly, but respectfully of your body, about our illnesses, the more understanding and empathy there'll be to go round!

[@naomiaki1437]

I think it is very cool how you know your boundaries and what you want to talk about and what not. Thank you for talking about your experiences!

[@lucy489]

I can see this video was hard for you to share, I just want to give you a hug. I'm sorry for the way your doctors handled your diagnosis and treatments with such disregard for your mental and emotional well-being. I don't have PCOS, but I do have another diagnosis in the similar realm, and I related to so much of what you said I also got put on the pill young, and didn't realise what it had done to me until I came off it at 23 years old and suddenly felt things I'd never felt before. I can't stress enough how much I agree with what you said about the pill, it does absolutely change us and mess with our heads Sending hugs to you Leena, thank you for sharing such a personal part of you with us 💚

[@CorinneDemyanovich]

I have PCOS and was diagnosed at 20. I was told it's a "mild case" whatever that means. My symptoms are irregular periods (they're naturally regular now), acne, and higher testosterone. I use a non-hormonal IUD and have never used hormonal birth control, thank goodness, because I found out I also have Factor V Leiden. This means I can't take hormones of any kind, which means I can't treat PCOS. It's fun when your two diseases work together to conspire against you. 🙃

[@leenanorms]

Oh wow I hadn't heard about that before, that cross over sounds so awkward I'm sorry you're having to deal with that. Haha yes 'mild case' feels very subjective to me. Sending love x

[@timtreefrog9646]

Yes. That was a good call. Factor V Leiden runs in the female branch of families My aunt took hormonal birth control when she was 17. And had a blood clot in her brain (disabled needing care for life now) :( Skip to 20 years later. Her sister died of a blood clot in her lungs. Someone connected the dots and the other females in the family were tested and that is how we found out. Factor V Leiden is definitely nothing to underestimate or take risks with. Take care of yourself xxx

[@theoffkeydiva]

I have a similar problem but there ARE ways to treat pcos without using hormonal bc. Look into spironolactone, which lowers androgen production, meaning that patients generally see a decrease facial hair, acne and weight fluctuations. Also, metformin is great if you need to control your insulin levels. Finally, there are several medications that induce ovulation, if you ever want to get pregnant, the most popular is clomifene. You certainly don’t have to take medication for PCOS, but doctors also shouldn’t act like bc is the be all, end all

[@idoiagarriz6841]

@@theoffkeydiva I'm also in a similar situation. My doctors don't want to risk me taking hormones or birth control in general. Thanks for the recommendations!! I might also add that I'm taking evening primrose oil pills. My doctor suggested them to me and it is working to regulate my periods and lower the pain. Thanks Leena, for sharing your experience... It really makes me feel much better now that I know I'm not alone.

[@JoyandSerenity.]

@@idoiagarriz6841 Fun fact, Evening primrose oil is just a fancy name for Omega 6. Its cheaper to buy in omega 6 pills because pink tax. Omega 6 helps conditions like ours because it reduces the amount of omega 3 in the body and helps reduce inflammation! Very interesting.

[@DesperationLasts]

My mom and my sister have PCOS. They both successfully had two kids, got pregnant without issue, so if you have PCOS and want children, you shouldn't give up on yourself before you try. I don't have PCOS. I got severe versions of celiac and Crohn's instead. I would say I would rather have their issues, but I had a friend in highschool with PCOS who was in and out of the hospital, had lots of surgeries. Can't say I would choose that life either.

[@PIlviivliP]

I don't have PCOS or know anybody with it (or at least, I don't know about it) - so I thought "let's get the explaination part in the beginning and then skip to the end" ... but you know, I probably am fascinated by other peoples illnesses because I watched every minute of this video props to you Leena, you great storyteller

[@PipReads]

Hearing you with the mental fog thing. I had so much medical pressure to sort out contraception after giving birth. Decided on the implant and gave it a year but unfortunately it was not for me. As soon as it was taken out this fog had lifted and i was like omg this is amazing! Not sure which contraception is for me but 10000000% agree that more research needs to be done about their impacts on mental health.

[@gamewrit0058]

One of my married friends says they have always just used condoms with no other methods such as hormones, and are quite happy with their long marriage, two planned kids, and healthy, active sex life.

[@sveme5450]

My last (and thus far only) experience at the gynecologist was really bad. I came there - age 17? - with concerns of irregular periods, intense cramps and cystic acne and the doctor did not listen to me at all. She merely told me that that was totally normal as a teenager and was more interested in asking about my sexual activity instead of any of my concerns. It’s been a couple of years now and I KNOW that should just find another gyno and I think I really needed this video as a push to take care of myself.

