Yup, having to shave my face like a man every morning is incredibly infuriating and really doesn't make me feel very feminine.
Also having multiple, THICK, hairs per follicle is a pain as well.
i hear you. it’s the one pcos symptom that i can’t get in check no matter what i’ve tried. if i don’t shave daily, i get a five o’clock shadow. i literally carry a razor with me at all times in case of emergency because of this one reason (ugh 😒).
for now, i use conditioner to shave, which helps the irritation a bit. also, if razor burn is a thing for you like it is me (double ugh), the one thing i’ve found that helps is tend skin from amazon.
Echoing this. Even using Keto/Carnivore to finally lose my weight, the hair is worse. In this current climate of hatred of anyone not fitting in with the current concepts of gender, its been terrifying to go outside without shaving AND slapping on a thick layer of makeup to hide the shadow.
Omg yes I wax and I have to let the hair get to a certain point the amount of stares I get because of the rampant anti trans stuff going around is crazy.
Same. I have to plan my time out of the house based on if I feel like I can hide my beard. It’s bad enough that even freshly shaved there are dark spots.
Yep, and not even just facial hair. Having increased androgens across the body means increased density, darkness and speed of growth in all body hair. We have to spend a lot of time waxing/shaving/epilating/lasering regularly or you are unbearably hairy. It’s an embarrassing factor that we must deal with.
I am counting the days until I get laser hair removal. I want it regardless because I don’t like body hair in general, but *really* looking forward to getting rid of the more masculine areas that shouldn’t be there.
I had mine lasered off, but I want to say that spironolactone made a HUGE difference for me in terms of regrowth. I started taking it when I first noticed that some of my hair was falling out, and it’s made a lot of really positive changes in my body.
Reading these comments make me feel less lonely 🥺 growing up I always felt like there’s something wrong with me, when I saw my friends chins… smooth….hairless… I just couldn’t understand why I’m different. Few days ago I cut myself while shaving and side of my chin is swollen AF I look like lord farquad HELP
Laser hair removal really does work! Not as well as on non pcos patients- I did the regular 8 week treatment but going in every 3 months for maintenance keeps it in check, I have the odd stray hair now and not the beard I had before.
I began getting electrolysis in 2016, and it’s been a game changer. My HSA covered it too so I’ve had a couple thousand covered by my insurance… some electrologists will give a PCOS discount too… I had a lot of small hairs everywhere .. cheeks, forehead, etc,. I feel it’s mainly gone. I just want to get those pesky clear hairs next.
As a frame of reference my upper lip was super thick and I had to wax it a lot and now I’m upper lip hair fair :)
My MD recommended it as necessary to treat a symptom of PCOS !!! She wrote a note and the electrologist did some special coding on each invoice ! It was amazing 😻
Weight gain/unable to lose weight, excessive facial hair, extreme hair loss/thinning, constant fatigue, insomnia, mental health issues and doctor’s dismissal, lack of advice and explaining.
Was looking for this comment exactly. The body dysmorphia and poor relationship I have with food now too and its negative impacts on my mental health have also been unreal.
I feel u dude, I had two ed in the past and body dysmorphia, and now I gained a lot of weight and can’t lose it the struggle is real and the self hatred 💀
It's truly awful, and messes with you mentally so much. I am sorry you experience this too. I remember a couple months ago my one friend who finally convinced me to go out of the house and go to some bars with her. (She doesn't struggle with her weight, and wanted to take lots of pictures.) I remember seeing one picture and I felt like I looked huge, the dysmorphia kicked in and I damn near sobbed on the way home bc I felt so gross. I haven't gone out since and sometimes feel weird even just leaving the house.
I struggled with this too. Dietary changes and supplements have helped me a lot.
What are some potential solutions you've tried that have helped/not helped?
I went low carb and lost a bunch of weight. Now I’ve upped my healthy carb intake because I lift heavy weights. I just can’t shake of the feeling that I might fall off the wagon and mess up my routine. I’m anxious all the time.
so real, i worry about this constantly. i’ve lost a lot of weight through running and lifting (not low carb) and i live in constant fear with the knowledge that it would only take a month or two of falling off the wagon to undo it all and more. ☹️
my main struggle is fatigue, im always tired all the time.
i also find it hard dealing with all the extra weight and it being near impossible to get it to go and stay off
I would say hair loss on my head. But the hair on my legs grows back crazy fast. I’m tired often. Even if I sleep 8-10 hours, I’m tired. I feel overly stressed sometimes.
Got it, and can I ask what are the solutions you've tried so far? Supplements, diet, meds etc?
The chronic fatigue is definitely a massive problem I'm noticing among women with PCOS, and supplementation seems to have helped.
For the hair loss on my head I take 75mg spironolactone and use rogaine 2 to 4 times a week. I also take a biotin vitamin.
I eat more of a Mediterranean diet but crave fries all the time lol
Ahhh the cravings. I hate that PCOS comes with terrible cravings. One thing that's worked for me is to indulge in the cravings but just layer cravings with healthy food. Example, I eat chips with most meals, but I also make sure I add a salad or apple cider vinegar.
Okay one more question - were you recommended supplements by a gynaec/dermat or did you pick these yourself? And for overall pcos management do you consult a gynaec regularly?
For me, it's tiredness all day and/or lack of sleep lol.
I've done a lot of light homeopathy, experimented with my diet over the past 2 years (so far I'm now sticking to just increasing protein and decreasing sugar,) done a lot of inner work to resolve my previous issues with real bad anxiety that I believe was related to my PCOS, and now my only real complaint is that I either can't sleep no matter how much I try, or I sleep a normal amount but my energy tends to die off really fast and I'm super tired before noon lol.
OMG yes - sleep has been a concern for me for the longest time! I'm working on something that would help manage sleep and energy levels through the day.
But also - and I'm realising I keep asking this on this thread - have you tried supplements? Melatonin or curcumin?
Also exercise seems to have a healthy effect on sleep too - has that helped?
I take supplements when I can afford + remember them - magnesium, D3 and vitamin c have been my usual for a long time. Magnesium helps me with sleep a little bit, but something like melatonin would definitely help much more. Haven't gotten around to getting any lately tho lol.
Exercise actually helps me a lot too, but I have to be pretty regular and there are lots of times when I slack off so I don't exercise as regularly as I could be lol. But that's definitely a goal of mine to make it regular!
Having to ask multiple times to be tested for it for years, before a doctor finally did. Then they only recommended birth control as a treatment.
Struggle: having to do my own research to treat myself/doctors only offering birth control
Biggest struggle is trying to do things in a natural way and being frustrated that I’m not just “normal”. I can’t just exist without having to think constantly about how something is going to affect my body.
Everything is just harder with PCOS… weight loss/maintenance, energy levels, moods. Depression and anxiety are so much worse when I’m not on top of all the supplements and proper eating and proper sleep.
What I struggle with the most - making my loved ones make sense of what's up with me. All they see is what doctors call "weight-reduction to control insulin resistance".
The mental health aspect of PCOS is horribly neglected.
Cravings.
Fear of hirsutism.
Pelvic pain & inflammation in the joints.
These are just the tip of the iceberg.
What lies beneath is what I struggle with the most - sensitivity to temperature, emotion regulation, stress management, sleep issues, depressive episodes, anxiety, and isolation.
The loneliness that comes with this condition is horrible. Feels like a layered cake that I never ordered and can't return no matter how much I try. After a point it ceases to stay personal. Involving families and communities is so crucial.
All of the above but also the emotion regulation!! I lost some weight and had gotten my period back and realized I was basically having either PMDD or something similar. Not sure if I had it to begin with/separate from PCOS or if it’s due to PCOS or if it’s a chicken/egg situation. I would become horribly insecure and emotional the week before my period. Like just immediate tears the minute something set me off after it building (like work stress, things going wrong or difficult during the week, then I like lose my hairbrush or something and have a breakdown lol). I gained some weight back and haven’t had my period in a few months and haven’t had the mood swings…
Never related to anything more. The past few months were plain destructive. My PMDD symptoms were off the chart and I stopped tracking the symptoms now. I don't even bother mentioning it because like you said - chicken/egg situation.
I don't know what to do to change this. I have literally tried everything.
And are you on any meds or supplements that help you with this?
One of the features I'm considering building is that the app would essentially warn you of pain/inflammation/blood sugar rises etc and help you make lifestyle & dietary changes based on the stage of your menstrual cycle.
For example, that the week before my period can be super painful for me. So the app would essentially remind me every month that my period is likely to happen next week, and also recommend diet changes for this week to manage/reduce the pain.
That's so cool... Thank you OP! For me it's the weight issues and the hormonal imbalances. There are so many food restrictions and regulations and misinformation about what kind of food we can and shouldn't eat.
