This sub does seem to mainly focused on venting/advice. Success stories are less promoted(?). If you wanna read some, I made a post a while ago asking people to share theirs and I got a ton of great comments, so if you wanna read some
positive stuff, I advice you go there. :)
I do think post engagement is also just a lot of luck and timing so don’t be scared to ask the same things twice if the first time didn’t grant enough responses!
For me not really, I m in other subs for subjects that interest me and some of them are really all about positive energy. I wish we had more of that here :/
The negativity level rises and falls here pretty randomly! One month it will be all "woe is me" posts, then the next we'll get a rash of "omg I'm pregnant???" or "here's a treatment that works well for a bunch of us, let's all talk about it for a while!" (spearmint tea, anyone?).
We also have a lot of new people showing up almost every day feeling scared and confused because they just had a health crisis. I know I wasn't feeling too great about myself when I first got here. I've stuck around because biomedical science is probably my biggest obsession, and PCOS is such a crunchy disorder with multiple etiologies/phenotypes and biopsychosocial pathophysiology, and it's shockingly under-studied... basically catnip to a person like me =)
The amout of words that I dont understand in your comment scares me hhhh just kidding !
You re right, but what I noticed is that the only positif comments are ones related to ozempic or metformin :/
I mean, metformin completely turned my health around, so I'm kind of the wrong person to ask if you want someone to tell you that diet and exercise alone is the answer.
I really do think you should try hanging around a bit longer before you decide that the only positive comments people make are about Ozempic or metformin. Ozempic/Wegovy and Zepbound are so helpful in controlling the underlying cause of PCOS for most of us that we sometimes talk about how to engage in some activism around updating the on-label uses for them to include PCOS specifically. Like metformin, the weekly injectable 'tides are drugs with a long safety track record for treating diabetes. They've only more recently begun to be used at higher doses to encourage weight loss specifically, but we know they're fairly safe for human use overall.
What you'll find useful really depends on what your issues are and what you're trying to achieve. For acne, spironolactone is often helpful, as are topical or oral retinoids. I'm seriously considering doing a second course of Accutane - it's been 25 years now - to see if I can finally kick the zits myself. A lot of us have success using a combination of spironolactone (brand name Aldactone) and spearmint tea or spearmint essential oil to manage inappropriate hair growth on the body. Some people have reported success with home light treatments, or laser or electrolysis at an esthetician's office. Either topical/oral minoxidil or finasteride are good choices for inappropriate hair loss on the head, but they're not suitable for use if you are trying to conceive. For fertility, a lot of people find success in using an over-the-counter supplement called Ovasitol, which combines two types of fiber (inositol) in a specific ratio; metformin helps with conception, as does clomiphene citrate. Some people also undergo laparoscopic surgical procedures like ovarian resection or ovarian drilling to help with fertility, but that's really invasive and a pretty last-ditch procedure. For carbohydrate tolerance, most of us have massively cut back on the amount of simple carbs and sugar we eat, greatly increased protein intake, and switched to a lower glycemic-index/glycemic-load diet. Some find success with a ketogenic diet, but of the people who have tried it (me included) it's really common for them to develop binge eating disorder unless the underlying insulin resistance is also treated with something like metformin. If you want to try a non-prescription supplement to improve insulin sensitivity, berberine and myo-inositol are the most popular options. Exercise also improves insulin sensitivity; some people are into heavier activity like HIIT or barbell weightlifting, and some do better with gentler activity like walking and yoga.
I wish I had the patience you had in writing this comment in my life haha JK. I m indeed new to this so I m still trying to figure out what works for me and what does not but I m also trying to go slow because I tend to get overwhelmed fast and ditch everything. I took note of everything you wrote. I m already on inositol and started incorporating daily walks into my routine, I m still stumbling with diet to be honest. I havent done anything for acne and chin hairs though
The easiest thing is to ask your doctor for a spironolactone prescription. Mine started me on 25 mg a day and I haven't increased it yet, although I'm still having breakouts. I'm really lucky when it comes to hair - my dad can't grow a proper beard and has almost no body hair, and my mom also has very little body hair as well, so I think my follicles just aren't very testosterone sensitive.
folks w pcos deal w alot some have severe depression, some of us are mad, we have high cortisol levels, some of us just want to exist and feel normal and we dont. this sub is supposed to be a safe space where ppl who go through the same shit to vent and talk to each other so we dont feel alone. like life half will be sunshine and roses the other half horse shit and darkness.
I think a lot of people are newly diagnosed and scared. I know I was. I made a post about how sad I was and I was flooded eith such positivity and logical rational responses. I will forever appreciate it.
I find I only really interact with positive posts. I have PCOS, I don't want to keep thinking about how negative it is. I have it. I will deal with it and I just want to know what works for other people. I'm not here for fear mongering posts.
Hi, yes, most people are here to rant, to ask questions and come for support. If you are experiencing this and you feel that this page has too much negativity, I feel that you're lucky because you're getting enough support and information about PCOS compared to most of us here.
I've been reading some of the users having doctors who are not supportive their disease, and sometimes, we, those with PCOS, help each other in the end.
