After struggling with intense period pain throughout her teenage years, Taylor Smith first visited a doctor when she was 18. As the pill was too risky for the migraine-prone patient, she was told a contraceptive implant, the rod, would solve her problems. But her symptoms were just beginning.
“I put on a lot of weight in one year and I hadn’t done anything differently,” Taylor tells The Weekly. “I went to a doctor and they said: ‘It’s your diet. When you stop playing school sports and your hormones kick in, women put on weight.’ So I tried exercising more and eating better, but nothing happened.”
Then came the fatigue and the hair loss, prompting Taylor to visit another doctor.
“I said: ‘I’m tired all the time; I can’t lose weight; my curly hair has turned straight; this just doesn’t seem normal.’ He told me: ‘The only reason you can’t lose weight is your diet or your sleep.’ I said: ‘I can sleep 10 hours and still be tired.’”
After a sleep apnea test showed nothing irregular, Taylor returned to the GP wanting blood tests. Instead, she left with another command to fix her diet.
“It got really bad. I had excess facial hair growth and my period pains were getting worse. I would be on the ground in tears,” Taylor says. “No one was listening to me about it. They said it would be worse if the rod was taken out because it minimises pain. I was like: ‘How can it be worse?’”
After years of enduring the unexplained symptoms, the now-25-year-old turned to her own research where learned about endometriosis and Polycystic Ovary Syndrome (PCOS). Her symptoms, she thought, overlapped with the conditions, particularly the latter.
What is PCOS?
PCOS is a hormonal condition that causes hormonal imbalances, irregular periods, excess androgen levels and partially developed eggs on the ovaries (or enlarged ovaries), according to the World Health Organisation and Jean Hailes.
Until recently, PCOS has not been adequately researched.
“PCOS is not well understood,” says Professor Helena Teede, who has over 20 years experience in women’s health. “It’s really hard to diagnose when people are on contraception.”
While weight gain, irregular periods, increased acne, and facial hair are features of the condition, pelvic pain is rarely – if ever – a symptom of PCOS.
“Pelvic pain can be due to a few different things, not necessarily gynaecology sort of issues,” adds Sarah White, the CEO of the not-for-profit organisation, Jean Hailes for women’s health.
“It can be bladder issues, it can be irritable bowel syndrome. There are a lot of things that we need to eliminate before you can get to the point of the doctor saying it’s a gynaecological issue. It could be endometriosis and so on, but it takes time to go through those investigations.”
The problem, however, is that many women, like Taylor, have had medical professionals ignore their symptoms. This has been confirmed by surveys conducted by Jean Hailes.
“A lot of women feel like the doctor dismisses their concerns,” says Sarah. “If they say: ‘I’m having pain’. They’ll say: ‘That’s just normal; that’s just part of having your period,’ or ‘you just get that sometimes.’
“Sometimes women have to really advocate for those tests and investigations to be done.”Sarah White
“It’s a failing of the system for women with a condition,” adds Helena. “Understanding what the problem is, is empowering. And diagnosis is actually therapy for these people. So dismissing diagnoses, symptoms, and missing diagnoses is really not supporting women. Whether it’s pelvic pain, or endometriosis, or PCOS, (missing diagnoses) is very common.”
Research shows that women are more likely to suffer from chronic pain than men, but are often diagnosed later than men for the same diseases.
When it comes to menstrual health, women commonly receive inadequate treatment. But why? A few different reasons: the social construct, the lack of research, the weight stigma, the distrust, and the misinformation.
The social construct
We are still paying the consequences of a social construct that censors women’s menstruation and reproductive health, says Helena.
“We just tolerate the symptoms. They’re part of our role to bear as a woman. Socially discussing and normalising these things and making it acceptable to know the impact of these conditions has not been prominent. People would not talk about the impact of their period pains or the impact of pregnancy and childbirth and postpartum and menopause.”
Detrimentally, this mentality causes many women to grin and bear their symptoms rather than seeking medical advice.
“Around one in five women suffer from persistent pelvic pain,” says Sarah. “Our National Women’s Health Survey found that about half of all Australian women over 18 had experienced pelvic pain in the last five years. Some were completely incapacitated, unable to shop, unable to parent, unable to toilet – the extent for some women is really extraordinary.”
And yet, 50 per cent of the women surveyed did not see a doctor about their pain; and two thirds didn’t believe their pain was bad enough to warrant a GP visit. “There are still women who believe this is just part of being a woman,” says Sarah. “We don’t talk about it in society. Very rarely will women talk about it with friends or colleagues. I don’t think women understand how common it is.”
This was certainly true for Taylor.
“I thought period pain was normal,” she tells us. “I was probably underselling what I was going through when I was 18 or 19, I just thought everyone had period pain, and then you grow older and you realise it’s actually not normal to be curled up in a ball.”
The lack of research
As women’s health has been marginalised, it has also been extremely under-researched. Despite women being at higher risk of experiencing chronic pain and autoimmune diseases, the Royal Australian College of General Practitioners (RACGP) explains that these conditions and their effect on women are under-researched, often misdiagnosed, and commonly mistreated.
