Major Gaps in Endometriosis Diagnosis, Treatment

September 22, 2014

The clinical and scientific realms of endometriosis have significant gaps, highlighted by persistent delays in diagnosis and underestimates of harm.

Significant gaps exist both in the clinical and scientific realms of addressing endometriosis, researchers report.

Key Findings

-More must be done both clinically and scientifically to
better address endometriosis.

- Women with endometriosis commonly describe frustration, anger, and dissatisfaction with their providers.

- Endometriosis is more likely to be diagnosed sooner
if symptoms are presented as fertility-related rather than as menstrual-related.

Writing in the Journal of Family Planning & Reproductive Health Care, researchers spelled out a grim state of affairs in which clinicians are slow to diagnosis endometriosis, women’s lives are significantly burdened, and scientists are failing to study critical aspects of the disease.

After reviewing 11 previous studies examining the effects of endometriosis on women’s lives, the authors from Monash University in Melbourne, Australia, found that delays in diagnosis were persistent and that sexual and personal relationships, work life, and emotional well-being were frequently harmed.

Besides finding a need for comprehensive pain treatment and appropriate guidance about the impact on sex, the authors found that significant scientific evidence gaps exist. Additional research is needed to better understand women’s experiences in endometriosis-associated infertility. Also, there is little scientific evidence aimed at understanding the experiences of adolescent and postmenopausal women, the authors noted.

"Women want their doctors to really listen to their experience and concerns,” said lead author Kate Young in a news release. “They want to explain the true impact of the condition on their lives, rather than simply rank their pain on a scale from one to 10.”

Frustration, anger, and dissatisfaction with providers were common among women facing the disease, Young said.

Delays in diagnosis were the most common theme to emerge. Interestingly, endometriosis was more likely to be diagnosed sooner when women described their symptoms as fertility-related rather than as a menstrual issue, the authors noted.