Did you know that the name of an illness influences the medical treatment you get? This is precisely why the Global Name Change Consortium recently changed the name of polycystic ovary syndrome (PCOS), a condition that affects 1 in 8 women globally, to polyendocrine metabolic ovarian syndrome (PMOS).
We spoke with Professor Jack Biko, a reproductive medicine specialist and a member of the Consortium, about why a name change was needed and what this means for women living with the condition.
What is PCOS?
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Polycystic ovary syndrome (PCOS) is a combination of symptoms. Patients with polycystic ovarian syndrome usually present with several factors; they don't have their periods, they've got infertility, and they've got abnormal facial hair.
Patients with PCOS typically present to the gynaecologist first because of the gynaecological problems they have. When we'd scan these patients and see cysts, it was thought that the condition was caused by the cysts, and thus the name polycystic ovary syndrome.
But PCOS is much more than just irregular periods and infertility. There are bigger problems behind PCOS than what we see in terms of infertility.
Why did the name have to change?
Unfortunately, the name has been incorrectly used for over 100 years.
Polycystic ovary syndrome is a huge condition.
It's almost like a foundation of a lot of things, the foundation of heart conditions, diabetes, liver problems, all sorts of problems.
So when we spoke about polycystic ovary syndrome, infertility was just the tip of the iceberg. That is why now we've changed the name so that we can highlight the actual problem of PCOS and not just the symptoms of PCOS.
Patients with PCOS are predisposed to developing diabetes, endometrial cancers, various dermatological problems, various psychological problems, and, very importantly, one of the most common killers of women, heart conditions.
PCOS causes metabolic dysfunction, and metabolic dysfunction can lead to cardiac issues, cardiac failure and eventual death.
We felt that the name should reflect the true nature of the condition. A lot more patients with PCOS were not diagnosed because we were concentrating on the cysts. There are patients with PCOS who don't have those cysts, and therefore, we missed them because we were misdiagnosing the condition.
We want to highlight the real importance and the fact that this is a multi-systemic condition. It doesn't only affect the ovaries, thus the name polyendocrine metabolic ovarian syndrome (PMOS).
It affects all systems in the body; patients with PCOS may have to see multiple clinicians, such as a physician, a surgeon, a dermatologist, or a hepatologist.
The truth about PCOS is the syndrome part of it. That's important.
And secondly, we had to change the name because it is not true that there is cystic PCOS. There are no cysts in PCOS. There are little follicles which are arrested. Your eggs sit in little follicles, something like a balloon. (People call them cysts). So for the egg to be released, for the patient to ovulate, that follicle or the 'cyst' must grow to about 20 mm. Then it pops open to release the egg every month.
Now with PCOS, those balloons do not grow beyond 9 mm, and therefore, you do not ovulate.
The reason they don't grow beyond 9 mm is because of the metabolic dysfunction that we don't talk about, the high insulin levels, and the high androgen levels. Androgens are hormones which are common in males. Patients with PCOS tend to have high male hormones, thus the abnormal hair, and thus the eggs don't grow because they don't ovulate.
Who made up the name change panel?
The name change panel was not comprised of experts only. There were patient groups, people living with PCOS. Then there were specialists in the various fields: the reproductive medicine or gynaecologists like us, the physicians, the guys with usual heart problems, the dermatologists were there, the psychiatrists were there, the psychologists were there, so there was a whole group of folks with an interest in what we refer to as PCOS.
Also we made sure that in this body, the whole world is represented, you know, from North America, South America, Asia, Africa, all over the place. Professor Malika Patel and I represented Africa.
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It was a long process, taking more than a year to go through, and a lot of discussions, a lot of disagreements, and eventually we came up with this thing, polyendocrine metabolic ovarian disease.
What does this mean for patients?
Usually, your gynaecologist will make a PCOS diagnosis, and they will tell you how we manage it because we want to prevent the complications. Most other complications will occur later.
But there must be further investigations to look at your sugar levels and insulin, if necessary, and examine you. And then you need regular follow-ups with your doctor because we know the potential implications and complications of patients who are not followed up on or not treated.
Serious complications include heart problems and cancer. That's why, often with PCOS patients, we try to make sure that you see your periods at least once every four months to prevent the risk of you developing cancer of the endometrium and stuff like that. - Health-e News
