Not taken seriously? Why women's symptoms are missed more often

On average 6.7 years pass between the first symptom and an endometriosis diagnosis. That number does not come from a patient charity, but from research among 1,418 women across ten countries (PMID 21718982). In countries with mainly state-funded healthcare, the delay ran up to 8.3 years.

Six years is long enough to start doubting yourself. Plenty of women do exactly that: they shrink their own symptom first, before anyone else can.

Let me say this right away: this is not a story about GPs who do not listen. Almost every doctor we speak to wants nothing more than to land the right diagnosis. The problem sits in the system they work in, and that system was largely built on male bodies.

This page explains where the gap comes from, which conditions slip through it most often, and what you can take with you to your GP.

What is the gender health gap exactly?

The gender health gap is the difference between what medicine knows about male bodies and what it knows about female ones. That gap did not come from ill will. It came from women barely taking part in drug research for decades, so the knowledge that later landed in textbooks and guidelines was mostly based on men (PMID 27011778).

That knowledge is not wrong. It is only narrower than we long assumed.

What gives a recognisable textbook picture in a man of 45 can look different in a woman of 45. Not sadder, not vaguer, simply different. And a picture that is not in the book takes longer to recognise.

Time is exactly what a consulting room has least of. That is where the two halves of this problem meet: a knowledge base that started skewed, and a diary that leaves no room to straighten it out.

Why were women left out of research for so long?

Until the 1990s, women of childbearing age were often deliberately kept out of drug research. The reason was protection: after the thalidomide scandal, fear of harm to an unborn child weighed heavily. The result was that the effect and dosing of many medicines were studied mainly on male bodies (PMID 27011778).

The intention was good. The effect was that women took medicines decades later at doses never tuned to them.

This does not stay theoretical. Women get adverse drug reactions nearly twice as often as men. In an analysis of 86 approved medicines, 76 led to higher blood levels or slower clearance in women (PMID 32503637). For almost every drug with such a difference, side effects showed up more often in women.

Same pill, same dose, different body.

Since the 1990s this has been corrected substantially in Europe and the United States, and women do take part. But guidelines build on studies from decades back. You do not close a knowledge gap with one update.

So you cannot call this an individual mistake either. A doctor who follows a guideline is doing exactly what is expected of them. If the source of that guideline is narrow, it carries through to the consulting room, however good the conversation there is.

How does a heart attack feel different in women?

A heart attack more often gives women no classic chest pain. In a registry of over a million patients, 42.0% of women arrived without chest pain, against 30.7% of men (PMID 22357832). Breathlessness, nausea, extreme tiredness or pressure between the shoulder blades can take the foreground instead.

That difference was largest in young women. Under 45, the chance of arriving without chest pain was clearly higher for women than for men (PMID 22357832). As age rose, the gap narrowed.

The Hartstichting, the Dutch heart foundation, says the same. Women can have less obvious symptoms during a heart attack, and heart problems can develop differently in men and women.

Picture a woman of 54. She wakes at two in the morning with nausea, sweat and a nagging pressure between her shoulder blades. No elephant on her chest, no pain shooting down her left arm. So she waits until morning, because that is not what a heart attack looks like in her head.

For acute symptoms like these there is only one rule: call 112. Do not search online, do not wait for the practice to open, and certainly do not order a blood test. A test belongs to questions that can wait, never to an emergency.

Why those symptoms differ and which signals belong to them is worked out in heart attack symptoms in women. On longer-term risk, read more in heart disease in women.

Why do autoimmune conditions mainly affect women?

Of everyone with an autoimmune condition, an estimated 78% are women, and together these conditions affect roughly 8% of the population (PMID 18688037). Yet they rarely start with a clear signal. Often it begins with tiredness, joint pain or a vague malaise that is easily put down to a busy stretch.

That is the core of the problem. Those first symptoms are not specific. They overlap with stress, with menopause, with a bad year of sleep and with a heavy work season.

Why the skew exists is not fully understood. Hormonal influences probably play a part, as do genes on the X chromosome and differences in immune responses between men and women (PMID 18688037).