Historically, clinical studies would exclude women. The justification? A misguided belief that what worked for men would work for everyone. Oh, and cost cuts – because menstrual cycle hormones would complicate the results, requiring more test subjects.
In 1977, following the thalidomide scandal, it was even recommended that women of childbearing age should be excluded from clinical research studies as a protective measure, as per the RACGP.
Now, women’s health is playing catch up. According to Helena, not only is the amount of funding for conditions such as PCOS and endometriosis “infinitesimally smaller” than conditions such as diabetes – even though the former affects as many, if not more, women – there is a significant lack of research into “women’s lived experiences” with these conditions.
“If you don’t do the research, you don’t hear women’s voices, you don’t understand their experiences, and you don’t realise how much the condition impacts quality of life.”Helena Teede
“PCOS has been shown to have a greater impact on quality of life than diabetes, and yet everybody knows how serious diabetes is,” adds the endocrinologist. “But this condition has such a myriad of features that really impact on quality of life, and endometriosis and pelvic pain can be the same.”
Taylor finally received some answers in September this year after visiting a doctor who performed blood tests and an insulin resistance test for PCOS.
“The results came back and I had severe insulin resistance,” she tells us. “But the rest of my bloods were fine. The doctor said that without taking the rod out, my hormone levels would look fine because the rod is pumping hormones into me.”
Despite not receiving an official PCOS diagnosis, all of the notes on Taylor’s referrals read ‘PCOS’. “The doctor told me that insulin resistance causes PCOS. So if you treat the insulin resistance, you treat the PCOS.”
It’s important to note, says Helena, insulin resistance tests are not commonly recommended. “If you have a diagnosis of PCOS, we pretty much know you are insulin resistant,” she explains. “It’s more an assumption because the best test for insulin resistance takes six hours in a lab with lots of groups running, and we don’t do it other than in research.”
Now, Taylor is in the process of seeking medical advice about her pelvic pain to determine whether it is related to endometriosis. The test will involve a pelvic ultrasound, MRI, or laparoscopy (keyhole surgery). “After speaking to another health professional, it’s become obvious I need more tests,” she says.
The weight stigma
In the meantime, Taylor is managing her insulin resistance through lifestyle changes, with the help of a dietician. As it is a chronic condition, she will receive a health plan each year.
“It’s not something that’s ever going to go away, it’s just something that needs to be managed. I have to go back at the start of next year and re-do all of my blood tests to see the impact the lifestyle changes have had, and go from there. The doctor said it’s a very long and slow process to lose weight with insulin resistance.”
It’s an overwhelming prospect. And it’s made disheartening by a series of GP visits where Taylor was told she wasn’t “trying hard enough” to lose weight.
“I would walk in for something completely unrelated and the doctor would weigh me and say: ‘I definitely think you need to look at losing some weight’,” Taylor explains. “I would say: ‘I’m trying’ and he would say: ‘I don’t think you’re trying hard enough’. It’s as though they think I’m just sitting here binge eating chocolate.
“They don’t believe anything that I say.”Taylor Smith
This experience is not exclusive to Taylor. “It’s called weight stigma,” explains Helena. And it refers to the “discriminatory acts and ideologies targeted towards individuals because of their weight and size,” as per the World Obesity Foundation.
For women with PCOS, it is extremely hard to lose weight, especially as the condition itself can cause weight gain. Maintaining a healthy weight is made all the more difficult when you consider the current environment we live in.
“The challenge is often the historical way we view the problem,” explains Helena. “30 years ago, in Australia, very few people had a higher weight. Now 70 per cent of Australians are above a healthy weight. For women going into pregnancy, 50 per cent are above the healthy weight, so it’s affecting young people. That is not a failure or an individual choice, that is the vast majority of the Australian population. And they did not get there because of their failure of self control or their own personal behaviour; they got there because we have a complete failure of our policies and processes to protect Australians from what is an obesogenic environment.”
We are surrounded, says Helena, by highly processed foods that are much cheaper and more accessible than healthier options. “We’re time poor, we’re financially constrained, especially with rising costs of living, we are provided with rubbish food through our current food systems and there is a lack of policy regulation,” says Helena. Australia has no sugar tax, and has not yet banned junk food advertising for children. Although, a Healthy Kids Advertising Bill was proposed in June 2023 – it aims to remove junk food ads from TV and radio between 6am and 9:30pm.
In this obesogenic environment, it is very tricky to stay in a healthy weight range, especially for women with certain health conditions. “Women with PCOS are more prone to putting on weight in the context of their insulin resistance,” explains the professor. “The more weight they put on, the more insulin resistant and adverse hormone levels they get, and the worse their condition gets. It’s a complete vicious cycle.
“Simply saying to people when they’re a higher weight: ‘eat less, move more, and lose weight’ is failing them. You are essentially saying: ‘go and do something in an environment that makes it impossible,’ and they just can’t do it. They are going to be ashamed, they’re going to be constantly disappointing themselves and others, they’re going to be trying to do something that is currently without policy.”