[@Taylorschahn444]

I can tell you're drained talking about this. In my own experience, the treatment I've received by doctors (especially male) has been more traumatizing than the disease itself. Female health and healthcare is generally frustrating for endless reasons. Even if it isn't disturbing you enough to stop you from living your life normally, you are a strong and gorgeous human. Thank you for sharing your experience. I'm so happy I found your channel. ☺️❤

[@_sofie]

Thank you for sharing your story. You really have a unique ability to make me feel like everything is gonna be okay almost no matter what it is.

[@pobblebonkstudio]

As a thing passing white woman who is trying to lose weight for my overall health and struggling with emotional eating (especially in my past), your section on wright loss was really really helpful. I loved the way you spoke about the body positive movement and the targets of the messaging around eating what you want when you want,and also about choosing mindfully what you eat. I'll be returning to this video a lot in the future I think just to watch that part again. I also know people with PCOS and this has been really good to understand what they're going through better, even though I don't have it myself. Thanks for an awesome video.

[@courtneyjohnson6853]

Holy guacamole, i was JUST thinking and wishing about you doing a video about having PCOS. I have some of my own issues with cystic ovaries and i was splendidly surprised to pop onto the KZbin to see you posted this video! Thanks Leena, you're awesome

[@InlovewithDamonA]

hi, i really loved your video about selfcareand i thought you said many useful and thoughtful things in it, and this video is just qo great. I love your honesty and the way you seem to take care of your subject and the points and the stuff that it touches, yourself and your public. It is really really genuinely nice to hear you talk. Thank you very much !!

[@xSoulxXxMusicx]

Thank you for talking about this and creating this space for exchange. I am just so angry by how patriarchy has shaped the current health institutions that are in place... we're still called hysteric and stupid, even by female doctors, about things that ARE HAPPENING to us, but no scientific evidence has been pulled up. That there is so little done or helped with these issues... coming very potentially from the same handling of "women" in health care systems. What problems have been caused by the pill or similar things (besides the empowering aspects they had) that are freely being given to us, but have repercussions as well (especially in the past, who knows what we experience of it now). I am warmed by the thought to see us relating here and getting representation. Thank you again to all of you. PS: I have PCOS, too. And a dear friend with Endometriosis and her horrifying journey through medical institutions.

[@elizabethwoodville104]

Thank you so much for saying "it's not your fault & not because of anything that you've done". It's really really hard not to blame yourself & I don't think I knew that before.

[@youhavesproutsforeyespossi6616]

Just want to say thank you for all of these resources, because now I have things I can share with other people to help them with their struggles with how they view their own body

[@feyforged]

It took me telling my dr like 6x that no, I haven't had my period on and off for over 6 months, I'VE HAD IT FOR 6 MONTHS. and then (after blood tests and scans) she was like yeah, you have pcos, but you're young if you lose some weight it should be fine. immensely helpful healthcare/10

[@emilymontague8550]

Also, I had a similar but different experience with weight loss - the only time I've been slim in my life was just after a break up when I was so sad I had no appetite at all and would eat like 1 meal a day. I had so many compliments but I knew it wasn't healthy and thankfully was pleased to see the weight come back as I got happier.

[@ms.z461]

Leena, I feel seen. Me too. I also have PCOS. I was diagnosed at 17 by an unsympathetic male junior doctor. I have facial hair which messed with my notion of gender and I spent most of my 20s feeling like a man as well as building unnecessary barriers which has cost me money in therapy fees to deconstruct. I felt so alone for so long as no one in my family have the same symptoms and I even thought I was intersex at one point. Hearing the similarities in our stories has done something positive for me today. Thank you for your candour.