What this means for the consulting room is simple. A condition that hits a woman in almost four out of five cases shows up with symptoms that barely stand out in the textbook. That is not an individual blind spot, that is a structural pattern.

Why are ten minutes so few?

A standard appointment with a Dutch GP runs just over ten minutes, which puts the Netherlands mid-table internationally. In that time a symptom has to be heard, weighed, examined and explained. Analyses of what a GP has to do in a day show that ten minutes is tight for many consultations.

Ten minutes works fine for a symptom with a clear shape. A bladder infection, a twisted ankle, a rash you can simply look at.

Ten minutes works badly for a symptom made of five separate things that each look innocent alone. Tired, always cold, heavier periods, a short fuse, more hair in the brush. Alone, none of that amounts to anything. Together it is a pattern.

And that happens to be exactly the shape many women's symptoms arrive in.

The GP is not the culprit here. They get a diary with ten minutes per patient and do their best inside it. Anyone who wants to change this should point at those ten minutes, not at the doctor.

What you can do about it: use those ten minutes more sharply. Walk in with "I have not felt right for a while" and the pattern disappears. Walk in with a timeline and a concrete question, and your GP has something to work with. How to do that is in preparing for your GP appointment.

Which conditions look different in women?

Not every condition behaves in women the way the textbook says. In one the symptom picture differs, in another the odds, and in a third the way a complaint gets interpreted. The table below puts five well-known examples side by side, with what each difference means for the road to a diagnosis.

Notice what the table does not contain: a single row about a doctor doing something wrong. Every row is about knowledge that started narrow, a picture that does not fit the book, or a symptom that looks too much like something ordinary.

That is good news and bad news at once. Bad, because a structural problem is not solved in one appointment. Good, because you do not have to convince anyone of bad intent. You only have to put your symptom on the table more sharply.

What does "we found nothing" mean?

"We found nothing" almost never means there is nothing. It means the tests done so far showed no abnormality. That is a statement about those tests, not about your symptom. Endometriosis, for one, cannot be shown by any blood value at all (PMID 32212520).

That distinction sounds small and is not. A normal result rules out what was measured, and nothing beyond it.

If symptoms persist for three months or longer without an explanation, in the Netherlands they often fall under persistent physical symptoms, formerly called SOLK. Roughly 57 to 64% of the people who come to their GP with them are women. Thuisarts, the Dutch patient information site run with the NHG, explains that physical and psychosocial factors can both play a part, and that the symptoms are real.

That name describes a state of affairs, not an endpoint. What the label does and does not mean, and which investigations usually come first, is in SOLK: what the diagnosis means and what investigation precedes it.

Something else plays in too. Back in 2001, Hoffmann and Tarzian described how pain in women is read as emotional sooner and in men as physical sooner (PMID 11521267). That is not ill intent. It is a pattern that keeps turning up in the literature, and one you may take into account as a patient.

The same applies to fibromyalgia. Blood testing does not show the condition, but it can help rule out other causes of pain and tiredness. That difference is covered in recognising fibromyalgia symptoms in women.

Endometriosis: where do those 6.7 years sit?

The delay in endometriosis builds mainly in the years before a referral, and there is a structural reason for it. Period pain is very common, endometriosis causes it in a minority, and no blood value shows it. For a long time only keyhole surgery was proof (PMID 21718982, PMID 32212520).

Put those three facts side by side and the delay becomes almost arithmetic. A common symptom, a rarer cause, and no simple test in between.

Take two women of 29 with painful periods. One gets hormonal contraception, it helps, and that is where it ends. The other gets the same, it helps too, and only at 36, during fertility care, does endometriosis turn up. Same symptom, same step, a different story.

In that research, the delay also tracked with the number of pelvic symptoms a woman had (PMID 21718982). More symptoms at once meant more delay, not less. That is counterintuitive, and it says something about how hard a symptom pattern is to read when no test sits underneath it.

What endometriosis is, how the diagnosis runs and what blood testing adds to it, is in endometriosis: symptoms, diagnosis and what blood testing adds.

