So glad to have found this thread and to read about so many people's experiences, it's never been something I've talked about with people I know because no-one else is in the same boat. Especially people sharing about their fertility!
I was diagnosed at 19 after about 5 years of struggling - from 14-17 I'd have periods that would be like 4 heavy months on and then 1 week off - my iron levels were going through the floor so I was put onto birth control and iron tablets at about 17 and then had scans and blood tests that confirmed PCOS at 19. This was 11 years ago, but I wasn't prescribed anything, given any guidance, it was just a "well, good luck" and that was it.
As I've got older, the weight gain has been the biggest issue, also meaning that I was moved onto a mini-pill so that I don't have periods at all now. I loved being on Yasmin but the risk was too high for someone at my weight so I couldn't stay on it. It's probably been 8 years since I had a period and at no point has a doctor suggested this might not be a smart move given the PCOS. I think ignorance has been bliss, because when I had periods they were so bad, and the times I've bled in the past few years for cervical biopsies/a loop excision -while not period related - have been traumatic, but it does give me anxiety that maybe they wouldn't come back if I stopped taking cerazette.
It's been so interesting to see other people mention a few things I struggle with but hadn't realised were connected - hyper hidrosis (the absolute worst in my opinion and now with my ADHD meds I've got primary
and secondary HH, it makes me feel so gross when it's worst on my face and head), lumpy boobs (only a relief in the context of this being advised when I was getting scans for what felt like a worrying lump at the hospital), mood swings, near impossible to lose weight and regular periods of depression. I'm also lucky to have acne all over my back and some sleep complaints that from googling are connected too
I'm seeing if I can get approval for Saxenda for weight loss (just to be sure it doesn't have any issues given ADHD meds I take) & I'm about 6 months into electrolysis for facial hair which has been better than I could have dreamed for my dark chin hairs. The more I'm reading into this now the more I feel like I should be getting to a specialist for some personalised advice asap.
Sometimes it gets me really down that I didn't have any support after my diagnosis and just thought my whole body and mind were working against me, rather than so many parts of my health being interconnected. So grateful to read so many positive posts about how people are managing their symptoms