Cross post, PCOS questions!

jaimrlx

Hi everyone! I originally posted this to the other PCOS group I'm in, but it doesn't have many members. Found this one later, so I thought maybe you ladies could help? *Side note, I did read the group description and know all of that basic knowledge.

So, I've had PCOS for 10 years (I'm only 23) and I have had a bad issue with having doctors explain a few seemingly simple questions to me. Maybe you guys can answer some of these for me? I know your not doctors, and I'm not looking for medical advice. I'm more looking for a simple understanding that will allow me to research more about this disease that has, honestly, ruined my life.

- Why does PCOS require a low carb diet? I know a lot of the diet is often treated like a diabetic diet and that it has to do with insulin production.. but what specifically? Can anyone explain the link between PCOS and diabetes to me?

- I have a 'severe' case of PCOS (with very noticeable hirsutism, too). It's hurt my liver, my kidneys and I'm even get petichiae 'rashes' all over my skin on a hot day. I have severe heat exhaustion from it as well, and consistent dehydration, even though I drink a lot of water. Is this an insulin problem? I don't understand the link between gluten and insulin if there is one, should I be cutting gluten?

- Metformin did NOT work for me. It should have helped my liver mostly, but all it did was make my fibromyalgia go on a murder spree. It also had me so depressed, I didn't leave the house for days. Has anyone else had this problem? I've been on it on two occasions. Birth control does the same thing.. I can't use them.

I am not TTC. I never will be, that flew out the window a few years ago. I'm young, I know - it doesn't mean I won't want kids, it just means that I don't want to wait 5 years of trying. What meds do you take, other than Metformin?

Thanks for any general info you can give.

gr8xpectationz

So I can't answer all your questions, but I can help with some.

Question 1: I only sort of understand it. About 76% of women with PCOS are insulin resistant. Insulin resistance is a pre-diabetes condition related to insulin. To understand why low carb is the way to go, try googling insulin resistance. PCOS is tricky, because it's this nasty cycle that impacts fertility, androgen hormone levels, weight gain, insulin metabolism, and all these other things. I discovered, for example, that my dry eyes are related to my PCOS. I'm 37 and have had acne my entire adult life. My cavity-prone teeth are related to a severe vitamin D deficiency that is a side effect of PCOS. So many things. There are some decent books that cover all this, and I totally recommend finding a couple of good books as a go-to for this kind of info. I see a bariatrician (a weight-loss doctor, not a surgeon), who set my goals at: 80-100g of carbs, 80-100g of protein, and no more than 1300 calories per day. No guarantee that this is right for you, but it might give you a ballpark idea.

Question 2: I don't know the answer to this, but I'd definitely discuss this with a doctor. I do know that diabetes makes people thirsty, so maybe insulin and dehydration have some connection. It's also possible that it's indicative of some kind of kidney problem.

Question 3 I've done a ton of web research, and I have some personal experience, and I worked for a year in the supplements section at Whole Foods. So while I'm totally not an expert, I do know at least a little bit.

For Insulin Metabolism: Metformin doesn't work for me either. NAC is an alternative, that is supposed to have very similar results but with none (or fewer) of the side effects. Google "N-Acetyl L-Cysteine (NAC) for PCOS". NAC is available online or from health food stores. I had good luck with it.

For the hirsutism: Consider trying spironolactone. I haven't tried this, but lots of people here rave about it. It is supposed to balance androgens (which essentially means it lowers your testosterone level). I believe in the U.S. this requires a prescription. I haven't tried spironolactone, but I have been trying spearmint tea (which is also supposed to lower androgens), and I think it may have helped my acne some.

To have your period: they say that no matter where your starting weight is (whether you have 30 pounds or 300 to lose), there's often something magical about losing 10%. Many many women have normal periods after 10% weight loss. I've just recently reached the 10% mark and I've had my period two months in a row (after two decades of periods just 2-3 times a year). But, until you get there, you can take inositol (available in health food stores) and it will likely start your period. I've only tried this about three times, but every time I've started taking it daily, I've started a period within two weeks. I've wondered if I took it all the time, if my period would be more regular. This one is worth more googling, I suppose.

General stuff: Also, have your vitamin D checked, especially if you have fibromyalgia too. I do not have fibromyalgia, but I used to have significant joint pain. I found out my D was critically low, and from the very day I started taking D, I was in a lot less pain. I don't doubt that fibromyalgia is a tough challenge, but if a vitamin D deficiency is exacerbating or causing additional pain, it'd be good to address it. Most women with PCOS are deficient in Vitamin D. And don't believe them when they say "take a thousand IUs a day". I took ten thousand for four months and then cut back to five thousand.

Also, if you're overweight, you're likely deficient in Omega-3s, and magnesium, and vitamin B.


My very last piece of advice, since you have "severe" PCOS, AND complicating factors like fibromyalgia,... see a specialist...preferably an endocrinologist. Don't trust a primary care doc or an obgyn with these, unless you find one that, for some reason, has LOTS of experience with these issues.

I hope some of this helps. And best of luck!