7 Things Every Woman With PCOS Must Know
I thought that it would be a good idea to put together a PCOS FAQ. When I was diagnosed with PCOS, I had no idea what it really meant. I assumed that my excess testosterone levels were causing me to be insulin resistant. Little did I know that it was actually the other way around.
During the appointment when I was diagnosed, I was told that I’d have trouble conceiving. I took this as gospel and resigned myself to the fact that I was probably never going to conceive naturally. My initial reading on PCOS confirmed this, as every website stated that I would struggle to conceive with PCOS.
It wasn’t until much later, during my functional medicine training, that I realised this wasn’t the full story. The only reason for PCOS infertility is unbalanced hormones stopping ovulation. If you fix the underlying issues that are causing the hormone imbalance then you can stop PCOS infertility and have the same chance of getting pregnant as someone without PCOS.
It really pays to keep reading, watch videos, listen to podcasts and understand more about what’s going on in your body. If I’d just accepted what my GP had told me then I may never have found the motivation reverse my PCOS! I’ve put together this PCOS FAQ to help you get started: it contains seven questions that every woman with PCOS should know the answer to.
Q: What Is PCOS? How Did I Get It?
PCOS is a hormonal condition that causes your body to produce excess androgens. Androgens are the name given to a group of hormones that includes testosterone, DHEA-S and androstenedione. These hormones are responsible for most PCOS symptoms: infertility, acne, hirsutism, and male pattern balding. PCOS is diagnosed (well, it should be, according to the Androgen Excess and PCOS Society Taskforce guidelines) by a blood test to test your androgen levels, and the presence of polycystic ovaries (or lack of ovulation).
Excess androgens, even just a small amount, can stop normal menstruation and ovulation. But the great news is that it’s absolutely possible to reduce them and get ovulating again. The secret is to treat what’s causing them to be high in the first place.
While there is definitely a genetic component (1) to developing high androgens and PCOS, studies have shown (2) that genes can be turned on and off by environmental factors.
This is called epigenetics. When the right environmental factors are present, it makes those of us with PCOS genes more susceptible (3). However, this also means that if we remove these factors (a.k.a. treat the root cause), we can reverse our PCOS.
The secret is finding which factors are affecting you.
Q: Do the cysts produce the testosterone?
Contrary to the name of PCOS, the cysts do not cause PCOS and are certainly not cancerous or tumor-like, as they may sound. They are merely an innocent symptom of the perfect metabolic and hormonal storm that’s going on in your body.
The cysts are simply egg follicles that haven’t been released when you’re meant to ovulate. Rather than being released, they remain ‘stuck’ on the ovary and appear as cysts.
Up to 25% of women(4) have poly (many) cystic ovaries, but not the syndrome. But to have the syndrome, you need to also have the high levels of androgens as well. So when we talk about the ‘cause’ of PCOS, what we really mean is the cause of high androgens. This also means that you can’t be diagnosed by an ultrasound alone, you need some blood tests to confirm high Androgens. Read my article: Have you been misdiagnosed with PCOS
Q: Are there different kinds of PCOS?
Yes. There are different types. By ‘types’ I don’t just mean people with a certain symptom, like hirsutism. What I actually mean: those with different types have different causes of why their hormones are all over the show (PCOS) and therefore different treatments to get everything working properly again.
You may read online about someone with PCOS having great success with a very low carbohydrate diet and think that this is the miracle solution. That might be the case if her PCOS is caused by insulin resistance alone, but if your cause is, say high stress hormones, it could actually make it worse.
PCOS can be caused by many factors, the most common I see being:
Insulin resistance and inflammation
Hormonal birth control
High stress hormones
Inflammation (without insulin resistance)
But you don’t need to fit into just one category, you can actually have multiple causes and this is quite normal, especially in my clients that are corporate professionals. They’re often working long, stress-filled hours with tight deadlines and also exercising daily to try to keep their weight in check. So what may have started as insulin resistance and inflammation has now been exacerbated by adrenal hormones.
