AN ASTONISHING one in ten women in the UK suffer from “endometriosis” – a condition which sees cells like those which line the uterus grow in the pelvic region, outside the womb, or elsewhere in the body.
The condition is almost always painful – sometimes agonisingly so. It will also lead to heavy periods, which are often debilitating, and fatigue. It can damage organs in the pelvic area, such as the bowel, bladder or ovaries, as well as affecting mental health. Women who suffer from it will find that the condition limits what they can do day to day – sometimes severely.
But the problems that endometriosis causes are not the start of the battle. It can, and often does, take up to ten years for a woman to get a diagnosis. While she is going from doctor to doctor, from hospital to hospital trying to find out why she is in pain, her life is on hold. Schools, colleges and employers see her as unreliable because she “can’t cope with a bit of period pain”.
One of the reasons why it takes so long to get a diagnosis is because of anti-woman bias in the medical world – which has started to change, after years of pressure from the women’s movement. Another reason is that the condition is actually very hard to diagnose.
Doctors use different types of scan to find out what is going on – ultrasound or CT scans being the most common, which are not always sensitive enough to help in the early stages of the condition. It is usually necessary to have a laparoscopy – inserting a camera into the pelvic area through a small cut in the abdomen – to get a definitive diagnosis. But it can take years for a doctor to suspect endometriosis and order a laparoscopy.
A new approach to diagnosis has been piloted at Oxford University. It’s a small change, but it seems to work. Instead of using just a CT scan, a molecular tracer (maraciclatide) is also brought in. The combined effect basically makes the CT scan more sensitive. The pilot involved 19 women and it made a correct diagnosis of whether each woman had endometriosis in 16 cases. The 19 women went on to have surgery to get a reliable diagnosis; 17 women were found to have endometriosis as a result of the surgery. The new scanning system picked up 14 of those 17 cases.
The numbers of women involved in the pilot is very small, but the results are promising. Not only can the new technique be used for diagnosis – it can also help researchers learn more about how the condition develops. A second, larger study needs to take place as a matter of urgency. Women are waiting to get their lives back.
●For more information, go to: NHS video on endometriosis
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