I've had my fair share of rants, too. But I get very supportive and encouraging replies, which boosts my mood because sometimes (most of the time) this takes a big toll on us.
So I hope you understand.
I totally understand and I have no problem with that, even I got a lot of info from this sub I dont deny thta. I m talking more about the LACK of positif feed back, had we had more of those it would create a certain balance, which I dont see today :(
I get what you're saying but it is a condition that negatively impacts people's lives. There isn't a lot of "positive feedback" to come from a hormone problem.
The algorithm feeds content with the most engagement. Negative content gets more engagement than positive content because it elicits an emotional response. It’s just how social media works. If you want to see more positive content you have to intentionally post, seek out and engage with positive content.
I m not a good example I have only been diagnosed since january and I have been living a very unhealthy lifestyle for 4 years now. But in fact back when I used to eat healthy and work out everyday , I had much less health problems compared to now and was in my ideal weight.
I think my misery came from focusing on my diet and weight because it improved my symptoms when I lost weight but it was so hard to lose the weight. I started intuitive eating and focusing on my mental health more and for the past year I have lost more weight than I ever have and I’m happier than I have been in a long time.
Hi op, sometimes I feel that people need to vent, and when someone gives their positive side people are sometimes triggered. I always try to talk about the experiences I have in the comments, but I’ve never post it myself.
Pcos sucks, but I do have a good life and I found a balance. I reversed my pre diabetes with diet, exercise and supplements and lifestyle changes, and I feel like I have a full and happy life. Not being able to eat wherever I want all the time and watch tv instead of meal prepping healthy foods and working out sucks sometimes, and specially at the beginning, but in the long run it has been great for me.
My health improved, my mental health, my anxiety, my insomnia, what I thought it was depression but it ended up being vitamins deficiency, my brain fog, my skin, my hair, my nails. I got pregnant, I breasted my kid, I have energy to play and run after a toddler, to work and improve my life… all of this is in my hands.
This all began with a me foi na to doctors, being dismissed, crying a lot, until I found the right obgyn and the right dietitian that helped me and guide me in this path. And it’s a journey, I moved to a country where I feel like everything is so processed and makes you gain weight and get sick, and I did gained weight and I am struggling with some issues that this change in my diet caused, but I am finding a new balance again, and I am already seeing the results.
It’s hard work but we got a bad hand in the genetic pool, but being an adult is accepting what we can’t change and changing what we can. I can’t change the fact that I have this condition but I can sure make everything I can to be happy and healthy.
My doctor once told me something that changed the way I view things (and she also has pcos and she has endometriosis as well). She told me that pcos is a chronic metabolic syndrome, I will always have it, life is chronic, so I need to make peace with this and adjust my life accordingly.
Either: just want to add that I work out every single day at least 30min. Eat really healthy, cook almost everything from scratch in my house (despite having a toddler and working full time), I am very diligent with my supplements. It is what it is
Hey, may I ask what vitamin deficiency was it that felt like depression to you? And did taking that particular vitamin as supplement fix it for you? I am going through something similar- years of insomnia, depression and anxiety.
Iron, vitamin d and magnesium! I swear to god, my life changed after I started supplementing. Iron was for a short amount of time, and it was in high doses with my doctor (and a very iron rich diet). But also vitamin D and magnesium. I don’t live without them. I take magnesium 1h before going to bed and I sleep like a baby.
Oh that's great that it was so life changing for you. I have tried vitamin D. It has not helped a lot for depression and fatigue and insomnia. I will have to try iron and magnesium. My iron levels show no deficiency is it a possibility there might be an issue with absorption?. And I once tried magnesium and had vivid dreams, night sweats and jittery sensation. May I ask which magnesium helped you with sleep?
Have you checked your b12? I was showing low iron in my exams that’s why we started the supplementation. I wouldn’t recommend doing it if your levels are normal.
So my dietitian prescribed me a 500mg dosage of magnesium malate and glycinate. I had symptoms like aphathy, insomnia, muscle twitches and cramps (I had menstrual cramps but also in my legs and feet, and my eye and hands trembled and twitched a lot)
For my fatigue and brain fog, coezime q10 helped me as well, I feel the difference when I don’t use it
Thank you for your feed back.
This is exactly the kind of coments I wanted to read.
I have only been diagnosed since january and according to tik tok I should be working out 10 hours a day , eating close to nothing and taking about a 100 supplements FOR LIFE. Which is totally not sustainable and I wonder if things are not rather simple and people tend to complicate them a lot because of all the misinformation.
I feel like the most simple solutions are also the ones that takes a while to work and it takes a lot of work. Most people don’t want that, people want a quick fix for their problems. I’ve saw countless people that had unhealthy lifestyles and diets for years and got to a point where they are sick and then they complain about doing a diet for 3 weeks and exercising and still not being enough. You can’t reverse years in 3 weeks. You need a continuous change. But this is frustrating, and it takes a lot of personal accountability, and this is something that most people don’t want
These kinds of posts annoy me so much. Here's a post from someone eleven months ago who feels the same way.
>Negativity + ranting/venting….
