How Long Does it Take to Be Diagnosed with Endometriosis?

How long do women have to wait before they are diagnosed with endometriosis and what are the factors that influence this?

Key Points

Highlights:

• There is still a delay of eight years from when endometriosis symptoms appear to when a woman is diagnosed with the disease.

Importance:

• This report highlights the importance of educating clinicians and raising public awareness about endometriosis. 

What's done here:

• Researchers in the U.K. analyzed the psychosocial status, symptoms, and experiences of 101 women with endometriosis through a self-reported questionnaire.

Key results:

• There is a median delay of eight years from first symptom onset to an endometriosis diagnosis
• The earlier the symptoms appear the later the disease seems to be diagnosed
• Factors that contribute to a delayed diagnosis include menstrual cramps in adolescence, presence of rectovaginal endometriosis, normalization of pain, and attitudes of health professionals.

Limitations:

• This is a retrospective study based on information provided by participants who may remember past events in a way that is not 100% accurate.
• The results are limited to women attending an endometriosis center. These women may have severe endometriosis or endometriosis that does not respond to treatment. The results may therefore not be representative for all cases of endometriosis.

Lay Summary

It takes a median of eight years to reach a diagnosis of endometriosis from when the symptoms of the condition first appear confirmed a new British study. Interestingly, it seems that the earlier the symptoms appear, the later the disease is diagnosed.

According to the authors, factors that contribute to a delayed diagnosis include:

• menstrual cramps in adolescence, 
• the presence of rectovaginal endometriosis, 
• the normalization of pain and, 
• the attitudes of healthcare professionals

These findings highlight the importance of educating clinicians and raising public awareness about endometriosis in order to ensure the early diagnosis and treatment of the condition. This way, the incidence of other conditions and complications associated with endometriosis that develop when it is left untreated can be decreased. 

For the study that was published in the Journal of Obstetrics and Gynecology, researchers led by Mr. Andrew Kent a gynecologist at Royal Surrey County Hospital in Guildford, U.K., recruited 101 women with endometriosis. The researchers asked the women to fill out a questionnaire that contained 20 items about their psychosocial status, symptoms, and experiences. 

After statistically analyzing the women’s answers, the researchers reached the conclusion that there is a median delay of eight years from symptom onset to endometriosis diagnosis.

“The results of this study highlight a considerable diagnostic delay associated with endometriosis,” they wrote. 

It was already known that there was a delay of seven to nine years worldwide before endometriosis is diagnosed. In order to shorten this delay, as well as to standardize surgical treatments and their outcomes, specialized endometriosis centers were introduced in the U.K. in 2011. However, no assessments have been conducted until now to check whether these centers led to any improvements. 

The present study shows that there have been no improvements in diagnostic delays since these specialized centers have been introduced and highlight the importance of educating clinicians and the public more about this debilitating condition.  

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/31328629