Search PCOS experiences

Medically gaslit until I went private, my first gynae and endo consultant appointments fully supported me and were convinced I had PCOS (even before confirming on a scan). Tests were all coming back inconclusive beforehand (aside from blood pressure which was getting worse), my consultants noted that a ‘full blood panel’ on the NHS isn’t really a full blood panel. Metformin didn’t work on me and I was gaining weight despite lifting weights and eating healthily, it made me suicidal. Since switching to ozempic (low dose), my body finally feels like it is mine again, and the weekly has helped my insulin levels massively. I am privileged to access this though, as it’s private only and roughly £100 a month from Boots (other chemists charge a lot more). It can also be tricky to procure if you don’t live in London. For all the health and peace of mind it has brought me, I feel like it’s worth the expense. This, along with Yasmin, has honest saved my life. Things aren’t perfect but life is a lot more bearable and manageable now. I’ve suspected endometriosis but do not wish to go through the surgery to diagnose, at the moment, so am leaving that for the time being. With Yasmin stopping my periods, the excruciating pain and heavy bleeding hasn’t really been an issue anymore.

I was diagnosed after experiencing some irregular periods and sometimes periods that would last for almost 2months. Living with PCOS for 3-5 years has been challenging, especially coping with heavy bleeding and clotting. There have been instances where I've had to spend up to 12 hours in the emergency room seeking relief from the symptoms. These experiences have been physically and emotionally draining, impacting my daily life significantly. Managing PCOS requires patience, resilience, and support from healthcare professionals and loved ones.

My entire life I’ve struggled with my weight. Periods were a little heavy and my regular cycle was always around 38 days, which my tracker app Flo suggested was too long. A year ago I was finishing my studies and experienced a huge amount of stress -> my period suddenly stopped and I started reading about PCOS and I thought I might have it. After 70 days of no period I went to my gp and shared my concerns and she (thankfully) send me to the hospital for an internal echo where they did diagnose the PCOS. I was devastated but at the same time a lot of things clicked for me. Didn’t do hormones bloodworm because gp thinks it’s not necessary as I’m not trying to conceive. Gp wanted to put me on the pill “to fix it” (her words), but I’ve never been on birth control and I still feel like I want to make sure ‘it’ still works down there. One thing I notice having the biggest effect for me is stress, the irregular periods have been really annoying and stressing me out, then stress worsens the PCOS and the cycle continues… I have irregular periods but I often do still have a period, but I sometimes have a 40/50 day cycle. When I do have a period or ovulation it sometimes feels like getting stabbed, more painful than I ever had before. But I’m learning that’s part of it? I just always take Advil with me wherever I go. Right now I’m educating myself more on what to do rather than trying to “treat” the PCOS through contraception but maybe I will get that hormonal iud anyways or something idk.

Diagnosed by blood test and hard having to maintain some of the side effects and anxiety if I forget to

I got diagnosed with PCOS when I was 19 years old. I started getting signs and symptoms but I did not know what was going on with my body. Signs and symptoms such as irregular periods, facial hair, acne, hair loss, oily skin and difficulty conceiving. I can remember one month I bled throughout the entire month the bleeding didn’t stop that’s when I went to my GP. They sent me for a scan, the results came back stating that I have PCOS. I did my own research to gain more knowledge about it. Regarding my fertility journey they wanted to put me on contraceptive pills to try and regulate my period but I refused, instead I seeked treatment. Now, I am 28 years old my period is regular and my body has settled meaning less facial hair, oily skin and I have now conceived. I know it can be very stressful and frustrating when you don’t know what’s going on with your body. Don’t wait too long as I did, if your experiencing any signs or symptoms which I have mentioned earlier please go and see your GP also do your own research to understand what your dealing with. I know it’s not easy having PCOS it’s a daily struggle when your hormones are like a rollercoaster. Sadly it can’t be cured but it can be treated by dieting, exercising, less stress and a good sleep pattern these changes worked for me.

I self diagnosed as I have every symptom. it is very depressing at times because I struggle to loose weight even when I change diet.

I came off the combined pill (Rigevidon) in April 2023. I had been on it since 2016/2017 and decided to have a break after I read the book “How the pill changes everything”. Since April I have had very irregular periods, my cycles have ranged from 10 days to 80 days, with bleeding ranging from a bit of spotting to being heavily on my period for 4 weeks straight. I had blood tests and then a recent ultrasound which confirmed PCOS and a thick lining of the womb. Other than the issues with my periods and associated symptoms (weight gain, thicker/quicker growth of hair), I have generally felt better in myself since coming off the pill. I feel much more in tune with my emotions (both lows and highs) whereas on the pill I sort of felt generally kind of low all the time. I don’t want to go back on the pill or contraception to manage PCOS as I feel like this is just a plaster to the issue of unregulated hormones. When I come to try for a baby for example, I will still have the current problems so I would rather try and solve things at the root. However I don’t know where to start and feel like I’m just going to get fobbed off by doctors and advised to go back on the pill. I am really open to trying anything. I tried drinking more spearmint tea and having a high protein, low carb breakfast but the effects have been very minimal. I have read about myo and d-chiro inositol but haven’t tried this yet? I have tried to focus more on gentle exercise but I find this really hard to do due to motivation and feeling fatigued. Not sure if a private consultation is worth it to get some more expertise advice/recommendations other than going back on contraception, or whether I am likely to just be advised to go back on the pill. No idea where to start really and feeling like it’s down to me to figure it out! I have booked a follow up appointment with gynaecology via the NHS but it is not for 8 months!

Came off contraception and started trying to conceive. Periods became more and more irregular. I had the COVID jab and got COVID around the same time and since then have not had a period for over 110 days. Gained 8% of body weight in a <6 month period, however I am still 'slim' with a BMI of 24. Developed mild acne. Small amount of excess facial hair. Attended GP who felt my symptoms were not significant but arranged blood tests. showed LH:FSH of 22:5 - which GP said was normal. Testosterone slightly high at 1.9. Thyroid tests TSH 3.9. USS showed very polycystic ovaries with raised volume. I have now spoken to GP about being referred for fertility treatment as meet the criteria as >6 months trying to conceive, but not ovulating. Feel quite helpless at the moment and frustrated with my body for not doing what it is supposed to do! I feel like it might be something to do with the COVID jab but not sure what else I can do!

I haven’t been diagnosed as yet but the re ate suspicions. It sometimes affects my mood and have bloating. My periods are more frequent and heavy which makes me really tired.