health

The 6 diagnoses your doctor is more likely to miss, just because you're a woman.

International Women’s Day does lots of good things. It gives us a bit of a nudge and encourages us to celebrate being women and the whole beautiful/crazy/powerful thing that is womanhood. And hooly dooly, have we come a long way. 

However, among all the challenges we face and are currently facing, there's something pretty surprising. Something a lot of us probably don't really think of until it's thrust upon us, or someone close to us has had to deal with it.

Y'see, it may be 2021, but there's a whole heap of common medical diagnoses you're probably more likely to miss just because you're a woman.

Sounds like an exaggeration, we know – but it's true. It really is.

Watch: Here are seven health myths debunked. Post continues below.


Video via Mamamia.

And there are a few reasons for this. One is a lack of research into these health issues. Another is the history of gendered notions and stigmas that cloud possible symptoms and diagnosis. Then there's the fact that many women find it embarrassing to talk about not only their sexual health, but their mental health too. 

The result? A lost generation of women going through life struggling with undiagnosed conditions.

"It’s true that many diagnoses are often delayed and missed when it comes to mental health, and for women there are definitely certain conditions that fly below the radar both mentally and physically," said medical doctor and psychiatry resident Dr Kieran Kennedy.

"From a more general perspective, diagnoses that impact mental health and the brain are often missed and delayed. There’s a continued stigma that clouds how we think and feel about mental health, and so whether it’s depression, anxiety or autism it’s been so common for myself as a psychiatric doctor to meet women who’ve struggled to reach out for help or who’ve been given the wrong diagnosis when they have."

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So, we want to create a discussion. 

Here, we take a deeper look into why some common health conditions are tougher to diagnose in women – including what we should look out for.

ADD and ADHD.

Heard of these conditions? Yeah? Do you know how common it is for adult women to be diagnosed with them?

Because for decades, the signs of attention deficit hyperactivity disorder (ADHD) and attention deficit disorder (ADD) in girls have been missed.

"With stigma comes silence and misunderstanding, and particularly for women conditions like autism and ADHD have often been misinterpreted as other diagnoses or been thought of as things that don’t affect them," said Dr Kennedy.

Emmeline, a podcast producer at Mamamia, was diagnosed with ADD when she was 28 years old.

"It came about when I had just gotten a contract at a big tech company, which involved me learning lots of new procedures and concepts, and I found I was having trouble retaining information and focusing." 

"It reminded me of being at school again, where I really struggled to concentrate, even though I was determined to be a 'good student'. I can remember as young as kindergarten getting in trouble for 'daydreaming', aka staring out the window, unable to concentrate. I started reading about ADD and a lot of of the symptoms matched mine, so I spoke to my psychologist and my GP, who referred me to a psychiatrist," Emmeline adds.

Hannah, a pharmaceutical researcher and beauty influencer, was diagnosed with ADHD at 31 years old. "I weep for all the women out there that sought help and were denied the medical care they asked for. Because they’re absolutely out there. I was one of them. The school reports saying, 'Intelligent but needs to apply herself'? Yeah. That was me."

However, Emmeline and Hannah's stories are among many. They certainly aren't uncommon.

Cause here's the thing. The stereotypes of ADD and ADHD very much still exist. Like, what do you picture when you think of someone with ADD or ADHD?

Listen: What is the “Uncool mental illness”? Mamamia Out Loud discusses. Post continues below.

Chances are, your perception fits in with the 'naughty boy syndrome'. When you think of ADHD, you probably think of that hyper boy from primary school who was couldn't sit still, couldn't focus, liked to have all the attention on him, right?

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C'mon, it's true. 

But the fact is, ADD and ADHD is not just a boy problem. Not in the slightest. It's far from it. 

New evidence suggests that it likely affects males and females equally, but that girls are far less likely to be diagnosed.

Why? Because the symptoms for ADD and ADHD can look very different in girls. This is partly because their symptoms tend to lean more toward inattentiveness and disorganisation. They also mask it more than boys, in an attempt to appear organised and in control.

We're just going to leave this [extremely relevant] TikTok here:

@kirabenton1


♬ original sound - Peter Hyphen

A study also found that parents, in their own ratings, seemed to play down girls' hyperactive and impulsive symptoms, while playing up those of boys.

"Gendered notions of illness and diagnosis is something that’s followed medicine throughout its history – but when it comes to mental health, this has all too often been blown far beyond what the science really shows," said Dr Kennedy.