I was a great example of this. I was completing a double degree with honours and also training for World Triathlon championships. I was training twice a day, living on sports drinks and gels (hello insulin resistance!) during my long rides and runs and feeling absolutely shattered. I’d also had a history of tonsillitis as a child and would have had 20 rounds of antibiotics before I was 10 years old. This would have caused a host of gut problems and chronic inflammation.
My test results showed:
High inflammatory markers
High DHEA-S and cortisol that was 3 times the highest end of the normal range and
Possibly a thyroid condition. This wasn’t picked up until much later and I think this was caused by the inflammation and high stress hormones, rather than a cause of my PCOS. But we will never know as this was never tested when I was diagnosed.
After I was diagnosed with insulin resistance, I significantly reduce my carb intake. But it wasn’t until I addressed the inflammation, food intolerances, stopped all endurance exercise, and fixed my gut health and my stress hormone levels that I started to see any improvements in my PCOS.
Insulin resistance really is the most important thing to get tested for first, and many women don’t know they have it, because the common tests, HbA1c and fasting blood glucose are not sensitive enough to pick up on early stage insulin resistance.
Q: Is there a cure for PCOS?
You might have read that there is no ‘cure’ for PCOS. This is true, but that’s just like saying there is no ‘cure’ for obesity. If you’re predisposed to obesity, it can come back, but it doesn’t mean that you can’t lose weight, ever. It will just be a lot harder for someone with it than someone who is not predisposed to it. This is exactly the same in PCOS.
I’ve managed to reverse my PCOS (read more about what I mean here), but it doesn’t mean I can now go and eat the bakery out of all the croissants. It is something I’ll have to manage carefully for the next few years, at least. They say you get a new body after 7 years, so I’m setting myself a date with Paris and a pan-au-raisin or two in 2020.
The PCOS society and other bodies are just trying to set expectations that there is no miracle pill or surgery that will magically make your hormones better again. However, the unfortunate side effect is that women like me read this and think, “Well eff it, there is nothing I can do, I might as well start saving for IVF.’ This is a really unfortunate side effect and something that needs to change.
Even if you have a genetic predisposition to PCOS, the right environmental conditions must be present for those genes to show..
The good news about this is that if we can figure out what those environmental triggers or cause(s) are, in most cases, if we remove these environmental factors it can be reversed.
Q: What can be done about PCOS in the long term?
Reversing PCOS is all about treating the root causes.
I’ve written extensively about the causes of PCOS in my article ‘What’s causing your PCOS and why you need to know’. In summary, the most common root causes of PCOS that I see are:
1. Insulin resistance and Inflammation
We know from studies that 70% of women with PCOS have insulin resistance( 5).
Insulin is our storage hormone. When we eat, our body detects a rise in blood sugar. Our body doesn’t like blood sugar to be high, as over the long term this damages the cells in our brain, liver, pancreas, heart, and eyes—so it stores it away in the cells in our muscles and liver for later use.
Insulin is the hormone that tells the cells to open up and let glucose in. It’s excreted by the pancreas and binds to a receptor on the cell to open it up, similar to the way a key opens a door. When the key has been used too much, or there is chronic low grade inflammation, the lock starts to get a bit worn and clogged up; the key no longer fits. This is insulin resistance.
High insulin levels stimulate the ovaries to produce more androgens(6) and also
reduces the amount of Sex Hormone Binding Globulin (SHBG)(7). SHBG is like a sponge for excess hormones. If it is low then the amount of hormones running free will be much higher.
Not all women with high insulin develop excess Androgens and PCOS, and that’s where scientists propose genes play a role.
While you may have heard about Insulin Resistance, you probably haven’t been told about its connection to inflammation (when your immune system is chronically activated). Studies have now shown that inflammation can cause insulin resistance(8) and that it possibly has to be present for insulin resistance to occur. This becomes really important when we start to talk about treatment, and why simply removing carbs isn’t effective for many women—you also need to treat the inflammation.
