What is PCOS and why you shouldn’t just be worrying about it if you want children?

 

Hello everyone and welcome to my next post! Go grab a cuppa I feel this could be a long one! Also, skip to parts of more interest to yourselves if you wish.

What is PCOS?

Firstly what is PCOS? Well PCOS (polycystic ovarian syndrome) is a condition that affects a woman’s hormones. Most commonly it causes a higher production of the male hormone, testosterone. This is not the only cause but tends to be the most common. There are actually different types of testosterone produced in the human body and it is possible that more PCOS sufferers have these different types of testosterone in higher levels within their bloodstream. This there can cause a lack of periods and ovulation, which can make it difficult for a pregnancy to occur. There I said it, I mentioned the term pregnancy pretty much within the first paragraph. For a lot of women, this will be the most important aspect for them and I’m not taking that away from them. However, PCOS is so much more than the sub-fertility it causes and there is a great reason for the rest of us to be paying attention to it. 

Now I will go into a lot more details about symptoms and so on but for you skim readers out there here goes: Excess hair growth both on the face and on the body, acne, baldness, sub-fertility, pregnancy complications, increased risk of endometrial cancer, psychological disorders like anxiety and depression and it can also be a contributing factor to the increased risk of diabetes and heart disease. Treatments can include things such as birth control, but these will only manage the symptoms and there is no known cure for PCOS. It is thought at up to 20 – 26% of women aged between 15-44 on average will have PCOS – some of these will not even know they have it.

PCOS affects a woman’s ovaries and this can then lead to affecting the production of oestrogen and progesterone – which is produced by these organs. They also produced hormones called androgens like testosterone. The ovaries main role is to mature an ovum (egg) and release it so it can be fertilised by a man’s sperm. This is known as ovulation. There are two main hormones that are involved in the role of ovulation the first being Follicle-stimulating hormone (FSH) and also luteinising hormone (LH). As suggested by the name FSH causes the follicles to begin to mature the eggs in the ovary. Many people assume this only occurs in that cycle, but it is now thought that the maturation process may take place over many cycles and so that egg that is released at ovulation may have started that maturation process a few months ago. At this point oestrogen kicks in and prevents any more follicles from over maturing so that the body focuses on just that one egg. LH is the hormone that causes the egg to burst through the follicle and travel along the fallopian tube in hopes of fertilisation. (I know some of you are groaning at this point, but there will be somebody out there who needs it breaking down and explaining to them!)

PCOS is a syndrome. This basically means that medical professionals have grouped together a bunch of symptoms that don’t really have another cause for them and called it PCOS. Now let’s talk about these “cysts”. They are actually immature follicles, which have not yet released an egg. These immature follicles lead to affecting the production of the hormones needed in a woman’s menstrual cycle. Levels of oestrogen and progesterone are usually decreased and the levels of androgens are usually increased. They also affect the ratio of FSH and LH. Basically, the production of LH causes ovulation so the body will keep producing LH to make it happen and it will pretty much keep going until it does. What it doesn’t realise is that in this time the 1:1 ratio of FSH: LH is now wildly out of proportion and is more like 1:2 or even 1:3 in some women’s cases. This can make ovulation impossible as there just isn’t the stimulation of FSH to mature the egg within the follicles. This can eventually lead to things such as irregular or skipped periods. I just want to explain at this point for you women sat there reading this thinking well I have PCOS and I have a period every month. My question to you is how do you know you’ve actually ovulated? It is common to not ovulate and still have a bleed, call it a breakthrough bleed, much like you would have on hormonal contraception. It’s basically your body realising it hasn’t ovulated and there has been a fall in your hormone levels – usually progesterone that has caused your uterine lining to break down. PCOS was first documented by Antonio Vallinsen in 1721. However, it wasn’t properly described as a syndrome until 1935 by two doctors Stein and Leventhal (hence you may have seen it called stein-Leventhal syndrome).

What causes PCOS?

The honest answer to this? It is not exactly known what causes PCOS yet. It is thought to be caused by excess male hormones preventing ovulation by preventing the ovaries from producing the hormones required to release the egg. For example the amounts of LH and another hormone produced by the pituitary gland, prolactin tend to be much higher in women with PCOS and sex hormone-binding globulin (SHBG) tends to be much lower. Genes, insulin resistance and inflammation have all been linked to excess androgen production. I’m going to go into a lot more details about these below.

Genes – they tend to be the cause of most chronic diseases and syndromes. Unfortunately, there isn’t an awful lot we can do about the hand of cards our genes have dealt us and so we kind of can’t do an awful lot about that. Studies have shown that PCOS can run in families and be passed down. This doesn’t however mean that it can’t be controlled and this is something to be really mindful of when facing any chronic diagnosis let alone PCOS. One final note worth mentioning is that there has been no gene fully identified as being the cause of PCOS. It is likely as with many genetic diseases that there is more than one gene at play here.

