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I complained to the go for 4 years that my constant severe sweating (changing sheets three times a night), hair growth on my face and other places i had to shave every two days, sharp stabbing pains in my ovaries every month were not normal, amongst heavy periods when i did bleed (i was very irregular). I was sleepinga lot and constantly exhausted and just couldnt lose weight. It wasnt until i had an MRI last month due to back pain, that follicles on my ovaries and fluid was found, so the doctors actually now agree to go through pcos diagnosis. During this time, my anxiety and low mood was horrific as i felt disgusted in my body and confused. But, having that diagnosis pathway makes things make more sense. Lesson learnt: ALWAYS FIGHT TO BE LISTENED TO🤍

I was diagnosed in 2024 after at least a year of only having periods every other month, then nothing for 3 months at which point I went to the GP. It was the first thing they considered, and it was just bloods then a diagnosis - quick and easy. Problem was the doctor just kind of sent me away with the combined pill and said there’s nothing they could do, and I just needed to manage it. Manage what? No idea. I’d been on the combined pill for two years, and it was fantastic. I’m autistic, so I loved the consistency, having a structured break meant I didn’t need to think about it every single day, and the fact that it’s forgiving if I forget to take a dose. Then, in June, the dreaded UKMEC 3 decided to plague me. I’m overweight (BMI ~41), so obviously the risk of stroke was too high to keep me on COCP. The only alternative they offered me was the mini pill, which is notoriously unforgiving and can lead to spotting. I was so distraught because this completely ruined my consistent routine. I took it for a week before I came down with a stomach bug and couldn’t take it, and in that time I’d had the heaviest and most painful period in years. My acne flared up for the first time in years. I was completely miserable. Now, I’m really having to advocate for myself to get the right treatments. I spent the time between appointments searching for alternatives, and I found out about cyclic progesterone, which is 14 days on, 14 days off. Never at any point previously was this recommended to me. In two appointments prior I was in such distress and no one considered it, likely because it’s not a contraceptive. I don’t need, and have never needed, contraception. I have it on prescription now, but I had to tell a different doctor about it, and she had to go research it to then prescribe it. I’m now also fighting for weight loss. That same doctor who prescribed me cyclic progesterone referred me to a weight loss specialist to discuss orlistat. Orlistat would genuinely do me more harm than good. It’s a fat blocker, when I’m dealing with insulin resistance, which is carbs. Why would I cut fat for a carbs problem? Because the medication physically restricts you from eating fat with threat of gastro problems, I’d have to go fat-free, and the vast majority of fat-free foods are high in sweeteners. Plus I’m a vegetarian and I’d be restricted to like, egg whites. Therefore, terrible for the insulin problem. I haven’t had this appointment yet but I will riot if I’m prescribed orlistat. I want metformin. So overall, I’m just coasting by at the minute. I hate that I have to advocate for everything because there just isn’t standardised treatment for PMOS.

I was diagnosed in April 2025 after being on the pill for 9 years (which they put me on for heavy periods). They confirmed this with ultrasound and blood tests. I cannot actually fault my GP, they were incredible amd I got a diagnosis in 4 months. However, my periods are horrendous. They vary from 7 days to 30+ days. Its effecting my greatly, my mental health is down, my body is fat and my skin isn't what it was like. They put me on metformin to help with the cravings and my blood sugar levels, which did help. But I didnt want to be on medication, so i did some research and found Shreddy- which is a women's powder you put in a drink and tastes delicious! This has helped. But recently ive got married and been on honeymoon, and the stress from all that has sent my body into a frenzy. Im currently now on day 18 of my period amd I just dont feel like myself. Low mood, constant fatigue, and even when I wasnt on my period I was spotting! Ive been to the GP and they haven't helped me really, i just dont know what else to do.

have irregular periods, and my recent blood test showed that my LH (luteinizing hormone) level is high. I’m trying to understand what this means.

While I've always experienced certain symptoms of PCOS for the past 8 years, I had never heard of the condition before and it wasn't too obvious at first since I exercised regularly, ate healthily and managed my weight. The only symptoms I had were irregular periods (once every 45 days) and tendency to eat insane amounts of sugar. Last year I was under heavy stress and severely depressed and my periods stopped completely for 7 months. I was trying to figure out what could have gone wrong during this period as many changes started happening - excessive hair growth, painful acne that left permanent scars, receding hairline, and more. I underwent a ultrasound that found cysts and was diagnosed with PCOS.

Diagnosed a few years ago by specialist professor. Main symtoms were extreme overheating and sweating, feeling constantly like i need to eat food- leading to weight gain and irregular periods- approx 45 day cycles. Started taking metformin and increased the dose to quite high. It has transformed my life. My overheating and overeating have gone away and I can now think about food in a normal way- also periods became very regular 30 days. Other possible changes - so much happier and clearer skin. After taking metformin of approx 6 months, I started developing severe mood swings in my luteal phase, consistent with PMDD. I felt like i was going crazy. I spoke to the professor again and he suggested i take the mini pill (desogestrel). Ive been taking it for over 6 months now and It almost immediately stopped my PMDD symptoms. Now im not overheating, overeating or having moodswings. The only downside is very frequent and light periods! approx 11 day cycles.

