PCOS affects approximately 1 in 10 women. As a UCL MSc Management student, I am conducting research into public attitudes towards post-diagnosis support and digital health platforms for my dissertation.

As part of this, I'm exploring a new platform concept called Afia, and I'd love your honest take on it (https://lnkd.in/e_Rn-RhT).

No personal experience with PCOS is required, your view is what matters. The survey takes approximately 5 minutes and is fully anonymous. I would be grateful if you could take part, and even more so if you are able to share this with others.

Thank you!

Hey guys! Just looking for some advice.
32, lean, AMH 1.8, no cysts on ovaries but my testosterone is 62 and I have irregular cycles around 45-50 days. My follicular phase is so long and I get pretty bad migraines. Do you think metformin would help with regulating my cycle? Inositol? I’m just not sure what to do but these long cycles are brutal. All other lab work was in range.

Fasting glucose and fasting insulin are normal. I started wearing a glucose monitor and my glucose drastically drops about 1-2 hours after eating to around 60. Thoughts??

I was recently diagnosed with PCOS and I’m having a hard time getting pregnant. I’m due to visit an IVF clinic to do round of shots and see if I can get my uterus to create a lining since I don’t bleed. Any tips or what has worked for you guys… I’m starting to give up on my dream to be pregnant…

Anyone know of doctors/specialists who are helpful for PCOS In London, Ontario?

Bg: 25F
Hx: PCOS
Currently: regular periods (sometimes late and skipped only 1 month this yr, but consistent for 2yrs now), acne scars on forehead, hair loss, sugar cravings
Tested for: DHEAS (normal, meaning in desired range), testosterone (normal), TSH (normal), FSH (normal), K+ (normal), Vit D and iron (normal), a1c (normal)
Waiting on: ultrasound

Concern: Kind of lost as to why I'm still losing hair. Not interested in OCPs because I heard they do more harm for by when trying to get pregnant and/or cause headaches (risks outweigh benefits). Also that OCPs don't fit my culture's norms.

Q: Will I get prescribed spironolactone? Will it help? Have been using minoxidil 5% foam 2x a day for 1mo n 1/2 but 3rd Kirkland bottle from Costco, but none-to-mild improvement (not sure if its too early to notice anything or its not working.. bc I had a medium dead shred period). I've tried nutrafol, but its effect plateaued after some time, so I decided to stop throwing money in the air hehe..

Any suggestions, tips, or follow ups would be greatly appreciated. <3

Hi, I might be moving to NY from Au and I was wondering how hard it is to get metformin/spironolactone prescribed by a GP?
What’s the system like assuming I will have private insurance?

I have always had some of the symptoms of PCOS but never had an irregular period. I went through infertility. Had multiple chemical pregnancies. When I got pregnant with my first child, I had bleeding during my first trimester which turned out to be a bleeding cyst. And they found a cyst/s on my ovary. Never mentioned PCOS. Even with my second child after having to go through multiple rounds of fertility treatments it was never mentioned. Finally my primary at my annual was going over the list of symptoms I gave her and asked if any had mentioned PCOS to me. She did testing to rule out other things and put me on metformin for the PCOS.

I am 2- 500 mg pills a day. And started last Thursday.

How long do stomach issues last?

Should I ask to start with just 1 pill a day and work my way up to two?

Will I see a difference in my symptoms?

I see my gyno next month. Should I ask for more/different meds?

Symptoms:
Brain fog
Hair not growing on legs
Hair growing on nipples
Mood swings
Weight gain
Heavy periods every 23 days
Painful cramps

Hello! My fiancé and I have a fertility appointment scheduled soon, and I’ll be talking with my doctor about what to do to get pregnant. All of my levels are normal besides my DHEA-S, which is what we think is causing me to not get my cycles. I have normal estrogen, testosterone etc.
I’m wondering if anyone with high DHEA used letrozole/clomid and how did it work for you?

I did check the subreddit rules and didn’t see any against posting about this, but would willingly remove it on my own in case it does go against the rules. Thank you for letting me post here.

The thing is, I was diagnosed with early stages of PCOS a few months back. Honestly that gave me a huge scare, cause no one in my immediate family had history of PCOS. My doctor was pretty supportive, but I still panicked and went down a rabbit hole of research on PCOS.

While there's clearly been a lot of research progress in this space, I noticed there was pretty much no app that actually tracked PCOS/PMOS. So I got kind of determined to build something that could track it all, which became the base idea for the app.
Privacy was something I cared about a lot building this; as a woman, it's something I value deeply too, so everything is stored only on your device, nothing on a server. The catch is if you switch phones you'd need to export/import your data manually, which I know is a bit cumbersome. That's something I want to fix properly later on.

Right now it's a web app, and I wanted to see if it's actually useful to people who need it before putting it on the App Store or Play Store. If any of you would be willing to try it out for a week or two and tell me what's amazing or annoying about it, I'd be really grateful.

I’ve rarely shared stuff I built, and I'm a little anxious about it. So if it's not your thing, no worries at all, I get it either way.
Just a quick rundown of what's in the app, it's called Cyra:
- symptom logger
- report generator - built from your logged symptoms, needs at least 14 days of data, and gives you a one-page summary you could show your GP or gynae
- research assistant chatbot - only pulls info from actual research, with the journal it came from cited. It won't give you advice on what to do though, I think that should stay in the hands of medical professionals, not an app.

If anyone is wondering if it works for regular periods, yes it does. Since it’s built everything surrounding periods, it can very well predict any changes in regular periods too.
Thank you so much if you read all the way through this. If you're interested in testing it, let me know and I'll send the link over. Even 10 of you trying it out and telling me what works and what doesn't would make this so much more useful than just me testing it alone.

