When you’re ill all you want is to feel better — but that often depends on getting a diagnosis.
And with serious diseases, how quickly you get that diagnosis can make all the difference.
Earlier this month NHS England announced a £15 million plan to speed up the diagnosis time for cancer.
The time it takes to spot any illness — not just cancer — can be affected by myriad issues, explains Emma Greenwood, head of policy at Cancer Research UK.
‘People need to be aware of symptoms but also must act when they notice them,’ she adds.
Even when you go to a Londo, they only have a ten-minute appointment in which to distinguish a minor ailment from something more serious — and they may be assessing conditions they’ve rarely seen.
For instance, most GPs only see seven or eight new cases of cancer a year, says Emma Greenwood.
Here we look at the surprising length of time it can take to get a diagnosis for a range of conditions after a first visit to the doctor.
ENDOMETRIOSIS
7.5 years
MISDIAGNOSED AS: Problem periods in young women, IBS in older women.
SYMPTOMS
Painful periods, bowel and bladder disturbance usually during periods, pain during sex, infertility.
This painful condition is caused when tissue that normally grows in the womb, and is shed each month, is found elsewhere in the body, such as around the ovaries, or the bowel.
This causes pain in cycles with your period.
The delay in diagnosis may be partly due to doctors’ reluctance to over-treat what might be simple period pains, says Ertan Saridogan, a consultant gynaecologist at University College London Hospital.
‘The gold standard is a laparoscopy (looking inside the abdomen with a camera under anaesthetic) — and you don’t want to do that, especially to a young girl, unless you are sure you need to.’
But there’s also ‘a lack of awareness among women and health professionals’, he adds.
COULD I HAVE IT? If your symptoms usually tie in with your period and are making everyday life difficult, seek medical advice.
Carol Pearson, 43, a former chartered accountant, from Haywards Heath in West Sussex, had endometriosis for 20 years before she was diagnosed at the age of 31.
‘I’d had painful periods from 11 — at times I thought I was going to pass out with the pain,’ she says. ‘One of the reasons my marriage failed in my 20s was because sex was also unbearably painful.
‘Then in my late 20s I started bleeding between my periods. A gynaecologist told me it was simply brought on by the stress of my moving house.
But even after that I was in almost permanent agony, so I went to another gynaecologist a year later — I finally had a laparoscopy and was diagnosed with endometriosis.
‘I’ve now had eight laparoscopies to remove the tissue in my pelvis and at 41 had a hysterectomy — I couldn’t put up with the pain any more.
'I was medically retired because I was spending so much time in hospital.
‘The hysterectomy hasn’t cured me but it has helped me take back control of my life.’
HEPATITIS
20-30 YEARS
MISDIAGNOSED AS: FATIGUE
SYMPTOMS Chronic tiredness, joint pain, brain fog.
In the later stages skin becomes yellow, with itching, abdominal pain and nausea.
The hepatitis C virus is passed on via infected blood — for example, from blood transfusions given prior to 1991 (before screening of blood began) or from dirty needles or medical equipment.
The virus uses liver cells to replicate, but in the early stages the liver can repair the damage.
‘However, each repair will lead to scarring that ultimately stops the liver functioning as normal. This is cirrhosis,’ says Dr Stephen Ryder, a consultant liver specialist at the Queen’s Medical Centre, Nottingham.
Only one in three infected people has early symptoms. ‘It is reasonably common to have been infected for 30 years without knowing it,’ says Dr Ryder.
Untreated it can reduce life expectancy by ten years.
‘There will be people today who had a blood transfusion back in the Eighties, who have no idea they have hep C,’ adds Dr Ryder.
COULD I HAVE IT? ‘If you believe you’re in a high-risk group and don’t feel right, then you should have a blood test,’ says Dr Ryder.
‘At-risk groups include people who have had medical treatment abroad, and not just in at-risk countries such as Egypt and Pakistan — even Spain brought an increased risk until recently.
IT HAPPENED TO ME
Michelle Tolley, 51, was diagnosed last November.
A former Tesco customer services assistant, Michelle, a mother of four, lives with husband Dean, 52, in Norwich.
‘It was devastating to think I had been living with this virus for 29 years,’ she says.
‘It was even more upsetting to know that had I been diagnosed earlier I would be in much better health. As it is, I have cirrhosis and am in a lot of pain.
‘I also have brain fog and could sleep virtually all day.
The doctors believe I was infected in 1987 when I gave birth to my first son. As he came out his shoulder got stuck and I needed four pints of blood.
‘I saw an advert in the Nineties saying if you had a blood transfusion before 1991 you might have hepatitis C and need testing, but when I went to my GP, he said there was no chance someone like me could have it and sent me away.
‘I felt tired all the time, although with four children I felt that was to be expected. Then last year I lost three stone in under a year and I kept having bad stomach pains.
‘A blood test for hep C confirmed I have it and a scan showed I already have cirrhosis.
‘If this had been picked up earlier I might be enjoying life rather than just surviving.’
COELIAC DISEASE
13 years
MISDIAGNOSED AS: Heavy periods causing anaemia; IBS; poor diet.
SYMPTOMS: Anaemia, recurrent mouth ulcers, fatigue, stomach pain, diarrhoea, weight loss. Coeliac disease is relatively common — the NHS estimates it affects one in every 100 people in the UK — yet it can take an average of 13 years to diagnose.
It is an immune reaction to gluten, the protein in wheat, barley, rye and oats, causing inflammation and damage to the intestine.
This can hamper the absorption of nutrients, and untreated it can lead to anaemia or weakened bones (from lack of iron or calcium).
‘There is a generation of family doctors who think if someone has coeliac disease they will have gut symptoms — but the most common symptom is anaemia,’ explains Sarah Sleet, CEO of Coeliac UK.
COULD I HAVE IT? A blood test can detect antibodies to gluten.
OSTEOPOROSIS
10-20 years
MISDIAGNOSED AS: Osteomalacia —weakening of bones due to vitamin D deficiency.
SYMPTOMS: Bone fractures from very minor injuries.
Bone is constantly being broken down and replaced. With osteoporosis, old bone is lost at a faster rate than it is replaced, leading to weak bones that may fracture with minimal force.
‘The problem is that often the first symptom is a fracture,’ explains Dr Stephen Gallacher, an osteoporosis specialist at Queen Elizabeth University Hospital in Glasgow.
‘When someone — especially those with a risk factor, such as post-menopausal women or someone who has taken steroids long-term — has a fracture they should have their bones scanned to check for osteoporosis, but too often this doesn’t happen.
‘Around one in five women have experienced at least three fractures before osteoporosis is raised.’
Preventing a fracture matters —hip fractures are linked to a raised risk of dying for three years afterwards.
COULD I HAVE IT? If you have a fracture following minimal impact, ask for a bone density scan.
Source: Dailymail
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