[@aq7969]

thank you so much for doing this video. i just found out i may have pcos and this has helped me so much. absolutely love your content ❤️

[@meltheissa]

Writing my thoughts/reactions as I watch... so many thoughts! 1) Gahhh to all weight-centric doctors. What a thing to say to a teenage girl in that way - so not appropriate. 2) I WANT THE VIDEO TALKING ABOUT HAVING/NOT HAVING KIDS!! 3) YES!!! BMI rant too please 😊 4) So many sighs... I feel you 💕 5) All the nuance in the weight loss talk 👏👏👏 As an emotional eater, I identify with what you were saying about body positive messaging not quite hitting the mark. As someone with health issues that intersect with weight, I appreciate the complexity. Also, fantastic boundary setting. I appreciate you sharing what you're comfortable with, and being firm about what you won't. You don't need to explain it, but I appreciate the explanation too 😊 6) Oh the moon cup measuring!! That's how I realised that I have super heavy periods... 7) Thanks for the talk on quirky bodies... sometimes I feel I'm collecting too many quirks, but the thought that everyone has some is comforting. 8) I confess... I'm one of the morbidly fascinated people. Thank you for your openess and honesty in this video! Understanding helps the world go around.

[@claudiajade624]

For me having children has always been an 'if', and I am v grateful for that. I think part of that comes from my mum being unmarried and my aunty being both unmarried and without children. So there wasn't this inherent 'given' in my mind or in my immediate family. But like, there are so many steps involved! You have to want children, you (usually) have to find a partner who also wants children, and Then u have to start the process and see if your body is even compatible with that desire. I do think the portrayal of infertility in media both helped prepare me, but also made/makes me quite nervous to even admit to ppl (or even myself) that I do want to have children, because of the fear that I might not actually be able to. Anyhow. 🤞🏻

[@leenanorms]

Yeah I think it's super confusing, I think it's society that needs the separate the desire to 'mother' from the physically giving birth part, they're linked but separate experiences that definitely get mixed up. Omg do I feel a 'lies you're told about mothers in your twenties' video coming on? lol

[@caitie226]

Seconding Leena’s recc: You’re Wrong About and Maintenance Phase are the ICONIC DUO of unpacking cultural lies. Please go give them a listen!

[@TheGPFilmMaker]

It took me 11 years to get diagnosed with PCOS. Finally found a treatment plan that worked. And I'm so grateful. But also SO shocked that it somehow took 11 years to figure it out!

[@CrazychiickCaragh]

Really appreciate this video, been "kinda" diagnosed with PCOS for 3 months now. My coil that I had got trapped and while sorting that out my scan showed cysts on my ovaries, and my experience with the doctor was literally like no blood test nothing like that just have you got more body hair, the scan and irregular periods. Yes you have PCOS, which was a bit worrying. So been going on a journey to deal with this and the potential fertility issues I may encounter. To the point I am 30 and wanting kids with my partner, so this winter I'm coming off my contraception. But your video has really helped open my eyes to a lot of things, I have been googling and looking up stuff but doesn't help as much as an actual person talking about it, and with the state of the NHS these days talking to a doctor is difficult. So I wanted to say thank you for your long video ❤️

[@sarahspiller5009]

I have suffered from extremely painful and irregular periods since I was 14/15 (so over 20 years!). I was put on birth control and Vioxx(heavy painkiller no longer on the market) when I was 15 and without any clinical testing, grew up believing I had endometriosis. My symptoms got a bit more manageable after my kids were born, but have recently taken a major u-turn. It wasn't until now, that I complained loud enough and bounced through a half dozen doctors that I have finally been taken seriously enough to warrant in depth testing. Turns out there is not even a trace of endo and they are running on a new diagnosis of pelvic congestion syndrome. My pain can be almost non-existent while actually bleeding then to the point of warranting an emergency room visit for fear of dying. So while I don't have PCOS, I can 100% relate to the pain, uncertainty, frustration and disappointment at the utter lack of research into female reproductive ailments. Thank you for sharing your story and giving others maybe a starting point to doing their own research or starting the conversation with their doctor. 💜

[@AZebraReads]

No clue why (probably related to my EDS) but my periods have always been extremely painful. I was put on the pill and started going blind because my body was storing the excess oestrogen IN MY EYEBALL. So I needed to go on progesterone only and ended up on the depo. I swear, I love it, no periods, no pain, only every 12weeks so I don't need to remember every day. Love it.

[@robynhab]

The fuck!! Glad you've worked out a plan that works for you. That must have been so scary!

[@conlon4332]

I personally don't have PCOS, I guess I watched to the end because I'm curious about different people's experiences and conditions. But I for very different reasons didn't cope with periods. I have sensory issues that mean I couldn't cope with any of the protection methods - my periods were never painful or heavy, but I couldn't cope with any of the things that stop you bleeding everywhere, so that was obviously unsustainable. I take Desogestrel 75mg. I know everyone's different, but these are working very well for me personally. I do take it everyday, but at very erratic times and yet I hardly ever get breakthrough bleeding. According to my doctor this is very strange, she would expect me to get a lot of breakthrough bleeding as I don't take it at a regular time, but I don't and I'm grateful for that. But that probably means unfortunately that it doesn't work so well for most people, which is a shame. I'm just glad it works so well for me. Also it doesn't suggest you take breaks from it with this one - I have read the leaflet, which is good.

