Polycystic ovary syndrome (PCOS) affects one in eight women globally. However, this complex hormonal condition is under-researched and often misunderstood.

This is partly due to its name, which overemphasises “cysts” and the ovaries. In fact, you can have PCOS without cysts.

It can affect many parts of the body, not just the ovaries, leading to acne, excess body hair, changes in metabolism and even mental health issues.

Our new research, published today, shows that changing the name would help better reflect the complexity of PCOS and improve awareness about this condition. We surveyed 7,700 health professionals and people with PCOS and found the majority supported a name change.

What is PCOS?

PCOS is a chronic condition caused by an imbalance of multiple hormones – the body’s chemical messengers – that circulate through the body.

Genes and environment play a role. Lifestyle factors, such as diet (especially ultraprocessed foods) and activity, can also lead to weight gain and worsen its severity.

In PCOS, the “cysts” are actually partially developed eggs that, due to underlying hormonal imbalance, remain dormant. This means they are less likely to be released (ovulation).

Unlike conventional ovarian cysts, these dormant eggs will generally not grow larger, cause pain, require surgery or burst. Instead, they are slowly reabsorbed over time back into the ovary.

Having dormant eggs in your ovaries is not, by itself, enough to be diagnosed with PCOS – and you can have PCOS without any dormant eggs.

So, what’s needed to diagnose PCOS?

For adults, a diagnosis requires two of three features:

1) irregular periods (due to limited ovulation)

2) high levels of certain hormones (androgens), such as testosterone, which is evident either in blood tests or symptoms (excess facial and body hair, acne, and thinning/balding scalp)

3) excess dormant eggs detected either on an ultrasound or ovarian hormone blood test

In adolescents, only the first two criteria are needed for a diagnosis. Ovary tests (ultrasound or blood tests) are not recommended until after age 20, as changes in the ovaries are common during normal adolescent development.

However, these criteria focus heavily on the ovaries and menstrual cycles, neglecting the condition’s broader impacts.

Widespread health effects

In fact, hormonal imbalances in PCOS affect multiple systems in the body. This can include:

metabolism – higher blood pressure and cholesterol, and greater risk of heart disease and diabetes.

reproductive system – irregular menstrual cycles, reduced fertility and pregnancy complications and increased endometrial cancer risk.

skin – excess facial/body hair, acne, scalp hair thinning and dark skin patches.

mental health – anxiety, depression, disordered eating and body image concerns.

PCOS has also been linked to sleep apnoea (a sleep disorder involving irregular breathing, snoring and fatigue) and inflammatory conditions such as asthma.

Widespread confusion

It’s not uncommon for women with PCOS to see two or three doctors and wait years for a diagnosis. Many types of doctors, including GPs and hormone, skin and fertility specialists, may be involved in care.

Often, health-care providers focus on reproductive concerns, overlooking other health impacts.

Common but problematic approaches include not informing women of the diagnosis, telling them not to “worry” about their PCOS until they wish to conceive, providing inadequate information or only addressing the problem in their speciality area, such as infertility.

This fragmentation creates a troubling paradox. Some are told they’ll face infertility. Yet without proper education they may be unaware they can still occasionally ovulate and may experience unexpected pregnancies.

Conversely, others planning for families often face unforeseen fertility difficulties that early comprehensive care – such as reproductive life planning, healthy lifestyle and early treatment – could have addressed.

The case to change the name

In our new study, we surveyed 3,462 health professionals and 4,246 people with PCOS across six continents.

We wanted to find out what health-care professionals, doctors and those affected by the condition understood about PCOS, and whether understanding has improved over time.

We also wanted to understand whether changing the name – for example, to include “endocrine” or “metabolic” – could have a positive impact, given frequent confusion and misdiagnosis.

Support for a name change was widespread: 86% of women with PCOS and 76% of health professionals said renaming PCOS would better reflect the condition, reduce confusion and likely lead to better outcomes.

We are now leading an international process to find a consensus on a new name and formally change it in the International Classification of Diseases. This involves engaging widely with health professionals and people with PCOS.

By reframing PCOS beyond a purely reproductive disorder, a name change can support broader research funding, education and advocacy. It may lead to better recognition and improved diagnosis, care and outcomes for people with PCOS.

Combating misinformation with evidence

Accurate information is critical for proper PCOS management. Yet misinformation about the condition – for example, that PCOS can be cured through diet or exacerbated by the oral contraceptive pill – is rife on social media.

We have also co-designed and developed evidence-based guidelines and free resources for people with PCOS to find out more about the condition, including the free “Ask PCOS” app.

Renaming PCOS is another key step in improving knowledge about this understudied condition – and care for the 170 million women affected worldwide.