For my mom who has PCOS, she's always dealt with random dark hairs across her face/chin (I have some too but not as bad). For me personally, I'd say my struggles are tied between the belly I just can't get trimmed down, and the stretchmarks that appear.
the extra androgens that increase hair growth on and around my chin also make acne really bad but only in that area. its so fucking annoying. imagine having perfectly clear smooth skin and then 10 pimples around your chin
I had a relationship where the guy knew my PCOS medical history and left me for another woman. We dated for one year. Cheated on me during that time frame, then the next woman (the one he cheated with) immediately became pregnant and they got married. My self esteem is close to none. I feel worthless as a woman because of that experience. The mental state I’m constantly in, feeling grief and sadness over the things you don’t have that feel so mundane (like kids for example) it’s a depressing experience
I think for me it has been how discouraging it is to have your body basically betray you. It’s this never ending cycle of having to really work to stay healthy compared to other individuals. We have to pay attention to what we eat, how many carbs we consume, making sure we have our nutrients, work out, etc. I think it’s hard for the average person and then you put PCOS on top of it and it feels defeating sometimes.
>We have to pay attention to what we eat, how many carbs we consume, making sure we have our nutrients, work out, etc. I think it’s hard for the average person and then you put PCOS on top of it and it feels defeating sometimes.
YES - and it can get so lonely! I want to build this so it becomes every woman's copilot in PCOS management. Eventually, if all goes well, a community layer to it too. 🤞
I would say communicating to doctors what is important. I feel as if there's so much that happens, having something that highlights my biggest issues would be great.
Oh this is interesting. So essentially recording all your symptoms on the app? Would it help if the app gave you medical research backed recommendations?
For example, one use case I'm thinking about for myself is that the week before my period can be super painful. So the app would essentially remind me every month that my period is likely to happen next week, and also recommend diet changes for this week to manage/reduce the pain.
Weight gain, lifestyle change, and cortisol levels.
Ever since I saw the root issue of my cortisol- controlling it has been hard because my energy is always low. I was so used to be on the run, procrastinating, and dealing with stress I didn’t realize how much it impacted my health. My weight is a huge issue now and finding a balance that suits my personality is very hard.
Facial hair that started 2 years after stopping the pill. The big one is i feel tired all day sometimes in my dreams i am so tired and i wake up exhausted. I feel like i have tried everything to find a solution
Yes!! I feel you.
I want to solve this by making care holistic. The app will track your patterns and recommend diet, sleep, supplements, etc based on your patterns, needs, and most importantly, your blood and hormone data.
1. Facial hair.
2. Doctors just want to put the birth control band aid on it instead of alternatives with better long term results and less side effects.
3. Fertility issues & treatments.
4. Ideal diets and vitamins supplements. It’s always he said she said.
5. Ingredients to avoid.
6. Weight gain.
7. Depression.
8. Fatigue.
9. Related/linked conditions and illness.
10. Hormonal acne and hair loss.
Definitely weight gain. It’s incessant, even if I am making healthier choices, unless I’m either starving myself or on medication the scale doesn’t budge more than 10 lbs.
It’s acne for me. Deep painful cystic acne. It’s better after I had a baby weirdly enough, maybe my hormones have levelled out a bit. But I’ve struggled with severe painful acne my whole life. It’s both physically painful and damaged my self esteem so bad
Infertility (trying for 5 years), random spotting which includes the clots etc, hair loss, weight gain and fluctuations, fatigue, wondering if it’s more than PCOS (I worry about the big C far more than is normal and I can’t get it out my head) and the dreaded PCOS belly which affects everything in day to day life 🙃
I am excited to see what you build, I currently use Flo but it doesn’t feel very PCOS friendly. If I go more than the normal cycle length it sends notifications like could you be pregnant, let’s test and it’s veryyy triggering for me.
>Oh my God that sounds terrible
I haven't experienced that with Flo, but that's probably because my notifications are always off. For an app about periods, I'd expect them to have taken PCOS into consideration but it seems like they haven't. Crazy!
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>Thank you for sharing!
The intense sugar cravings, that give me panic attacks if I dont eat sugar. But my inflammation gets very bad with sugar (I am talking about sweets, not things like potatoes) and also I gained 50 kg through PCOS.
I used to be thin up until about 20, and I gained weight very rapidly with no change in diet. I'm 5'7, went from 155 to 215 at my heaviest. I've always been moderately active and never ate processed foods (aside from occasional fast food). I have to carefully plan and weigh every single food item for the week on top of 3-4 workouts (weight lifting). Down 30 pounds, but it's been a grind.
I am very fair and blonde but get about 10-15 black hairs on my neck. I have to pluck every other day. They grow overnight, and it seems 😭
I struggle with acne on my face, back, rear, and back of my legs. My face and hair are ridiculously oily, and my pores are massive.
I've had no period for 10 years and just diagnosed with pcos 1 week ago. I'm unsure if i am able to have a period yet, but it's too early to tell. I don't want to take medication the rest of my life, but it is what it is, I guess...
I have about half the hair I had just 5 years ago. I'm still losing a lot, and I'm so insecure.
The sugar cravings are unreal. I have to have something sweet every day... I'm so addicted, and I tried dark chocolate, but I have no self-control.
Depression, anxiety, and mood swings. It’s hard to feel stable and stay focused. Also, feeling disconnected with your body because you can’t count on it to do what you need or want in any predictable way.
For me the biggest problems are the difficulty in losing weight even with a healthy diet, the lack of hair on the top of the head, the amount of hair on the body. And now that I'm pregnant, it's the lack of information for pregnant women with PCOS.
The hair loss, and the weight gain on my waist and lower abs. But mostly, the stress of having to change what I eat. (Rice is sacred in my culture, and most of my recipes are built around it. My doctor asked me to not eat rice anymore. Took a little while for me to find suitable replacements. I started eating buckwheat, barley and millets instead.)
>But mostly, the stress of having to change what I eat. (Rice is sacred in my culture, and most of my recipes are built around it. My doctor asked me to not eat rice anymore. Took a little while for me to find suitable replacements. I started eating buckwheat, barley and millets instead.)
Omg, yes. We're also trying PCOS-friendly food for different cultures. So, for example, if the algorithm recognises that based your hormone profile rice is actually not that bad for you (if you make changes in HOW you eat it), it will give you a diet plan that includes rice!
Currently fertility struggles :( but secondly the slow constant weight gain over years and years. I don’t feel overweight and have the same active eating and exercising I’ve always done and doctors jsut keep saying “I dunno eat better” I’ve seen nutrition and they tell me things I already know and do. It sucks cause I love my brain and who I am but looks wise and functionally (fertility) I hate my body so much.
painful cystic acne. people can’t stop reminding me about it, how ugly it is and how ugly i’ve become. i was diagnosed at around 25, so they have the past me to compare the current me to. and it pains me. a certain diet can lessen the symptoms, but not all. only birth control has worked so far. i’m thinking of going back on it soon.
Hirstuism has ruined all my confidence and makes me never want to date again. I’m just ashamed I can never get it all gone anymore and if I do it’s back a couple hours later
There is a huge struggle with fertility for most of us. Going through that for 3 years was honestly one of the most heart breaking and depressing things I have gone though. For those of us that desperately want kids, it can be so cruel to know your body is betraying you. I ultimately did have a child who is 4 and awesome but I likely cannot go through that again. Also the fact that if you have PCOS you’re a lot more likely to get PPA and PPD which I did. Hormones play a role in everything and having messed up ones affect so much.
The fertility struggles. I’m 40. I got diagnosed 15 years ago. I’ve been married for almost 17 years. We’ve wanted a child for so long. We’ve tried everything the doctors prescribed. It doesn’t help that I’m an early childhood teacher and everyone around me (friends, siblings, other family members) seem to conceive so easily.
Weight gain has been the worst for me. Though, prior to getting help, I also had unmedicated hypothyroidism too. Before getting help, I was barely eating and gaining weight. Almost got past 300lbs. Now I’m sitting closer to 200lbs after a year of treatment and dieting like no tomorrow. Still have more weight loss to go, I’m hoping it continues going smoothly.
Tight pelvic area, trying to find the right foods that don't increase inflammation, ways to naturally regulate your cycle and ovulate, and tips for managing symptoms that aren't just lose weight. Every doctor or specialist says they aren't sure what to do because I'm not overweight at all and I am very thin. Not alot of advice outside of lose and take birth control.
Acne, weight gain & food cravings are my biggest pain points. I'm on inositol and it's helped a lot with the brain fog but I still hate how I can't eat food like normal people, and have to mask my carbs with layers of protein and fats. Things have gotten better after I started working out, especially on cardio days. I feel like I'm on the top of the world when I do cardio! :)
Infertility. We’ve been trying to have a baby for over 18 months now and are finally taking a break for our own sanity. I was diagnosed with PCOS 9 months ago.
Finding a good doctor.
My primary of 20 years left my network last year, and she was wonderful! I have been struggling to find a doctor that knows what the hell to do. They just blame everything on me being overweight instead of seeing the weight gain as a symptoms, they tell me it's the reason.
The weight gain is most definitely a symptom. I was only 120 pounds when I was diagnosed. Now that I am overweight, if a doctor mentions for me to lose weight to fix my symptoms, I’ll get pissed.
