If you’ve been diagnosed with PCOS there’s a strong temptation to go out and look for information and resources, especially with an illness like this where most doctors have a sad and concerning lack of knowledge about it. Unfortunately, the peril of the internet is that anyone can upload information to it. I’ve seen “advice” and “guidance” about managing PCOS that ranges from the bizarre to the downright dangerous.
My advice to you, and this is serious and well meant advice, is not to trust anything that isn’t fully referenced with links to scientific research that you can go and check for yourself.
If you’ve been reading along this month, you will notice that my blog posts are peppered with links that will take you (in most cases) directly to external scientific articles. If they don’t, they’re to sites where I have personally checked the references. And check those reference – one of the things I see time and again is articles that look like they’re full of links but when you actually click on them, they’re just links back to previous posts on that site by the same author, all “referenced” again by other posts they’ve also written. That’s not good enough. Follow the science.
FOLLOW THE SCIENCE.
With that warning ringing in your ears, I thought I would share with you a couple of sites I’ve found helpful. It’s easy to feel alone when you have PCOS and quite often the community is where the first breakthroughs are made or “discovered”. I know that for me a lot of the more interesting facets of symptom management have come as a result of scientific articles other sufferers have come across and posted in the forums. The forum I use most is myPCOSteam which is mainly a social networking site but also has resources and link on it that are really helpful. I’m an ambassador there so if you see me, say hi and add me to your team. You will have to register for the site but it’s free to use. I’ll talk about them a little later in the month too. The other big forum for PCOS sufferers is Soulcysters. I may be wrong, but I think it’s the biggest networking site on the web for women with PCOS. They have the main website and then there’s also the discussion forum. You will have to register for the forum if you want to join in the discussion but you can read all the threads without registering. The main website is great – it has a lot of editorials and recipes and will often post articles about the latest research that’s coming out. You can also sign up for a weekly update from them.
Away from the forums, there’s The PCOS Awareness Association. This is another great website with a number of useful and informative resources including a glossary and an overview of symptoms. Super helpful.
I hope this will give you a small pointer to find your tribe. You’re not alone!