PCOS help!

March 14, 2018 5:59 AM

I was diagnosed with PCOS last year, and I've found that almost all support/advice groups are aimed at women TTC. I am not. Is there anything out there for me?

I realise it's a privilege of sorts to not be going through the difficulty of being unable to conceive, but I find that almost all online fora are focused around issues related to conception - one UK group I joined was almost all pictures of pregnancy tests framed with engagement rings around the test window, and posts ending in 'baby dust to you all xxxx'. I really don't want to get pregnant, and in fact find the absent periods trip my paranoia about it, so this is all irrelevant (or even mildly irritating) to me - and talking about not wanting children might not be the best for those TTC anyway. I want somewhere where I can discuss the physical/hormonal issues, good diet practices etc., as in the UK you're basically diagnosed and left to get on with it unless fertility is a particular issue, so 'see your endocrinologist' doesn't help. Any ideas?

posted by mippy to Health & Fitness (7 answers total)

r/PCOS is really great.
posted by zoetrope at 7:45 AM on March 14, 2018

I don't have PCOS, but I have several friends who do and they seem to like SoulCysters. Apologies if that's one of the forums you're describing here! But a brief look at the topics covered seems to indicate it's not all about conceiving, and none of my friends who like it are trying to conceive.
posted by lunasol at 10:52 AM on March 14, 2018 [2 favorites]

I have PCOS and am no longer interested in having babies (had 2, needed intervention to overcome the PCOS). My husband has had a vasectomy but I still take hormonal birth control to manage my PCOS symptoms. Will you GP or gyn not discuss that with you even? The key phrase in the US is "quality of life". My doctor was my greatest form of support for all the issues when I was struggling the most.
posted by peanut_mcgillicuty at 4:52 PM on March 14, 2018

Response by poster: Birth control isn't an option for me due to family history, but I have been given Metformin which is helping. We don't have assigned gyns here, we just get referred to one if there is an issue needing particular investigation, so the GP is always the first port of call.
posted by mippy at 12:36 AM on March 15, 2018

I know that doctors don't always take PCOS seriously, but I think in your case talking to an endocrinologist would be a good idea. If your family history means you have an increased risk of a hormonal issue, you want to make sure your PCOS is managed so that it isn't increasing that risk.
posted by likethenight at 8:26 PM on March 17, 2018

Response by poster: I can't just 'talk to an endocrinologist' - I have to be referred to one by my GP. GPs generally don't do this for PCOS, just for 'more serious' hormonal diseases/conditions. The family history to which I referred is more to do with the risks involved in taking the Pill/mini-pill.
posted by mippy at 8:39 AM on March 21, 2018

Can't help, but thought you might appreciate being backed up: the UK approach is to be told "your periods are irregular because you have polycystic ovaries; make sure to eat a healthy diet, and come back to see me if you decide you want to start a family", and seeing an endocrinologist or even a gynaecologist is not an option without a referral from your GP.
posted by ManyLeggedCreature at 4:45 PM on March 21, 2018