Why Is It Hard to Get Diagnosed with Endometriosis?
1 in 9 women at a reproductive age are diagnosed with endometriosis, a progressive and inflammatory disease that can contribute to infertility, and a host of life-altering and debilitating symptoms such as pain and fatigue. It can take anywhere between 7 to 12 years to be diagnosed with endometriosis.1,2
Endometriosis costs the United States approximately $69.4 billion per year in health expenditure. Data also shows that the average annual health care costs are more than 3 times greater for women who have endometriosis, than women without endometriosis.2
The annual health care costs for women with endometriosis are similar to other chronic diseases such as Crohn’s disease, diabetes, and rheumatoid arthritis, which receive far more resources than endometriosis.2
So given these sobering statistics, why does it take so long to get diagnosed with endometriosis?
Stigma and taboo
One reason for the delay is believed to be the stigma surrounding menstrual issues and the normalization of women’s pain. It’s estimated women wait for around 2.3 years from the onset of symptoms before they seek help. The societal normalization of women’s pain and the taboo around topics such as painful sex, period pain can prevent women and girls from discussing their symptoms with family and health care providers.
Lack of understanding of the disease
One of the reasons why endometriosis is not diagnosed is due to a lack of understanding about the disease. There is also a variation around the symptoms women can experience which can make it difficult to diagnose. An example of this is that chronic pelvic pain is not specific to endometriosis, but can be because a range of other conditions such as, irritable bowel syndrome and pelvic inflammatory disease. The process of ruling out other conditions can then contribute to the delay in diagnosis.2
Health care provider barriers
Unfortunately, women with endometriosis make several visits to their primary health care provider before being referred to a specialist. Nearly three-quarters of women experience a misdiagnosis.2
A survey found that two thirds of general health care practitioners do not feel comfortable making a diagnosis of endometriosis. Additionally, 50% were unable to name three of the main symptoms of endometriosis.2
It has also been reported that doctors may trivialize symptoms, or may feel uncomfortable discussing symptoms with their patients, especially young women.2
Barriers due to diagnostic tools
In addition to the lack of awareness and education surrounding endometriosis, the lack of non-invasive diagnostic tools, such as blood tests or imaging, may also be a contributing factor.2
The only way to diagnose endometriosis is through laparoscopic surgery, which requires expertise in surgery for endometriosis. Additionally, those without insurance coverage for a laparoscopic procedure also may be a barrier.
The bottom line
The contributing reasons as to why it is so difficult to get diagnosed and to find good health care when it comes to endometriosis seems to come down to the following reasons:
- Inadequate primary health care practitioner training
- Lack of research/lack of understanding about what causes the disease
- Invasive diagnostic tools
- The normalization of period pain
- The unwillingness to discuss women’s reproductive health
Given these barriers it is important for women to be their own advocate, to find support and become as informed as possible.
Have you ever experienced any of the following symptoms?