Helena insists we are being “unkind to young women” by setting unrealistic expectations around weight. “Our language and our empathy around weight needs to evolve quickly,” she says. “All health professionals should be aware of weight stigma, be cognisant and understand the blame and shame and characteristics around that. Ask the patient permission to talk about a healthy lifestyle.”
“It’s a really complex issue,” confirms Sarah. “Unfortunately, we still have many people in doctor’s practices who think it’s a case of ‘do some more exercise and watch your calories’. That’s not going to work for everybody. I would suggest that if anyone gets that from their doctor, turn around and say: ‘Well, higher weight is a medical issue. So what are you going to do to help me?’”
Leaving consultations feeling dismissed and judged has led many women with menstrual issues to stop visiting GPs altogether. Of the women Jean Hailes surveyed, 30 per cent didn’t visit a doctor for their pain as they weren’t convinced their problems would be fixed.
“We’re talking about women who have had to miss days of work, who find it hard to do daily activities, and are not going to the doctor because they didn’t think anything could be done,” says Sarah.
Taylor echoes the sentiment. “It’s like you’re so fed up with the medical system for not helping you. It’s as though they just want you in and out. Why is it so hard to find doctors that actually want to help you?”
It’s a systemic issue, explains Helena; it’s not always the case that individual doctors don’t listen to individual women. “We’re really letting our GPs down as much as we are letting women down,” she says.
“We do not educate our health professionals enough.”Helena Teede
“Women are 51 per cent of the population and yet “women’s health” is often taught under obstetrics and gynaecology in very brief theory sessions in one short part of medical school.”
Despite PCOS affecting one in eight women, and having an impact on metabolic health, causing diabetes, heart disease, insulin resistance, weight gain, high blood pressure, high cholesterol, infertility, high risks in pregnancy, depression, anxiety, disordered eating, dermatological issues and so on, Helena had just one hour to learn about the condition during her six years at medical school.
“This is not a disease of the ovaries, this is an endocrine or hormone condition in women,” says the endocronologist. “By calling it a polycystic ovary disease, it puts it into that space in education where it’s relegated to women’s ovaries. The condition was pigeonholed into a gynaecological condition.”
It is absolutely not the fault of GPs, adds Sarah. “There is always a full waiting room, and they are only funded to deliver a certain number of minutes. They are doing their absolute best in that number of minutes.”
As the issue persists, there have been many calls to overhaul Medicare so that patients receive the care they require. We now also have more bulk billing accessible and longer consultation times. These policies are necessary so that women don’t feel rushed, and have time to ask necessary questions.
Taylor, for example, left her appointment none the wiser about insulin resistance. “I still don’t even completely understand it. I tried looking it up and it was all very scientific. I’m trying to get all the information. I wasn’t told what insulin resistance was or how it works. I don’t understand what is happening in my body.”
With a growing sense of distrust between patient and GP, some women detrimentally turn to untrustworthy avenues for medical advice.
“When you’ve got a condition where the health system is not diagnosing and treating you satisfactorily and you don’t feel like you’re being listened to, you go elsewhere for information,” explains Professor Helena.
“There is so much misinformation on TikTok out there. It needs to be a nuanced discussion between you and your doctor. It’s really important that women get evidence about what actually is effective, and what does support them, otherwise that’s just letting them down again.”
Misinformation is a significant issue, agrees Sarah, who implores women not to seek medical advice on social media platforms like TikTok or other unreliable sources. “Go into your appointment with a very specific list of questions about what your issues are, and then talk to your doctor very directly about those; try and keep it really businesslike.”
So, what is the solution?
What is being done to improve women’s health? More research and funding, finally.
As part of the 2022 to 2023 budget, the Australian government committed to invest over $333 million into areas of women’s health. Two of these areas include maternal, sexual and reproductive health, and supporting families who have lost a baby. A senate inquiry into menopause and perimenopause was also launched in November 2023, due to be submitted in September 2024.
On an individual level, there is AskPCOS – a government-funded app where women can input their period symptoms to get answers and advice. It’s personalised, confidential, and available in multiple languages.
Additionally, Jean Hailes will soon be publishing a period report from their national survey, and Monash University has released international guidelines on PCOS, with input from over 3,000 health professionals, and over 100 multidisciplinary clinical and lived experience experts from six continents.
“It was patient input at every stage,” says Helena. “Women decided what was important. And we had all the relevant 170 recommendations made. We’ve been really pushing to listen to women, to partner with them, to empower them, and to take it seriously.”
The guidelines emphasise how to make the diagnosis, what complications to screen for, and how to treat it. They also made recommendations about improved education – including around weight stigma – for health professionals, such as dieticians, psychologists and, of course, GPs.
“We need our GPS to know about this. They’re the ones women see first,” says Helena. “You can see a specialist in infertility; you can see a specialist for your diabetes; you can see an endocrine or hormone doctor. But you know this condition is there for a long time. You need your GP because you need ongoing treatment for the hair; ongoing support for a healthy lifestyle; someone who’s going to look at your risks before and after you get pregnant; someone to make sure you get screened for diabetes and heart disease. And that is your GP.”