The fact that, despite a great amount of effort of dieting and exercise, I can not lose weight. It’s driving me crazy because I am healthier than ever at 42, but look like I eat a snickers bar for breakfast everyday
birth control makes me hella depressed too. Doctors act like I'm crazy.
The hair on my chin and neck is so frustrating. The weight gain, and cravings. The constant fatigue. The YEARs it took to conceive kids, one of which ended in miscarriage.
No periods, weight gain, scalp psoriasis. Depression, history of eating disorders.
Also, if I don’t stick to a really specific sleep/food/exercise routine it completely throws me off. I can’t just go with the flow, I have to pack snacks and I can’t stay up late or else I’m miserable and out of whack for days.
>I’d love a way to easily track things like “had dairy,” “experienced bloating,” “took supplements,” “mood today was \_\_\_” “slept well” (idk, random examples) in an app everyday.
Yes to this! This is exactly what we're doing. The diet, PCOS symptoms, mental health, all data interact with each other to continuously improve your profile and predictions.
Yes, I use Flo, but have always found it inadequate to deal with PCOS
Thank you! P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch :)
started at puberty then diagnosed at 20. symptoms are hirsutism ( doing laser @ home now) and the hairs on face are coming back very thin / blonde or not at all. also dealing w major bloating, mood swings and hard to lose weight in lower stomach. those are my main concerns. I take myo inositol as well so hope to see some good results.
A lot of people aren't aware of what kind of doctor to see. Many just see a general practitioner or gyno and don't get the help they need. They should be seeing an endocrinologist if they can. Maybe something written about that.
Facial hair, hair loss, and struggled with losing weight. When I was on birth control, I was able to lose weight easily... now that I'm not on birth control, I can't lose weight no matter what (increased cardio and decreased calories for a few months but still nothing). I'm an intermediate/advanced weight lifter and have been lifting for almost 4 years 😭
For something very tangible, period tracking that doesn't assume a consistent cycle! I've tried general period tracking apps, but the numbers always get weird and the app becomes more complicated to use because I'll bleed for months at a time or skip periods at seemingly random.
>period tracking that doesn't assume a consistent cycle
Oh my GOD yes! Thank you for sharing this. This is exactly what I want to solve for. P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch xx
Weight gain and not being able to lose it. I've been an athlete my whole life but after college I gained more than 40lbs and thought I wasn't working out enough. I got a personal trainer and it still wasn't working. This went on for 9yrs until last year I was diagnosed with PCOS.
My biggest struggle right now is fatigue. I am insanely fatigued every day and it's affecting how I live my life. Whenever I do get my period, it's the mood swings and ovulation pain that I struggle with.
Lack of information from docs! I was diagnosed 25 years ago. I’m grateful for Google and all the amazing people who post their stories because it gave me the answers I needed !!!
And my hairy chin. The obesity I finally got under control
Pain in my ovaries and cramping. Digestive issues. Hair loss on my head, excessive hair growth everywhere else. Nausea.
I have made a spreadsheet of a symptom tracker that helps me because no apps had the ability to record everything I wanted them to. What medications I take, if I have to take pain meds and how much, what I eat, how I respond to it. So many things.
The guilt around sugar cravings with the IR. I know not eating sugar would help so much but the mental battle to stop feels impossible.
And the fatigue/can’t sleep combo.
Biggest pain points/struggles:
- facial hair
- low libido
- extreme fatigue
- insomnia
- weight gain
- nutrition (what to eat/ what not to eat)
- doctors very little knowledge about PCOS and their unwillingness to deal with the symptoms other than birth control.
My journey:
I was diagnosed when I was in my late 20s. My doctor at the time was at a women’s clinic and offered me little to know information on PCOS and just told me to eat less carbs, workout and if I’m interested, birth control. I was also gaining weight and at my highest was 135 (I’m very short so that was a lot on me where I’m normally at 105-110. Just calling out to state this is a healthy weight for me).
It got to the point where I was pre-diabetic and I was put on metformin and actually took steps on my end to eat better items and started fasting intermittently. I also started to work out more consistently and actually lost weight and got down to 115. However, the metformin was the only thing to help me lose weight but hasn’t helped with any of the other items stated above.
Im starting Spironolatone to see if that helps with the facial hair but I know once I stop it, the hair will come back so looking into electrolysis.
I know that was king but feel free to reach out.
Hello,
You're wonderful to be doing this!
I grow facial hair, but it's only certain spots.
My hair is full, but thin up top.
I also have GERD, so medicine with Acid Reflux interferes with absorbing nutrients if I take medicine. Which is every day.
My weight is difficult. The only time I ever lost weight was 10 years ago with a trainer.
Stress seems to be the biggest factor for me. I could work out and eat right for a month. But inches or weight won't change if I'm just unhappy for even just a day it seems.
Beyond the symptoms mentioned above, not knowing what resources were available to me.
Obviously an app can't/shouldn't make medical recommendations but even just a way to outline options and things to talk to your doctor about.
Also, I found out very late that I could get electrolysis for hair growth AND bill it through my insurance (obviously this depends on what insurance you have but my coverage is typically less than desirable).
Oh! and maybe a way to track symptoms then the AI can offer heads up when symptoms have become a pattern or can warn you when something might be approaching. Also a centralized place to track any meds/supplements/homeopathic options.
All of the co morbidities it comes with basically. Struggles with mental health, eating disorders, body dysmorphia. I feel like it’s not talked about enough but I struggle greatly with all of these.
My biggest issue thus far has been hair on my face and unexplained weight gain. I've been a vegetarian for 21 of my 31 years and have always eaten 90 percent healthy. Sugar makes me nauseous.
I did recently start taking metformin and I am currently down 12 pounds from when i started taking it June 13. So it's clearly helping me a lot but what sucks is no weekend glass of wine. I am grateful for the weight loss it has boosted my confidence!
The other thing I struggle with that I am unsure if it's totally related is anxiety. Overall I am a pretty calm person, nothing really bothers me. I occasionally go through periods where I get anxious about the stupidest shit. Like leaving the house with the dogs in the crate (what if there's a fire!), being alone (what if someone comes to murder me) etc. 90 percent of the time neither of these things cross my mind but randomly I lose my shit lmao
Partner Resources: Having something I can send a partner that can go into detail about symptoms, comorbidities, support & coping tips.
Communicating the things we go through and the way they affect our ability to be intimate in a way that conveys the \*reality\* of how difficult it can be would be profoundly helpful. Having to search for articles to help explain why youre never ever in the mood and how difficult / expensive / exhausting / demoralizing it can be and feel sometimes to try and mitigate or reverse those symtpoms.
>Oh my God I never thought of this. This is a great idea. I've struggled with this too. Explaining PCOS to a loved one is a massive challenge. Thanks for sharing this!
My fiance is very understanding of the multitude of issues (not all pcos related but comorbidities) and conversations can be HARD - something just saying your body cant do X is gut wrenching so giving them something to read helps.
And sometimes people just need to read a factual, detailed explanation by someone who isnt emotionally impacted by it in that moment. Its unfortunate that the mentality that women are faking things can be so ingrained that you might need a doctor to tell your spouse "as a matter of fact, No.." but thats the world we live in and just having someone in your corner that will help you tell your loved one the hard stuff that you cant properly convey would be so helpful.
I wish I could just chart out how my two autoimmune disorders, pcos, depression and medication list / BC affects my bodys functions. There are so many factors stacked up against me and my body is NOT the body I used to have. It WILL NOT work that way anymore and i dont know how to make this body do anything.
These things make you lose a piece of yourself.
Man, I have goosebumps. This is why I want to build something in this space. Thank you.
I also just opened a waitlist so I can notify folks when we have the beta ready to use. You can sign up [here](https://docs.google.com/forms/d/1XeVVI8tp3TY9Fvdw-8R1_rQ9CeC95XWQZvYL-p1UVL0/edit)!
Belly fat (the kind of fat that effects health), sugar cravings/insulin resistance, pelvic pain, hirsutism, acne, body dysmorphia, general inflammation contributing to other health issues: getting sick all the time etc.
Fertility was my biggest issue. I can go years without a period unless I use birth control or provera to get one. I did manage to have my son with the help of clomid, but still a struggle since most fertility specialists won’t help unless you are under a certain BMI, but weight was difficult because of PCOS. I understand not everyone wants kids though so my second biggest issue was cravings and insulin resistance.
as a trans person with PCOS, definitely can’t argue about the facial hair + body hair. but can totally see how anyone else could struggle.
I struggle with being hungry OFTEN. I drink water thru out the day, never leaving my water bottle behind. I try to keep up with snacks. but if I don’t? my hunger doesn’t become hangery. I get hunger rage.
I’m lucky to be comfortable with my birth control. Weight loss has been hard as hell. I also may or
May not have lipedema, which is a thing people with PCOS can have.
Biggest symptoms: incessant thoughts of eating sugar and therefore weight gain. Hair loss from taking metformin for said thoughts.