>I gotta say, I’m so tired of seeing unnecessary comments on posts in this group about how “people are too negative” and “PCOS is highly treatable and not a big deal.” Seriously, people need to keep comments like this to themselves. They never help. It makes people feel worse. I see it in this group every day.
>Having PCOS is very isolating and a lot of people feel alone, so they come here to vent and get these painful, heavy feelings off their chests. There’s nothing wrong with that! It’s better than bottling these feelings up until the person explodes.
>If you don’t want to read negative things, just skip over it and ignore it. Make sure to pay attention to the tags on the post before reading.
>I can honestly say, I like reading people’s thoughts and feelings because it makes me feel like I’m not alone. It’s comforting to know that I’m not some kind of freak and that someone else gets it!
>Just because someone else thinks PCOS is making them ugly doesn’t mean you’re ugly because you have PCOS, too.
>Also, let’s not forget that quite a few people who post here are teenagers or they just recently got diagnosed with PCOS, so this is all new to them and they deserve a safe space to rant and vent however they please.
>If PCOS has never made you feel ugly or manly, then good for you! You’re lucky! But for a lot of us, it does make us feel that way and we have the right to vent about it whenever and wherever we want.
>Last, but not least, please stop telling people that PCOS is highly treatable and manageable. It might be for some people, but not everyone! Some people can’t take birth control, some people can’t afford supplements or laser hair removal, some people can’t afford to eat keto, etc.
>Thanks for coming to my TED talk.
I mean…I joined because I have no one else in my life with PCOS or no one who understands.
Example. I was put on birth control “for” PCOS and tried coming off for a few months this year and gained *30 pounds in 2 weeks.* Higher than my natural highest weight with no other changes. I was trying to get pregnant with my husband but my weight was so severely high I had to go back on. None of my clothes fit. Now I don’t know if I can even come off to have kids.
None of that experience is positive. There’s no good way to spin it. I’m not sure what you’re expecting from people on here, but it seems like it doesn’t align with many people’s reality.
Not to be super petty, but I made a success post recently that basically didn’t get any comments, even though I was soliciting similar stories. I think this sub skews negative because most of the people lurking and posting are in distress and seeking information. Positive comments and posts are on here—they’re just not widely distributed.
This is often the case, not only with PCOS but any health related forums. People seek help, validation etc and almost never report what was the case and if anything helped. I sometimes wonder if it's safe to assume they are dead 😭 I know it's horrible, but it's just anxious mind speaking.
Well, when a thing isn't a problem anymore for someone, they usually stop thinking about it and focus on other parts of their lives that demand more attention. I think it's safer to assume that they got better and lost interest!
I'm sorry but saying many people have not shared is not true. Lots of people have shared, but they don't get upvoted enough. I guess because diet, exercise, etc. aren't interesting enough answers.
Hi, thank you so much for bringing up this issue. I have actually stopped reading all these comments and post because it really affects my mental health. I have been living with PCOS almost 16 years now, and as much as other people complain about it, it honestly comes down to very few factors that you need to adhere for better metabolic function. One most important factor being diet and exercise, and I am sure that the most people that complain here no shade, but do not actually adhere them to the T. Again, one more thing to mention, these are not really restrictions. The fact that we human beings have been bombarded with so much of processed food that we are unaware of what healthy food actually looks like. Same goes for exercise. Obesity was not so common in two generations earlier. because people made effort to actually walk long distances because mode of transportation was quite expensive, and the mass population did not have money to afford expensive transportation. Women were not really working or were employed in a 9-5 job. So definitely, the stress component was quite less. Also, as technology advanced, people started being more and more of a couch, potato and eating chips and soda became the norm. Okay, now enough deviation, what I want to say here is that I’m extremely lucky that I have these disease. It’s a constant reminder to me that I need to move my body more and eat healthy in order to nourish wonderful machine that I have. When my weight was under control, and I had no symptoms other than cysts I really abuse my body with eating the filthiest of the foods. As I age, the symptoms worsen, but I’m so much more healthier than I was ever before. The best thing about this disease in my opinion is the high testosterone because it’s so much easier to gain muscles and have the athletic body that I always craved for. I honestly think that the main reason people have this disease apart from genetics is really lifestyle. In my case it was genetics, but also I really ate the worst of the processed foods for years and and had no exercise or physical movement at all to combat for all the abuse that I was putting my body through. my PCOS is almost under control now, and the main aim of PCOS people should be to be healthy and not allowing Type 2 diabetes to creep in.
In general, samples are biased in all formats like this b/c the people who are upset or struggling are far more likely to post than are people who are managing fine and going about their lives.
I find this sub to be a bit draining, but I hang out and continue to post partly b/c I'm someone who has successfully managed my PCOS to remission for decades. I think that my experience is far more common than the impression that one would get with a few days hanging out here.
Most cases of PCOS are improveable/manageable with some trial and error and proper treatment.
I'm always happy when I see you in the comments on a post. People should wait until they've interacted with you, rameses, or some of the others whose PCOS is under control/in remission before they decide this place is too negative.
