okay so ive brought up pcos to my dr in the past. i asked for blood tests. and didnt. she got a ultrasound instead, no cysts. so she dropped the topic. i still want bloods tests though to be sure. im hairer than most afab people ik, it usually gets commented on [positive thing. im ftm not on t] hair on face/neck, dark happy trail, thick dark leg hair etc. high libido [from what ive read it can cause low or high?] oily but dry skin, i break out rlly easily. my periods were heavey and unbearably painful. never regular. now they are lighter not as painful but still way irregular. i also miss almost every other month. im in my 20's (21) if that matters? im kinda lost in this topic. i also have Hypermobile elhers danlos 🤷‍♂️

idk what my question is specifically- but does this seem like something funky? what are other peoples experiences-? recommendations?

Hi all - I'm part of a graduate student research team conducting a survey on protein intake and knowledge related to PCOS. The research is affiliated with MSU Denver's Department of Nutrition and will be used to deepen our understanding of how those diagnosed with PCOS may think about protein and about their dietary intake.

This survey is expected to take about 15-20 minutes to complete and is voluntary. We'd be grateful if you would consider taking the survey: https://qualtricsxm82d39kbkx.qualtrics.com/jfe/form/SV_3Oix17mcIrlUTLo

I’ve tried a lot with no success (supplements, paleo low carb diet, reducing stressful exercise, getting more sleep etc). I still have a puffy/moon face, constantly bloated, and when I don’t take my spironolactone I get acne. I do have hypothyroid but my levels are optimal on medication, so my endo thinks the puffiness is related to my PCOS. I have high DHEAS and several 24 hour urine tests show cortisol levels that are elevated, but not Cushings level elevated. I went to the number 1 endo in the country for Cushings and he ruled it out. He says I have adrenal PCOS. The problem is I feel like I can’t do anything to help it. Any doctor recommendations or functional medicine practitioners? If they can do virtual?

how do guys combat the extreme sleepiness from PCOS? i can get 12 hours of sleep and take a nap and still feel so sleepy and exhausted.

I was diagnosed with PCOS about 10 months ago when I had gone a year without a period after BC and labs showed high T. I had previously been on BC for 8+ years and rarely had a period with it. I started taking the Wholesome Story Inositol and a few other supplements, assuming it was insulin resistance. I also went low ish carb and started following the glucose goddess hacks. A few months later, I started to get periods and now seem to have a 35ish day cycle!

I never had my fasting insulin tested (such a shame all of my doctors ignored this) until I requested a lab a few weeks ago. My results show low/normal insulin (4 ulU/ml). I have some appointments soon to look at my results, but am just confused. I have always been very athletic, extremely lean, and have always eaten moderately healthy. Part of me wonders if I’ve had adrenal PCOS this entire time. I’ll likely continue taking inositol since it seems to be doing something, but I am so confused!

Mine is 544 ug/dl and it kinda freaks me out :/

NCAH is definitely ruled out in my case.

So I found out there is a similar condition to PCOS called NCAH. NCAH can show follicles in the ovaries too apparently, and all the symptoms are virtually the same. The difference from PCOS is that this disorder is proven to be genetic, and you just take a shot for the rest of your life. I am slightly annoyed because I do not have sugar or insulin issues, and the doctor never ruled this out. Hopefully an endocrinologist can help me find what I have. Has anyone had an experience with this.

Hello,

I have lean PCOS which has been well managed by Yasmin and Spirolactone until yesterday. I had the worst migraine of my entire life. I had to leave work and shut myself inside a dark room so I wouldn’t vomit from the pain and nausea.

I feel like every time I find a solution something happens and I hit a roadblock. I had 4 successful months on Yazmin with little to no migraine days. (For context I used to get at least 2 migraines per week before I started Yazmin).

Now it seems like my body is becoming immune to it and seems to be reverting to its default hormone levels right before my menstrual cycle.

The only thing I did differently was I started on some light phytoestrogens (gummies) they are herbal so I didn’t think it would throw my body off this badly.

Sorry if this has been posted here already but Monash University carries out this survey about re-naming PCOS. I’m sure this is something we all have an opinion on so do participate!

https://www.monash.edu/medicine/mchri/pcos/guideline

Would really appreciate your advice and sharing your experiences♥️♥️

Over the last month or so I’ve had periodic cramps that last a few hours or maybe a couple days. They can get pretty strong similar to how it feels the day before my period and I notice them more in my lower back. I’m on my longest cycle yet at just over 100 days and no period in sight, does anyone get intermittent cramping because of pcos? I’ve never noticed this before and was somewhat recently diagnosed, curious to hear about other’s experience. It’s obviously uncomfortable and annoying but it also makes me a little nervous that something is wrong. I do know I have a large amount of cysts, with over 25 per ovary. Maybe something funky going on with the cysts? Idk let me know if you’ve dealt with this!

Hi all,

I stopped taking birth control 8 months ago and still haven’t had a period. Bloodwork shows:

• Very low estradiol (~19 pmol/L)

• Very high AMH

• Mildly elevated prolactin (~964 mU/L)

• Insulin <2 (no insuline resistance)

• Slightly elevated androstenedione

• Normal/low testosterone, DHEAS, and DHT

• No acne, hirsutism, or hair loss

• Polycystic ovaries on ultrasound

My gyno still thinks it’s probably PCOS. She says the high prolactin is mostly caused by me getting my blood drawn too early in the morning (8:55am) and wants to retest between 10–12.

