What to do when your GP dismisses your symptoms as ‘just hormones’. It’s shockingly common says DR KAYE… here’s how to know if it’s really fibromyalgia, chronic fatigue or another condition

It’s a shocking story that I’ve heard far too many times: Female patients with debilitating, life-changing symptoms that are dismissed by male doctors as simply ‘just hormones’.

Last week, the Daily Mail revealed the heartbreaking tale of Ivy Ganguly, a 22-year-old trainee solicitor who was struck down with fibromyalgia – a long-term condition that causes widespread pain, exhaustion and problems with sleep, memory and concentration.

Ivy, who believes the chronic illness was triggered by several bad bouts of Covid, says she was left with constant pain so bad that even light pressure on her back felt like a broken bone.

Ivy also battled with crushing fatigue even as she prepared for her solicitors qualifying exam. However, when she turned to her GP for help, she was brushed off.

Her GP told her that it was probably her ‘hormones’, and that the key to recovery was simply some rest and drinking plenty of water.

Unsurprisingly, it wasn’t. Ivy’s agony continued until, after several months of pushing to see a specialist, she was finally given a diagnosis and tailored advice on how to manage her condition.

Worryingly, Ivy’s story is far from unique. Over my two decades as an NHS GP I’ve heard of countless similar cases, where women’s health problems are put down to hormones – crucial chemicals produced in the body.

It’s an unhelpful diagnosis as it often means doctors will put off looking for more complex explanations for health problems. 

It also gives the impression that, whatever the patient is suffering from, there’s very little a doctor can actually do to help.

And it’s a diagnosis disproportionately handed out to women. Men’s chronic health issues are almost never put down to ‘hormones’, even though they also have the chemicals in their bodies.

Female fibromyalgia sufferers are regularly dismissed in this manner, but they are not the only ones. 

Women living with chronic fatigue syndrome and premenstrual dysphoric disorder (PMDD), a mental health condition that is linked to periods, also regularly face an uphill battle to convince their GP that their issues are more serious than ‘hormone problems’.

However, there is some good news. Over my years as family doctor who specialises in women’s health, I’ve learned that there are ways of dealing with these dismissive doctors.

In fact, there are several simple steps I would always advise women seeking a diagnosis – whether that’s for fibromyalgia or another similar condition – should take.

First, it’s important to explain what we know about fibromyalgia. The long-term condition is characterised by widespread pain throughout the body. Often this pain is triggered by pressure or light touch.

Other symptoms to look out for are stiffness, fatigue, and brain fog.

It is not caused by any obvious damage to the muscles, bones or joints. Instead, experts believe it is triggered when the nervous system – that sends physical sensations like heat, pleasure and pain to the brain – malfunctions.

It is sometimes triggered by a recent bout of illness or a stressful life event. Around one in 50 Britons are estimated to suffer from it, but only a quarter of those affected are diagnosed.

This is, in part, because there is no way to test for fibromyalgia. It is typically only diagnosed after other potential causes are ruled out. However, it is also underdiagnosed because many doctors do not take it seriously.

This is damaging because, while there is no fibromyalgia cure, growing evidence does suggest that there are medicines that can help alleviate some of the symptoms. 

This includes the tablets amitriptyline and nortriptyline, two antidepressants that also appear to help combat nerve pain. 

Talking therapy can also be extremely helpful. This isn’t because it’s ‘in the head’. Instead, research shows talking therapy can help patients manage better their pain and fatigue.

Crucially, without a fibromyalgia diagnosis, patients may not be able to access these prescription drugs or talking therapy.

Women with chronic fatigue syndrome – also known as myalgic encephalomyelitis – also face a similar struggle to get a diagnosis.

There is no accurate test for the long-term problem, which causes extreme tiredness. 

Its symptoms also have a lot of crossover with other conditions linked to hormone changes in the body, including thyroid issues and the early stages of the menopause – known as the perimenopause.

Similarly, women with PMDD are also poorly served by healthcare professionals. The condition occurs when hormonal changes in the body before the period begins trigger severe depression and anxiety.

In this case, the problem is in fact triggered by hormones. However, doctors for years have failed to consider PMDD as a potential diagnosis, meaning many seriously unwell women go undiagnosed and without treatment.

Whatever the cause of a patient’s symptoms, my advice for getting a speedy and accurate diagnosis is the same.

First, don’t be afraid to do your own research. If a patient believes they may have fibromyalgia, then it’s worth looking up the symptoms of the condition – for example, on the charity Fibromyalgia Action UK’s website.

If the symptoms match, then patients should tell their GP that they believe they have fibromyalgia, and want the possibility to be explored. It can even help to bring a print out of the symptoms.

This is because your GP may have never seen a case of fibromyalgia, so it might help for them to have information about the symptoms to-hand.

I would also recommend keeping a symptom diary, so patients can explain in-detail what they are experiencing. This should include a description of their pain levels with a score out of ten, so the GP can understand the extent of their suffering.

It also helps when patients explain the impact that the symptoms are having on their life. Are you struggling to work as a result? Is your sleeping affected? Providing this information helps GPs understand what you would like to achieve from your treatment.

With hard-to-diagnose conditions like fibromyalgia and chronic fatigue syndrome, it’s crucial to rule out other possible triggers.

Thyroid problems, the iron deficiency condition anaemia and a vitamin B12 or D deficiency can all lead to symptoms similar to those of fibromyalgia and chronic fatigue syndrome.

Moreover, all these conditions can be quickly ruled out with simple blood tests, so patients should ask to be screened for them.

If patients believe their doctor is being uncooperative, or is not taking their symptoms seriously, then you can ask to see another GP.

If it is a women’s health issue, then patients can ask to see a specific GP with extra qualifications or more experience in women’s health. If this is possible, most surgeries will be happy to oblige.

And if this doesn’t work, patients can now request an urgent review of their diagnosis under a new NHS guideline named Jess’s Rule.

It is named after Jessica Brady, who died of cancer at 27 after being dismissed by her GP surgery 20 times.

The rule states that if a patient’s symptoms persist after three appointments with their GP, then their family doctor is obligated to take further action.

This might involve getting the second opinion of a colleague or referring the patient to a specialist. 

So, if you feel that this applies to you, then you should contact your GP surgery and request a review under Jess’s Rule.

The NHS exists to help – even if your condition is not easy to diagnose.

However, sometimes it can take some time to find the right doctor who is ready to listen to you. That’s why these steps are so invaluable.