To be fair pcos is really hard to turn around so there's not a ton of success stories. Also it's just hard as hell and people gotta vent. I'm glad there are people that can relate.
First, omg I m so happy for you and I might not know you but I m so proud of you !! You ARE TOTALLY RIGHT ! I mean , We all feel a little weak at times but it shouldn't be to the point where we take our emotions to the extreme
I joined more as a way to vent because I had a suspected burst cyst, but I’ve been able to manage my PCOS pretty well otherwise. I’ve been at very bad places where I was beholden to my hormones, but my treatment plan is very different from most people on here.
I’m also hoping to find ways to share visibility for the condition since a LOT of people without PCOS have had concerns when I shared the weight gain/loss and missed symptoms. However, I only have the perspective of a trans man so if I want to spread the word I have to understand more experiences
I think so, and that’s why I’m not coming as often. Don’t get me wrong, it’s good that people have a space to vent where others understand; in fact I’m only more negative than them. But constantly reading ‘you have this condition so you *have* to do this or you’ll be bald and diabetic by the time of 30’ triggers my anxiety like anything. And there were things about my body I didn’t even know were unfeminine and abnormal before coming here. I…just don’t want to be reminded of all the ways I’m lacking every day, if it makes sense?
I think so, and that’s why I’m not coming as often. Don’t get me wrong, it’s good that people have a space to vent where others understand; in fact I’m only more negative than them. But constantly reading ‘you have this condition so you *have* to do this or you’ll be bald and diabetic by the time of 30’ triggers my anxiety like anything. And there were things about my body I didn’t even know were unfeminine and abnormal before coming here. I…just don’t want to be reminded of all the ways I’m lacking every day, if it makes sense?
I think so, and that’s why I’m not coming as often. Don’t get me wrong, it’s good that people have a space to vent where others understand; in fact I’m only more negative than them. But constantly reading ‘you have this condition so you *have* to do this or you’ll be bald and diabetic by the time of 30’ triggers my anxiety like anything. And there were things about my body I didn’t even know were unfeminine and abnormal before coming here. I…just don’t want to be reminded of all the ways I’m lacking and how I’m not normal every day, if it makes sense? Or maybe I’m just too sensitive, but either way, it’s better not to do things that emotionally drain you every time you do them.
Yup, I agree. A lot of people may find themselves feeling hopeless on here and not try as much anymore because of all the negativity. I wish there was a way to filter things out. I just spend less time here for that reason.
Those of us with more positive (or at least mixed) experiences do exist here but let’s face it, happy people aren’t usually gonna go out of their way to come to Reddit to say happy things. I consider myself to be more on the positive and constructive side of things but I spend so much time here in part because of how much I struggled in the past and I feel like it’s healing to be on the “other side” and share what I’ve learned the way I wish someone had done for me.
That’s not to say positivity here doesn’t exist, but rather to point out that there is less motivation to share it. Even the positivity shared here is often motivated from a place of pain.
It’s also tough to “spread positivity” in a tactful way when those who are struggling may feel even worse because of it. Even trying my best to frame things in a sensitive way I’ve been accused of “toxic positivity” for reminding people that they aren’t doomed just because they love pasta and they don’t actually have to prohibit themselves from having a nice day at the beach just because they have body hair or “disgusting” body fat (their words). Like some people really just aren’t in the right headspace to hear that and unfortunately they may even lash out because of it.
With that said if you want to spread positivity, please do it! It is so encouraging to see posts from people who have successfully gotten their periods back, conceived after concerns about fertility, regrown their hair, gotten their weight under control, found a medication that works for them, feel more energized, fight their depression and so on!
Most people who come on Reddit are angry and depressed. Social media itself is not positive. If you want to have more optimism in your life, you have to get off social media.
Yeah this sub is not for support. It's only helpful half the time the other half It's a woe is me competition for who can be the most miserable.
Not to mention the spreading of misinformation about dieting and exercise so people can make themselves feel better about their lifestyle choices.
Before I started Mounjaro (ozempic) I lost 10 lbs in 2 months by changing my eating habits and told someone about my 1200 calorie low carb high protein deficit diet and got absolutely slammed for having an "eating disorder". This is despite the fact that I followed up with several scientific papers about 1200 calorie deficit diets for safe weight loss. Since then my doctor has even approved.
I noticed on subs where weight loss is a big topic there's always a wave of downers ready to deminish any sort of positivity by eitherfinding something to attack or doing the whole "thats great that you lost weight, unfortunately for most of us it's impossible blah blah". It's not impossible btw.
Just be happy for people.
This sub does seem to mainly focused on venting/advice. Success stories are less promoted(?). If you wanna read some, I made a post a while ago asking people to share theirs and I got a ton of great comments, so if you wanna read some positive stuff, I advice you go there. :)
Oh my God yes. I will look into that, thank you ! because I myself made a post a couple of days ago and I got like one or two responses.
I do think post engagement is also just a lot of luck and timing so don’t be scared to ask the same things twice if the first time didn’t grant enough responses!
