Does PCOS explain our symptoms

Does the name Polycystic Ovarian Syndrome (PCOS) explain our symptoms fully

Is pcos the right name for the disease?

PCOS stands for polycystic ovarian syndrome. And the name suggests that this is a syndrome associated with having lots of (poly) cysts on the ovaries.

It’s not all about the ovaries

But do you, like me feel like this name is not suitable? After all, having this disease has very little to do with having poly cystic ovaries.

Yes, results appear as poly cystic ovaries. but the symptoms have very little to do with polycystic ovaries.

For some of us, adrenal hormones such as testosterone are the culprit. Some of us may have high levels of stress hormones. And for some of us, insulin is more of an issue.

It’s not what it says on the tin

So, with this in mind. Wouldn’t it be better to have a name (or names) associated with the issues we have? And maybe we should have more than one name!! For instance, if I had heart disease. Then I would know I had a diseased heart. Having PCOS doesn’t mean we have diseased ovaries.

Maybe we should categorise PCOS, like diabetes. Having a type 1 or type 2 category.

Why not name it after the physician who discovered it. This is the case for the autoimmune disease I suffer with, Graves Disease. Named after the man who discovered it.

Yes, I know a horrible name!

Mr Graves, unfortunately, wasn’t blessed with a better surname. But do you know what, apart from the name, I’m happy with this!

The name doesn’t pigeon hole the disease. You see with Graves Disease it’s associated with the immune system being off balance. This imbalance causes the thyroid to produce high levels of hormones.

It’s not called thyroid syndrome. As this suggests it’s associated with a diseased thyroid only. Which it isn’t. Graves Disease affects every organ of the body.

Common symptoms

Like Graves Disease, PCOS affects many organs of the body. PCOS is also linked with having and developing many other chronic diseases.

Commonly, symptoms of PCOS are listed as having

•Irregular menstrual cycles/Infertility.
•Too much hair on the body (hirsutism).
•Acne
•Hair loss on the scalp/male-pattern baldness
•Weight gain or difficulty losing weight

[1]https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome

The real symptoms

But in reality, PCOS sufferers will likely suffer from the following symptoms too. I suffered from many of the symptoms below on a daily basis. For me, these symptoms are what makes the disease difficult to cope with.

•hot flashes
•night sweats
•panic attacks
•heart palpitations
•bladder problems
•urinary frequency
•stress incontinence
•vaginal dryness
•joint pain
•dry eyes
•dry mouth
•blurred vision
•brittle nails
•increased thirst
•bowel problems
•early morning nausea
•bloating
•irritable bowel
•bowel pain
•headaches
•chest pain
•leg cramps
•fluid retention
•tingling fingers and toes puffiness
•breast tenderness
•tiredness
•lethargy
•mood swings
•aggressiveness
•depression
•low mood
•loss of confidence
•reduced memory and concentration
•clumsiness

[2]https://www.belmarrahealth.com/pcos-signs-and-symptoms-polycystic-ovary-syndrome-symptoms-checklist/

Associated diseases

PCOS sufferers are at risk of developing

•thyroid disease
•hardened arteries
•risk of heart attack and stroke
•high blood pressure
•high cholesterol levels (leading to the development of atherosclerosis)
•inflammation
•depression or anxiety
•sleep apnea
•obesity
•diabetes (type 2)
•kidneys damage (which can lead to blindness, nerve damage, and hearing loss)
•coronary artery disease (narrowing of the coronary arteries – which can lead to heart attack, heart failure, or an irregular heartbeat)

[3]https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome

So you can see that PCOS, is certainly not about diseased ovaries. The name, unfortunately, trivialises the disease. To me, it suggests that all we need to do is remove our ovaries and hey presto, we’re fixed!

What’s the big deal. It’s only a name!!

For me, PCOS is so, so vague.

Now, I wouldn’t call myself a sufferer these days. I’m not cured (there’s no cure), I have ways of managing it. I still have niggling symptoms, but no way near as bad as when I was at my worst. At my worst, my PCOS symptoms were;

•Enlarged ovaries
•Lots of cysts on my ovaries
•Hair loss
•Acne
•Infertility
•Weight gain
•Extreme tiredness/fatigue
•Nausea (every morning)
•Depression
•Bowel and bladder issues
•Lack of menstrual cycle (periods being too frequent and lack of periods)
•Periods that would last for three months, with a one/two-week gap between.
•Lack of cycle – duration when there were no periods.
•Cravings and insulin-related issues.

I’ve never experienced hirsutism, like many other sufferers. And I’m sure lots of sufferers haven’t suffered from some of my symptoms. Yet we have the same disease. Confusing, er?

I don’t like that we’re all lumped together. Do you?

New names please

Earlier I mentioned about possibly having one name or categories for PCOS.

This website gives 5 categories of PCOS based around insulin resistance, ovarian function and levels of testosterone. And this website gives four categories of PCOS based on insulin resistance, inflammation, pill-induced use (birth control/contraceptive pill) and hidden causes.

In my case, the possible links could be insulin and the fact I was put on birth control at 15 (for two years) to manage painful periods!! Could categorising the disease be the answer?

Or why not, like my autoimmune disease, name it after the person/people who discovered it, like good old Mr Graves. In the case of PCOS, it would be after the doctors who discovered the presence of poly cystic ovaries, gynaecologists Dr Stein and Dr Leventhal. And believe it or not, it’s also known as Stein-Leventhal syndrome. So can we not refer to this name instead?

After reading this, what do you think?

Would you prefer a tag that was more individual? Categorising, like diabetes.

Or what about a generic name, which doesn’t mention particular symptoms and solidates us all in a better way.

Image: unsplash.com

References

References
1, 3https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome
2https://www.belmarrahealth.com/pcos-signs-and-symptoms-polycystic-ovary-syndrome-symptoms-checklist/