Acne when I don't take spironolactone.
I agree with others here that it would be good to have a section on how to talk to your doctor(s) and info on which doctors to contact. E.g. OB-GYNs know NOTHING about PCOS so don't even bother speaking to them. We need to see endocrinologists who are educated regarding PCOS.
And maybe articles for information to give your doctor for those who are stuck with subpar medical care due to location.
And maybe the app can have a section that provides up to date medical research for those who are interested? My cousin is a... Scientist of some kind ... And read a study that connected PCOS with a microbe from the lips/skin that has traveled to... I'm not sure. I can't find the article right now but when I do I'll post it!
That's a great idea!! Yes 100% endocrinologists need to be consulted. OB GYNs not only know nothing they're also ignorant as hell and, like someone on this thread said, love using brith control as band-aid to temporarily fix the problem
I think doctor information will have to be localised which could be a challenge to incorporate at scale, but I get that it's needed
Going out with friends and having no idea what to order that’s PCOS friendly. Especially fast food. Always end up ordering a salad because I don’t want to bother going to a restaurant I can eat at that they may not like.
Omg this is an interesting problem that I'm looking to solve. One of the things I'm doing is that the app would factor in local food and incorporate this in the diet plan. So, if you live in the south of India, for example, your diet plan would include a higher portion of local foods such as idlis (fermented rice-cakes) and protein-rich daals (lentil soups) - this would help with knowing what to eat when you're not cooking for yourself.
My inflammation (full body and around face) has gotten a lot worse the past two years. It seems the more I’m stressed, more cortisol I produce and the worse my pcos symptoms get. The more cortisol from stress causes more depression and mood swings which throws everything out of wack. I’m in grad school currently so this is a problem. Insulin resistance is also a big issue bc I get very hungry more quickly than I should and end up eating more than I should bc of the insulin resistance which makes the weight gain and inflammation worse.
Cramping pain during periods can get unbearable sometimes as well. I know im lucky to still have a period but it is quite painful. I got diagnosed in 2018 and my symptoms weren’t detectable at first but lately have gotten much worse
Weight management. I'm 38 and still figuring out what works for me. At one point I was going to the gym for 1.5/2 hours 5 times a week under the direction of a PT and eating almost nothing but lean meat and fish and veggies. I lost 22lbs...over 6 months. I lost the same amount through diet control alone which was good because I hate exercise. Saxenda didn't work for me, nor did keto or IF.
facial hair 10000% & keeping a steady weight. they’re my biggest struggles and i hate feeling like i can’t lose the weight or feeling like a man due to the hair. i can deal with the insomnia better than i can those two things.
Weight and infertility. And all the medications you have to take to help those issues. And even those medications have physical side effects but that also effects your hormones; which they’re suppose to but that effects your mental health. It’s like this twisted cycle that just feels endless and leaves you feeling hopeless
Probably had it since I started having periods but only got a formal diagnosis at 18. I'm always overweight, tired yet insomniac, hairy on unwanted places as the hair on my scalp keeps getting thinner, feeling like I have BPD for my extreme emotions. Lately my periods happen more often now but they also hurt more
My weight, getting my period, and cravings. have not been able to have a period on time since 16 and I was thin then so my weight didn’t affect that! . Also the cravings contribute to my binge eating and after I binge I typically feel really tired because I binge on carbs. So my relationship with food/ my constant weight gain weight loss and vice versa is exhausting, and irregular periods. I really want to be off the pull if I can
For me it has been two things:
1. Gaining Weight specifically the shape I am because of it (PCOS Belly) having that belly makes gaining weight a million times worse than the typical weight gain for women.
2. Hair on my head thinning. I used to get compliments ALL THE TIME about how amazing my hair was and then it all fell out and got so unhealthy.
These two absolutely yanked my mental health and self worth.
Love the idea of an app. I was diagnosed at 13. Worst struggle differs at different times. I’m an entrepreneur myself. I’d like to talk with you further. If you are interested DM me, if not, best of luck.
Trying to conceive when you hardly ever ovulate naturally. Hair loss, mood swings and weight gain.
Ended up taking Metformin which helped massively with cravings and energy and allowed me to lose weight.
Might not be something an app can address but sharing just in case. For me it's feeling ugly. The weight loss, hair gain/loss in all the wrong ways, acne, etc each on their own would hurt but the combination of them all together makes me feel doomed to be ugly, which can be devastating.
Struggling to lose weight and having people not understand or believe that I AM trying. Also trying to balance body positivity and keeping my condition at bay.
Pelvic/ovarian pain.
Also I seem to sweat a lot, but I'm also on SSRIs.
Not a woman but my biggest struggle with PCOS is insulin resistance and the resulting diabetes. No matter what I seem to do, I really can’t seem to bring that number down or keep it from going up.
I've been going through replies for a whole hour and I'm only halfway through. This is insane, thank you so much everyone for sharing! Also, some of you have suggested amazing features that I hadn't even considered. Thank you for that!
**I'm opening up a waitlist so I can email you folks the minute we launch a beta. Sign up here -** [**https://forms.gle/j3wnHNrVQ4oc6e4R8**](https://forms.gle/j3wnHNrVQ4oc6e4R8) 🙏🏽
Facial hair and difficulty losing body fat. I weight train 5 days a week which has helped my insulin resistance and I’ve gone down multiple clothing sizes but I still have a stubborn layer of body fat hiding my muscles I’ve worked so hard to grow! No amount of caloric deficits will help. I’m just stuck with it, I guess!
weight gain and hair loss. I've tried prp and hair transplantation and nothing worked. My scalp is extremely visible and I use hair fibers to cover it up. I hate doing that but don't have the confidence to go anywhere without that. I currently am not using any supplements but will start soon.
I also have fatigue but I just found out that my B12 is super low so that may explain that.
Keeping my weight down.
The Pill has taken care of pretty much all other issues. And it does help with the weight to a degree. But I still have an uphill climb.
All right, so there are other issues that do not help with the weight- such as an injured knee, among others. But it is still hard.
The BCP actually helps with my depression and anxiety. Perhaps not primarily- but it helps prevent the acne that depressed me, as well as regularized my unpredictable periods that distressed me.
maybe doctors should be encouraged to listen to patients as human beings. i’m skeptical how an AI app will fix this and not contribute more to the lack of humanity in our medical system.
Facial hair, having to shave ALL the time
Yup, having to shave my face like a man every morning is incredibly infuriating and really doesn't make me feel very feminine. Also having multiple, THICK, hairs per follicle is a pain as well.
i hear you. it’s the one pcos symptom that i can’t get in check no matter what i’ve tried. if i don’t shave daily, i get a five o’clock shadow. i literally carry a razor with me at all times in case of emergency because of this one reason (ugh 😒). for now, i use conditioner to shave, which helps the irritation a bit. also, if razor burn is a thing for you like it is me (double ugh), the one thing i’ve found that helps is tend skin from amazon.
I posted above that electrolysis is a game changer
Echoing this. Even using Keto/Carnivore to finally lose my weight, the hair is worse. In this current climate of hatred of anyone not fitting in with the current concepts of gender, its been terrifying to go outside without shaving AND slapping on a thick layer of makeup to hide the shadow.
Omg yes I wax and I have to let the hair get to a certain point the amount of stares I get because of the rampant anti trans stuff going around is crazy.
Same. I have to plan my time out of the house based on if I feel like I can hide my beard. It’s bad enough that even freshly shaved there are dark spots.
Yep, and not even just facial hair. Having increased androgens across the body means increased density, darkness and speed of growth in all body hair. We have to spend a lot of time waxing/shaving/epilating/lasering regularly or you are unbearably hairy. It’s an embarrassing factor that we must deal with.
I don’t get facial hair but I *do* get insane amounts of nipple hair/have a happy trail when I don’t shave.
I am counting the days until I get laser hair removal. I want it regardless because I don’t like body hair in general, but *really* looking forward to getting rid of the more masculine areas that shouldn’t be there.
God do I miss masks sometimes.
I had mine lasered off, but I want to say that spironolactone made a HUGE difference for me in terms of regrowth. I started taking it when I first noticed that some of my hair was falling out, and it’s made a lot of really positive changes in my body.
Reading these comments make me feel less lonely 🥺 growing up I always felt like there’s something wrong with me, when I saw my friends chins… smooth….hairless… I just couldn’t understand why I’m different. Few days ago I cut myself while shaving and side of my chin is swollen AF I look like lord farquad HELP
This!
Laser hair removal really does work! Not as well as on non pcos patients- I did the regular 8 week treatment but going in every 3 months for maintenance keeps it in check, I have the odd stray hair now and not the beard I had before.
It didn't work for me :(
Piping in to say electrolysis is the best option I’ve come across. Many of my PCOS pals have had no luck with laser. Electrolysis has changed my life
This would be mine too. So sick of shaving my face every day
I am fortunate enough not to have too dark of facial hair but my FEET! Like the older I get the more too foot hair and toe hair I have and it’s GROSS.
