PCOS – polycystic ovarian syndrome isn’t just about experiencing pain and / or infertility – there are many misconceptions, myths and things we don’t associate with PCOS – and some of these things can be quite a shocker. I’ve done my best to share some of these…
Just a quick warning and a disclaimer – the idea of sharing all this isn’t to create fear, but to make you aware of what PCOS can bring with it and for you to not ignore the issues and symptoms I share here with you. Please also remember that I am not providing any form of medical advice as I am not a medical professional. Please seek a doctor for your personal case.
If you would like to watch a video version of this blog post then you can right here, or scroll through to read on…
1. It can start from your first few periods
I speak from experience on this one. I had symptoms of PCOS from my first period and this just developed further as each cycle went on.
But the problem is, patients are reassured that it takes 2-3 years for the period cycle to settle. This obviously contributes to a delay in diagnosis. But that’s a discussion for another time.
The Mayo Clinic states:
“Signs and symptoms of PCOS often develop around the time of the first menstrual period during puberty. Sometimes PCOS develops later, for example, in response to substantial weight gain.”
Now that takes me to my second point…
2. PCOS doesn’t always cause weight gain
Yes that’s true! I am an example of it. When I first started experiencing PCOS symptoms I was thin and even over the years as PCOS developed, I did not gain weight. This is not to say that I did not exercise but I definitely did not exercise enough that would stop me gaining weight because of PCOS.
I do know of people who have PCOS and have gained loads of weight and no matter how much they’ve exercised and dieted – the weight hasn’t ever come into control. And no, they did not have thyroid or any other known thing that could have stopped their ability to lose weight.
In fact, and I quote verywellhealth.com:
“30% of women with PCOS have normal weight”
It’s called lean PCOS. There has been a study on this, which I will link here.
3. Pre-diabetes & diabetes develop in 50% of women with PCOS by the age of 40
This is one thing I keep a check on and encourage everyone with PCOS to be aware of.
At the age of 12, when I was diagnosed with PCOS, thankfully I was warned about keeping my sugar levels in check.
It’s important to understand that insulin resistance can be seen in those who are pre-diabetic or who have diabetes.
Being diabetic comes with its own set of possible complications – and there are some scary ones like cardiovascular disease, eye – foot – kidney damage, nerve damage, skin issues, hearing impairment and alzheimer’s disease.
I help myself by being sensible with what I eat – I’m just really glad I’m someone who can battle my cravings and can stick to my diet.
Also, I look to be as active as possible – this is considering I have Ehlers-Danlos syndrome which has reduced my ability to be active.
Relevant read:
- My Diet for Endometriosis & Ehlers-Danlos Syndrome
- My Endometriosis / PCOS Story | How I was diagnosed with Endometriosis
- My Experience: Endometriosis v PCOS
4. Women with PCOS are at a higher risk of developing obstructive sleep apnea
This one has surprised me!
Firstly, what is sleep apnea? As WebMD explains:
“Obstructive sleep apnea is when something blocks part or all of your upper airway while you sleep. Your diaphragm and chest muscles have to work harder to open your airway and pull air into your lungs. Your breath can become very shallow, or you may even stop breathing briefly. You usually start to breathe again with a loud gasp, snort, or body jerk. You may not sleep well, but you probably won’t know that it’s happening.
The condition can also lower the flow of oxygen to your organs and cause uneven heart rhythms.”
But why does this happen in those with PCOS? Well, this is “due to the influence of androgens affecting sleep receptors in the brain”
You can get more information about this here.
5. Higher rates of anxiety & depression
Okay this one doesn’t really surprise me but I am sure it will surprise many who don’t consider PCOS to be life altering and for those who don’t get a lot of support and understanding from family, friends, employers or colleagues about their state of mind.
Healthline.com states that:
“anywhere from 27 percent to around 50 percent of women with PCOS report being depressed, compared to around 19 percent of women without PCOS.”
So if you have PCOS and are going through anxiety and depression or know someone who is then please remember that what you/they are experiencing is very valid. Please seek the right help. Please do not let anyone dismiss you.
