Does PCOS get worse?

[Kenmia92]

Does PCOS get worse? I’ve been diagnosed for a year and a half - give or take. Since coming off the hormonal coil I’ve had periods, sometimes I’d be late for a couple of weeks, which gives false hope of pregnancy... the last month or so I’ve seen more and more hair fall out and a couple of black hairs on my face. My face getting more spotty and weight gain - all kind of classic symptoms but everything is getting worse- am I being paranoid or can pcos get worse? X

[Hidden]

It does if you don't manage it. Cumulative issues push hormones and metabolics further out of balance as time goes on. Sounds like the coil was masking symptoms, which is the point of having birth control. The imbalance still exists. You should do some research into managing PCOS via lifestyle because even the bc isn't enough by itself.

[Kenmia92 in reply to Hidden]

Thank you so much. Would you recommend any websites or anything I can have a read on? I’ve done some research but always good to do mlre

[Hidden in reply to Kenmia92]

For lifestyle changes? Not really, I just plug in ketogenic diet in case I need a refresher on what foods I can eat, and I typically cut out anything that causes bloat or abdominal pain like grains and dairy both of which is said to be bad for PCOS and anything high on the gylcemic score (which is, hilariously mostly grains, potatoes and dairy so basically all very common modern staples) aside from fruits and most non starchy vegetables. I have a bunch of cookbooks on ketogenic diets, and personally I use a 20/40/40 carb/fat/protein allowance which gives me 100g of carbs to work with a day. For exercise I limit it to 20 minutes of cardio as my thyroid isn't functioning at its best and any more taps it out quickly, but weight lifting has been said to be better for PCOS to reduce testosterone. The best advice I can offer for dietary is listen to your body after you have a meal. If it causes pain, gas or bloat, try cutting it out. Log your meals. Keep a journal. Do exercise regularly to stave off PCOS depression.

For researching, I use PubMed, mostly, StoptheThyroidMadness is a good one about the thyroid aspect of things. Blogs of people like us are also useful because you get a sense of how it affects other people and you can chase down lines of research they're doing.

Just Google, to be honest. It's what I do. Pick up some keywords and set aside some time, say a couple hours, to chase up all the links and evaluate and see if there's any actual evidence at a research level.

I mean, a forum conversation and searching the topics they were discussing led me to find out things like NHS doctors will try to sell you on a hormonal birth control and be like 'it's to protect the lining of the womb' which is nonsense.

When you start digging into the studies done on the association of PCOS and endometrial hyperplasia with endometrial cancer risk, the recent research studies doesn't bear out theory that not having a period increases the risk (and if you connect it up to history, women in ancient times went without periods for months or years because during hunter gatherer eras they were highly physically active which reduces the reproductive cycle, and you get this same thing with women in the military), and the study the Royal Gyne association uses to support its 'protect the lining' campaign is outdated (1950s) and suspect in its methodology, but still use it for whatever reason.

[Kenmia92 in reply to Hidden]

Thank you so much, I’ve had a google and I’m following the ketogenic diet - and feel better for it! (Only 3 days I’m but feel less bloated which is a start I guess) I didn’t realise how much food would affect me. I have such a sweet tooth, I’m glad I found this out now than comfort eat my hair away!

[Hidden in reply to Kenmia92]

Yeah, that's pretty common. Sugar craving is one of the things PCOS can heighten. Something to do with the insulin resistance; the cells putting out an false "I'm starving!" signal which increases the insulin which in turn makes you hungry for sugary things to balance it out. I've noticed we also tend to be susceptible to inflammation from glutenous grains and dairy, but there's a lot of things that can cause bloating.

That's great! It's a big change because it's kinda for life, but if you start out slow it'll be easier to empty out the cupboard of things that aren't on the diet. Also, trying keto can make you achy and grumpy as your body adjusts.

I stuff myself full of sausage in the morning, which starts an "ugh I can't eat anymore" reaction. It definitely stops the heightened hunger urges. I've lost around 15 pounds since May on following a 100 gram carbs limit.

[Hols969]

The hormones keep the symptoms at bay so yes when you dont have them it gets worse - I came off the pill and put on 3 stone and turned into a yeti!!

[Kenmia92 in reply to Hols969]

The weight bit really annoyed me at the start, I just thought it was my metabolism! But the hair falling out is something else for me. In certain lights my scalp is just there! It’s probably not as bad as I’m describing it, but it’s defo started to be noticeable- my husband has noticed when he hoovers. Ive done a blood test to check a whole bunch of things, hopefully the doctor can give me something to keep my hair at bay. X

[Hols969 in reply to Kenmia92]

my hair kept filling the pug hole in the shower so I cut my hair short in the end so I now dont notice it as much. Are you TTC, if so it is quite limited as to how much they can help with.

[Kenmia92 in reply to Hols969]

Well we were going to try in April, but now we are thinking of waiting a little longer - which makes me feel crappy. But I had a hormonal test done and it was fine, but my hair is falling out a lot! I’m gonna cut it a little bit shorter, just to make me feel a little better. Also when I got my results over the phone the doctor said there are limited options for fertility on the nhs, apparently there has been a cut in funding. If I’m honest I just feel worst and worse with PCOS!

[Hols969 in reply to Kenmia92]

If your partner doesn't already have a child then I don't believe your GP is correct, they have reduced how many IVF treatments they give on the NHS quite some time ago (it does vary from area to area though) but you have a lot of other avenues to try before then.

The one thing I would say is generally if you are on the combined pill your chances of conceiving quicker when you come off it are increased as your body is less PCOS so if you have another 6 months before you are even trying it may be worth going on the combined pill to reduce all the symptoms.

It is extremely rare not to conceive just due to pcos, 1/3 of issues are now men as well so make sure your partner is in good condition when the time comes (my husbands sperm was awful lots of dead and two tailed sperm but improved by over a 100% by using the Boots Vit C and zinc tablets) so may be worth popping him on them as a precaution.