Insulin resistance – Up to 80% of women diagnosed with PCOS will have some form of insulin resistance. That includes women with lean PCOS also. This essentially means that their cells are unable to make use of the insulin properly and get the glucose so badly needed into their cells. Insulin is produced in the pancreas and is a hormone that helps the uptake of glucose into the cells which are needed for respiration (the release of energy for those of you who didn’t know). In insulin resistance what basically happens is that more insulin is produced to force the cells to take in glucose that is needed. Think of insulin-like a delivery driver. Its role is to increase once food has been taken in and signals to the cells that glucose is available to them. So this insulin is signalling to the cells come on this glucose is ready. But the cells unfortunately due to the situation of PCOS, just aren’t receiving that signal. The doorman (the cell membrane) isn’t letting the glucose into the cells and eventually, the cells realise they are running out of glucose and let it in from the bloodstream. In the intervening time, insulin production has gone into overdrive. More and more insulin is being made and thinks of it like multiple delivery men trying to deliver one tiny package – overkill yes but it is the only way our body can get the uptake of glucose into our cells. This excess insulin has been linked to forcing the ovaries to make more and more androgens. Excess insulin production is also linked to obesity and obesity linked to insulin resistance (think chicken and egg – which came first), both of these increase the risk of type 2 diabetes and also heart disease.

Inflammation – a lot of you may not fully understand what inflammation is. Well, you could probably tell me it’s a swelling of an area due to damage and to be fair that pretty much is it. Inflammation is the bodies response to an irritant. Without going into masses of degree level biology it is thought that women with PCOS often have increased low-level inflammation compared to a woman with PCOS. Studies have also linked being overweight can lead to higher levels of inflammation – so for some of us a double whammy there. There have also been studies that link inflammation to the production of excess androgens and so the cycle continues.

Adrenal stress has also been linked with increasing a specific type of androgen that mimics testosterone – in fact, it could be called a brother from another mother. DHEAS is produced in the adrenal glands and has been seen in higher levels when other adrenal hormones such as cortisol have been increased as well. There is also post-pill PCOS which is caused by how the hormone levels are affected and altered by the pill. It is hoped that this type of PCOS is temporary and that women may see some of the symptoms lessen over time once the effects of the pill have worn off.

Common symptoms of PCOS

Now I know there is a lot of debate as to what symptoms go with PCOS. I am just going with the official symptoms as there are lots of different causes to lots of different symptoms that people report. I don’t think that until we have a much more holistic approach to healthcare and what our symptoms mean to our health, that we can confidently say that all symptoms reported are to do with PCOS.

Common symptoms include: Irregular periods, heavy bleeding (linked to insulin resistance), hair growth (hirsutism), acne, weight gain (in about 80% of cases), male pattern baldness, darkening of the skin (acanthosis nigricans) particularly around the skin folds such as groins, armpits and neck.

 

How PCOS affects the body

There are many different ways in which the high level of androgens can have an effect on our bodies. One of these ways is infertility – or as its better-called sub-fertility, basically down to a lack of ovulation. You can get ovulation back which should make you fertile again, it’s then about keeping it that way and timing things right.

Another big issue to talk about is how PCOS is a metabolic syndrome. It basically slows down our metabolism and can make 80% of us overweight or obese. Both PCOS and obesity can increase the risk of things such as diabetes and heart disease, and strokes. It also leads to things such as an increase in blood pressure, blood sugar, increased low-density lipoproteins (LDL’s) and a decrease in high-density lipoproteins (HDL’s – good cholesterol).

Sleep apnoea is also something that is common with obesity and can cause repeated episodes of not breathing properly when laying down. The risk for this is 5-10 times more likely in women with PCOS compared to those without PCOS.

Part of your menstrual cycle, after ovulation has occurred and there is no fertilisation is that your uterine lining should break down. It can be the case that if there is not a change in hormones specifically your LH and progesterone that your uterine lining will just continue to thicken. Endometrial cancer is at an increased risk if you have no periods at all. This is not the same for those of you on hormonal contraception as breakthrough bleeds are the artificial increase in hormones that prevent your uterine lining from being allowed to develop.

Depression and anxiety have also been linked with PCOS and hormonal changes. Many of the symptoms, like hair growth, hair loss and acne, we experience can also lead to poor self-image and can also affect our emotions. There is so much more I could say about how PCOS affects our bodies but this will be broken down into other blog posts.

How to be diagnosed with PCOS?

Doctors typically diagnose a woman with PCOS if she has two out of the three following symptoms: high androgen levels, irregular menstrual cycles and “cysts” on the ovaries. A doctor should ask you about any other symptoms you may be experiencing, such as weight gain and acne, as these can be symptoms of many other syndromes and conditions as well. These are usually tested by blood tests and checking your ovaries and reproductive organs via an ultrasound scan.

PCOS and pregnancy – I had to talk about it because for some women pregnancy is their aim. PCOS has been linked to increasing the risk of pregnancy complications such as gestational diabetes and pre-eclampsia. There is also a greater risk of miscarriage and this is usually down to the altered hormone levels, more specifically low levels of progesterone making it difficult for the body to support the developing foetus (baby) before it can produce its own hormones.

