Endometriosis: time to bring the 'missed disease' into the open

Second to menstrual disorders including menorrhagia, endometriosis is the most common gynaecological condition with more than 1.5 million women in the UK estimated to be living with it. Symptoms are often described as life changing. A delayed diagnosis can cause years of excruciating pain, mental trauma and infertility.

Why then, do so many women have to battle for so many years to be properly heard and diagnosed? Why are they so often misdiagnosed with other problems such as irritable bowel syndrome, period pain or mental health issues such as hypochondria? Why is it known as the "missed disease"?

Endometriosis is caused by tissue growing outside of the womb often into the pelvic cavity. It is graded in terms of severity, with Stage 4 being the most advanced. Common symptoms include severe pain and fatigue, painful and heavy periods, painful sex and fertility difficulties. The effects can be devastating and the inability of the medical profession to promptly diagnose and treat the problem only serves to worsen the suffering with women losing faith in the NHS, or doubting their own ability to cope with what they are often told is normal period pain.

The media has reported many stories of women who had pain so severe that it caused them to scream and pass out, or those women whose condition, once diagnosed, was so advanced that they were advised to undergo a hysterectomy, often before they had chance to have children.

Many specialist doctors working within the NHS routinely diagnose and treat endometriosis. But the problem is commonly with primary care where women are incorrectly reassured by their GPs, who may not be aware of the signs and symptoms (often very similar to other common but less severe conditions). This means that many sufferers never get to see a specialist, or only get to see one once their condition has advanced, missing the opportunity to address it earlier.

Unfortunately diagnosing endometriosis is not possible through a simple test and is usually achieved through laparoscopy (keyhole surgery). Even though the condition can be managed through surgery, there is no definitive treatment meaning there is a risk it could return. Monitoring the condition is therefore important and, in serious cases, hysterectomy may be advised. The best course is clearly early diagnosis to avoid as far as possible future complications, including fertility issues.

Although laparoscopy is the best method for diagnosing endometriosis, it is generally not readily and quickly available. Women with access to private healthcare may find a quicker route to diagnosis and treatment. A paper about to be published in the Journal of Health Communication also found that treatment was subject to a postcode lottery, adding another example of the healthcare inequalities widely reported in the UK.

Doctors who are not aware of the possibility that a patient may have endometriosis, thereby causing a delay and worsening of their condition, may be subject to a negligence claim to compensate someone who has suffered long-term and often life-changing pain and irreversible physical symptoms.

Thankfully, endometriosis is finally getting more airtime, with the media raising awareness by telling the stories of those affected and the campaigning work by the charity Endometriosis UK.

Read more about our delayed diagnosis claims and hear from clients.