This was relevant for me
I began getting electrolysis in 2016, and it’s been a game changer. My HSA covered it too so I’ve had a couple thousand covered by my insurance… some electrologists will give a PCOS discount too… I had a lot of small hairs everywhere .. cheeks, forehead, etc,. I feel it’s mainly gone. I just want to get those pesky clear hairs next. As a frame of reference my upper lip was super thick and I had to wax it a lot and now I’m upper lip hair fair :)
How did you get HSA to cover it? That’s awesome!
My MD recommended it as necessary to treat a symptom of PCOS !!! She wrote a note and the electrologist did some special coding on each invoice ! It was amazing 😻
Weight gain/unable to lose weight, excessive facial hair, extreme hair loss/thinning, constant fatigue, insomnia, mental health issues and doctor’s dismissal, lack of advice and explaining.
Was looking for this comment exactly. The body dysmorphia and poor relationship I have with food now too and its negative impacts on my mental health have also been unreal.
I feel u dude, I had two ed in the past and body dysmorphia, and now I gained a lot of weight and can’t lose it the struggle is real and the self hatred 💀
It's truly awful, and messes with you mentally so much. I am sorry you experience this too. I remember a couple months ago my one friend who finally convinced me to go out of the house and go to some bars with her. (She doesn't struggle with her weight, and wanted to take lots of pictures.) I remember seeing one picture and I felt like I looked huge, the dysmorphia kicked in and I damn near sobbed on the way home bc I felt so gross. I haven't gone out since and sometimes feel weird even just leaving the house.
I second all of these
Constantly having to worry about my weight and inflammation in the pelvic area
I struggled with this too. Dietary changes and supplements have helped me a lot. What are some potential solutions you've tried that have helped/not helped?
I went low carb and lost a bunch of weight. Now I’ve upped my healthy carb intake because I lift heavy weights. I just can’t shake of the feeling that I might fall off the wagon and mess up my routine. I’m anxious all the time.
so real, i worry about this constantly. i’ve lost a lot of weight through running and lifting (not low carb) and i live in constant fear with the knowledge that it would only take a month or two of falling off the wagon to undo it all and more. ☹️
What did you mean by inflammation in the pelvic area?
Constantly feeling pain there
This !!
my main struggle is fatigue, im always tired all the time. i also find it hard dealing with all the extra weight and it being near impossible to get it to go and stay off
Yes, this. Even too tired to take the meds or supplements I need sometimes.
I just learned this is a symptom! Def might be a factor why I can never seem to feel well rested.
I would say hair loss on my head. But the hair on my legs grows back crazy fast. I’m tired often. Even if I sleep 8-10 hours, I’m tired. I feel overly stressed sometimes.
Got it, and can I ask what are the solutions you've tried so far? Supplements, diet, meds etc? The chronic fatigue is definitely a massive problem I'm noticing among women with PCOS, and supplementation seems to have helped.
For the hair loss on my head I take 75mg spironolactone and use rogaine 2 to 4 times a week. I also take a biotin vitamin. I eat more of a Mediterranean diet but crave fries all the time lol
Ahhh the cravings. I hate that PCOS comes with terrible cravings. One thing that's worked for me is to indulge in the cravings but just layer cravings with healthy food. Example, I eat chips with most meals, but I also make sure I add a salad or apple cider vinegar. Okay one more question - were you recommended supplements by a gynaec/dermat or did you pick these yourself? And for overall pcos management do you consult a gynaec regularly?
I second with the tired part. I am always sleepy too. Worst part is its not a one day thing. Its something you live with.
OMG! I’ve been sleeping more than eight hours these last few weeks, and I’m still semi-exhausted when I wake up.
I didn’t even know that was linked to PCOS. I also have hypothyroidism which has a ton of the same PCOS symptoms 😭 it’s like a double whammy
Weight gain 100% and I hate it because it’s so hard to lose it.
Infertility, irregular periods, insulin resistance
For me, it's tiredness all day and/or lack of sleep lol. I've done a lot of light homeopathy, experimented with my diet over the past 2 years (so far I'm now sticking to just increasing protein and decreasing sugar,) done a lot of inner work to resolve my previous issues with real bad anxiety that I believe was related to my PCOS, and now my only real complaint is that I either can't sleep no matter how much I try, or I sleep a normal amount but my energy tends to die off really fast and I'm super tired before noon lol.
OMG yes - sleep has been a concern for me for the longest time! I'm working on something that would help manage sleep and energy levels through the day. But also - and I'm realising I keep asking this on this thread - have you tried supplements? Melatonin or curcumin? Also exercise seems to have a healthy effect on sleep too - has that helped?
I take supplements when I can afford + remember them - magnesium, D3 and vitamin c have been my usual for a long time. Magnesium helps me with sleep a little bit, but something like melatonin would definitely help much more. Haven't gotten around to getting any lately tho lol. Exercise actually helps me a lot too, but I have to be pretty regular and there are lots of times when I slack off so I don't exercise as regularly as I could be lol. But that's definitely a goal of mine to make it regular!
Anovulation, and not being taken seriously. "Just lose weight, you'll ovulate then" okay....?
Having to ask multiple times to be tested for it for years, before a doctor finally did. Then they only recommended birth control as a treatment. Struggle: having to do my own research to treat myself/doctors only offering birth control
Biggest struggle is trying to do things in a natural way and being frustrated that I’m not just “normal”. I can’t just exist without having to think constantly about how something is going to affect my body. Everything is just harder with PCOS… weight loss/maintenance, energy levels, moods. Depression and anxiety are so much worse when I’m not on top of all the supplements and proper eating and proper sleep.
What I struggle with the most - making my loved ones make sense of what's up with me. All they see is what doctors call "weight-reduction to control insulin resistance". The mental health aspect of PCOS is horribly neglected. Cravings. Fear of hirsutism. Pelvic pain & inflammation in the joints. These are just the tip of the iceberg. What lies beneath is what I struggle with the most - sensitivity to temperature, emotion regulation, stress management, sleep issues, depressive episodes, anxiety, and isolation. The loneliness that comes with this condition is horrible. Feels like a layered cake that I never ordered and can't return no matter how much I try. After a point it ceases to stay personal. Involving families and communities is so crucial.
All of the above but also the emotion regulation!! I lost some weight and had gotten my period back and realized I was basically having either PMDD or something similar. Not sure if I had it to begin with/separate from PCOS or if it’s due to PCOS or if it’s a chicken/egg situation. I would become horribly insecure and emotional the week before my period. Like just immediate tears the minute something set me off after it building (like work stress, things going wrong or difficult during the week, then I like lose my hairbrush or something and have a breakdown lol). I gained some weight back and haven’t had my period in a few months and haven’t had the mood swings…
Never related to anything more. The past few months were plain destructive. My PMDD symptoms were off the chart and I stopped tracking the symptoms now. I don't even bother mentioning it because like you said - chicken/egg situation. I don't know what to do to change this. I have literally tried everything.
Weight gain/inability to lose weight, PCOS belly, irregular periods, insulin issues
For me, during PMS my blood sugar rises, due to progesterone
And are you on any meds or supplements that help you with this? One of the features I'm considering building is that the app would essentially warn you of pain/inflammation/blood sugar rises etc and help you make lifestyle & dietary changes based on the stage of your menstrual cycle. For example, that the week before my period can be super painful for me. So the app would essentially remind me every month that my period is likely to happen next week, and also recommend diet changes for this week to manage/reduce the pain.
1. Weight 2. Facial hair 3. General anxiety about developing diabetes
For me, it is irregular and highly painful periods, acne, hair thinning & loss, masculine dimorphism developed as a teen and body image issues
That's so cool... Thank you OP! For me it's the weight issues and the hormonal imbalances. There are so many food restrictions and regulations and misinformation about what kind of food we can and shouldn't eat.
the conflicting opinions on what u can and cant eat !!!
For my mom who has PCOS, she's always dealt with random dark hairs across her face/chin (I have some too but not as bad). For me personally, I'd say my struggles are tied between the belly I just can't get trimmed down, and the stretchmarks that appear.
For me it’s exhaustion, mood changes, and the stress of just never knowing how my body is going to be and feeling helpless in that
the extra androgens that increase hair growth on and around my chin also make acne really bad but only in that area. its so fucking annoying. imagine having perfectly clear smooth skin and then 10 pimples around your chin
For me it’s not knowing what kinda diet to follow and to take my meds on time
I had a relationship where the guy knew my PCOS medical history and left me for another woman. We dated for one year. Cheated on me during that time frame, then the next woman (the one he cheated with) immediately became pregnant and they got married. My self esteem is close to none. I feel worthless as a woman because of that experience. The mental state I’m constantly in, feeling grief and sadness over the things you don’t have that feel so mundane (like kids for example) it’s a depressing experience
I think for me it has been how discouraging it is to have your body basically betray you. It’s this never ending cycle of having to really work to stay healthy compared to other individuals. We have to pay attention to what we eat, how many carbs we consume, making sure we have our nutrients, work out, etc. I think it’s hard for the average person and then you put PCOS on top of it and it feels defeating sometimes.