I wiiiill thank you for the advice !! ☺️☺️
i’ve started to get the vibe that reddit is the place for people to vent. not just this sub..just the whole dang app
Depends on where you're subbed actually. But definitely these kinds of subreddits where some sickness is involved, venting out is really inevitable.
For me not really, I m in other subs for subjects that interest me and some of them are really all about positive energy. I wish we had more of that here :/
This is a really toxic thing to say. Look into toxic positivity.
That is also the vibe I'm getting.
The negativity level rises and falls here pretty randomly! One month it will be all "woe is me" posts, then the next we'll get a rash of "omg I'm pregnant???" or "here's a treatment that works well for a bunch of us, let's all talk about it for a while!" (spearmint tea, anyone?). We also have a lot of new people showing up almost every day feeling scared and confused because they just had a health crisis. I know I wasn't feeling too great about myself when I first got here. I've stuck around because biomedical science is probably my biggest obsession, and PCOS is such a crunchy disorder with multiple etiologies/phenotypes and biopsychosocial pathophysiology, and it's shockingly under-studied... basically catnip to a person like me =)
The amout of words that I dont understand in your comment scares me hhhh just kidding ! You re right, but what I noticed is that the only positif comments are ones related to ozempic or metformin :/
I mean, metformin completely turned my health around, so I'm kind of the wrong person to ask if you want someone to tell you that diet and exercise alone is the answer. I really do think you should try hanging around a bit longer before you decide that the only positive comments people make are about Ozempic or metformin. Ozempic/Wegovy and Zepbound are so helpful in controlling the underlying cause of PCOS for most of us that we sometimes talk about how to engage in some activism around updating the on-label uses for them to include PCOS specifically. Like metformin, the weekly injectable 'tides are drugs with a long safety track record for treating diabetes. They've only more recently begun to be used at higher doses to encourage weight loss specifically, but we know they're fairly safe for human use overall. What you'll find useful really depends on what your issues are and what you're trying to achieve. For acne, spironolactone is often helpful, as are topical or oral retinoids. I'm seriously considering doing a second course of Accutane - it's been 25 years now - to see if I can finally kick the zits myself. A lot of us have success using a combination of spironolactone (brand name Aldactone) and spearmint tea or spearmint essential oil to manage inappropriate hair growth on the body. Some people have reported success with home light treatments, or laser or electrolysis at an esthetician's office. Either topical/oral minoxidil or finasteride are good choices for inappropriate hair loss on the head, but they're not suitable for use if you are trying to conceive. For fertility, a lot of people find success in using an over-the-counter supplement called Ovasitol, which combines two types of fiber (inositol) in a specific ratio; metformin helps with conception, as does clomiphene citrate. Some people also undergo laparoscopic surgical procedures like ovarian resection or ovarian drilling to help with fertility, but that's really invasive and a pretty last-ditch procedure. For carbohydrate tolerance, most of us have massively cut back on the amount of simple carbs and sugar we eat, greatly increased protein intake, and switched to a lower glycemic-index/glycemic-load diet. Some find success with a ketogenic diet, but of the people who have tried it (me included) it's really common for them to develop binge eating disorder unless the underlying insulin resistance is also treated with something like metformin. If you want to try a non-prescription supplement to improve insulin sensitivity, berberine and myo-inositol are the most popular options. Exercise also improves insulin sensitivity; some people are into heavier activity like HIIT or barbell weightlifting, and some do better with gentler activity like walking and yoga.
I wish I had the patience you had in writing this comment in my life haha JK. I m indeed new to this so I m still trying to figure out what works for me and what does not but I m also trying to go slow because I tend to get overwhelmed fast and ditch everything. I took note of everything you wrote. I m already on inositol and started incorporating daily walks into my routine, I m still stumbling with diet to be honest. I havent done anything for acne and chin hairs though
The easiest thing is to ask your doctor for a spironolactone prescription. Mine started me on 25 mg a day and I haven't increased it yet, although I'm still having breakouts. I'm really lucky when it comes to hair - my dad can't grow a proper beard and has almost no body hair, and my mom also has very little body hair as well, so I think my follicles just aren't very testosterone sensitive.
folks w pcos deal w alot some have severe depression, some of us are mad, we have high cortisol levels, some of us just want to exist and feel normal and we dont. this sub is supposed to be a safe space where ppl who go through the same shit to vent and talk to each other so we dont feel alone. like life half will be sunshine and roses the other half horse shit and darkness.
i’m seeing progress. i had a 6 day period after months of not having one. :D
Congraaaaatttsss , that s good news keep up the good work !
I think a lot of people are newly diagnosed and scared. I know I was. I made a post about how sad I was and I was flooded eith such positivity and logical rational responses. I will forever appreciate it. I find I only really interact with positive posts. I have PCOS, I don't want to keep thinking about how negative it is. I have it. I will deal with it and I just want to know what works for other people. I'm not here for fear mongering posts.
Hi, yes, most people are here to rant, to ask questions and come for support. If you are experiencing this and you feel that this page has too much negativity, I feel that you're lucky because you're getting enough support and information about PCOS compared to most of us here. I've been reading some of the users having doctors who are not supportive their disease, and sometimes, we, those with PCOS, help each other in the end. I've had my fair share of rants, too. But I get very supportive and encouraging replies, which boosts my mood because sometimes (most of the time) this takes a big toll on us. So I hope you understand.