2. ‘Post- Pill’ PCOS
The pill disrupts the communication between the brain and your ovaries, which stops ovulation. For most women, this communication (and periods and ovulation) resumes after they stop taking the pill, but for some it does not. In this case, it’s not the Androgens that are the problem, but two other hormones, Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH), or more accurately, the ratio of these. LH and TSH are what kick off ovulation. If the ratio of LH to FSH becomes greater than 3:1, ovulation won’t occur.
Unfortunately, this isn’t a well recognised form of PCOS, and so there is very little research available. If you had normal periods before going on the pill and don’t have any other PCOS symptoms, it’s likely that you have post-pill PCOS.
3. Adrenal PCOS
Stress or ‘adrenal’ PCOS is the third most common cause of PCOS that I see. This can be either physical stress (too much high intensity exercise) or psychological stress, or mostly often, a combination of the two: a highly stressful job and too much high intensity exercise.
When we are putting ourselves under a lot of stress, our brain detects this and stimulates our adrenal glands to produce our stress hormones: Adrenaline (the fight and flee hormone) and Cortisol, Adrenaline’s long term cousin. However, at the same time the brain also produces Androgens such as DHEA-S and Androstenedione.
Most people (and even physicians) are not aware that 50% of women with PCOS have excess adrenal androgens(9).
If you’re feeling tired all the time, if you’re waking up tired even after 7-8 hours sleep, if you’re feeling exhausted after exercise or tired but wired at night, then your stress hormones might be causing or contributing to your PCOS.
4. Inflammation (non-insulin resistant)
Inflammation is when your immune system is chronically activated. As I mentioned above, it goes hand in hand with insulin resistance, but it can also act alone.
Inflammation can be caused by many things:
Eating foods that you’re intolerant to
Poor gut health
High stress hormones (yes it goes hand in hand with stress PCOS too)
Inflammation has been shown to increase androgens and stop ovulation without insulin resistance. If you get recurrent infections or are sick all the time, have allergies or asthma, sore joints, irritable bowel syndrome, or skin problems like eczema, this could be an indicator that you have chronic inflammation.
5. Hidden cause or contributor
If you’ve read through the other four areas and nothing is jumping out at you, then you may have a hidden cause of PCOS. A thyroid condition is the one that I see most often, and is not surprising given that studies have shown that up to a quarter of women with PCOS have a thyroid condition(10). Unfortunately, most would have never had their thyroid markers tested, or if you have, they probably only measured Thyroid Stimulating Hormone (TSH) which can be inaccurate in PCOS.
One of the main symptoms of a thyroid condition is hair loss (which can often be missed as it’s also a PCOS symptom) and high cholesterol (11). If you are suffering from either of these, please get an appointment to have your Thyroid tested.
Q: Does a PCOS diagnosis mean I am infertile or will need IVF?
I was recently flying back home to New Zealand for a visit and was seated beside a lovely lady, who after asking what I do now, she said, ‘Oh that’s fascinating, my daughter has PCOS and was told that she would have trouble getting pregnant but she went on to have 4 children without IVF, isn’t that a miracle?’
Great news, yes, miracle, no. Fertility is not some black art or snake oil. It relies on physiological processes such as hormone regulation and if these are out of balance then ovulation won’t occur.
Unless you have some other physical reason that’s rendering you infertile (shortened cervix, etc.), the only reason PCOS affects fertility is that your hormones are stopping an egg being released, or it is being released, but in such an erratic pattern, it makes it hard to identify and time intercourse.
It can also mean that progesterone is suppressed and therefore the egg is being released and inseminated, but there isn’t enough progesterone to help it burrow into the uterus. This is one of the main reasons why miscarriage rates are so high in women with PCOS.
If you can fix the root cause of why your hormones are out of balance, then your fertility will return.
Q: What can I do next?
If you have been having a hard time with your PCOS symptoms, and jumping between diets, supplements and medications and nothing seems to be working, then please try to find your causes and treat those.
The most common cause is insulin resistance, so that needs to be ruled out first. While your doctor may have done a blood glucose test or HbA1c, this is not accurate. You need to have insulin tested or better yet, an oral glucose tolerance test.