[@lizluke2686]

I'm only a few minutes in and I'm very excited to watch the rest of the video. As a person with PCOS, diagnosed at 18, with seemingly no link to anyone else in my fam (my mom and sister don't show any symptoms, but not sure about my grandmothers, aunts, etc), I always find it super helpful to find other people to chat and identify with who have PCOS. I'm going to save the rest of the video to watch with my husband (as I understand a lot of the background about PCOS having lived with it for almost 10 yrs now, at least the little info they do have about it since there is not much research being done into it right now I think)... I think your video will help him to understand a bit more about PCOS in general and difficulties faced/experiences of those who have it!

[@elizabethalice6634]

I stumbled upon this video when looking for people who had PCOS (I've not been diagnosed but I am suspicious) and I just wanted to say thank you for it. Everything that you talk about with facial hair & hair loss and weight loss/gain hit me SO HARD. I'm so thankful that you're not talking specifics about weight loss/gain/whatever because fuck me, everyone in my life likes to think they have ALL the answers about MY body.

[@mariannafengari]

I just wanted to say you create the most comforting videos ever & I am so glad you're here ♥️

[@elitsahadzhiivanova298]

I enjoyed listening to every minute of this. It wasn’t too long at all and first hand experience is always great to hear.

[@schmauften]

I know this is completely irrelevant to your video - but that tattoo is INCREDIBLE. I've been wanting a tiger tattoo for a while that looks strong but not overly angry/fierce and a similar pose could be a really great inspiration! You look wonderful as usual. Thanks for chatting with us.

[@johannafrog2684]

Thank you so much for this. I got diagnosed at 20, after getting of the pill. It's only been like 9 months or something, but man it's been a wild ride. I really wish I had this when I first got diagnosed, to calm my nerves and put things in perspective! But I am so glad to know that it'll be here now for anyone else, when the diagnosis and the chaos with it comes along. This was a wonderful safe space. Thank u!!!

[@charlotteboys3337]

Hahaa. I signed up for a whole damn PhD because of morbid fascination about illnesses I don't have, so of course here I am at the end of the video 👋. I would so love to be one of the people rectifying the research gap around PCOS or side effects of contraceptives one day.

[@lunarvisions7]

Thanks for making this video! Honestly it was very comforting as someone who was also diagnosed very young (12-13) and also felt really alone in this. This year I found out that my best friend of 8 years also has it as well and that’s made me feel better too. And also it is wild how different our symptoms are, despite having the same condition. Idk it’s so frustrating so little research is made into something so many people live with.

[@saffodils]

havent finished watching but just have to say-so glad to see someone else talk about how painful electrolysis is! i'd be on ibuprofen and topical numbing cream and i still had to kinda dissociate thru it. and now (for gender reasons) i wish i could grow that mustache they removed! my problem with my facial hair was about ppl saying mean things at school, and there are other, much less painful ways of addressing that. there's this whole moral panic rn about letting kids transition, but because it was about reinforcing cisnormative gender standards, no one questioned doing this incredibly painful and irreversible thing to a middle schooler for several weeks in a row!

[@saffodils]

but that said, people should get it if they want it, and it should be supported by a national healthcare system.

[@melissarose4757]

LEENA I LOVE YOU thank you for talking about PCOS! You are one of my favorite creators, and I am so glad to hear someone I look up to so much talk about PCOS. I felt totally alone when I was diagnosed with PCOS, it literally is the worst. It makes me feel so disgusted with myself; it's like the worst disease for confidence and aesthetics, not to mention the painful periods and infertility. Thank you so much for sharing your story.

[@melissarose4757]

I had the same response to the infertility too, lmao. Just like "I feel like this should be worse for me but..eh"

[@emmagrace289]

I don’t have PCOS but watched to the end and honestly I just find you a very calming presence, and hour of Leena is no bad thing. But I also date women so statistically I’ll probably date someone with PCOS, and it’s always good to be informed.