"Whether it’s that men don’t struggle with depression or that girls don’t become hyperactive or suffer from ADHD, there are conditions we’ve come to wrongly label in the past as affecting one sex or the other," he said.

"Another factor at play is that medicine and mental health aren’t blankets of the same struggles or symptoms – a mixture of genetics, biology, gender pressure and culture can all impact how men and women present when it comes to certain illnesses."

When it comes to Emmeline's case, her symptoms of ADD were categorised as just a part of her personality, or worse, considered as character flaws. 

"In retrospect I did show symptoms of this as a child, but they weren't picked up on. My mum was surprised by my diagnosis, because she didn't see my lack of concentration or daydreaming as a problem that needed to be fixed, just a part of my personality, which I actually appreciate," said Emmeline. 

"However no teachers ever brought it up either, and sometimes my lack of understanding or focus seemed to be dismissed as me not caring, which definitely wasn't the case."

But what does all this actually mean for us women and girls? 

Well, right now these disorders are currently being diagnosed in women in higher-than-ever rates.

"It’s now thought that a significant part as to the difference in diagnosis rates (which have traditionally shown these to be conditions that primarily affect boys and men) come down to the fact that these conditions don’t present exactly the same in men and women, alongside stereotypes having sidetracked medicine from picking these up in girls early on," said Dr Kennedy.

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According to a study in The Journal of Clinical Psychiatry, diagnoses of attention deficit hyperactivity disorder went up a whopping 55 per cent for girls between 2003 and 2011. 

In those same eight years, 40 per cent more boys were diagnosed. Among women ages 26 to 34, ADHD prescriptions shot up 85 per cent between 2008 and 2012 alone. 

How insane is that?

The bigger issue though, is that many of these girls grow up not knowing they're suffering from ADHD, leading to questions about why they don't think and act like their peers, which can take a toll on their mental health – often triggering self-esteem issues.

It seems that being diagnosed with ADD or ADHD as an adult woman is both a blessing and a curse – while it's a great relief, many women wonder if their life would be different had they been diagnosed earlier. Because when you think about it, many of these women have spent years trying to manage (or hide) this condition on their own. 

For example, Emmeline said she found it validating to know she hadn't really been falling behind her peers, but that she was dealing with an actual condition. 

"The diagnosis was a relief. I'd always assumed I was not very smart, which is why I didn't do well in my HSC, struggled to read a book as an adult, etc," she said.

"It took a while to get on the right medication, and I've only started taking them recently, so I'm not sure of the effect they're going to have for me yet. But so far they've help ease the braindead slump I get at about 2pm every day. I'm just going to take my doctor's advice with them very carefully and monitor how I feel," she added.

Similarly to Emmeline, Hannah said her diagnosis finally revealed some answers to so many aspects of her behaviour.

"I sought help because I felt like I was constantly drowning in tasks and emails. Many, many behaviours I’d previously explained away (or hidden) were revealed to be coping mechanisms or symptoms. So many," she said.

So, where does this all leave us? Well, Dr Kennedy said that understanding that the problem exists in the first place is a good start. He said that creating greater awareness around the symptoms of ADD and ADHD in women is a step forward to ensuring these conditions do not go undiagnosed and overlooked.

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"All of the above comes together as a bit of a perfect storm for girls and young women suffering these conditions – a mixture of biology, different symptom profiles, stereotypes and culture means that many young women receive a diagnosis much later than their male counterparts. 

"Thankfully, new research, greater awareness and a push to correct unequal outcomes when it comes to gender means this trend is changing!"

Autism. 

Autism spectrum disorder (or ASD) is a range of mental conditions that affect how people communicate, socialise and interact with the world. 

To give you an idea of just how common it is, according to the World Health Organization, it's estimated that 1 in 160 children worldwide has an ASD. And much like ADD and ADHD, there is a huge disparity in diagnoses by gender. 

A big factor at play is the fact that a lot of research that has gone into autism is actually male-based, with female participants often excluded. This means a lot about what we know of autism, is in fact about autism in males.

According to Autism Awareness Australia, the diagnostic criteria for ASD is based largely in how autism presents in males, meaning girls can often 'slip under the radar' or get misdiagnosed. 

"Conditions like autism often present differently in girls and younger women compared to males, and in different numbers – it’s important to point out that medically this is due to a difference in genetics and biology that makes males more susceptible (i.e. for every four boys diagnosed with autism, there is one girl)."

Like ADD and ADHD, the symptoms associated with autism in girls and women also differ between those shown in boys and men.

