GPs and specialists frequently overlook the symptoms of patients who have endometriosis.
Late diagnosis means women go years without treatment or pain relief. Patients also say they end up with an illness that is more difficult to treat than if it had been recognised earlier.
Up to one in 10 women suffer from endometriosis, which causes severe pain, exhaustion and can lead to infertility.
Patients wait years for a diagnosis and many have had to go back to doctors up to 10 times.
The watchdog Nice issued guidelines to medical professionals to improve detection rates and spare women years of suffering and anxiety. The guidelines urge GPs to refer women for scans if they have symptoms such as pelvic pain, chronic tiredness or difficulty conceiving.
Doctors are told not to rule out the condition even if initial scans come back normal. Instead, they should refer women for further tests, including keyhole surgery.
Endometriosis occurs when cells similar to those in the lining of the womb grow elsewhere in the body, including the ovaries, bowel or bladder. Some women only have mild symptoms while others have severe pain that can affect their quality of life and ability to conceive.
High-profile sufferers include UK singer Louise Redknapp and US actress Susan Sarandon. British singer Emma Bunton has also spoken out about the illness, as has American actress Whoopi Goldberg.
The condition can also lead to bowel problems similar to irritable bowel syndrome.
Millions of women of childbearing age may have endometriosis, although many are still waiting for a diagnosis.
Professor Mark Baker, director of the centre for guidelines at Nice, said: “Delayed diagnosis is a significant problem for many women with endometriosis, leading them to years of unnecessary distress and suffering.
“The condition is difficult to diagnose, as symptoms vary and are often unspecific. However, once it has been diagnosed, there are effective treatments that can ease the symptoms.”
Endometriosis can be treated with painkillers, hormone pills, or surgery to remove the scar tissue.
The Nice guidance says: “Patient self-help groups emphasise that healthcare professionals often do not recognise the importance of symptoms or consider endometriosis as a possibility.
“In addition, women can delay seeking help because of a perception that pelvic pain is normal. Many women report that the delay in diagnosis leads to increased personal suffering, prolonged ill-health and a disease state that is more difficult to treat.”
Caroline Overton, chair of the guideline committee and a consultant gynaecologist, said: “There is no cure for endometriosis, so helping affected women manage their symptoms is imperative.”
In March, a report from MPs warned that many women with endometriosis had visited their doctor up to 10 times before being diagnosed.
The All-Party Parliamentary Group on Women’s Health said patients had been abandoned by doctors and were often suspected of imagining their symptoms.
The report also said many endometriosis patients felt they were not given enough information about the treatment options. - Daily Mail