Daisy-Rae Hayes, 22, from Maldon, Essex suffers from excruciating headaches
Daisy-Rae Hayes has experienced head pain so intense that sometimes she would lose consciousness for a few seconds.
‘It was as though my brain was cutting out for a few seconds — giving me time to breathe,’ says the baker from Maldon in Essex.
It didn’t help, she says, that her doctors made it clear they thought she was exaggerating her symptoms. ‘All the signs your daughter is showing can’t be proved, you know,’ one neurologist told her mother when Daisy-Rae was 17, adding: ‘If I were you, I’d keep an eye on her.’
‘They seemed to have decided I was a hysterical girl, trying to get attention or something,’ Daisy-Rae, 22, recalls.
A second neurologist diagnosed hemiplegic migraine, involving throbbing pain as well as weakness of the right side of her body. ‘That’s a serious diagnosis, but I still didn’t feel as though the doctors had really understood my symptoms,’ she recalls. ‘I was given medication that included painkillers, and other drugs including steroids, to prevent the headaches starting. But they didn’t work.’
At regular three-monthly appointments, she’d be given a different type of drug. ‘Often they’d simply add another tablet into the equation. At one point I was taking 18 prescribed tablets every day. I was still a teenager. My life was falling apart. I had to leave three jobs, all in kitchens, in the space of a year because I was having to take so much time off.’
Daisy-Rae now knows that as well as hemiplegic migraine she was also suffering from cluster headaches, a condition that involves short episodes of intense pain — in her case around her eyes — occurring several times a day for weeks at a time.
Research reveals doctors routinely underestimate the severity of women’s pain
According to the charity The Migraine Trust, cluster headaches are ‘one of the most painful conditions known to mankind’ but until recently it was considered to be a male-only disorder.
While more men do get cluster headaches, the ratio of men to women with them is more like two to one, rather than 18 to one as previously believed, according to new research, indicating many women have been left undiagnosed.
‘It’s very worrying that a significant number of women are suffering this agonising pain and are subject to misdiagnosis or long delays in getting the treatment they need simply because they are women,’ says Dr Nunu Lund, a physiologist at the Danish Headache Center in Copenhagen and author of the new study which was published in the journal Neurology.
‘Of course, doctors should be aware of these new findings. But most of all they should listen to what women patients say about their experience of pain rather than make assumptions based on what they believe about women and pain,’ says Dr Lund.
AGONY THAT WOMEN LIVE WITH FOR YEARS
Helen McLaughlin, 32, couldn’t convince doctors that the pain she suffered was caused by endometriosis
Women are often told they have normal menstrual pain when they have endometriosis, an intensely painful condition caused when womb- like tissue starts to grow elsewhere in the body.
Research shows there is an average of 7.5 years between a woman first seeing a doctor about symptoms and getting a diagnosis.
In September 2017, the National Institute for Health and Care Excellence (NICE) issued new guidelines warning the medical profession to revise their approach to women with the condition. As NICE’s guidelines director, Dr Mark Baker explains: ‘Women are too often told by doctors that they are making a fuss about normal period pain, leading to years of unnecessary distress and suffering.’
Accountant Helen McLaughlin, 32, from London, was referred to a gynaecological surgeon by her GP two years ago when her normal period pains became increasingly severe and were affecting her every day of the month.
‘It felt as though my womb was trying to escape from my body with unbearable pelvic pain that radiated down to my knees. Walking and especially climbing stairs made it worse,’ says Helen who fainted from pain into her boyfriend’s arms at Liverpool Street station in 2014.
Helen, pictured, self-diagnosed endometriosis. ‘They were fairly classic symptoms,’ she says. But the hospital specialist insisted they were normal menstrual symptoms refusing for more than a year to do the diagnostic test, a laparoscopy where a camera is inserted into the pelvic area via an incision near the navel. ‘He was the expert. I had no voice,’ says Helen.
A growing stack of evidence suggests that, for a variety of reasons, the medical profession routinely underestimates the level of pain experienced by female patients.
As a result, their pain is treated less aggressively — whether it is a painful condition that afflicts both sexes — or a female-only disorder.
It’s a problem first identified in a major study published by the New England Journal of Medicine in 1991, which found that doctors are less likely to refer women for tests when they present with chest pain compared with men.
Nearly 30 years later, little seems to have changed — with a 2016 study published in the European Heart Journal showing that doctors are twice as likely to ignore pain symptoms in women having a heart attack ‘with potentially an increased risk of death’.
Painful tummy pains linked to endometriosis are often put down to menstrual cramps, research has shown
Meanwhile a series of studies since 2008 have shown that emergency medicine doctors take a different approach to male and female patients with stomach disorders and who have similar pain scores — offering higher levels of pain medication more promptly to men.
And when deciding to recommend hip or knee replacement surgery, further research has found orthopaedic surgeons have tougher criteria for women — due to an ‘unconscious bias’, according to Dr Mary O’Connor, director of the Musculoskeletal Center at Yale University in the U.S., who first published evidence to this effect in 2007.
The result is that women are up to three times less likely to get timely surgery, and often do less well than men because of what Dr O’Connor calls ‘never catch-up syndrome’. The surgery works equally well for men and women, she says, but because women typically have more advanced deterioration by the time they undergo surgery, the results are poorer.
So what’s going wrong?
‘Of course, GPs and hospital doctors want to do the right thing, says Dr Beverly Collett, a consultant in pain medicine at University Hospitals of Leicester NHS Trust and a former president of the British Pain Society. ‘But there’s no doubt that women’s symptoms are too often simply dismissed by their doctors.’
According to the charity The Migraine Trust, cluster headaches are ‘one of the most painful conditions known to mankind’ but until recently it was considered to be a male-only disorder
Ironically, compounding the problem is the idea that women are traditionally seen as having a higher pain threshold: in fact, women are more likely to complain about painful symptoms than men and rate them as being more intense.