"A mixture of factors also appear to show that conditions like autism and ADHD present differently in young men vs young women, however boys and young men are more likely to present with factors that are more observable (such as agitation or aggression), which has traditionally led to more referrals and thus chances for diagnosis."

To top it off, women tend to have a different style of talking about medical symptoms than men do, said Dr Kennedy. 

"Women with Autism, ADHD and other neurodevelopmental conditions have been found to more often than not suffer with symptoms that might easily 'fly below the radar' – more subtle changes in cognition, attention, emotions and behaviour mean girls and young women are less likely to present to specialists for referral or come to the attention of a doctor in the first place. In the past many, too, have been misdiagnosed."

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One person who flew below the radar as a child is Dee. She's a mother of two, and she was diagnosed with the autism disorder when she was 38. 

"This came about as a result of having two children already diagnosed with autism and realising that a) we had a lot of sensory stuff in common and b) that autism is highly hereditary," said Dee.

Like many young girls dealing with autism, Dee said she grew up masking or hiding her autism symptoms by taking cues from her peers and people around her.

"I, like a lot of women and girls on the spectrum, 'masked' a lot of my behaviours. This is when we take note of how neurotypical people react to situations and put a mask of social acceptance on top of what our true thoughts or desires are," said Dee.

"This can mean that we come across quite 'neurotypical', but it’s exhausting and draining to mask. Once I was out of the situation that I had to mask in, such as school, I would need a lot of downtime, or become extremely upset and react in an angry or upset way towards my family. It was very difficult for me during adolescence to develop a true sense of who I was, as I felt that whatever it was, wasn’t normal and wasn’t right."

Since her diagnosis, Dee said navigating her condition is still a work-in-progress. After going through life trying to hide her struggles and managing her condition on her own, she said life now comes as a balancing act.

"It’s taken a lot of unlearning to trust myself and who I am, as well as not putting undue pressure on myself to socialise or be around external stimuli more often than I am comfortable with," she said. 

"I heard a talk from Tony Attwood, which was life changing. He mentions that autistic teens often develop a negative filter over everything that they do and become quite attached to the concept of themselves as 'wrong'. This is not from their family, but from continued rejection and unsuccessful social encounters with their peers.

"As a 39-year-old woman, it was revolutionary to hear about something that I had felt my entire life. Because social encounters are difficult and don’t come easily to autistic people, we can seem 'forced' or 'fake' and teens pick up on that, and we can suffer socially. Understanding that my low self-esteem had come from that sense of rejection, was fundamental in my healing and recovery from self hate and self blame. I know who I am today, and I love her and like her most of the time."

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While the research and awareness behind autism has improved dramatically over the last 20 years, there's obviously still a lot of room for discussion. Like, a LOTTA room. 

Because when you listen to stories like Dee's, and put together all the research and stats surrounding conditions including ADD, ADHD and autism, it seems like we're only just grazing the surface. There's still a lot more to the picture than we once thought.

Endometriosis.

Put up your hand if you thought it was normal to experience excruciating, stabbing, could-potentially-pass-out period pain? And you just kind of learned to "go on with it" and hope that it will get better? Because it must be the same for everyone, right? 

Well, you're not alone.

Molly, an office manager, has been suffering from symptoms of endometriosis for over a decade. And at 29 years old, she's still waiting to be officially diagnosed with the condition.

When Molly first got her period, and for years after, she said the pain was so debilitating that she frequently missed school.

"Missing school, throwing up and doubled over in pain – I just thought this was part and parcel of having your period. There just wasn't enough discussion happening about periods and these kinds of conditions when we were in high school, so whatever you experienced, you were just brought up to assume it was normal," she said.

"In my case, I think it also goes back to my parents and the information that was passed down to me. My mum also suffered with endometriosis and was undiagnosed her entire life. So, my sister (who also suffers from endo) and I were taught how to manage pain as opposed to seeking medical attention if you're in pain."

According to QENDO, endometriosis is a condition where tissue similar to that which normally lines the uterus grows in other parts of the body, usually in the pelvic cavity.  

Sounds pretty painful, right? Well, that's because it is. And it's something that's shared by hundreds and thousands of women. To put it into perspective, one in in nine Australian women will be diagnosed with endometriosis by the time they hit their 40s. Yep – HUGE.

But, hang on – if it's so common, why is it a condition that's often missed?

