Research Shows Delay In Endometriosis Diagnosis Is Costly
A new study supports what many endo warriors already know: it's important to get a diagnosis early. The medical journal Advances in Therapy published the findings in January. The data shows that health care costs — and symptom pain — are higher the longer it takes someone to get a diagnosis. It's easy to see why. If doctors don't know what's wrong with you, how can they treat your symptoms properly?1
What causes the long delay?
In my experience, it can take doctors a while to find endometriosis for several reasons. One is that the only true way to diagnosis it is through surgery. And those procedures are invasive and come with certain risks. But another complication is that some symptoms may cloud your diagnosis, especially stomach problems. Like me, you may go to several kinds of doctors — gastroenterologists, urologists, chiropractors — before everyone connects the dots.1
This is by no means an exhaustive list. But endo may cause:
- Painful, heavy, or irregular periods
- Pain during or after sex
- Pelvic pain not related to your period
- Abdominal pain
- Digestive problems
- Urinary retention or frequency
- Diarrhea or constipation
- Aches in your back and legs
Some of these symptoms seem like other illnesses, including irritable bowel syndrome (IBS), kidney stones, appendicitis, urinary tract infections. The list goes on. And sometimes you may actually have comorbidities. That's when you have another chronic disease at the same time.1
I started going to doctors for my pain — period and otherwise — as far back as middle school. They told me I had PMS, IBS, clinical depression, and stress-induced headaches (which I now know are migraines). My back pain and nausea? They had no idea. Years later I found out about endo. I was 24.
My story is not rare. And that's one of the reasons why researchers wanted to quantify how a long delay can affect health care costs for people with endometriosis.1
How was the study done?
Eric Surrey from the Colorado Center for Reproductive Medicine led the retrospective study. That means the team analyzed information that already existed in a database. They included the health history of 11,793 adult patients with endometriosis. These patients were diagnosed between January 1, 2004 and July 31, 2016. Everyone included had continuous health care coverage for five years before and one year after their diagnosis.
Patients were divided into three delay categories: short (less than a year), intermediate (1-3 years), or long (3-5 years). There were 37.7% short, 27% intermediate, and 35.3% long.
What did the study find?
Compared to people diagnosed in under a year, patients with intermediate or long delays made more trips to the ER for all kinds of symptoms. They were also admitted to the hospital at a higher rate. Not surprisingly, this meant higher all-cause health care costs. That's treatment for anything, Endo-related or not.
How much higher? Here's the breakdown of total costs. That's what's paid by healthcare plans and patients (like co-pays for doctor visits and surgeries).
- Short: $21, 489
- Intermediate: $30, 030
- Long: $34,460
Not surprisingly, the study showed that patients with long delays paid a higher percentage of their costs for endometriosis-related issues. One major pre-diagnosis cost included ambulance rides. Pharmacy costs were also higher the longer it took for a diagnosis.1
What do the results teach us?
This study shows that an early diagnosis may decrease some health care costs for people with endometriosis. However, researchers admit their results don't capture the true cost of endometriosis. And since racial and ethnic data wasn't included — and patients were on a certain kind of healthcare plan — the results may not apply to the general population.
Hopefully, more research on endo-related costs will be done in the future. Like the authors of this study, I'd like to see more data on how a diagnostic delay can affect quality of life, productivity, and relationships.
Do you know what your endometriosis phenotype is?