A 2012 study carried out at Stanford University in the U.S. involving 11,000 patients found that this gender difference applies to long-term musculoskeletal problems as well as angina, digestive disorders, respiratory problems and even sinusitis.
And it’s also true of acute pain: studies show that women report higher levels of pain after having a wisdom tooth extracted or recovering from hip or knee surgery compared to men undergoing the same experience.
The difference between men and women is tellingly revealed in what happens after a sex-change operation. An Italian study published in the European Journal of Pain in 2004 showed that men undergoing surgery to become a woman and given female hormones began to complain about pain symptoms that they’d previously never mentioned — while women changing to men had the reverse behaviour.
‘It may seem surprising,’ says Dr Collett. ‘In fact, we’ve known for years that women are more sensitive to pain but only during child-bearing years.’
Before adolescence, boys report slightly more pain than girls, as do men over 60 compared to post-menopausal women.
And this isn’t about subjective or imaginary experience of pain. Women really do experience ‘higher levels of pain than men’, confirms Dr Roger Fillingim of the Pain Research and Intervention Center in Florida and lead author of a major review of sex differences in pain.
This has been shown in a series of laboratory studies over the past five years which have measured volunteers’ response to painful stimulation — exposing their hands to extreme heat or cold, mechanical pressure, electric shock or cutting off the blood supply: women are first to reach a point at which they say they can’t tolerate it any longer and ask for the pain to be shut down, researchers have reported.
Why this should be isn’t known — some experts believe that extra sensitivity to sense organs that signal danger, including pain stimuli as well as smell and visual cues, is hardwired into women by evolution.
Others point to the fact that women have more nerve endings in their skin. But clearly sex hormones are a major factor, says Dr Collett.
It is known that the female hormone, oestrogen, has an effect on pain levels — with evidence that women’s sensitivity to a wide range of chronic pain symptoms is cyclical, often becoming more severe when oestrogen levels peak in the menstrual cycle.
Amy Baker, 25, a London-based architecture student has lupus, an autoimmune disease that causes swelling and pain in the joints and lymph glands — with a monthly pattern to the intensity of the symptoms.
‘I’m in pain most of the time. But it gets much worse in the days before my period. I get agonising knee pain as well as a feeling of burning in the nervous system as though someone is pumping acid through my veins.’
She’s been prescribed a number of hormone treatments to relieve the symptoms, including the progesterone-only contraceptive Pill (she can’t have oestrogen treatment as it raises the risk of blood clots in lupus patients) which help to balance levels of female hormones during the menstrual cycle.
She says: ‘They do help control the pain but it’s always there. It’s so unbearably painful that I’ve begged repeatedly for a hysterectomy so I’ll go into menopause and stop my menstrual cycle. I’m told I’m too young. But I’d rather not have children than suffer the pain.’
But while oestrogen appears to have an adverse effect on pain in women, the opposite, it seems, is true of the male hormone, testosterone.
‘We know from laboratory studies with mice that testosterone blunts the experience of pain by triggering naturally occurring opioids that act as painkillers,’ says Dr Collett.
‘The higher the level of testosterone in the body in mice of both genders, the less the pain is felt.’
As well as dulling pain, testosterone also has an effect on behaviour. ‘Men with higher levels of testosterone are more likely to act tough about pain,’ she adds.
Meanwhile, pain expert, Dr Ed Keogh, psychologist at Bath University, says: ‘We all know that women are better at expressing emotion and talking about the way they feel.
‘It seems they may also be better at expressing their pain.’
And ironically this may work against them in terms of getting treatment, suggests Dr Collett.
‘For a start, we know that women are more likely to see a doctor to seek help earlier and more frequently than men.
‘So when men turn up at the surgery when the disorder is at a more serious stage, it’s perhaps not surprising that GPs tend to take them more seriously.’
But perhaps the key to improving pain relief for women needs fundamental change — at research level.
Extreme pain, for instance, has been relieved by morphine for centuries. But it’s only recently been discovered that with severe or persistent pain, both in the laboratory and in clinical studies, that females require two to three times more morphine than males to produce comparable levels of pain relief.
‘The truth is that 79 per cent of basic pain research is done in males,’ says Dr Fillingim.
‘That’s absurd, given that pain is above all a female problem. It means that much of the research carried out at the moment is at best incomplete and at worst totally invalid.’
Daisy-Rae’s nightmare with cluster headaches ended in December 2015 when she heard through a friend about the National Migraine Centre, a charity in West London. ‘The approach is holistic, with an initial 40-minute consultation giving enough time for our patients to talk about their symptoms and be treated correctly,’ says Dr Jessica Briscoe, a headache specialist at the centre.
‘The difference in the way the doctors approached my problems was dramatically different — they listened carefully to my description of the symptoms,’ recalls Daisy-Rae.
Treatment for cluster headaches may involve the same drugs as for migraines ‘but administered differently — with nasal sprays rather than tablets because the headaches are more intense and last for a shorter period so the medication needs to be absorbed quickly,’ says Danish headache researcher Dr Nunu Lund.
Getting the right treatment was just one approach for Daisy-Rae.
A further step was making simple lifestyle changes to reduce stress — something that’s now recognised as a major trigger for cluster headaches.
‘It was very liberating. Until I got to the centre, I’d been taking huge quantities of codeine to get me through each day. But I stopped taking them after my first appointment.’
She decided to go freelance and build up a cake-baking business in a workshop in her mum’s garden — which she now sells in a tearoom where she also works part-time.
‘Yes I’ve still got headaches but with the support of doctors who take me seriously, I’m happy that finally my life is back on track.’