"The problem of course, is getting to the stage where you are seen by a trained endometriosis surgeon and have access to the necessary surgery," Associate Professor Gino Pecoraro, says President of the National Association of Specialist Obstetricians & Gynaecologists (NASOG).

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"Australian data unfortunately still suggests that it can be many years (around seven) from the onset of symptoms until the diagnosis is finally made and effective treatment commenced."

When you think of just how painful this condition is – seven years is a long time. The symptoms of endometriosis can often have a severe impact on someone's quality of life, affecting not only their physical and mental health, but their relationships, too.

So, what's the go? Why is there such a delay in a diagnosis that is so common? 

Well, according to Professor Pecoraro, there are a few different reasons behind this.

"One aspect which is hopefully decreasing in frequency, is inadequate education of medical staff who may not ask the right questions, find the clinical findings and arrange for a woman with symptoms to be seen by a specialist gynaecologist.

"Once the woman is seen and assessed by a gynaecologist, she requires access to a hospital to have the surgery performed. As this type of surgery is frequently categorised in the public sector as category three or non-urgent, waiting times can be prohibitive and accessing treatment in the private sector can be expensive as Medicare and private health insurance rebates have failed to keep up with the costs of actually providing service."

Further to this, Dr Pecoraro said the symptoms women may present to her doctor are also many and varied. 

"There is the classical triad of heavy and painful periods associated with pain with intercourse but other symptoms can also include subtle changes like bleeding between periods, mid-cycle pain, irregular cycles, cyclical bloating and abdominal discomfort or more specific bowel or bladder symptoms. For some women, the diagnosis is only made when they are investigated for fertility issues where they are having trouble falling pregnant."

While for some endometriosis is met with classic symptoms and clear signs that lead to early detection, Dr Kennedy said that for many women, subtle pain and surrounding symptoms make this a condition that’s all too often only diagnosed after many years of other labels (and treatments).

And such is the case for Molly, who said her journey towards a diagnosis is one that is difficult and long-winded. At 29, she's currently managing her symptoms, and awaiting further investigation into her endometriosis diagnosis whenever she decides to start a family.

"My first time seeing a doctor was really traumatic for me. I was 16 and just went in to find out why I hadn't had my period in 70 days and they sent me to have an internal ultrasound – so, that was my first experience," she explained.

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"When I came out, they said I had polycystic ovary syndrome (PCOS), and they very quickly went through all the very serious outcomes including that it would be difficult for me to have kids, that I would experience excessive hair growth and would have higher levels of testosterone. They said all of this before actually going into the further information as to what kind of level of PCOS I had. This was a lot for a 16-year-old girl. They then prescribed me the pill.

"Until I became an adult and educated enough to handle that diagnosis, I just kept masking it. It wasn't until my 20s that I saw a specialist and then opened up the possibility of endometriosis."

If you feel that your symptoms have been ignored or not taken seriously, Dr Pecoraro strongly advises that you should demand a referral to see a specialist gynaecologist, preferably one with an interest in this particular area.

"Whether because of a true increase in the incidence of the disease or because we are becoming better educated and women are becoming more empowered to access appropriate healthcare for their problems, the rate of diagnosis of endometriosis is significantly increasing," he said.

"The hope eventually would be that a simple diagnostic test could be developed and ultimately, some form of drug therapy to control the symptoms without the need for invasive surgery. To date, this remains elusive."

Heart disease.

Do us a favour, will you? Have a quick search on ol' mate Google, and type in 'heart attack'. Go to images. What do you see? 

Chances are you see an older dude in his 50s or 60s, with his hands on his chest, in pain. And while we know men are at greater risk of heart attack than women, the generalisation has certainly obscured the reality. 

Cause women can have heart disease, too.

"When it comes to heart disease for women, there continues to be a false (and dangerous) stereotype that these are primarily conditions that just affect men. Increasing awareness and improving education here is vital to ensure women (and men) become more aware and act sooner," said Dr Kennedy.

According to the Heart Foundation, a heart attack occurs when a coronary artery, which supplies blood to your heart, becomes blocked. The most common sign for heart attacks is pain or discomfort in the middle or left side of the chest and may feel like sharper pain, or more like an uncomfortable squeezing or pressure. 

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However, women are more likely to show different symptoms to men. And according to Dr Kennedy, when it comes to suffering a heart attack, campaigns to raise awareness for warning signs have often left this out 

"Heart health outcomes are indeed different for men and women, and while men are more likely to present and be hospitalised for issues, the rates of heart disease in men and women are actually roughly the same," said Dr Kennedy.

