Almost 40% of women with infertility have endometriosis, according to the American College of Obstetricians and Gynecologists. The College notes endometriosis occurs in one in 10 women of reproductive age, and it is most often diagnosed in women in their 30s and 40s.
Delayed Diagnosis
Because symptoms can be nonspecific and mirror or overlap gastrointestinal and other gynecologic diseases, diagnosis can take years.
“Endometriosis can cause women to have difficulty getting pregnant or have infertility, perhaps more so due to delayed diagnosis,”said Amanda Humiston, MD, FACOG, an OB-GYN with Meritas Health Obstetrics & Gynecology. “Unfortunately, many women may suffer pain without an answer or treatment for several years because endometriosis is so hard to definitively diagnose. There is no lab test, specific ultrasound or exam finding we can use to make the diagnosis. The only way we can say for certain that a woman’s symptoms are caused by endometriosis is by surgical biopsy, and surgery comes with many risks.”
Symptoms
In “Impact of Endometriosis Diagnostic Delays on Healthcare Resource Utilization and Costs,” published in the Jan. 20, 2020, issue of Advances in Therapy, researchers found patients with endometriosis who had longer diagnostic days had more pre-diagnosis endometriosis-related symptoms.
The retrospective database study looked at 11,793 patients aged 18-49 with a diagnosis of endometriosis from Jan. 1, 2004-July 31, 2016. Of the patients, 37.7%, 27% and 35.3% had short, intermediate and long delays to diagnosis, respectively.
According to Dr. Humiston, the classic triad of symptoms for endometriosis is pain with menses, pain with sex, and pain with stools.
“However, women also can experience irregular vaginal bleeding, nonspecific bladder or stool problems like frequency or diarrhea, low back pain or chronic fatigue,” Dr. Humiston said. “These symptoms are often worse with menses, but not always.”
Costs
Investigators also found higher pre-diagnosis healthcare utilization and costs in patients who had delayed diagnosis compared with early diagnosis. Pre-diagnosis all-cause healthcare costs averaged $21,489, $30,030 and $34,460 among patient with a short, intermediate and long delay, respectively.
In the study, the mean number of ambulatory visits increased with longer diagnostic delays from 47.3 visits among patients with a short delay, to 61 visits in patients with an intermediate delay, to 69.1 visits among patients with a long delay. Similarly, the mean number of emergency room visits was significantly lower in patients with a short delay, compared with an intermediate or long delay to diagnosis.
Early Diagnosis
Dr. Humiston encourages physicians to be aware of symptoms and a have higher suspicion of this diagnosis.
“Unfortunately, there is no diet or exercise recommendation for prevention or treatment of endometriosis,” Dr. Humiston said.
“However, in women who don’t want to get pregnant, clinical findings can be enough to start treatment that is low-risk, relatively inexpensive and easily tolerated, such as combination birth control pills,” she added. “In women who continue to have pain or would like to get pregnant, prompt referral to an OB-GYN or reproductive specialist is appropriate. Endometriosis is often a lifelong disease that requires long-term management. Our goal is to do this effectively and safely.”

Amanda Humiston, MD
Dr. Humiston earned her medical degree from the University of Iowa College of Medicine and completed her residency in obstetrics and gynecology at the Medical College of Wisconsin.