So I have PCOS but what now?

Now I will do a whole post on lifestyle tips to help with PCOS but here are some top liners to help you on your way.

Low carb is a good way to go but don’t go low carbohydrates. Have lots of veggies – I tend to aim for 10 portions a day which may be overkill but I’ve definitely noticed a difference. Another important thing is that starchy veggies – think anything that grows underground can be quite insulin stimulating and I tend to limit them to 1/4 to 1/2 a cup per serving. For those of you just starting out a low-GI (glycaemic index), a food plan is a good plan of action. This is easily googleable in the meantime. Losing between 5-10% of your overall body weight can help to regulate your cycle and also help to manage your symptoms. I also tend to keep high protein – this is because protein helps to keep you fuller for longer and is less insulin stimulating than carbohydrates and so it will help to keep your blood sugar levels more consistent. Exercise – now before I get too far into this it is important to stress that you find something you like to do! Strength and resistance training has been linked to improving insulin sensitivity but again you don’t enjoy it, you are less likely to make it a long term habit. If you think resistance and strength training might be your thing 3 x 30-minute sessions a week as a minimum, HIIT may also be something you are interested in. The important thing is improving activity levels. So even just walking more will have benefits and may improve insulin sensitivity. There is some evidence that acupuncture may help – but more research is needed into this. So the best advice, for now, is from lifestyle changes both in what we eat and how we move. But you must make sure that they are enjoyable in order for them to be sustainable long term.

Are there medications I can take to help my symptoms?

It is important to reiterate that there is no known cure for PCOS no matter what those pop-up articles may tell you. There are prescription based medications that can be used to help manage your symptoms that you may want to ask your doctor about trying depending on where you are on your PCOS journey – a lot of these for example are not advised during pregnancy etc.

The pill – better known as the contraceptive pill or birth control can be used to protect against endometrial cancer by ensuring the lining of the uterus cannot build up over time. It may also help to relieve some symptoms. However, it can also make some of them worse and can lead to things like weight gain etc. As I mentioned above it can lead to post-pill PCOS or at least make some of your symptoms worse when you initially come off of them.

Metformin also has its uses. This is a drug that is usually used to help type 2 diabetics by improving their insulin sensitivity in the cells. It is not a weight-loss drug, and any reduction in symptoms is due to lessening the amount of insulin required not the drug itself. It is not actually licensed for PCOS and some doctors are now not prescribing it for PCOS as its efficacy is under review. Some women are also intolerant to it and can have unwanted side effects.

Clomiphene and Letrozole are fertility drugs that help with ovulation. These do not come without their risks such as a higher rate of twins and multiple births at once. These don’t help with PCOS at all and it would probably be beneficial to make other changes before turning to these medications.

In terms of hair removal other than paying out for something like electrolysis or laser hair removal, there isn’t an awful lot of options. Back in 2011, I had been awarded funding for laser hair removal down when I lived in London. Unfortunately, I moved away before I had a chance to take these up and my area now doesn’t offer this funding. So it is worth checking out but I feel very few areas offer this. There is a prescription medication called Vaniqa, which is designed to slow the growth of hair. It is sometimes not available again in some areas as there is evidence to show that it is not suitable for long term use and it isn’t always as effective.

Other options include cyproterone acetate, or something called spironolactone. Both of these has been shown to help with hirsutism and need to be taken for a minimum period of time between 8-18 months due to the slow growth of hair. It is advised that both of these are taken with a contraceptive pill as they can both lead to erratic periods. They are both drugs that you equally wouldn’t want to get pregnant on either. It is worth noting that neither of these drugs is licensed for the use of PCOS so don’t be surprised if you have trouble getting them prescribed.

Another form of fertility help is surgery. This is called Ovarian drilling, and the name is exactly what it suggests. Holes are drilled into your ovaries and the hope is that it will help to lower the amount of LH and testosterone produced by your ovaries.

When should you see your doctor?

I know at present that it is difficult to be able to contact a GP and see them face to face but you should be seeing your doctor if you have the following:

• Missed periods and are not pregnant
• You have other of symptoms of PCOS, such as acne or excess hair growth especially on the face.
• You have been trying to get pregnant for 12 months or more and haven’t been successful (having a PCOS diagnosis already in place may speed up this time frame in some areas)
• Symptoms of diabetes like, excessive thirst or hunger, blurred vision or unexplained weight loss.

Once you have your PCOS diagnosis you should also arrange regular visits – at least once a year, to keep a check on things such as diabetes, high blood pressure and the risks of heart disease under check and control.

The bottom line is that PCOS is a hormonal and metabolic collection of symptoms placed into a syndrome, which ultimately affects ovulation. Lifestyle changes can have a big impact on our symptoms, medications can also make a difference to some women too. Although this is a long post I feel like I have barely scratched the surface. I will definitely be making more posts in the coming months diving into more detail. So if you would like a specific topic to look at in more detail please let me know in the comments below.

Thank you for reading this far and come back for my next blog post soon!