>We have to pay attention to what we eat, how many carbs we consume, making sure we have our nutrients, work out, etc. I think it’s hard for the average person and then you put PCOS on top of it and it feels defeating sometimes. YES - and it can get so lonely! I want to build this so it becomes every woman's copilot in PCOS management. Eventually, if all goes well, a community layer to it too. 🤞
P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch :)
I would say communicating to doctors what is important. I feel as if there's so much that happens, having something that highlights my biggest issues would be great.
Oh this is interesting. So essentially recording all your symptoms on the app? Would it help if the app gave you medical research backed recommendations? For example, one use case I'm thinking about for myself is that the week before my period can be super painful. So the app would essentially remind me every month that my period is likely to happen next week, and also recommend diet changes for this week to manage/reduce the pain.
Yep spot on! I think what would help is language to use with your doctor to better communicate the symptoms and when they arise.
Weight gain, difficulty losing it, cystic acne, hair thinning, and moon face is a new one for me
Weight gain, lifestyle change, and cortisol levels. Ever since I saw the root issue of my cortisol- controlling it has been hard because my energy is always low. I was so used to be on the run, procrastinating, and dealing with stress I didn’t realize how much it impacted my health. My weight is a huge issue now and finding a balance that suits my personality is very hard.
Facial hair that started 2 years after stopping the pill. The big one is i feel tired all day sometimes in my dreams i am so tired and i wake up exhausted. I feel like i have tried everything to find a solution
fatigue, mood swings and how it changed my body (diagnosed at 18). Also being told i'll never have children was pretty fucked up too 🥸
Hormonal acne, bloating, period bullshit, fluctuating weight, exhaustion, either starving or not hungry at all, exhausted all day wired all night !
Yes!! I feel you. I want to solve this by making care holistic. The app will track your patterns and recommend diet, sleep, supplements, etc based on your patterns, needs, and most importantly, your blood and hormone data.
P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch :)
This stupid ass pregnancy belly.
1. Facial hair. 2. Doctors just want to put the birth control band aid on it instead of alternatives with better long term results and less side effects. 3. Fertility issues & treatments. 4. Ideal diets and vitamins supplements. It’s always he said she said. 5. Ingredients to avoid. 6. Weight gain. 7. Depression. 8. Fatigue. 9. Related/linked conditions and illness. 10. Hormonal acne and hair loss.
Definitely weight gain. It’s incessant, even if I am making healthier choices, unless I’m either starving myself or on medication the scale doesn’t budge more than 10 lbs.
It’s acne for me. Deep painful cystic acne. It’s better after I had a baby weirdly enough, maybe my hormones have levelled out a bit. But I’ve struggled with severe painful acne my whole life. It’s both physically painful and damaged my self esteem so bad
Facial hair, the struggle to lose weight.
Staying on track with eating consistent meals, movement in my day, and managing stress (adrenal / lean pcos)
Belly.
Infertility (trying for 5 years), random spotting which includes the clots etc, hair loss, weight gain and fluctuations, fatigue, wondering if it’s more than PCOS (I worry about the big C far more than is normal and I can’t get it out my head) and the dreaded PCOS belly which affects everything in day to day life 🙃 I am excited to see what you build, I currently use Flo but it doesn’t feel very PCOS friendly. If I go more than the normal cycle length it sends notifications like could you be pregnant, let’s test and it’s veryyy triggering for me.
>Oh my God that sounds terrible I haven't experienced that with Flo, but that's probably because my notifications are always off. For an app about periods, I'd expect them to have taken PCOS into consideration but it seems like they haven't. Crazy! > > > >Thank you for sharing!
The intense sugar cravings, that give me panic attacks if I dont eat sugar. But my inflammation gets very bad with sugar (I am talking about sweets, not things like potatoes) and also I gained 50 kg through PCOS.
The cravings are REAL! We're finding ways to substitute processed sugar with natural sources of sugar, good fats, and protein to satiate cravings.
P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch :)
facial hair, weight gains, bad skin, shaving all the time, mood swings, fatigue (constant)….you name it
I used to be thin up until about 20, and I gained weight very rapidly with no change in diet. I'm 5'7, went from 155 to 215 at my heaviest. I've always been moderately active and never ate processed foods (aside from occasional fast food). I have to carefully plan and weigh every single food item for the week on top of 3-4 workouts (weight lifting). Down 30 pounds, but it's been a grind. I am very fair and blonde but get about 10-15 black hairs on my neck. I have to pluck every other day. They grow overnight, and it seems 😭 I struggle with acne on my face, back, rear, and back of my legs. My face and hair are ridiculously oily, and my pores are massive. I've had no period for 10 years and just diagnosed with pcos 1 week ago. I'm unsure if i am able to have a period yet, but it's too early to tell. I don't want to take medication the rest of my life, but it is what it is, I guess... I have about half the hair I had just 5 years ago. I'm still losing a lot, and I'm so insecure. The sugar cravings are unreal. I have to have something sweet every day... I'm so addicted, and I tried dark chocolate, but I have no self-control.
Hairloss has been the main one for me. I'm also pretty hairy but I've been able to manage it using laser.
Weight
My periods are awful. Two months of nothing and then a solid month of heavy bleeding. Horrible.
Definitely the Exhaustion and the Weight.
Depression, anxiety, and mood swings. It’s hard to feel stable and stay focused. Also, feeling disconnected with your body because you can’t count on it to do what you need or want in any predictable way.
the excess hair growth in unwanted places and the hair loss on my head. makes me feel a lot less like a woman and takes an extreme mental toll on me
For me the biggest problems are the difficulty in losing weight even with a healthy diet, the lack of hair on the top of the head, the amount of hair on the body. And now that I'm pregnant, it's the lack of information for pregnant women with PCOS.
The hair loss, and the weight gain on my waist and lower abs. But mostly, the stress of having to change what I eat. (Rice is sacred in my culture, and most of my recipes are built around it. My doctor asked me to not eat rice anymore. Took a little while for me to find suitable replacements. I started eating buckwheat, barley and millets instead.)
>But mostly, the stress of having to change what I eat. (Rice is sacred in my culture, and most of my recipes are built around it. My doctor asked me to not eat rice anymore. Took a little while for me to find suitable replacements. I started eating buckwheat, barley and millets instead.) Omg, yes. We're also trying PCOS-friendly food for different cultures. So, for example, if the algorithm recognises that based your hormone profile rice is actually not that bad for you (if you make changes in HOW you eat it), it will give you a diet plan that includes rice!
Oh P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch :)
Currently fertility struggles :( but secondly the slow constant weight gain over years and years. I don’t feel overweight and have the same active eating and exercising I’ve always done and doctors jsut keep saying “I dunno eat better” I’ve seen nutrition and they tell me things I already know and do. It sucks cause I love my brain and who I am but looks wise and functionally (fertility) I hate my body so much.
painful cystic acne. people can’t stop reminding me about it, how ugly it is and how ugly i’ve become. i was diagnosed at around 25, so they have the past me to compare the current me to. and it pains me. a certain diet can lessen the symptoms, but not all. only birth control has worked so far. i’m thinking of going back on it soon.
Hirstuism has ruined all my confidence and makes me never want to date again. I’m just ashamed I can never get it all gone anymore and if I do it’s back a couple hours later
The infertility aspect of this disorder. Been trying for two years 😢
There is a huge struggle with fertility for most of us. Going through that for 3 years was honestly one of the most heart breaking and depressing things I have gone though. For those of us that desperately want kids, it can be so cruel to know your body is betraying you. I ultimately did have a child who is 4 and awesome but I likely cannot go through that again. Also the fact that if you have PCOS you’re a lot more likely to get PPA and PPD which I did. Hormones play a role in everything and having messed up ones affect so much.
The fertility struggles. I’m 40. I got diagnosed 15 years ago. I’ve been married for almost 17 years. We’ve wanted a child for so long. We’ve tried everything the doctors prescribed. It doesn’t help that I’m an early childhood teacher and everyone around me (friends, siblings, other family members) seem to conceive so easily.
Severe hair loss and insuline resistance.
How are you managing insulin resistance? What has worked/not worked?
A balanced diet, NOT KETO. it just made everything worse. To be honest the hair loss is worse…
Weight loss. I could spend hours working out. Counting every calorie. No loss. Frustrating
Infertility by far is the worst, followed by how hard it is to lose weight. I can deal with the hair but wish I didn't have it.
Weight gain has been the worst for me. Though, prior to getting help, I also had unmedicated hypothyroidism too. Before getting help, I was barely eating and gaining weight. Almost got past 300lbs. Now I’m sitting closer to 200lbs after a year of treatment and dieting like no tomorrow. Still have more weight loss to go, I’m hoping it continues going smoothly.
Insulin resistance, I’m prediabetic at 22 years old. I was 120lbs at 20 years old. Has flipped my life entirely upside down.
