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PCOS experience
Symptoms <6mos
24 years old
🇬🇧 United Kingdom
  •  3 days ago

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!

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PCOS experience
Symptoms <1yr
31 years old
🇬🇧 United Kingdom
  •  6 days ago

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!

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PCOS experience
Symptoms 1-3yrs
28 years old
🇬🇧 United Kingdom
  •  1 week ago

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.

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PCOS experience
Unknown
21 years old
🇬🇧 United Kingdom
  •  2 weeks ago

when getting my periods, the pain is unbearable and for me to cope with the pain i have to take painkillers and i hope one day i can find a way to deal with my period pains then taking painkillers

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PCOS experience
Symptoms 10+yrs
29 years old
🇬🇧 United Kingdom
  •  3 weeks ago

At 14 I moved schools and was very unhappy, this coincided with my periods completely stopping for probably about a year. They continued to be irregular and my mum noticed (rudely) that I had quite a bit of facial hair growth. So she took me to the doctor and they suggested I get my hormone levels check and have an ultrasound to look at my ovaries. The ultrasound didn't find anything and the tests were supposedly "normal", but they still diagnosed me with PCOS. I was put on the combined contraceptive pill Gedarel and was on that for almost a decade before switching to the IUS. I think Gedarel helped a bit more with the hair growth whereas I think my facial hair has come back a little more on the IUS, but I am more comfortable in myself now and just remove the hair on my upper lip every now and then. I do wonder if PCOS means I weight centred most around my lower belly, but my BMI is normal and I have always been fairly "athletic". Over the years PCOS has been a struggle and I have wondered if I am a "proper woman" or if I could ever be desirable to a guy. This has got better with time, I am now 28 and only occasionally struggle with major insecurities. I do however still feel quite in the dark about the fertility implications of PCOS - even though I'm not sure I want children, it would be helpful to know how likely it is that can have them, or if it will be difficult.

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PCOS experience
Symptoms 10+yrs
38 years old
🇬🇧 United Kingdom
  •  3 weeks ago

I was diagnosed when I was 17, I suffered irregular and very heavy periods from the age of 11. I also had severe acne on my fave, chest and back. In my late teens I rapidly gained quite a bit of weight, that didn't fit with lifestyle or diet. I was referred to gynae, where they confirmed PCOS, the only advise I was given at the time was to start taking the pill and join slimming world. This advise has led to years of disordered eating and dieting. In the last few years I had to come of the pill because of migraines and I'm not able to take other forms of contraception. My periods are back to being extremely irregular and painful, hot water bottles are my best friend. I also took up powerlifting which has really helped maintain my weight. Its hard to live with all the symptoms, and the lack of understanding from the majority of medical professionals is frustrating.

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PCOS experience
Symptoms 1-3yrs
21 years old
🇬🇧 United Kingdom
  •  3 weeks ago

I was diagnosed after having issues regarding my periods for years, I hadn’t had a period in well over 7 months, yet doctors still didn’t know the issue since i was in my teens. After having an internal ultrasound and blood tests, my dr diagnosed me with PCOS saying that my scan seemed normal but i had raised androgen levels and other classic PCOS symptoms. Living with the symptoms can be difficult due to the uncertainty of my fertility and concerns over my weight and wellbeing. I’m currently studying Biomedical Science with a desire to complete my own research into PCOS and other women’s health issues in the future- so in a way being diagnosed with PCOS has given me a passion for developing research into the many unknowns of women’s health.

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PCOS experience
Symptoms 10+yrs
35 years old
🇬🇧 United Kingdom
  •  3 weeks ago

By my GP after explaining the symptoms and having had cysts in my ovaries when I was younger. No great having difficulties with eaa was ting disorders, sweating, hair growth, hair loss and with imbalanced hormones. Many other things that I might not even be aware of e.g related to mental health and concentration. Also having melasma on my face bothers me a lot and I spent a lot of money on this. Having to be forced to take the pill to feel better as no other methods are available to help with periods pain and irregular periods. There is little to no help through GPs and healthcare is really draining.

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PCOS experience
Symptoms 10+yrs
34 years old
🇬🇧 United Kingdom
  •  3 weeks ago

Unexplained absent periods for years and then v irregular periods. Now looking to fertility and struggling but have got ovulation medication to help. In the past have had bad acne.

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PCOS experience
Symptoms 10+yrs
41 years old
🇬🇧 United Kingdom
  •  3 weeks ago

I was diagnosed officially about 4 years ago- ultrasound showed multiple cysts, this along with blood tests showing imbalanced LH/FSH and irregular periods confirmed it. Prior to this diagnosis, I had several doctors deny that I had PCOS or agree to go further with testing because they said there was no need. I should just go on contraceptives to fix the issues (weight gain, irregular periods, etc). Birth control did help regulate everything, but I wanted to find a different way to manage symptoms once I got into my late 30s knowing that I couldn’t rely on this method forever. It’s been a huge challenge staying off the pill, the second I stop my very consistent workout routine or indulge in too many unhealthy foods, it’s like climbing a mountain to get back to normal. I feel very unseen or unheard when thinking about and discussing how PCOS affects me because I don’t want children, I am not trying to just find an easy way to lose weight or look good, I am genuinely concerned about the impact it will have on my health and longevity. Cancer, heart disease, diabetes, mental disorders- PCOS is linked to all of these things. It’s not just about babies or beauty and it’s an extremely common condition. I feel there’s a real commonality between PCOS and the menopause- PCOS being like a permanent peri-menopausal state. If we could use the great momentum we’ve gained with discussions about the menopause to drive awareness of these common hormonal imbalances (endo too) it will really help support women in such an impactful way!

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