Improving Referral and Speed of Diagnosis of Endometriosis                      Send Link



Improving referral and speed of diagnosis of endometriosis
Mark Perloe, MD

Studies carried out in the USA, the UK and Australia have demonstrated that the difficulty in timely diagnosis of endometriosis is universal. The delay in diagnosis was recorded as 9.28 years in the North American Endometriosis Association Survey (NAEAS) of 4000 members; this includes a delay in the patient seeking help from a physician for an average 4.67 years and a delay of 4.61 years in the physician making a diagnosis of endometriosis. A UK study of 2102 women demonstrated an average of 6.8 years from onset of pain to diagnosis. The Australian Endometriosis Society (AES) study of 748 women with endometriosis found a delay averaging 1.7 years from onset of symptoms to consultation and a delay from consultation to diagnosis averaging 4.4 years.

Lack of awareness and understanding lead to patients delaying initial consultation. In the AES study, younger women were more likely to experience delay in diagnosis; those aged 15-19 years experienced an average delay of 8.3 years, while those aged 30-34 years experienced a delay averaging 1.3 years. The lack of non-surgical methods of diagnosis and failing to complete a comprehensive medical history often leads to confusion of pelvic pain due to a number of causes as shown in Table 1.

Table 1. Sources of pelvic pain.


Irritable bowel syndrome

Cystitis Hernia

Nerve entrapment

Ovarian cyst

Musculoskeletal disorders


Ectopic pregnancy

Uterine leiomyomata

Pelvic inflammatory disease with
chronic pelvic pain due to endometriosis

Consultation with a general practitioner prior to gynaecological referral has been suggested as a cause for delay. However, a mean delay of 8 years was seen in a UK study of 218 women with confirmed moderate to severe disease compared with 11.7 years in the USA where access to gynaecological specialists rarely requires referral. Delays of more than 20 years were seen in 10% of UK women compared with 18% of US women.

Another UK study found that patients who had been diagnosed with endometriosis had a longer history of pelvic pain symptoms than those who did not have endometriosis (28.6 months versus 16 months). Of the 4000 women in the NAEAS, 61% were told that there was nothing wrong with them when they first consulted a doctor. One in three women stated that their doctors took their symptoms 'not at all seriously' and a quarter 'not very seriously'. Almost half had to see a doctor five times or more before they were diagnosed or were referred to a physician who correctly diagnosed the condition.

Surveying members in a support association may introduce a sampling bias membership of such an organisation may indicate women who have more advanced disease or those who have particular difficulty in achieving satisfactory resolution of their symptoms. Yet these data can not be ignored. Together these studies indicate a need for improved patient education regarding the symptoms associated with this progressive condition. Better medical history taking skills, an increased willingness to take patients' complaints of pelvic pain seriously, improved physician training, continuing medical education for gynaecologists as well as general practitioners and improved non-invasive screening tests are necessary to better meet the needs of our patients.

For further information, please refer to the following reports available on the Internet.

North American Endometriosis Association Survey
North American Endometriosis Association press release
WCE report - Dr Barlow