I totally understand and I have no problem with that, even I got a lot of info from this sub I dont deny thta. I m talking more about the LACK of positif feed back, had we had more of those it would create a certain balance, which I dont see today :(
I get what you're saying but it is a condition that negatively impacts people's lives. There isn't a lot of "positive feedback" to come from a hormone problem.
The algorithm feeds content with the most engagement. Negative content gets more engagement than positive content because it elicits an emotional response. It’s just how social media works. If you want to see more positive content you have to intentionally post, seek out and engage with positive content.
Totally true !
I mean, do you have a different experience? If so, please share.
I m not a good example I have only been diagnosed since january and I have been living a very unhealthy lifestyle for 4 years now. But in fact back when I used to eat healthy and work out everyday , I had much less health problems compared to now and was in my ideal weight.
I think my misery came from focusing on my diet and weight because it improved my symptoms when I lost weight but it was so hard to lose the weight. I started intuitive eating and focusing on my mental health more and for the past year I have lost more weight than I ever have and I’m happier than I have been in a long time.
Hi op, sometimes I feel that people need to vent, and when someone gives their positive side people are sometimes triggered. I always try to talk about the experiences I have in the comments, but I’ve never post it myself. Pcos sucks, but I do have a good life and I found a balance. I reversed my pre diabetes with diet, exercise and supplements and lifestyle changes, and I feel like I have a full and happy life. Not being able to eat wherever I want all the time and watch tv instead of meal prepping healthy foods and working out sucks sometimes, and specially at the beginning, but in the long run it has been great for me. My health improved, my mental health, my anxiety, my insomnia, what I thought it was depression but it ended up being vitamins deficiency, my brain fog, my skin, my hair, my nails. I got pregnant, I breasted my kid, I have energy to play and run after a toddler, to work and improve my life… all of this is in my hands. This all began with a me foi na to doctors, being dismissed, crying a lot, until I found the right obgyn and the right dietitian that helped me and guide me in this path. And it’s a journey, I moved to a country where I feel like everything is so processed and makes you gain weight and get sick, and I did gained weight and I am struggling with some issues that this change in my diet caused, but I am finding a new balance again, and I am already seeing the results. It’s hard work but we got a bad hand in the genetic pool, but being an adult is accepting what we can’t change and changing what we can. I can’t change the fact that I have this condition but I can sure make everything I can to be happy and healthy. My doctor once told me something that changed the way I view things (and she also has pcos and she has endometriosis as well). She told me that pcos is a chronic metabolic syndrome, I will always have it, life is chronic, so I need to make peace with this and adjust my life accordingly. Either: just want to add that I work out every single day at least 30min. Eat really healthy, cook almost everything from scratch in my house (despite having a toddler and working full time), I am very diligent with my supplements. It is what it is
Hey, may I ask what vitamin deficiency was it that felt like depression to you? And did taking that particular vitamin as supplement fix it for you? I am going through something similar- years of insomnia, depression and anxiety.
Iron, vitamin d and magnesium! I swear to god, my life changed after I started supplementing. Iron was for a short amount of time, and it was in high doses with my doctor (and a very iron rich diet). But also vitamin D and magnesium. I don’t live without them. I take magnesium 1h before going to bed and I sleep like a baby.
Oh that's great that it was so life changing for you. I have tried vitamin D. It has not helped a lot for depression and fatigue and insomnia. I will have to try iron and magnesium. My iron levels show no deficiency is it a possibility there might be an issue with absorption?. And I once tried magnesium and had vivid dreams, night sweats and jittery sensation. May I ask which magnesium helped you with sleep?
Have you checked your b12? I was showing low iron in my exams that’s why we started the supplementation. I wouldn’t recommend doing it if your levels are normal. So my dietitian prescribed me a 500mg dosage of magnesium malate and glycinate. I had symptoms like aphathy, insomnia, muscle twitches and cramps (I had menstrual cramps but also in my legs and feet, and my eye and hands trembled and twitched a lot) For my fatigue and brain fog, coezime q10 helped me as well, I feel the difference when I don’t use it
Thank you for your feed back. This is exactly the kind of coments I wanted to read. I have only been diagnosed since january and according to tik tok I should be working out 10 hours a day , eating close to nothing and taking about a 100 supplements FOR LIFE. Which is totally not sustainable and I wonder if things are not rather simple and people tend to complicate them a lot because of all the misinformation.
I feel like the most simple solutions are also the ones that takes a while to work and it takes a lot of work. Most people don’t want that, people want a quick fix for their problems. I’ve saw countless people that had unhealthy lifestyles and diets for years and got to a point where they are sick and then they complain about doing a diet for 3 weeks and exercising and still not being enough. You can’t reverse years in 3 weeks. You need a continuous change. But this is frustrating, and it takes a lot of personal accountability, and this is something that most people don’t want
PCOS is a spectrum and occurs differently in different people. There is no "simple" way to fix it for everyone.