[@aliceprobably]

Lena my beloved - thank u for this. I’m 27 and was diagnosed w PCOS recently after bringing it up with GPs for almost a decade. Interestingly, I wasnt tested until I gained weight in lockdown and my GP became fixated on my BMI. Similarly, I was also made to feel like nothing mattered beyond my weight, which sent me into such a spiral as I’d be taking the piss if I tried to tell you I was actually fat currently. I’m still dealing with rage and grief around trying to adjust my lifestyle whilst not encouraging old ED patterns. Every step of the way I’ve felt quite powerless, even to the ultrasound where I wasn’t warned I’d have an internal one and was ignored when I said it made me uncomfortable. It’s just so reflective of how little of a shit is given about AFAB people and our bodies, to think how many people experience this and how substandard the medical support is in most cases. After lockdown my mission will be to find a new GP, stop being polite about it and figure out how to have more agency over my choices here. Thank you again. Luvly tattoo. xxx

[@gamewrit0058]

Yes, good luck in your search! You deserve so much better! 🍀❤️

[@ploaie.mp3]

i've had really painful, really... just shitty overall pcos, for roughly 10 years, before making it to the gynecologist for the first time, last year. finding out i had it... first felt like a relief as i finally found out what was wrong with my period; it finally confirmed that i wasn't... "weak" (as a lot of misguided ppl would put it) and i could finally do smth about it.... then it felt frustrating as i realized that i went through all this shit all this time, through all the pain i felt physically (and emotionally/mentally; i was constantly told to just "get over it") and i've been doing my best to deal with said frustrations ever since. god i wish everybody on this planet knew about pcos. it would save the world loads of pain and trouble... thank you for talking about your experience so candidly. this video's going right in my free therapy playlist for sad bleeding times ❤💗

[@Kamillouu]

I don't have PCOS (or am not aware of it) but I listened to you for one hour and it was really interesting. Bon courage à toi, from France !

[@pirlie]

Its true what you said in the beginning of the video, about not wanting to read or listen to much about the illness. I know your channel since two years now i think, but never watched this video, until today, despite having binged all the older videos. I got diagnosed with PCOS in 2019, at the age of 33 after having symptoms for some years. I started shaving (with an electric razor) after seeing you in another video doing it. Thank you! Also i bought "Motherhood" some weeks ago, gonna read it next year i think and i hope it will bring some clearness.

[@annaw9687]

I don’t have PCOS or any symptoms, just watching for interest and education but thanks for the informative video! I really respect your logic and outlook (not just in this video) on everything, you always come across as so reasonable and considerate. You make me think about a lot of things differently and help me to unlearn a lot of silly things society tells us.

[@SamWest96]

Don't have PCOS, I do have endo and adeno. Thank you for sharing, I'm saving this for my daughter's nap tomorrow so I can get truly engrossed because I'm so fucking ready for this. I'm hoping one day soon to be able to afford enough to become a patron because I bloody love your work and I'm so grateful you're talking about this on top of the already incredible work you do ❤️

[@katelynhoward3213]

My evolutionary psychology professor mentioned the same thing about how hormonal birth control may affect who you are attracted to, and I ended up reading This Is Your Brain on Birth Control by Sarah E. Hill. I recommend it for anyone on hormonal birth control (or thinking of using it) as I found it very informative! She talks about the research that has been done as well as her own personal expereince using and going off the pill, but she does acknowledge that there isn't much research on it and highlights the gaps that should be filled.

[@sunflowerspirited4974]

Thank you for sharing your experiences and thoughts on the subject! I don’t personally have it, but my childhood best friend as well as one of my exes struggle with PCOS and it’s always made me so angry the way their doctors and family talk to them about it. One identifies as agender and the other is a cis woman and the expectation of being a “woman” and that having PCOS makes them less of one, especially in relation to the potential infertility, really pisses me off. Also the fatphobia that comes with it. It’s so heartbreaking loving someone and thinking they’re the most beautiful person in the world but because society has ingrained it in their brains that they’re ugly and unworthy they don’t believe you. I’ve always tried my best to be supportive and encourage them to make healthier life choices for their own sake, not the sake of weight loss in and of itself (especially since my ex struggled with disordered eating as a kid and was only ever complimented on their appearance when they weren’t eating). Not sure if my words ever hit, or if I was saying the right things, as I’m no longer in contact with either of them, but I hope it did. Even if I don’t currently know anyone with PCOS, I’m always trying to learn more about it the next time I do. It’s more common than people realize and you’re totally right, it should be researched and talked about more. We know more about fuckin erectile dysfunction than we do about PCOS and that’s sad.