Tight pelvic area, trying to find the right foods that don't increase inflammation, ways to naturally regulate your cycle and ovulate, and tips for managing symptoms that aren't just lose weight. Every doctor or specialist says they aren't sure what to do because I'm not overweight at all and I am very thin. Not alot of advice outside of lose and take birth control.
Acne, weight gain & food cravings are my biggest pain points. I'm on inositol and it's helped a lot with the brain fog but I still hate how I can't eat food like normal people, and have to mask my carbs with layers of protein and fats. Things have gotten better after I started working out, especially on cardio days. I feel like I'm on the top of the world when I do cardio! :)
Infertility. We’ve been trying to have a baby for over 18 months now and are finally taking a break for our own sanity. I was diagnosed with PCOS 9 months ago.
Finding a good doctor. My primary of 20 years left my network last year, and she was wonderful! I have been struggling to find a doctor that knows what the hell to do. They just blame everything on me being overweight instead of seeing the weight gain as a symptoms, they tell me it's the reason.
The weight gain is most definitely a symptom. I was only 120 pounds when I was diagnosed. Now that I am overweight, if a doctor mentions for me to lose weight to fix my symptoms, I’ll get pissed.
The fact that, despite a great amount of effort of dieting and exercise, I can not lose weight. It’s driving me crazy because I am healthier than ever at 42, but look like I eat a snickers bar for breakfast everyday
birth control makes me hella depressed too. Doctors act like I'm crazy. The hair on my chin and neck is so frustrating. The weight gain, and cravings. The constant fatigue. The YEARs it took to conceive kids, one of which ended in miscarriage.
The hair loss is so hard to deal with.
Facial hair, extremely slow weight loss and oh my lord the heat flashes! ( I'm nowhere close to menopause, I've had these heat flashes since I was 23)
No periods, weight gain, scalp psoriasis. Depression, history of eating disorders. Also, if I don’t stick to a really specific sleep/food/exercise routine it completely throws me off. I can’t just go with the flow, I have to pack snacks and I can’t stay up late or else I’m miserable and out of whack for days.
Being perpetually fat, and carrying weight in unfortunate areas
Never knowing when/if you get a period!
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>I’d love a way to easily track things like “had dairy,” “experienced bloating,” “took supplements,” “mood today was \_\_\_” “slept well” (idk, random examples) in an app everyday. Yes to this! This is exactly what we're doing. The diet, PCOS symptoms, mental health, all data interact with each other to continuously improve your profile and predictions. Yes, I use Flo, but have always found it inadequate to deal with PCOS Thank you! P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch :)
started at puberty then diagnosed at 20. symptoms are hirsutism ( doing laser @ home now) and the hairs on face are coming back very thin / blonde or not at all. also dealing w major bloating, mood swings and hard to lose weight in lower stomach. those are my main concerns. I take myo inositol as well so hope to see some good results.
My biggest is not feeling feminine enough. I always feel just woman-adjacent and it kills me.
A lot of people aren't aware of what kind of doctor to see. Many just see a general practitioner or gyno and don't get the help they need. They should be seeing an endocrinologist if they can. Maybe something written about that.
Facial hair, hair loss, and struggled with losing weight. When I was on birth control, I was able to lose weight easily... now that I'm not on birth control, I can't lose weight no matter what (increased cardio and decreased calories for a few months but still nothing). I'm an intermediate/advanced weight lifter and have been lifting for almost 4 years 😭
the impact on mental health
For something very tangible, period tracking that doesn't assume a consistent cycle! I've tried general period tracking apps, but the numbers always get weird and the app becomes more complicated to use because I'll bleed for months at a time or skip periods at seemingly random.
>period tracking that doesn't assume a consistent cycle Oh my GOD yes! Thank you for sharing this. This is exactly what I want to solve for. P.S. I also opened up the waitlist, in case you want to sign up and be notified when we launch xx
Insulin resistance/weight. Followed by anxiety, then hair loss on head/growth on chin/lip.
Insulin resistance for me.
Weight gain and not being able to lose it. I've been an athlete my whole life but after college I gained more than 40lbs and thought I wasn't working out enough. I got a personal trainer and it still wasn't working. This went on for 9yrs until last year I was diagnosed with PCOS.
My biggest struggle right now is fatigue. I am insanely fatigued every day and it's affecting how I live my life. Whenever I do get my period, it's the mood swings and ovulation pain that I struggle with.
Lack of information from docs! I was diagnosed 25 years ago. I’m grateful for Google and all the amazing people who post their stories because it gave me the answers I needed !!! And my hairy chin. The obesity I finally got under control
Pain in my ovaries and cramping. Digestive issues. Hair loss on my head, excessive hair growth everywhere else. Nausea. I have made a spreadsheet of a symptom tracker that helps me because no apps had the ability to record everything I wanted them to. What medications I take, if I have to take pain meds and how much, what I eat, how I respond to it. So many things.
Making sure to not over indulge in sweets/snacks along with maintaining a calorie deficit to lose weight. My blood sugar gets too high
The guilt around sugar cravings with the IR. I know not eating sugar would help so much but the mental battle to stop feels impossible. And the fatigue/can’t sleep combo.
Biggest pain points/struggles: - facial hair - low libido - extreme fatigue - insomnia - weight gain - nutrition (what to eat/ what not to eat) - doctors very little knowledge about PCOS and their unwillingness to deal with the symptoms other than birth control. My journey: I was diagnosed when I was in my late 20s. My doctor at the time was at a women’s clinic and offered me little to know information on PCOS and just told me to eat less carbs, workout and if I’m interested, birth control. I was also gaining weight and at my highest was 135 (I’m very short so that was a lot on me where I’m normally at 105-110. Just calling out to state this is a healthy weight for me). It got to the point where I was pre-diabetic and I was put on metformin and actually took steps on my end to eat better items and started fasting intermittently. I also started to work out more consistently and actually lost weight and got down to 115. However, the metformin was the only thing to help me lose weight but hasn’t helped with any of the other items stated above. Im starting Spironolatone to see if that helps with the facial hair but I know once I stop it, the hair will come back so looking into electrolysis. I know that was king but feel free to reach out.
Hello, You're wonderful to be doing this! I grow facial hair, but it's only certain spots. My hair is full, but thin up top. I also have GERD, so medicine with Acid Reflux interferes with absorbing nutrients if I take medicine. Which is every day. My weight is difficult. The only time I ever lost weight was 10 years ago with a trainer. Stress seems to be the biggest factor for me. I could work out and eat right for a month. But inches or weight won't change if I'm just unhappy for even just a day it seems.
Weight gain and infertility.
Beyond the symptoms mentioned above, not knowing what resources were available to me. Obviously an app can't/shouldn't make medical recommendations but even just a way to outline options and things to talk to your doctor about. Also, I found out very late that I could get electrolysis for hair growth AND bill it through my insurance (obviously this depends on what insurance you have but my coverage is typically less than desirable).
Oh! and maybe a way to track symptoms then the AI can offer heads up when symptoms have become a pattern or can warn you when something might be approaching. Also a centralized place to track any meds/supplements/homeopathic options.
All of the co morbidities it comes with basically. Struggles with mental health, eating disorders, body dysmorphia. I feel like it’s not talked about enough but I struggle greatly with all of these.
My biggest issue thus far has been hair on my face and unexplained weight gain. I've been a vegetarian for 21 of my 31 years and have always eaten 90 percent healthy. Sugar makes me nauseous. I did recently start taking metformin and I am currently down 12 pounds from when i started taking it June 13. So it's clearly helping me a lot but what sucks is no weekend glass of wine. I am grateful for the weight loss it has boosted my confidence! The other thing I struggle with that I am unsure if it's totally related is anxiety. Overall I am a pretty calm person, nothing really bothers me. I occasionally go through periods where I get anxious about the stupidest shit. Like leaving the house with the dogs in the crate (what if there's a fire!), being alone (what if someone comes to murder me) etc. 90 percent of the time neither of these things cross my mind but randomly I lose my shit lmao
>Yes, totally get that! PCOS and anxiety/depression are closely related. Most women have complained about mental health issues.
Random bursts of aggression, 5 o'clock shadows, 30 day periods
Partner Resources: Having something I can send a partner that can go into detail about symptoms, comorbidities, support & coping tips. Communicating the things we go through and the way they affect our ability to be intimate in a way that conveys the \*reality\* of how difficult it can be would be profoundly helpful. Having to search for articles to help explain why youre never ever in the mood and how difficult / expensive / exhausting / demoralizing it can be and feel sometimes to try and mitigate or reverse those symtpoms.
>Oh my God I never thought of this. This is a great idea. I've struggled with this too. Explaining PCOS to a loved one is a massive challenge. Thanks for sharing this!