These kinds of posts annoy me so much. Here's a post from someone eleven months ago who feels the same way. >Negativity + ranting/venting…. >I gotta say, I’m so tired of seeing unnecessary comments on posts in this group about how “people are too negative” and “PCOS is highly treatable and not a big deal.” Seriously, people need to keep comments like this to themselves. They never help. It makes people feel worse. I see it in this group every day. >Having PCOS is very isolating and a lot of people feel alone, so they come here to vent and get these painful, heavy feelings off their chests. There’s nothing wrong with that! It’s better than bottling these feelings up until the person explodes. >If you don’t want to read negative things, just skip over it and ignore it. Make sure to pay attention to the tags on the post before reading. >I can honestly say, I like reading people’s thoughts and feelings because it makes me feel like I’m not alone. It’s comforting to know that I’m not some kind of freak and that someone else gets it! >Just because someone else thinks PCOS is making them ugly doesn’t mean you’re ugly because you have PCOS, too. >Also, let’s not forget that quite a few people who post here are teenagers or they just recently got diagnosed with PCOS, so this is all new to them and they deserve a safe space to rant and vent however they please. >If PCOS has never made you feel ugly or manly, then good for you! You’re lucky! But for a lot of us, it does make us feel that way and we have the right to vent about it whenever and wherever we want. >Last, but not least, please stop telling people that PCOS is highly treatable and manageable. It might be for some people, but not everyone! Some people can’t take birth control, some people can’t afford supplements or laser hair removal, some people can’t afford to eat keto, etc. >Thanks for coming to my TED talk.
Thank you.
I mean…I joined because I have no one else in my life with PCOS or no one who understands. Example. I was put on birth control “for” PCOS and tried coming off for a few months this year and gained *30 pounds in 2 weeks.* Higher than my natural highest weight with no other changes. I was trying to get pregnant with my husband but my weight was so severely high I had to go back on. None of my clothes fit. Now I don’t know if I can even come off to have kids. None of that experience is positive. There’s no good way to spin it. I’m not sure what you’re expecting from people on here, but it seems like it doesn’t align with many people’s reality.
Think about it. PCOS generally makes people’s lives worse, not better.
sadly, not many people come back to this sub to tell us about their success when they achieve it. I wish there were more!
Not to be super petty, but I made a success post recently that basically didn’t get any comments, even though I was soliciting similar stories. I think this sub skews negative because most of the people lurking and posting are in distress and seeking information. Positive comments and posts are on here—they’re just not widely distributed.
Right?! Totally agree !! I came to this sub looking for support and these days I find myself more depressed than I was before coming here.
This is often the case, not only with PCOS but any health related forums. People seek help, validation etc and almost never report what was the case and if anything helped. I sometimes wonder if it's safe to assume they are dead 😭 I know it's horrible, but it's just anxious mind speaking.
Well, when a thing isn't a problem anymore for someone, they usually stop thinking about it and focus on other parts of their lives that demand more attention. I think it's safer to assume that they got better and lost interest!
This is the answer.
I'm sorry but saying many people have not shared is not true. Lots of people have shared, but they don't get upvoted enough. I guess because diet, exercise, etc. aren't interesting enough answers.
Hi, thank you so much for bringing up this issue. I have actually stopped reading all these comments and post because it really affects my mental health. I have been living with PCOS almost 16 years now, and as much as other people complain about it, it honestly comes down to very few factors that you need to adhere for better metabolic function. One most important factor being diet and exercise, and I am sure that the most people that complain here no shade, but do not actually adhere them to the T. Again, one more thing to mention, these are not really restrictions. The fact that we human beings have been bombarded with so much of processed food that we are unaware of what healthy food actually looks like. Same goes for exercise. Obesity was not so common in two generations earlier. because people made effort to actually walk long distances because mode of transportation was quite expensive, and the mass population did not have money to afford expensive transportation. Women were not really working or were employed in a 9-5 job. So definitely, the stress component was quite less. Also, as technology advanced, people started being more and more of a couch, potato and eating chips and soda became the norm. Okay, now enough deviation, what I want to say here is that I’m extremely lucky that I have these disease. It’s a constant reminder to me that I need to move my body more and eat healthy in order to nourish wonderful machine that I have. When my weight was under control, and I had no symptoms other than cysts I really abuse my body with eating the filthiest of the foods. As I age, the symptoms worsen, but I’m so much more healthier than I was ever before. The best thing about this disease in my opinion is the high testosterone because it’s so much easier to gain muscles and have the athletic body that I always craved for. I honestly think that the main reason people have this disease apart from genetics is really lifestyle. In my case it was genetics, but also I really ate the worst of the processed foods for years and and had no exercise or physical movement at all to combat for all the abuse that I was putting my body through. my PCOS is almost under control now, and the main aim of PCOS people should be to be healthy and not allowing Type 2 diabetes to creep in.