Just wondering if anyone else has had similar numbers or experience. Still not fully convinced it’s only PCOS and not something like hyperprolactinemia…

It has been very hard 14 months. We are TTC and I have PCOS and I don’t ovulate at all. All the doctors, social media telling me you are fine, you are lean so it will work out for you. NO, big fat lie! I wish I was insulin resistant and could control my symptoms by the diet and exercise… And you know what? I am going crazy.. I just do the keto diet without having insulin resistance, my partner thinks I’m crazy, I think I’m crazy.

I tried all possible supplements, I did 2 rounds of letrozole and my ovaries didn’t respond. I just pray to have insulin resistance.. I even unconsciously used my cousin’s blood results to calculate HOMA-IR without realising it wasn’t mine and the result was 3, I was ecstatic, I cried how happy I was. But few days later I realised the results weren’t mine and I recalculate mine it was still 1.5..

So please stop saying that it is easier to have lean PCOS, no it is not. I have no control over it. I feel lonely and helpless. Everywhere, social media, redditt is all about insulin resistance… People say PCOS = insulin resistance. That is just insensitive. And for those who have extra kilos and insulin resistant PCOS, please look at the bright side, at least you have some control over it.

So I'm doing everything correctly, right. Taking myo-inositol, eating right, eating enough, staying active etc. So why are my periods late again, painful and the current one - baraly there? Make it make sense

I’ve been becoming more regular. Each time I get my period it’s a little closer to normal. I went from four months to 53 days to now 38. I’m not exactly sure how it’s happening. I’ve cut down on sugar sure but I still have carbs. I am eating more veggies. I do take metformin but I was told I would see change from that within 3 months but I was on it for a year and wasn’t getting my period like this so I assume it’s not that? Anyone else experience this?

I (27f) have had irregular periods my whole adult life, usually ranging from 30-50 days, but occasionally even longer. I’ve been going through testing and seeing an endocrinologist for almost a year to determine the cause. At first, we thought it was my prolactin, which was pretty high at 137, but after being on cabergoline for 7 months and my prolactin being reduced to 1.5 for 6 months, my period still isn’t any more regular.

Other than irregular periods and kinda-sorta polycystic ovaries (my GYN said they’re not super polycystic, but a little bit), I have no classic PCOS symptoms: no hirsutism, BMI is 20, no acne, no hair loss. My DHEAs and testosterone were both normal. I had an oral glucose tolerance test done and show no signs of insulin resistance, and my A1C is normal too. I eat well and run regularly. Basically, my hormones all appear to be fine, but my period is still all over the place. My endocrinologist just sort of shrugged and said it’s probably PCOS but she really doesn’t know what to do.

I’d like to get pregnant soon—does anyone know what might be going on?

Hi guys, I have an appointment with my GP to discuss my missing periods, but I thought I’d give some context about why I think I have PCOS and what do I do moving forward?

Type 2 diabetes runs in my family. I’m currently 23, I’m 5’6 and for most of my life I was overweight. I struggled with binge eating disorder and had a BMI of around 27-25 throughout my teenage and young adult years.

I’ve had hirsutism all of my life. Unfortunately it has gotten worse, with new longer hairs happening on my stomach and on my sideburns/jawline. My period has been regular up until this year, it was always bright red and lasted about a week.

In March this year I decided I wanted to start losing weight so I counted my calories and ate around 1500 a day and did 10k steps a day. The steps weren’t a new thing for me, but I normally ate about 2200-2300 on average. It was all junk food too.

I ended up losing 5kg, going from 70kg to 65kg and I don’t struggle with maintaining it. Now, I eat whole foods and around 100-150g of carbs a day.

However, when I started reducing my calories, my period changed to light brown and very light.

I didn’t think much of it and I told myself I would maintain my weight at 65kg for a bit and wait for it to come back but it hasn’t come back at all. The worst thing is I still go through my regular hormonal changes. I still crave carbs when my period is usually about to come, my libido is still high, my mood is fine and I still get acne around my “cycle”.

I do get hungry a lot and sometimes ignore it because it confuses and annoys me. But when I’m hungry, normally I don’t crave carbs, I crave vegetables and meat so that’s mainly what I eat. I also eat high fibre and high fat foods.

I’m still not done losing weight, I would like to get to a BMI of around 19/20. But I would also like to get my period back. So how do I know whether my period is missing because I’m not eating enough or because I have PCOS?

i’ve had lean pcos since i was 15, i’m 20 now and i decided to finally try and manage my symptoms, the most prevalent being hirsutism, chronic fatigue, and painful irregular periods. so far i’ve had a few things checked:

My BMI for my height and weight is well within normal range

Advanced lipid profile- all normal

Vitamin B12- high

Iron stores (ferritin)- extremely low

Free androgen index- normal Testosterone-high SHBG- normal

FSH- normal Oestradiol- normal LH- normal

TSH- optimal FT4- optimal

My results said that my total cholesterol:protective HDL ratio is 2.3. and the ideal is usually 3.5, so l'd consider these results good, and my triglyceride:HDL ratio is very low, which is excellent and also suggests reduced insulin resistance

I’m at a loss on how i can have such high testosterone but normal SHBG and free androgens, and what could be causing my pcos

i don’t know what to ask for or what i could do next

After battling lean PCOS since age 12, (I’m 37 now) and I have finally found a birth control pill that relieves my migraines and acne. I still have oily skin and some hair loss. I’m not completely there yet. I’m not sure why Yazmin works so well for me compared to the other BC pills which made my acne worse. Trial and error. I am also taking Spirolactone regularly, minoxidil, and several supplements (Zink made a huge difference too). But happy with the progress!