[@elenabenotti3710]

Once I watched one of your outfit videos and you told that you prefer pants with elastic because they help when weight fluctuate and MY GOD, you were so right! I swear I started buying elastic pants only and my life is much happier now.

[@janesawatson2678]

I needed this so much. Like a was tearing up because I feel seen

[@beastsbooksandbeauty9136]

I’m going through tests for PCOS now so was good to watch this, thanks

[@sallangel]

THANK YOU so much for this video Leena! I was diagnosed at 25 (nearly 30 now), but had signs from before the age of 18. I wanted to thank you for sharing your own story, and to help in 'normalising' PCOS, in particular your points about hair removal and the sexism involved. I myself aren't 'there yet' when it comes to accepting PCOS - I'm still figuring out it's place in my life, and how I can and want to react to it. For me, it's a real knock to my self-esteem (especially as I'm really pale, and have a lot of really dark hair), and yet I know it can be better. If you do have PCOS, or suspect you have it, the best thing I can share is this: you are not alone. Your health and your concerns are NOT invalid, and we can be stronger together.

[@charlottea.m.9211]

Haven't seen the video yet, but also have PCOS and excited that you talk about it :)

[@ZaydaFleming]

I don't have PCOS, but as a uterus carrying cis-woman I find discussions around reproductive organs to be so important because they just weren't had when I was growing up. My mother and my sister have had hysterectomies due to uterine fibroids and I am very concerned that I could develop them in a way that is highly negative to my quality of life - and my current PCP does not seem to take my concern seriously. - Also was on a super mild version of the pill for 1 year and it absolutely impacted my mental health in very negative ways, so then I tried the copper IUD for 2 years and had the worst/heaviest/most painful periods with constant breakthrough spotting. Contraceptives for uterus owners need more study because the experiences of "trying to find the right one for you" has been a shit show. Love the breaking down of "normal", "healthy", and "gender" in this video too. All important conversations to have with ourselves and our friends/families.

[@MarleyMe95]

Thank you for a nuanced video on this. I have about 7 millions thoughts on this but here are a few that came up for me: 1. I think the best reframe for the prescription of weight loss for me (and for many), is to stop thinking that weight loss is what caused the change in symptoms. Changes in your health behavior can alleviate your symptoms. So, if you know your body doesn't respond well to milk or low GI foods, then you might adjust that. If you lose weight, that's just a side affect of doing what made your symptoms feel better. 2. One of my personal peeves about PCOS is this idea that it is a reproductive illness only. That the two main ways it's discussed are the frame of weight and fertility. Obviously, these convos will take up a lot of space. But I want more people to understand that PCOS means something is wrong in my brain, my pituitary gland doesn't tell hormones what to do correctly. The result of this is more than just "I'm fat"; it's that I am tired after certain meals, I can't make enough Vitamin D and my mood is affected, etc. I think that for an illness so common to woman, it's incredibly telling that our framework in talking about it is through fatness and fertility, and very little about pain and physical symptoms. 3. I guess this is an extension of point 2, but one of the most simultaneously awful and helpful things for me in my ~journey~ was realizing that the way my body looks/weighs will never change and that I have to live with my body forever. When I finally realized I was never going to be smaller, first I stopped caring at all about my choices out of anger. This was not a fun time. But then, I hit this point where I realized, I could care about my choices and try to stop correlating them to my appearance. I could just make the choices for me and try to partner with the body I have, and listen to the signals it’s sending me. 4. I also want to mention, that woman with PCOS have around 4 times the prevalence of EDs than the general population. And there is a perception that these are not restrictive eating disorders. But this, is simply not true. And I just want to make sure we’re holding space for the idea that you can be fat, chronically ill and have an ED with restrictive elements.

[@rasberry797]

I was diagnosed last year at 23 right in the middle of the pandemic which was lovely, but I am so surprised it too that long because looking back it has been so obvious. I've had a year to process everything and have decided to create a painting series around my pcos journey and others

[@sophiabeh6155]

Leena I really loved and appreciated this video. Love the honesty. Love the consideration to all people. Thank you. Also. Love the tattoo. So so so so cool. Also. F*ck the way that hormonal contraception messes with our minds!

[@amyhatch3761]

There was a boy at school who called me "Moustache Mike" which isn't even funny because my name is Amy. I think he was jealous because I could grow a better moustache than him when we were 12. I remember having hairier legs than any of the boys when I was in primary school and wondering if that was normal 😂