Relevant read:
6. More difficulty breastfeeding & producing sufficient milk
I’m not a mother and so I haven’t experienced this, but this must be so tough to go through. PCOS can cause infertility so if you’ve battled this and then face difficulty with breastfeeding and producing milk it can prove to such a downer.
WebMD states:
“Researchers are finding that breastfeeding with PCOS might be challenging for some women, as it’s linked to low milk supply.”
WebMD does go on to explain the reasoning in more detail, how the cause is related to PCOS – how PCOS causes insulin resistance, interferes with breast tissue development and causes hormonal imbalance – if you would like to read more about this, then I will link it here.
7. Development of a dark ring around neck & creases of skin
This is something I’ve noticed in quite a few women and I had no idea what it was and why it happens. I guess we now know.
Known as acanthosis nigricans, these dark rings happen in those with PCOS because of the insulin resistance caused by PCOS.
8. There’s a male version of PCOS?!
Here I quote researchgate.net:
“Hormonal and metabolic abnormalities have been described in male relatives of women with PCOS. These males also have a higher prevalence of early onset (<35 years) androgenetic alopecia (AGA). Hence, this feature has been proposed as a clinical sign of the male PCOS equivalent.”
Just to clarify, androgenetic alopecia means hair-loss or male-pattern baldness.
Also, these men may also be at a higher risk of type II diabetes, heart disease and benign prostate hyperplasia later in life.
So it might be worth warning the male relatives about!
9. Not all women with PCOS actually have cysts on their ovaries
I did not know this one until a couple of years back! Because of the name – ‘polycystic ovaries’ it’s fair to assume there would be cysts on the ovaries but that’s not the case!!
According to the NHS website, they explain how PCOS has 3 main features.
The first is, irregular periods. Second is excess androgen which is high levels of male hormones – the one that causes hirsutism and the third is polycystic ovaries which is when your ovaries become enlarged and contain many fluid filled sacks.
And if you have two of the three mentioned above, then you could be diagnosed with PCOS.
Of course there are other symptoms, but these are the three main ones.
10. 70% prevalence of elevated triglycerides and low HDL
Logically, this shouldn’t be surprising, but it’s worrying.
So let me explain a bit better. 70% of women with PCOS have unhealthy levels of one or more kinds of fat in the blood caused by elevated levels of triglycerides and low HDL – HDL is the “good” cholesterol we need.
This is why having your cholesterol checked out is very important. Also, eating right and making wise lifestyle choices can make a difference too.
Relevant read:
11. The risk of heart attack is four to seven times higher and PCOS women are three times more likely to develop endometrial cancer
After just speaking of high cholesterol and insulin resistance, the heart is bound to be troubled by PCOS!
Being Indian, high cholesterol, diabetes and heart disease is so common, and now add PCOS to the mix, the combination literally becomes a deadly one.
If that wasn’t enough, then there is an increased risk of endometrial cancer.
Just to clarify, endometriosis and endometrial cancer are two different things.
As explained by cancer.gov:
“Endometrial cancer is a disease in which malignant (cancer) cells form in the tissues of the endometrium.”
The endometrium is the lining of the uterus.
Whereas, endometriosis is when tissue similar to that of the lining of the uterus is found growing outside of it.
So whether it’s the heart or keeping a check on cancer – PCOS can play a role.
12. Higher incidence of gestational diabetes, miscarriages, preterm deliveries, & stillbirths
I’ve heard of women who have become diabetic during their pregnancy, but all this that comes with PCOS is quite overwhelming for women who have struggled with getting pregnant – something I’ve even said earlier.
Gestational diabetes, miscarriages, preterm deliveries and still births – experiencing any of these can pull you down psychologically and throw you off your life path.
This is why being careful during pregnancy is essential but after a point there isn’t only so much we can do. And even taking help from a counsellor can aid the mental trauma experienced.
On that note, this list ends here – for now. So if you were not taking PCOS seriously enough earlier, then please do so now.
Thank you for reading 🙂
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