Helena Teede, Director of Monash Centre for Health Research Implementation, Monash University; Chau Thien Tay (Jillian), Research Fellow, Monash Centre for Health Research and Implementation, Monash University, and Lorna Berry, Consumer Lead, Centre for Research Excellence in Women’s Health in Reproductive Life, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Outbreaks of bacterial meningococcal disease in England and recent cases in students in New Zealand have raised awareness of this serious and life-threatening disease.

The disease is caused by the bacterium Neisseria meningitidis and presents as meningitis or blood poisoning (septicaemia).

Meningitis is an inflammation of the membranes that cover the brain and spinal cord (meninges), while septicaemia affects the whole body through the presence of bacteria in the blood stream.

Both can be also be caused by other infectious agents, but bacterial meningococcal disease is the most severe form.

Infants, children and young adults are at higher risk. While the disease is largely preventable through vaccination, only one vaccine is currently on the national immunisation schedule in Aotearoa New Zealand.

As part of ongoing research to explain the recent cases, we compared the meningococcal strains involved in both countries and explored the significance of people who carry the bacterium but don’t develop symptoms or disease.

There are several strains of Neisseria meningitidis and most belong to six groups (named A, B, C, W, X and Y). All have an extraordinary ability to swap genetic material between them and switch genes on and off through a process known as phase variation.

This can change the surface of the bacterium, enabling it to escape the body’s immune system.

The strains responsible for both the UK and recent Dunedin cases belong to Group B meningococci. However, the similarity ends there. The UK outbreak strain is known as ST485, while the Dunedin cases were caused by different strains. They differ from the UK strain as well as from each other, suggesting more than one chain of transmission was involved.

The Bexsero vaccine is used to protect people against bacterial meningitis caused by group B strains. It was designed to recognise components in the outer membrane and on the surface of the bacteria.

The strain that caused the UK outbreak is likely covered by the Bexero vaccine because it matches exactly one of the protein antigen sequences used in the vaccine.

But genomic sequencing of the bacteria responsible for one of the Dunedin cases is still pending, while the other case did not yield a bacterial culture.

The importance of genome sequencing

Although meningococcal disease can appear as scattered and apparently unrelated cases, these can occasionally build into larger outbreaks.

Strain typing and genome sequencing can help to determine if an apparent outbreak is due to the emergence of a particular strain or a cluster of cases that are genetically unrelated.

Both scenarios can occur if cases share a common risk factor, such as increased close contact and mixing in educational settings such as schools and universities.

Past genomic surveillance in New Zealand has shown the emergence of outbreak strains and helped identify likely resistance to antibiotics. For example, a W group strain variant caused rising numbers of meningococcal disease between 2016 and 2019 in New Zealand and an outbreak in Northland in 2018.

Genome sequencing showed this strain was different from the W strain causing disease in Europe at the time, and the specific 2015 variant also has increased resistance to penicillin.

Healthy people can be carriers

Despite its ability to cause severe disease, the bacterium causing meningococcal disease is often found in people’s throat, without causing symptoms.

About 5% to 30% of the global population are carriers, and most don’t experience any symptoms or disease. We don’t yet fully understand the factors that determine whether disease develops.

Genome sequencing has shown that some highly virulent strains which are associated with outbreaks are rarely identified in samples from healthy carriers. But as yet, attempts to find genomic explanations for differences in bacteria found in outbreaks and healthy carriers remain inconclusive.

The likelihood whether people carry the bacterium is age dependent. It is low in younger children and older people, but high in teenagers and young adults.

The high carriage rate in young adults makes university students a high-risk group for developing the disease. Crowded living conditions also contribute to the high carriage rate, exacerbating the risk.

In New Zealand, both the Bexsero (against group B) and MenQuadfi (against ACWY) vaccines are available to young people moving into boarding school or university halls the first time. In contrast, only one vaccine (against ACWY) is currently funded for university students in England.

Both vaccines are needed to have maximum protection. Conjugate ACWY vaccines may reduce carriage and therefore transmission. Bexsero does not reduce carriage but protects against development of the disease.

Impact of COVID measures on transmission

Lockdowns and border controls introduced during the COVID pandemic reduced transmission of the SARS-CoV2 virus. But they also had a major effect on other diseases, including influenza and other respiratory viruses.

Cases of meningococcal disease were also dramatically reduced during the COVID response, most likely due to reduced contact between individuals and because fewer infected people entered the country.

The rebound in cases following relaxation of these strict measures was expected.

This highlights how important it is to be aware of the risks associated with large gatherings, particularly of young people, and the need to vaccinate with the Bexsero vaccine as part of the immunisation schedule as well as MenQuadfi for high-risk groups.

Una Ren, Senior Scientist in Genomics, New Zealand Institute for Public Health and Forensic Science; Nigel French, Distinguished Professor of Infectious Disease Epidemiology and Public Health, Te Kunenga ki Pūrehuroa – Massey University, and Sarah Hannah, Doctoral Candidate in Epidemiology, Te Kunenga ki Pūrehuroa – Massey University

This article is republished from The Conversation under a Creative Commons license. Read the original article.