Hey Guys, Im here looking for tips, advice, support... I was recently diagnosed with PCOS (THIS MONTH), however I know nothing about PCOS, my doctors wasn't very informative when it comes to this condition. they basically talked about putting me on Metformin and said I need to loose weight and supplements and vitamins would be good for me to take, never told me what food to avoid or what to eat, what supplements and vitamins would be good for me.
My symptoms are:
facial hair
Bloated belly
missed period (not had one since may 2023)
extreme fatigue
period cramps but no period
craving sweets
Any advice on what I need to know or do to manage this condition will be greatly received
xoxo
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LaylasMum
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Hi LaylasMum. I was diagnosed with PCOS in 2021 and I’ve been through various forms of treatment, so hopefully I can help. However, I’m not a medical professional and I’m sure I’ve misremembered a few things, so please do check out everything below with your doctor.
PCOS is an endocrine condition which can affect how your body processes sugar. This is why most of the advice is around diet, particularly avoiding processed carbs like white bread. However, I asked for a blood test to check for the sugar issue, and in my case it didn’t apply - my blood sugar was fine. So most of the available advice and treatment options were never going to work for me. I would recommend asking for a similar test so you’re armed with that info.
Frustratingly, there isn’t much in the way of effective specific treatment for PCOS. It seems there hasn’t been much research done into it, despite the fact that it impacts huge numbers of women. (I suspect the situation would be different if it affected men, but don’t get me started on that haha.) The NHS seems to always recommend losing weight as the first port of call, despite the fact that two of the symptoms of PCOS are weight gain and difficulty losing weight, which I find particularly irritating!
In terms of supplements, myo-inositol is often recommended. However, the purpose of this is to manage blood sugar levels, which (as noted above) may not work for everyone.
The medicinal treatments available are generally off-label diabetes drugs. This is the case for metformin, which I was on for six months. I know women with PCOS who took metformin and got their periods back, but it didn’t work for me (again I now suspect that this was because I didn’t have a blood sugar issue). The side effects can be quite unpleasant - mostly gastric - but they’ll start you on a low dose and build you up to check your tolerance of it, so it’s worth a try.
After getting nowhere with metformin, I was advised that I had two options: go back on hormonal contraception if I didn’t want to get pregnant, or get fertility treatment if I did. I went for the latter, which did eventually result in my periods coming back and me getting pregnant; but clearly this isn’t the one to go for if you’re not looking to conceive right now! I’d be happy to say more about what that treatment was if it would be useful.
Hi! PCOS is indeed an endocrine disease, but it affects more than just the way your body metabolises sugar. Endocrine means it's related to your hormonal system, so PCOS involves an imbalance of hormones.
PCOS usually involves hormones that control reproduction (LH, FSH, progesterone), and hormones that control your metabolism (like sugar and lipid metabolism). Verity has good pages explaining this:
What you probably want more than understanding what causes it, is to know how to treat it. As the S in PCOS stands for "syndrome" this means that there are a range of symptoms and with this different ways it can be approached for treatment and unfortunately not everything will work for everyone.
There has been some research and the advice always start by exercise and lifestyle changes because having high BMI increases your chances of having other things (like type 2 diabetes, hear disease etc) which will be more likely (between 5-25x more) just becausd you have PCOS. However it has also been shown that it is more difficult to regulate your weight with PCOS - which doesn't mean you don't need to do it. Getting a healthy BMI is the most important thing you will have to keep on top of. Having said that, I myself do not have a healthy BMI at the moment even though I exercise and are careful with what I eat. If you're curiou, I'm trying to reduce my carbs and increase my protein intake at the moment. That's when supplements kick in (obviously targeting your symptoms).
Extreme fatigue - this might have different causes, but the usual culprits are low vitamin D and low iron. If you can convince GP to test for it, great. If not, I would immediately start on high dose vitamin D (as it's winter now). "Normal" vitD supplements are 10ug, but you want something with at least 100ug (4000IU). Note that everyone should take vitD if they spend less than 30min in the sun per day during winter! I'm taking double that (I have had proper vitD deficiency diagnosed before) and you can take even higher doses safely, but is not recommended for extended periods of time.
One of the things I want to highlight is that blood tests usually have a "normal" range and if you fall in that normal your doctor might think that's ok. With PCOS and other hormonal diseases like hypothyroidism, this is actually not the case. For instance with iron, there is a big difference between being in the "normal" range, and being in the "optimal" range. Ferritin below 30 is classed as iron anemia, but anything below 70 can cause fatigue (particularly if you have heavy periods). Look for "optimal" levels, not only "normal" ranges. (70 for ferritin is actually the "optimal" recommended for athletes!)
Period cramps - as with other muscular cramps, this can be a sign of low magnesium. I would try to go for foods rich in magnesium first, but tablets can help too.
Bloated belly / craving sweets - this can be a sign that your insulin metabolism is not working properly. There are different blood tests that can be requested to check this, but I would strongly recommend taking inositol supplements while you wait for GP to do the blood tests (you should definitely insist to get these done though). I'm still looking for the best ones in the UK, so I can't give you any brand recommendations, but ideally you want to take ones that have 40:1 proportion of myo-inositol to D-chiro-inositol. If those are too expensive for you, taking something with myo-inositol is better than nothing. You can safely go for 2g inositol per day (studies have shown safety for twice that, but benefits don't increase).
Inositol is a secondary messenger in sugar control, think of it like a cousin of insulin, and has been shown to reduce symptoms in PCOS women. The issue with it (and why it hasn't been put forward as best treatment yet) is because most of the studies didn't stratify PCOS patients correctly. As a syndrome you will have different people with different causes of symptoms. If insulin resistance is not part of your symptoms, you might not see differences with inositol supplementation (and this might be obscuring the results for the other women in which it actually helps a lot). Please note that "insulin resistance" doesn't only mean your blood sugar level. You can have issues with insulin metabolism and have normal sugar levels. If you feel very bad cravings 1-2h after meals consistently (like 5 days per week), whatever your blood sugar level is, you have something going on in your insulin metabolism. It might be a 10% reduction in insulin sensitivity, but that is enough to mess up the system and create hormone imbalance (not only with insulin, but with all other hormones). Inositol also affects the enzymes that produce testosterone in the ovaries, so it can reduce things like facial hair and improve ovary function.
Metformin and other drugs can be recommended too, but in my opiniom if your BMI is less than 30, doing the stuff I've discussed above might be a good place to start. If it's higher, you are more likely to have more severe issues with insulin resistance and "proper" drugs might help faster, but do not forget that exercise and lifestyle changes are something that you need to prioritise!
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