Had symptoms for many years and was told it’s just hormones, finally 6/7 years later was diagnosed and since then had no help and just been shoved on a contraceptive pill (Slynd) that’s making my issues much worse. I have tried metformin and combined pills which were no help. I have been told to go to a private clinic for hair removal as not given on the NHS this also goes for Mounjaro which is the only thing that has helped reduce symptoms and aid weight loss and part from that I have to just “deal with it”

I went to the GP first when i was 19 due to excessive hair thinning, increased facial hair growth and hair fall and weight gain. I also had irregular periods. I was sent for an ultrasound scan but apparently nothing was visible- but it was only a lower abdomen scan. and the doctor said i might have pcos so he prescibed oral contraceptive- combined pill. the pill made periods more regular but i couldn't continue as weight gain was still excessive. no other treatment was given. I have since gone to the GP may times but apart from a blood test nothing more is being done. and blood always comes back as 'normal' they say.

I wanted to add my experience because I couldn't see anyone else who said they had regular periods and a PCOS diagnosis and that was my biggest anxiety over trying to get a diagnosis. I told myself I wouldn't be believed because I didn't have the biggest indicator. I got lucky with an incredible doctor but I just want to reassure anyone who also has regular periods but other symptoms they believe means they have PCOS, trust yourself, only you know your body and if something doesn't feel right then persue it. I'm so new to this and don't know what the diagnosis means for me and my life but I think it's important to recognise you don't need every single symptom to have a condition.

I was diagnosed after half a year of not having a period. I went for an ultra scan confirming arrested follicles in my ovaries. I also experienced other symptoms, such as abrupt weight gain, excess hair growth in new areas, acne, hair loss alongside missed periods. As for what happened after diagnosis: I was barely given any information about PCOS and what it entails. All I was told was that there was no treatment aside from birth control, and sent away with a link to a random website with basic background information on PCOS. Since then, I've been conducting my research online, relying on PCOS communities. I found out that while there wasn't a cure or a "one size" treatment, birth control wasn't the only option - there were a lot of other medications available in combating different symptoms (such as metformin, spironolactone, etc. - albeit, these are off-brand and hard to access on the NHS). Despite this, it's still very difficult to convince your doctor to tailor a treatment plan in accordance with your needs and preferences. They'd rather stick to the simple and cheaper option (birth control), and I feel like after having done my research, I'm more knowledgeable about the condition and the options available than most doctors I've spoken to so far. It's also very disheartening that an endocrine condition is still being treated as though it's solely a reproductive one ("Come back when you want to get pregnant"). It feels so frustrating to live with these symptoms, because a lot of the time, you'll suffer without realising it and find out with experience just how many of your weird symptoms and experiences were in fact not normal, but linked to PCOS yet again. For example, if you constantly feel fatigue, you'll blame yourself for being "lazy," "unproductive," then come across a forum or article that highlights a correlation with said symptom/state and PCOS. This can apply to any range of vast symptoms you may experience with this condition. The sad reality is, doctors don't really give you a thorough breakdown, because of reductionism (it's not treated with the same level of care as any other complex condition). There have been many times I've been angered just thinking about it. I often have to pluck hairs off my chin when getting ready to go out anywhere - and I find myself envying those without the condition who're able to get ready a lot quicker without having to worry about such routines, especially in instances where I'm late because I completely forgot to check for growth and have to dedicate 10-20 minutes extra to hair removal last minute, otherwise I'll feel self-conscious. I also used to have very healthy, thick hair - alas, with PCOS, not only has it thinned immensely (I can always pull chunks of my hair out without any force) but it's also become weakened and more brittle. Maintaining my weight has been a different hell. I've always eaten less portions than my peers, and do not eat excessively. Despite this, my weight fluctuates drastically. I try to be active, make conscious decisions to walk whenever I can, etc. - yet, even after making subtle progress over the years, all the weight I've lost can easily all come flooding back in a matter of mere weeks without any change, just that my hormones aren't being agreeable during such a period. I've gained 5kg in a week despite no dietary/lifestyle changes before too, which is classified as irregular rapid weight gain. Paradoxically, doctors may simply advise you to "lose weight" to help such symptoms, which will make you want to scream. There are many other symptoms I can discuss endlessly, such as suspecting potential insulin resistance (which I've never heard about until I read about it online) which causes a lot of crashes and random sugar cravings - I'm not even sure that my GP has tested my insulin before, even though insulin resistance is one of the most common symptoms. I've had a lack of support and guidance since my diagnosis and a lot of dismissal. Without the informal, online PCOS support groups out there, I don't think I'd even know a fraction of what I do about PCOS. I also feel like the NHS doesn't want to invest in PCOS patients & overall is unwilling to provide more targeted support, let alone even taking the time to inform their patients thoroughly and accurately. Upon hearing about these experiences, a lot of people who suspect they might also have PCOS or experience correlating symptoms tend to feel anxiety. I would say that it actually truly isn't PCOS that is scary - it's the uncertainty, the feelings of hopelessness and confusion, the lack of empathetic care and treatment options. If treatment for this condition was more advanced and researched, it would be a lot less intimidating overall. That's the sad reality.