Woman waiting 5 years for a diagnosis felt ‘entirely dismissed’
Women who felt “completely excluded” by the healthcare system while struggling with a debilitating condition have been relieved by the groundbreaking renaming of polycystic ovary syndrome (PCOS).
The lifelong hormonal and metabolic disorder, redefined as polyendocrine metabolic ovarian syndrome (PMOS), affects more than 170 million women worldwide. Symptoms often include irregular menstrual periods, severe acne, excess body hair, weight gain, and potential infertility.
Widespread misdiagnosis or delayed diagnosis has left millions of women trapped and constantly having to defend themselves. Some women have waited up to 12 years for a correct diagnosis.
Reproductive health advocate Hannah Bambra, who waited five years to be diagnosed with PMOS, welcomed the change, saying the new definition much better reflects her experience.
“When I first went to the doctor to say I hadn’t had my period in months, I felt completely left out,” the 34-year-old woman said.
“I think the name change to PMOS is really important to recognize this as a life-long, whole-body condition.”
Ms Bambra did not have an ovarian cyst and struggled to get a formal diagnosis that would have made it easier for her to access care, treatment and cheaper reproductive technology.
“If someone has PMOS and wants to get pregnant, they are told to ‘start trying early.’ If you’re single or not ready, it’s important to know what’s going on with your body and have access to healthcare,” she said.
Ms Bambra, who is researching pregnancy, said recognition of the subtle effects of the condition made her hopeful for the future.
Immediate change in diagnosis
Australian health experts are leading global efforts to redefinition, with some calling it an “overdue” redefinition that will clear up widespread diagnostic confusion and accelerate breakthroughs in fertility research.
It is expected to take three years to retrain the health workforce and systematically implement change, but practitioners are expected to change their approach immediately; some claim that they have long known the condition had nothing to do with cysts.
Beyond ultrasound and cysts
Royal Australian College of General Practitioners women’s health expert Magdalena Simonis said medical experts knew the previous name was incorrect and “a misnomer” from the start.
Evidence has now shown that women with and without the condition have equal numbers of cysts; This means cysts can be eliminated from the diagnostic discussion altogether, he said.
Dr Simonis stated that this was an important result and said: “We no longer need an ultrasound unless there are other associated symptoms.”
The ordeal of trying to convince women they don’t have PMOS is frustrating when an ultrasound report from a radiologist shows they have multiple cysts, she said, leading to distrust of healthcare practitioners.
“We now have the power to diagnose,” he said.
Dr Simonis said he was pleased that the acronym had been reused so well.
“We want to get people involved in change as quickly as possible… (PMOS) is a really accurate descriptive term for all the effects of this chronic endocrine disorder on women who suffer from this condition,” she said.
The shift to PMOS shows that the condition is a complex, long-term metabolic disorder in which the pancreas often plays a more central role than the ovaries, he said, warning that the disorder puts women at risk of developing diabetes and heart disease, “poorer health outcomes and shorter lives.”
“Insulin resistance is key to PMOS. This is key given that the pancreas, not the ovaries, produces insulin, but insulin levels will affect your ovaries, all your other sex hormones, and your cortisol,” he said.
“I think we’ll do a lot of this great research here.”
Research and fertility
Simon MacDowell, a fertility expert and vice president of the Fertility Society of Australia and New Zealand, who surveyed the name change last year, is excited about the latest announcement and says it is “long overdue”.
“PCOS has created a lot of confusion, not only for patients, but also for healthcare professionals, even at the level of teaching medical students. Medical students find it very confusing,” he said.
A well-defined disorder also means better research, Dr MacDowell said.
“We can do trials because we can divide people into groups and then examine them more carefully,” he said.
“There are a variety of different subgroups within PMOS as well, and I think this will really help with research, which will help us improve access to reproductive care broadly.”
Dr MacDowell said birth rates were falling around the world and this critical change was “a small pebble in the bucket” of efforts to stop this, with Australia among countries grappling with falling birth rates.
“Part of PMOS is infertility and infertility, difficulty getting pregnant, and if people get that diagnosis sooner, then maybe they’ll seek care sooner,” he said.
Heavy psychological cost
The impact of the new terminology extends beyond the physical body.
Clinical psychologist and fertility counselor Iolanda Rodino believes PCOS may have contributed to overlooked mental health effects in undiagnosed patients.
Dr Rodino said concerns that had been ignored for years had severely damaged some patients’ confidence and self-esteem. For many, being misunderstood created a lasting sense of loss and sadness.
He encouraged anyone experiencing PMOS to consider seeking psychological support.
Dr Rodino said after years of relentless advocacy, patients’ voices were finally being heard.
“It has taken a long time and hard work from many healthcare professionals, organizations and the patient themselves to get to this point,” he said.
“Under the former name, where up to 70 percent of patients remain undiagnosed, associated mental health effects (such as depression, anxiety, stress, sleep problems, body image issues, eating disorders) may have been minimized as living conditions rather than recognized as having a physiological basis due to hormonal and metabolic dysregulation.”
By explicitly incorporating the terms “polyendocrine” and “metabolic” into the diagnosis, he said, the medical community has now confirmed that the emotional and psychological distress experienced by patients are likely biological symptoms of the disease rather than natural responses to weight gain or possible infertility.
