For Your Patients: 10 Key Q&As About the Burden of Endometriosis

1. How many women does endometriosis affect?

Globally, endometriosis is estimated to strike at least 10-11% of individuals designated at birth as female – about 190 million women and girls, according to the World Health Organization – including many in the developing world. The condition affects a higher percentage in certain groups – for instance, those who have chronic unexplained pelvic pain or have difficulty becoming pregnant.

2. How many women in the U.S. are impacted by endometriosis?

An estimated 6.5 million American females suffer from endometriosis. In comparison, only about 700,000 individuals of both sexes suffer from Crohn's disease, a high-profile painful inflammatory condition of the intestines.

3. What age group does endometriosis affect most often?

It is most prevalent in women of reproductive age, roughly age 15 to 44, but has been found in girls as young as 9 years old and can occur or persist in women after menopause.

4. How long does it take for endometriosis to be diagnosed?

Traditionally, it has taken the better part of a decade to get a definitive diagnosis and an average of 4 years before symptoms are even reported by patients. But with growing awareness of the extent of the disease, time to diagnosis is getting shorter.

5. What burden does endometriosis place on the healthcare system?

If you have endometriosis, you already know it is costly. The substantial direct medical costs are driven by doctor and emergency department visits, hospitalizations, diagnostic tests, surgeries, medical treatments, and in some cases, assisted reproduction technology to overcome infertility. Among patients with endometriosis-related chronic pelvic pain, often multiple organ systems are involved that may require several different subspecialty visits. Any delay in getting diagnosed is likely to drive up costs.

A large U.S. review found that in the first 12 months after beginning medical treatment for endometriosis, approximately two-thirds of patients went on to have an endometriosis-related surgical procedure such as laparoscopy, laparotomy, hysterectomy, oophorectomy, or other surgical procedures to remove tissue. Total average direct costs per endometriosis patient during the 12 months following diagnosis was more than three times higher than that for a woman without endometriosis: $16,573 versus $4,733.

And endometriosis can impact other aspects of health: Another study found that the average direct healthcare costs for all causes in endometriosis patients was almost $14,000 per year compared with less than $6,000 for women without endometriosis.

6. What about the broader economic costs of having endometriosis?

The pelvic and general extra-pelvic pain, heavy bleeding, bowel/bladder problems, and anxiety/depression associated with endometriosis result in lost work and school days or impaired productivity and low performance. Many patients will use up all their workplace sick days for endometriosis flare-ups. One study estimated the total average price tag per patient per year to be almost $21,000, including healthcare, lost productivity, and caregiver costs.

7. What about the social and personal toll taken by this condition?

Unlike some chronic diseases that start later in life, endometriosis often begins in adolescence or young adulthood when many formative decisions and life-shaping events occur. Surveys of patients have found that endometriosis significantly worsens overall quality of life, interfering with education, work, sports, and cultural activities, as well as family and social life and sexual function.

8. How does endometriosis affect fertility?

In addition to physical pain and the side effects of corrective surgery and medical treatments, many affected women experience the emotional pain of subfertility and ongoing anxiety about the failure to become pregnant. Although a majority can achieve a successful pregnancy, some may not, and a few end up needing to have a hysterectomy.

9. Is research for endometriosis being funded?

Yes, but funding is much less than for other painful chronic conditions such as Crohn's disease. For example, in 2022, research for Crohn's disease, which affects less than 1% of the population, will receive 65 times more per patient from the National Institutes of Health than endometriosis will. Similarly for diabetes: Research will be allocated 1,500% more per patient than research in endometriosis.

10. Why the gap?

Part of the problem is related to the historical tendency to normalize female pain as an unavoidable aspect of womanhood -- the mistaken belief that it is something that women should be able to manage on their own. Endometriosis advocates are calling for more education and awareness around the disease, however, and are urging that more funding be provided to find early noninvasive diagnostic tests, better pain control, and treatments that do not interfere with conception. In the meantime, advocates are urging more support for those coping with this condition.

Read previous installments in this series:

What Is Endometriosis?

How Will Your Doctor Diagnose Endometriosis?

What to Know About Endometriosis Treatment

Fertility and Pregnancy in Endometriosis

Managing Endometriomas: What to Know

Tips for Talking to Your Doctor About Endometriosis

"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.