Women suspected of suffering from the painful womb condition endometriosis are missing out on scans which could speed up diagnosis by years and spare them from surgery, experts say.
Studies show that if a simple ultrasound is carried out by a specialist, they can accurately spot the most severe form of the condition – ending the distress for many who have to battle, sometimes for decades, just to have their painful symptoms taken seriously.
The debilitating disease, which affects as many as one in ten women in the UK, involves cells from the lining of the uterus growing elsewhere in the body, causing lesions and scarring on other organs such as the bowel, bladder and even the lungs.
Celebrities who have shared their experience with the condition include Dolly Parton, former Spice Girl Emma Bunton and ex-First Lady Hillary Clinton.
SEVERE PAIN: Britt Gibson, 33, had her symptoms dismissed by GPs
Celebrities who have shared their experience with the condition include Dolly Parton
Despite causing excruciating agony and heavy periods, many women find themselves dismissed by doctors who have little awareness of the condition and who tell them their pain is normal. This is compounded by the fact the scans given to most women are standard pelvic ultrasounds, which look only at the ovaries and uterus and often fail to detect the condition elsewhere in the pelvis.
Campaigners protest that there are too few of the highly trained specialists required to carry out the more detailed scans. For this reason, women with endometriosis symptoms who receive a negative scan tend to undergo a laparoscopy – where a camera is inserted via incisions in the abdomen to look for scarring. In some cases, doctors can remove abnormal tissue at the same time.
This has for years been the gold-standard way to diagnose endometriosis. But the operation, carried out under general anaesthetic, comes with risks, such as infections and internal lacerations.
There are also long waiting lists and, if the condition is found, additional surgery may be required.
A review of the evidence carried out by the European Society of Human Reproduction and Embryology (ESHRE) recently concluded that ultrasound scans performed by experts were ‘similar or slightly better’ than surgery in diagnosing some forms of endometriosis. Its guidelines now recommend ultrasound and MRI scans as a first-line diagnosis.
After Health Minister Victoria Atkins said, at the Women’s Health Summit in London earlier this month, that improving the diagnosis and care of women with endometriosis was one of her ‘top priorities’, there have been growing calls for the UK to adopt ESHRE’s approach.
Emma Cox, chief executive of the charity Endometriosis UK, says: ‘These scans are used far more widely in Europe than they are in the UK. While there is generally the right equipment to do quality ultrasound on the NHS, you need people who know how to u se the kit and are trained to identify endometriosis.
‘We have a real opportunity in the UK – the Government is spending £25 million on women’s health hubs and rapid diagnostic centres. There’s potential to help women get a quicker, more accurate diagnosis for a condition which has, for too many years, been overlooked and dismissed.’
Endometriosis UK says it takes most sufferers nearly eight years to get a diagnosis – partly due to flawed scanning techniques. ‘It means many women are often wrongly told they have no physical signs of endometriosis, despite being in agony,’ adds Ms Cox. ‘Training is the big issue. Organisations such as the British Medical Ultrasound Society are developing specialist training programmes, but the NHS needs to ensure that staff undergo the training.
Ex-First Lady Hillary Clinton also shared her experience with the condition
‘We need gynaecological imaging seen as a priority.’
Dr Sofie Piessens, an expert in gynaecological ultrasound at Monash University in Melbourne, says: ‘A normal pelvic ultrasound usually focuses on the uterus and the ovaries, and most of the time those are not involved in endometriosis. The person carrying out the ultrasound has to know to look in the right places.’
There are three main types of endometriosis, and women can have one, two or all three.
In the first type, cysts called endometriomas grow on the ovaries. In the second type – affecting about 80 per cent of patients – abnormal tissue grows in the peritoneum, the membrane surrounding the organs in the abdomen. It’s known as superficial disease. The most severe type, known as deep endometriosis, sees multiple larger lesions penetrate far into the walls of other organs. This can cause them to clump together in places (known as adhesions). The specialist scans can pick up the first and third types – so if offered more widely, about 20 per cent of women with endometriosis could potentially be diagnosed more rapidly.
‘Last resort’ surgery found bits of my pelvis were stuck together
Anita Guru, 42, from Guildford, Surrey
Anita Guru, pictured above, spent three years trying to find out what was causing her debilitating pain – and was only diagnosed with endometriosis when doctors agreed to laparoscopic surgery ‘as a last resort’.
Trips to the GP and standard pelvic ultrasound scans had failed to detect lesions hidden behind and underneath the 42-year-old’s uterus. Doctors had even explored her stomach with a camera to see if her problems were linked to her digestive system.