How do you spot that your symptom risks being missed?

No checklist proves this, but there are patterns that make it likelier. They all share a shape: your symptom does not fit one box, or you have been back a few times without anything changing. That is a signal to rebuild your story rather than repeat it.

Think of a symptom you have reported three times that was read as something different each time. Or a result called "normal" while your value sits just inside the border and stood somewhere else entirely last year.

Or the moment a conversation tips toward stress before anything has been measured. Stress can genuinely be the cause, and that explanation gets stronger once the body has been looked at first.

That is not distrust. It is the same order a doctor would keep if there were time for it.

Your toolkit: getting your symptom properly investigated

You will not change the system on your own, but you can prepare your appointment better. What helps is being concrete: a timeline, a pattern and one clear question. Below is what you can take to your GP, and where to read on per step.

• A timeline of your symptoms. When did it start, what has changed since, what makes it worse or better. Dates beat "for a while now".
• A pattern instead of separate complaints. Note whether something tracks with your cycle, your sleep or exertion. That turns a vague symptom into a lead.
• Your main question as the first sentence. In ten minutes the opening carries the most weight. Do not save your biggest worry for the door.
• Earlier results lined up. Last year's value next to today's shows a direction one single measurement never gives.
• Ask what has been ruled out, and what has not. "What have we looked at so far?" gets you further than "is something wrong?".

That preparation is worked out step by step in preparing for your GP appointment: getting your symptoms taken seriously.

If you keep feeling something is off, you may ask for a second opinion. That is a right, not cheek, and your GP is used to the question. What it costs, how the route runs and what your insurance covers is in requesting a second opinion: your right, the route and the cost.

What does blood testing help with, and what not?

Blood testing makes no diagnosis and does not replace your GP. What it can do is feed your conversation with numbers instead of feeling. A thyroid value, a ferritin or a hormone profile is not an answer, but it does give your GP something concrete to respond to.

That is the whole idea behind testing yourself. Not instead of your GP, but as preparation for them.

You notice the difference in the first thirty seconds of an appointment. "I am tired and it is not going away" is a feeling. "My ferritin was 14 in March and 11 now, and the tiredness tracks with it" is a lead. Same woman, same symptom, a different conversation.

If you want a view of your hormones around menopause, you can have a menopause check done. Which hormone tests exist and why your cycle day counts is in hormone testing in women: which tests and when.

If something in your result deviates, discuss it with your GP. What a value means for you depends on your symptoms, your age and your history, and your GP weighs that. My advice stays the same as at the top of this piece: the goal is not to be proved right, the goal is to be investigated.

References

1. Nnoaham KE, Hummelshoj L, Webster P, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril. 2011;96(2):366-373. PMID 21718982.
2. Zondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med. 2020;382(13):1244-1256. PMID 32212520.
3. Canto JG, Rogers WJ, Goldberg RJ, et al. Association of age and sex with myocardial infarction symptom presentation and in-hospital mortality. JAMA. 2012;307(8):813-822. PMID 22357832.
4. Fairweather D, Frisancho-Kiss S, Rose NR. Sex differences in autoimmune disease from a pathological perspective. Am J Pathol. 2008;173(3):600-609. PMID 18688037.
5. Liu KA, Mager NA. Women's involvement in clinical trials: historical perspective and future implications. Pharm Pract (Granada). 2016;14(1):708. PMID 27011778.
6. Zucker I, Prendergast BJ. Sex differences in pharmacokinetics predict adverse drug reactions in women. Biol Sex Differ. 2020;11(1):32. PMID 32503637.
7. Hoffmann DE, Tarzian AJ. The girl who cried pain: a bias against women in the treatment of pain. J Law Med Ethics. 2001;29(1):13-27. PMID 11521267.
8. Hartstichting. Women and cardiovascular disease. Available via hartstichting.nl.
9. Thuisarts and NHG. Insufficiently explained physical symptoms (SOLK). Available via thuisarts.nl.

Every blood test result at Lunara includes a professional assessment by a BIG-registered doctor. For treatment decisions, discuss your results with your GP.