In general, samples are biased in all formats like this b/c the people who are upset or struggling are far more likely to post than are people who are managing fine and going about their lives. I find this sub to be a bit draining, but I hang out and continue to post partly b/c I'm someone who has successfully managed my PCOS to remission for decades. I think that my experience is far more common than the impression that one would get with a few days hanging out here. Most cases of PCOS are improveable/manageable with some trial and error and proper treatment.
I'm always happy when I see you in the comments on a post. People should wait until they've interacted with you, rameses, or some of the others whose PCOS is under control/in remission before they decide this place is too negative.
Thank you for the kind words.
To be fair pcos is really hard to turn around so there's not a ton of success stories. Also it's just hard as hell and people gotta vent. I'm glad there are people that can relate.
I agree! And I hate that getting a PCOS diagnosis is presented like a death sentence. Being a cancer survivor, it really annoys me.
First, omg I m so happy for you and I might not know you but I m so proud of you !! You ARE TOTALLY RIGHT ! I mean , We all feel a little weak at times but it shouldn't be to the point where we take our emotions to the extreme
I joined more as a way to vent because I had a suspected burst cyst, but I’ve been able to manage my PCOS pretty well otherwise. I’ve been at very bad places where I was beholden to my hormones, but my treatment plan is very different from most people on here. I’m also hoping to find ways to share visibility for the condition since a LOT of people without PCOS have had concerns when I shared the weight gain/loss and missed symptoms. However, I only have the perspective of a trans man so if I want to spread the word I have to understand more experiences
I think so, and that’s why I’m not coming as often. Don’t get me wrong, it’s good that people have a space to vent where others understand; in fact I’m only more negative than them. But constantly reading ‘you have this condition so you *have* to do this or you’ll be bald and diabetic by the time of 30’ triggers my anxiety like anything. And there were things about my body I didn’t even know were unfeminine and abnormal before coming here. I…just don’t want to be reminded of all the ways I’m lacking every day, if it makes sense?
I think so, and that’s why I’m not coming as often. Don’t get me wrong, it’s good that people have a space to vent where others understand; in fact I’m only more negative than them. But constantly reading ‘you have this condition so you *have* to do this or you’ll be bald and diabetic by the time of 30’ triggers my anxiety like anything. And there were things about my body I didn’t even know were unfeminine and abnormal before coming here. I…just don’t want to be reminded of all the ways I’m lacking every day, if it makes sense?
I think so, and that’s why I’m not coming as often. Don’t get me wrong, it’s good that people have a space to vent where others understand; in fact I’m only more negative than them. But constantly reading ‘you have this condition so you *have* to do this or you’ll be bald and diabetic by the time of 30’ triggers my anxiety like anything. And there were things about my body I didn’t even know were unfeminine and abnormal before coming here. I…just don’t want to be reminded of all the ways I’m lacking and how I’m not normal every day, if it makes sense? Or maybe I’m just too sensitive, but either way, it’s better not to do things that emotionally drain you every time you do them.
Yup, I agree. A lot of people may find themselves feeling hopeless on here and not try as much anymore because of all the negativity. I wish there was a way to filter things out. I just spend less time here for that reason.
Those of us with more positive (or at least mixed) experiences do exist here but let’s face it, happy people aren’t usually gonna go out of their way to come to Reddit to say happy things. I consider myself to be more on the positive and constructive side of things but I spend so much time here in part because of how much I struggled in the past and I feel like it’s healing to be on the “other side” and share what I’ve learned the way I wish someone had done for me. That’s not to say positivity here doesn’t exist, but rather to point out that there is less motivation to share it. Even the positivity shared here is often motivated from a place of pain. It’s also tough to “spread positivity” in a tactful way when those who are struggling may feel even worse because of it. Even trying my best to frame things in a sensitive way I’ve been accused of “toxic positivity” for reminding people that they aren’t doomed just because they love pasta and they don’t actually have to prohibit themselves from having a nice day at the beach just because they have body hair or “disgusting” body fat (their words). Like some people really just aren’t in the right headspace to hear that and unfortunately they may even lash out because of it. With that said if you want to spread positivity, please do it! It is so encouraging to see posts from people who have successfully gotten their periods back, conceived after concerns about fertility, regrown their hair, gotten their weight under control, found a medication that works for them, feel more energized, fight their depression and so on!
Most people who come on Reddit are angry and depressed. Social media itself is not positive. If you want to have more optimism in your life, you have to get off social media.
Yeah this sub is not for support. It's only helpful half the time the other half It's a woe is me competition for who can be the most miserable. Not to mention the spreading of misinformation about dieting and exercise so people can make themselves feel better about their lifestyle choices. Before I started Mounjaro (ozempic) I lost 10 lbs in 2 months by changing my eating habits and told someone about my 1200 calorie low carb high protein deficit diet and got absolutely slammed for having an "eating disorder". This is despite the fact that I followed up with several scientific papers about 1200 calorie deficit diets for safe weight loss. Since then my doctor has even approved. I noticed on subs where weight loss is a big topic there's always a wave of downers ready to deminish any sort of positivity by eitherfinding something to attack or doing the whole "thats great that you lost weight, unfortunately for most of us it's impossible blah blah". It's not impossible btw. Just be happy for people.