"Part of this is that we now know that there are important differences in recognising symptoms that often allow heart disease to go under recognised in women. It’s often surprising for people to find out that heart disease is the biggest cause of death for women as well as men, and so a lack of awareness about heart health risks for women is at play in our communities too."

Dr Kennedy said research shows that women are significantly more likely to present with what we call 'atypical' symptoms for conditions like heart attacks, heart failure or strokes. 

"Compared to men, women are less likely to suffer the more classic symptoms of a heart attack we’ve come to know from ads and awareness campaigns – severe chest pain is actually less likely, and things like a burning sensation, nausea, fatigue, shortness of breath, dizziness or pain in the jaw or neck are all too often more common."

Dr Kennedy said research also shows that women are more likely to have less severe symptoms and push on for a longer period of time before presenting for help.

"All of this means (through no fault of their own, of course) that statistics show women are more likely to have delayed diagnoses, missed diagnoses and some poorer treatment outcomes when it comes to heart disease compared to men."

Depression and anxiety.

If there's one thing women are good at, it's putting others first. We do it all the time. But forever prioritising everyone else's needs before yourself could be having more of an impact on your mental health than you might think.

"Burnout, depression and anxiety are among our most common mental struggles, and for women who are juggling competing demands, staying strong for everyone else and feeling a pressure to 'do it all' means significant mental health diagnoses are often still missed," said Dr Kennedy.

In fact, according to Beyond Blue, around one in six women in Australia will experience depression and one in three women will experience anxiety during their lifetime. 

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That's huge.

Women are also more likely to experience post-traumatic stress disorder (PTSD) and eating disorders at higher rates than men.

So what's the go? Why do women experience some mental health conditions at higher rates than men? 

Well, Dr Kennedy said there's very much still an underlying stigma around mental health.

"I’ve got a real passion for advocacy when it comes to mental illness – and this is definitely a big-ticket item when it comes to things many women (as well as men) are still missing," said Dr Kennedy.

"Once again, a combo of complex symptoms, stigma and stereotypes mean that for many women's mental health struggles, [they] remain hidden and delayed in presentation." 

As well as the high rates of undiagnosed depression and anxiety among Aussie women, Dr Kennedy said the pandemic has also triggered a massive spike in eating disorders and issues surrounding body dysmorphia.

"Research shows that eating disorders and struggles with body image have risen sharply over the pandemic, and these too are conditions many women struggle with but miss," he said.

According to the Sydney Morning Herald, Butterfly's National Helpline logged 15,835 calls and web chats about eating disorders and body image problems from March to August 2020, which is 43 per cent higher than the same time a year ago. 

"Worries about weight and body image pressures are incredibly common, but many are feeling pressures and moving through situations that could actually really benefit from some professional support and help." 

Dr Kennedy said recognising the signs and symptoms of mental health issues in women and understanding the factors that contribute to these conditions is a really important step towards not only helping yourself but also others around you.

"We’re making real ground when it comes to increasing awareness and acceptance for diagnoses that impact our mental health. However, these are conditions in women's health that still have big delays in being diagnosed."

How to know when to seek help.

Whether it be dealing with physical or mental health issues, another big issue is that many women wait until they're near-breaking point before they finally decide to seek help. 

"I think it’s important to add here that delays in diagnosis, both mentally and physically, often come from not knowing when something’s worth booking an appointment for. My advice here is crystal clear and something I tell people often – the right time to seek help and make the appointment is any time that question is there," said Dr Kennedy.

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Even if you have this little niggling feeling in the back of your mind that something just doesn’t feel right, that this might be more than just stress or that that ‘heartburn’ has lasted longer than usual, Dr Kennedy said if you’re asking yourself the question, then that’s the time to act.

"Keep attuned to how you’re feeling and make it an active habit to check in with how the body and mind are doing. The body and brain are creatures of habit, and so any change from normal that’s up/down, significant or just not going away should signal that it’s time to check in with your doc," he said.

"There’s zero shame or blame attached to symptoms, or diagnoses, if they’re there – it’s better to be safe than sorry, so when in doubt, reach out."

For free help and support for eating disorders, contact the Butterfly Foundation’s National Support line and online service on 1800 ED HOPE (1800 33 4673) or at [email protected] You can also contact  Lifeline on 13 11 14 if you or someone you know needs assistance.

Feature image: Getty

Do you suffer from any of the above conditions? Share your experience with us in the comment section below.

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