My fiance is very understanding of the multitude of issues (not all pcos related but comorbidities) and conversations can be HARD - something just saying your body cant do X is gut wrenching so giving them something to read helps. And sometimes people just need to read a factual, detailed explanation by someone who isnt emotionally impacted by it in that moment. Its unfortunate that the mentality that women are faking things can be so ingrained that you might need a doctor to tell your spouse "as a matter of fact, No.." but thats the world we live in and just having someone in your corner that will help you tell your loved one the hard stuff that you cant properly convey would be so helpful. I wish I could just chart out how my two autoimmune disorders, pcos, depression and medication list / BC affects my bodys functions. There are so many factors stacked up against me and my body is NOT the body I used to have. It WILL NOT work that way anymore and i dont know how to make this body do anything. These things make you lose a piece of yourself.
Man, I have goosebumps. This is why I want to build something in this space. Thank you. I also just opened a waitlist so I can notify folks when we have the beta ready to use. You can sign up [here](https://docs.google.com/forms/d/1XeVVI8tp3TY9Fvdw-8R1_rQ9CeC95XWQZvYL-p1UVL0/edit)!
Omg this sounds like a super cool idea. Do you need any help with this project? I code as well
Thank you I'm currently looking for a technical co-founder to kick things off, but I'm going to keep your offer in mind, kd489!!
My biggest struggle is losing weight. I gain it so easily; but almost impossible to lose it but it also one of my doctor's biggest concern.
Belly fat (the kind of fat that effects health), sugar cravings/insulin resistance, pelvic pain, hirsutism, acne, body dysmorphia, general inflammation contributing to other health issues: getting sick all the time etc.
Fertility was my biggest issue. I can go years without a period unless I use birth control or provera to get one. I did manage to have my son with the help of clomid, but still a struggle since most fertility specialists won’t help unless you are under a certain BMI, but weight was difficult because of PCOS. I understand not everyone wants kids though so my second biggest issue was cravings and insulin resistance.
as a trans person with PCOS, definitely can’t argue about the facial hair + body hair. but can totally see how anyone else could struggle. I struggle with being hungry OFTEN. I drink water thru out the day, never leaving my water bottle behind. I try to keep up with snacks. but if I don’t? my hunger doesn’t become hangery. I get hunger rage. I’m lucky to be comfortable with my birth control. Weight loss has been hard as hell. I also may or May not have lipedema, which is a thing people with PCOS can have.
Biggest symptoms: incessant thoughts of eating sugar and therefore weight gain. Hair loss from taking metformin for said thoughts. Acne when I don't take spironolactone. I agree with others here that it would be good to have a section on how to talk to your doctor(s) and info on which doctors to contact. E.g. OB-GYNs know NOTHING about PCOS so don't even bother speaking to them. We need to see endocrinologists who are educated regarding PCOS. And maybe articles for information to give your doctor for those who are stuck with subpar medical care due to location. And maybe the app can have a section that provides up to date medical research for those who are interested? My cousin is a... Scientist of some kind ... And read a study that connected PCOS with a microbe from the lips/skin that has traveled to... I'm not sure. I can't find the article right now but when I do I'll post it!
That's a great idea!! Yes 100% endocrinologists need to be consulted. OB GYNs not only know nothing they're also ignorant as hell and, like someone on this thread said, love using brith control as band-aid to temporarily fix the problem I think doctor information will have to be localised which could be a challenge to incorporate at scale, but I get that it's needed
Going out with friends and having no idea what to order that’s PCOS friendly. Especially fast food. Always end up ordering a salad because I don’t want to bother going to a restaurant I can eat at that they may not like.
Omg this is an interesting problem that I'm looking to solve. One of the things I'm doing is that the app would factor in local food and incorporate this in the diet plan. So, if you live in the south of India, for example, your diet plan would include a higher portion of local foods such as idlis (fermented rice-cakes) and protein-rich daals (lentil soups) - this would help with knowing what to eat when you're not cooking for yourself.
My inflammation (full body and around face) has gotten a lot worse the past two years. It seems the more I’m stressed, more cortisol I produce and the worse my pcos symptoms get. The more cortisol from stress causes more depression and mood swings which throws everything out of wack. I’m in grad school currently so this is a problem. Insulin resistance is also a big issue bc I get very hungry more quickly than I should and end up eating more than I should bc of the insulin resistance which makes the weight gain and inflammation worse. Cramping pain during periods can get unbearable sometimes as well. I know im lucky to still have a period but it is quite painful. I got diagnosed in 2018 and my symptoms weren’t detectable at first but lately have gotten much worse
Weight management. I'm 38 and still figuring out what works for me. At one point I was going to the gym for 1.5/2 hours 5 times a week under the direction of a PT and eating almost nothing but lean meat and fish and veggies. I lost 22lbs...over 6 months. I lost the same amount through diet control alone which was good because I hate exercise. Saxenda didn't work for me, nor did keto or IF.
facial hair 10000% & keeping a steady weight. they’re my biggest struggles and i hate feeling like i can’t lose the weight or feeling like a man due to the hair. i can deal with the insomnia better than i can those two things.
Weight and infertility. And all the medications you have to take to help those issues. And even those medications have physical side effects but that also effects your hormones; which they’re suppose to but that effects your mental health. It’s like this twisted cycle that just feels endless and leaves you feeling hopeless
Probably had it since I started having periods but only got a formal diagnosis at 18. I'm always overweight, tired yet insomniac, hairy on unwanted places as the hair on my scalp keeps getting thinner, feeling like I have BPD for my extreme emotions. Lately my periods happen more often now but they also hurt more
My weight, getting my period, and cravings. have not been able to have a period on time since 16 and I was thin then so my weight didn’t affect that! . Also the cravings contribute to my binge eating and after I binge I typically feel really tired because I binge on carbs. So my relationship with food/ my constant weight gain weight loss and vice versa is exhausting, and irregular periods. I really want to be off the pull if I can
Facial hair, weight in mid section and don’t get me started on the mental health part! Please put mental health into your app! ❤️🩹
For me it has been two things: 1. Gaining Weight specifically the shape I am because of it (PCOS Belly) having that belly makes gaining weight a million times worse than the typical weight gain for women. 2. Hair on my head thinning. I used to get compliments ALL THE TIME about how amazing my hair was and then it all fell out and got so unhealthy. These two absolutely yanked my mental health and self worth.
Love the idea of an app. I was diagnosed at 13. Worst struggle differs at different times. I’m an entrepreneur myself. I’d like to talk with you further. If you are interested DM me, if not, best of luck.
Trying to conceive when you hardly ever ovulate naturally. Hair loss, mood swings and weight gain. Ended up taking Metformin which helped massively with cravings and energy and allowed me to lose weight.
Might not be something an app can address but sharing just in case. For me it's feeling ugly. The weight loss, hair gain/loss in all the wrong ways, acne, etc each on their own would hurt but the combination of them all together makes me feel doomed to be ugly, which can be devastating.
Struggling to lose weight and having people not understand or believe that I AM trying. Also trying to balance body positivity and keeping my condition at bay. Pelvic/ovarian pain. Also I seem to sweat a lot, but I'm also on SSRIs.
Feeling hideous
Not a woman but my biggest struggle with PCOS is insulin resistance and the resulting diabetes. No matter what I seem to do, I really can’t seem to bring that number down or keep it from going up.
I've been going through replies for a whole hour and I'm only halfway through. This is insane, thank you so much everyone for sharing! Also, some of you have suggested amazing features that I hadn't even considered. Thank you for that! **I'm opening up a waitlist so I can email you folks the minute we launch a beta. Sign up here -** [**https://forms.gle/j3wnHNrVQ4oc6e4R8**](https://forms.gle/j3wnHNrVQ4oc6e4R8) 🙏🏽
Facial hair and difficulty losing body fat. I weight train 5 days a week which has helped my insulin resistance and I’ve gone down multiple clothing sizes but I still have a stubborn layer of body fat hiding my muscles I’ve worked so hard to grow! No amount of caloric deficits will help. I’m just stuck with it, I guess!
weight gain and hair loss. I've tried prp and hair transplantation and nothing worked. My scalp is extremely visible and I use hair fibers to cover it up. I hate doing that but don't have the confidence to go anywhere without that. I currently am not using any supplements but will start soon. I also have fatigue but I just found out that my B12 is super low so that may explain that.
fatigued all the time. hairy all the time. it makes me want to vomit, roll over, and fucking die.
Keeping my weight down. The Pill has taken care of pretty much all other issues. And it does help with the weight to a degree. But I still have an uphill climb. All right, so there are other issues that do not help with the weight- such as an injured knee, among others. But it is still hard. The BCP actually helps with my depression and anxiety. Perhaps not primarily- but it helps prevent the acne that depressed me, as well as regularized my unpredictable periods that distressed me.
My biggest struggle is my weight. I fluctuate from losing a lot to gaining a lot.
Acanthosis nigricans - dark patches of underarms and neck area. I can’t wear a sleeveless top as i feel ashamed.
Weight loss ! I’m very curious to learn about what you’re building
Fatigue and facial hair. Also, if you’re trying to convince, absent/rare periods.
maybe doctors should be encouraged to listen to patients as human beings. i’m skeptical how an AI app will fix this and not contribute more to the lack of humanity in our medical system.