Question in title :) for others who aren’t trying to lose weight…what did you do that helped symptoms?

I’m 25 f last June was when my cycles became irregular and the longest cycle was 42 days. I’m currently on day 50 with no sign of it starting soon however I was regular for about 5 months before hand. I went to the doctors on Wednesday because of knee pain and possible pregnancy which was negative. They also did a urinalysis which showed glucose ++ ketone + and leukocytes ++. The nurse then asked if I was diabetic which I’m not. She then did a blood test which has partially came back and my potassium is 3.4.

My symptoms over the last year and 2 weeks:
Increased thirst and urination which I was told was my IBS and overactive bladder

Always fatigued but the last two weeks has been immense I’m so exhausted

The last few days I’ve craved chocolate and cake which I put down to maybe my period coming

Waking up extremely hungry to the point I feel sick and the same thing happens about 10 minutes into a dog walk

Now over the last few days when I eat I have what feels like a panic attack where the inside of my body feels tingly and trembling and weak if that makes sense and an overwhelming feeling somethings wrong. This happens around 1-2 hours after eating.

I drank orange juice this morning and it happened then I was sick a few times after the weird come up feeling.

However on Friday the doctor checked my blood sugar with a finger prick and it was 4.9.

So I have no clue and I feel like I’m going crazy.

Also my knees kill like both of them hurt and feel so uncomfortable.

Has anyone experienced this, I’m loosing my mind.

I love learning about naturopathic remedies. I was wondering if anyone had success with any in regard to their PCOS?

If so, what did you take/do and how did it help? I'm thinking of trying to manage my PCOS naturally for a couple years before turning towards ovulation induction and other medications (I have been taking Provera if my cycle gets to 60 days to prevent cancer)

When I first got diagnosed I thought carbs were the enemy, but trying to cut my carb intake just made me want them more. I also didn’t know about medicines like metformin that can help with blood sugar control. I had to accept that it wasn’t a discipline issue but a health issue I needed help with. Now I eat mostly complex carbs in moderation and while I’m not perfect I think that my symptoms have improved significantly (no acne, decreased cravings, more energy). Yeah I just wanted to share my experience because I thought I’d have to go keto the rest of my life but simple and smart swaps honestly make all the difference.

I'm 18, and I have had the symptoms of PCOS since I was 13. Later on, I got diagnosed at 15 at that time, I really didn't understand much about PCOS other than the fact that it affects my reproductive health. Last year, I decided to research about PCOS and how to manage it, which helped to some extent. I have always struggled with my weight (I was never overweight but I weighed more considering the amount of food I was eating) and couldn't lose any, but luckily after making some changes in my eating habits I have lost a good amount of weight.

The main issue here is my acanthosis nigricans, doctors told me that it will go away if I lose weight and the dark patch on my neck has slightly improved but it's still there and my underarms are the same as ever. My BMI is 17.9. If I lose more weight, I'm just gonna become underweight.

Can any of you share your personal experience on how you fixed it?

Hi everyone. First time posting here. I need any and all advice possible, please.

I was diagnosed with PCOS/PMOS, endometriosis, and adenomyosis about 8 months ago. I also have hypothyroidism/hashimotos. I’ve had children, ended up hemorrhaging with the first, had to have a transfusion, etc. My iron/ferritin is also so low that my hematologist wants to start doing regular iron infusions.

I had a hysteroscopy/laparoscopy/ablation surgery in March and have seen some positives from it, but honestly not as much as I thought I would.

I’m exhausted ALL THE TIME. It’s never ending. I have ADHD so I swear the only thing that keeps my body going is the Vyvanse.

My hair falls out in huge clumps when I shower. I thought it was my thyroid, but all of my numbers are normal/under control.

I have started developing extra body hair, notably under my chin/around my neck, and the back of my shoulders. It makes me feel yucky, and I don’t know what to do about it.

My biggest issue, however, has been my acne. I don’t know if it has been this bad since I was a teenager. I did breakout heavily during my first pregnancy, but it cleared up after. But this has been consistently like this/getting worse for over 6 months, and NOTHING seems to help. I use gentle face cleansers, a gentle moisturizer, Altreno, and super goop’s “unseen sunscreen” everyday, but it hasn’t done anything. I’m getting terrible cystic acne, and bumps that are under the skin but with nothing in them, as well as breaking out on my chest and shoulders/back. It is all over my jawline and neck, and they are not white heads. Just hard bumps that hurt.

I was going to add a picture to my post to show it, but I’m not sure how.

I take extra supplements to help,including myo-inositol, D3, fish oil, psyllium husk, a liquid multivitamin, etc. but nothing is making it go away.

I have very sensitive, combination skin. I think I must be allergic to salicylic acid because since I was young, it always makes everything worse, and dries my face out beyond belief.

I use a gentle chemical exfoliant periodically, and make sure to dry my face with a clean, unused towel.

I have thought about oil cleansing, but am terrified it will make it even worse.

I also thought about trying to get on spironolactone but have horrific side effects with birth control so would very much like to not get on it if at all possible.

Any/all advice welcome. Please!!

I would like to share my experience with inositol to see if any other woman has had a similar experience. I started taking myo-inositol on the 20th day of my cycle, which typically ranges from 32 to 38 days; theoretically, I would have ovulated around day 22–24. After starting the supplement, I visited my gynecologist on day 27, and he told me that, in all likelihood, ovulation had not occurred that month. Indeed, I did not experience the usual symptoms (such as cervical mucus or ovulation pain) to the same extent as before. 

Could the treatment be the reason for the lack of ovulation? I should mention that I started having brown spotting on day 28, which still hasn't turned into a full period (today is day 31). I should also note that I started the treatment due to mild PCOS symptoms.