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In 2017 when I was 16, I was referred for an ultrasound for having a very long period, I think about 2 months or so. It was very light, but I had also had periods before that were extremely heavy and painful. I never heard back from this ultrasound, the nhs app wasn’t much of a thing then and I didn’t really understand how to get my results. They said they’d call but they never did. I was also put on the combined pill. This regulated my periods but made doing literally anything completely impossible. Totally out of action for over a week. Then I started getting emotional outbursts. The birth control made my life hell. I came off it eventually, and then had no period for what must have been a good few years. This was pretty great as a young adult to be honest. Nobody warned me about the issues with this. Nobody told me I could be at risk. Nobody really checked in on me. The doctors didn’t care. I muddled through the next few years, on and off birth control, until I changed GPs at uni. I spoke to a doctor about the ongoing symptoms (years long) and by chance she had a look at my 2017 ultrasound. It was 2022 by this point. She said oh, did you know your tests came back concluding PCOS? I said, no I didn’t know that. She said well now you know and stuck me on the progesterone only pill which gave me searing pain and didn’t stop the bleeding. I was having really severe mental health problems by this point too, and eating issues. Years of feeling different from my peers, and feeling dysphoric about my body which was hairy, sweaty and not “womanly” feeling so ugly, not recognising the person in the mirror. I can’t remember this time very well. I felt so unbelievably low. Doctors would just send me for blood tests and not follow up, I was left trying to decipher them alone convincing myself I would be a burden if I advocated for myself. One issue per appointment, but what if I’ve got hundreds of issues? It was so hard to basically coordinate my own care, I got good at it though, made diaries, made a binder of my symptoms, tests and experiences. I didn’t even realise that this isn’t the way it’s supposed to be. After i moved back from uni the issues continued. I tried other birth control including the coil, which was so painful. I still have nightmares about it. I also have nightmares about when I woke up at 5am with it halfway out, and had to go to a&e to have it removed. Another failed treatment. I was tired. I tried the nuvaring. My mental health got unmanageable because it was a combined hormone treatment. I had a really apathetic doctor at this time as well which sucked. I asked to be referred to endo, she said she could but she wasn’t going to bother because nothing would happen. Continued being told, just exercise, don’t eat carbs etc etc to do with my weight, all the while telling them I had out of control binging issues. So many years of going to the doctors with PCOS symptoms, in all different forms, and them treating the symptom and essentially moving along. I thought that’s just the way primary care is. It’s not supposed to be like that. Issues should be managed, doctors should check in. PCOS is lifelong. Lifelong care plans should be mandatory. I almost get emotional when I think of how much I have done to take care of myself, despite the hardships. I’ve been doing my own primary care basically for years on end. It gets tiring. Every single thing I’ve got for my PCOS has been because of me fighting. No medical professionals EVER fought for me. If you’re going through the same i see you. I don’t know why this disorder is treated like it’s something we brought on ourselves, or why we have to fight so hard. You’re doing a lot better than you think.

I was diagnosed 20 years ago, 1 gp appointment, 1 hospital appointnent for a scan and a gynaecologist confirmed it all and gave me a leaflet. I feel let down, left alone to deal with myself as no treatment plan offered and its never bedn spoken about ever again. Everything I've learned is off the internet. Hard sometimes, to not let the depression get me, as it is a constant in my life on a daily basis.

I actually had a large fluid sac burst on my ovary which actually ruptured my ovary. I didn’t realise this and presumed the intense, horrendous pain was a ‘bad period’. Internal bleeding, flown to hospital and two blood transfusions later, I was diagnosed with PCOS! When I was on the pill, most of my PCOS symptoms were managed, I just had some significant darkening of the skin on my face, which included my upper lip. I hated this and so the Dr recommended I come off the pill to see if that was causing it (turns out it was). However, upon coming off the pill I spiralled into very poor mental health and 6 months later I had a complete mental breakdown, causing me to be off work for 6 months. Now my symptoms are fairly bad, I work out at least 3 times a week lifting weights and light cardio, I eat well and eat my protein but weight just doesn’t shift. Especially around my tummy. I have hair everywhere, so much so that I’ve just paid over £1k for private laser because my confidence is just in the gutter. I am so reluctant to return to the pill but I have done almost everything (specialist training and nutrition, Myoinsitol supplements, cypherus rotundas oil) - my current Dr has offered me both Metformin and a different pill which is low in oestrogen (which she thinks previously caused the darkening). I’m considering trying Metformin as my bloods indicated high insulin levels and low sex binding hormone levels. Just looking for advice if anyone has tried just Metformin? What were the benefits/downsides? Did it help? Have you come off of it? Any real life experiences welcome…. 🙏🏼

I was diagnosed over 10 years ago by a nurse in a doctors surgery, she said she had just done some research in her own time and thought my symptoms matched what she had just learned (PCOS), I was suffering with irregular periods, pain, fainting and weight gain. This ANGEL then sent me for an ultrasound internally and externally and almost immediately after my appointment, it was confirmed I had ovarian cysts and fibroids, one of my cysts being 5cm. I was grateful for the appointment as every doctor/nurse/sexual health nurse prior made me feel like I was going insane or it's just "IBS". I was booked back in to see the GYNAE specialist within the doctors surgery, who was a female doctor, thinking she will be all for women who are struggling and will want to offer the best support for women going through things like this, I was soooooo wrong. I was given the print out from the NHS page on PCOS and told there is no treatment and told to lose weight and be on my way. ( I complained big time). I was scared to death, as 10+ years ago, there was still little out there about PCOS, so I booked back in with the nurse, who then put me on metformin and this helped me massively, manage my weight and lose it safely. The bloat was unbelievable but was advised this was the cysts and fibroids popping often, but was normal and will happen. The female doctor then refused to prescribe me metformin for much longer and went back to saying its your weight you need to lose weight. I am a 6ft2 woman and was advised to drop to 1200 calories (this is not sustainable, although I did it to prove a point my symptoms were still worse). My cycles 10+ years later are between 56-75+ days and sometimes I can have a period for 17 days at a time, in 2026 alone so far I have only had 4 periods. My facial hair is worse than ever and so is my weight. I am trying, I am in pain daily and want to have children. I really want to stand up for women all around the world, this isnt normal what we are going through, we need support and we need women to talk openly about their negative experiences. After reading things on here today and about it changing from PCOS to PMOS there appears to be more things the NHS can offer, so I have booked another appointment to discuss bloat, periods, cycles, pain, facial hair, tiredness and fatigue and hopefully they will do more. Stay Strong ladies, we have each other!

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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.