‘I’d get this twisting, hot pain in my abdomen which was worse when I was having a period,’ says Anita, from Guildford, Surrey. ‘I’d be taking painkillers, using hot water bottles and told that it was normal. The scans showed nothing. I just had to try to carry on with life.’
It was only when she was referred for a laparoscopy in 2014, after struggling to conceive, that Anita, who runs life-coaching and wellbeing consultancy The Mind Coach, was told she had a severe form of endometriosis.
‘Bits of my pelvis were all stuck together with it. It was so bad they couldn’t remove it there and then, and they had to transfer me to another advanced specialist who had to operate again.’
Anita has since had four further bouts of surgery to remove lesions which have built up, causing a further negative effects on her fertility and mental health.
‘An earlier, more advanced scan might have made a difference. I may have needed fewer exploratory procedures, less surgery, and they might have found it sooner.’
However, they can’t pick up the second type, so the majority of women will still need surgery to confirm they have the disease.
Dr Piessens’ research shows what a difference it can make to patients if the ultrasound operators, known as sonographers, are experienced in dealing with endometriosis.
Her analysis found that those without experience failed to pick up lesions on the bowel or the pouch of Douglas – an area between the uterus and rectum – while all of those with experience did so in every patient.
For women who have struggled for years with unexplained pain, a diagnosis of endometriosis is vitally important.
Some may then be prescribed hormonal treatments, such as the contraceptive pill, which reduces pain by limiting the production of oestrogen – a hormone that encourages endometrial tissue to grow.
If women need surgery to remove lesions or adhesions, the scans can also allow doctors to map out the location of the disease before an operation. This is particularly important if found in the bowel, bladder or lungs, where removing tissue is far more complex.
One woman who believes that she may have benefited from the specialist scans is Britt Gibson, who spent 15 years in agony before her endometriosis was finally diagnosed.
The 33-year-old was in such pain she would curl up in a ball on the floor and, as a teenager, regularly missed school. She had extremely heavy periods and migraines, but her GP repeatedly told her it was just a ‘bad period’ to be managed with painkillers and a hot water bottle.
‘Countless doctors insinuated it was all in my head, that I was being dramatic and that it was partly just stress,’ says Britt, who lives in Glasgow.
‘I had standard scans which showed nothing, but I’d be in so much pain I couldn’t walk. One GP simply shrugged and said, ‘Well, 70 per cent of pelvic pain is unexplained.’ ‘
It wasn’t until she was 29 that she was finally referred to a gynaecologist. But when Britt suggested she might have endometriosis, they dismissed it and instead carried out a brief pelvic scan to make sure her Mirena coil – a form of long-term birth control which can help ease period problems – had been fitted properly.
‘I was devastated. It had a huge impact on my mental health. I went back to my car and wept. I’d been in pain almost my whole adult life, bleeding for weeks at a time, and I was just dismissed.’
She sought a second opinion, and shortly before her 30th birthday was diagnosed with endometriosis during a laparoscopy which found the disease on her bladder, uterus and ovaries, which had stuck to her pelvic wall.
‘You can’t prevent endometriosis but you can prevent the severity of the progression, which is why these scans could be so important,’ Britt says. ‘They can’t pick up every case, but if I’d had one earlier it might have saved me a lot of pain and damage.’
For those who still will not benefit from these scans, there is hope on the horizon which could revolutionise diagnoses further.
A team at the University of Oxford is trialling a scanning technique which is showing promise in picking up superficial endometriosis.
The technique involves injecting a radioactive ‘dye’ which binds to areas of inflammation caused by endometrial cells in tissue outside the womb. This can then be picked up by a 20-minute scan, helping doctors locate where the abnormal tissue is in the body. The dye, which has been developed by British company Serac Healthcare, is being tested to help diagnose and treat people with rheumatoid arthritis, another inflammatory disease.
The early results will be presented in March, but Dr Tatjana Gibbons, lead researcher on the study, says it is already showing ‘real promise’.
‘Even if we can get more training in place to perform more specialist ultrasound scans and diagnose all the ovarian and deep disease, we still can’t see the superficial disease,’ she adds. ‘This new technique seems really promising.
‘It’s unlikely to remove the need for ultrasound, but it may be useful for people who have a negative ultrasound with symptoms that suggest endometriosis.’
Ms Cox adds: ‘Scanning isn’t a case of, here we are – we’ve found a cure. But for some, it would make a massive difference.’
