Abhishek Mahajan (narrator / author)

Patients often present with debilitating pain, irregular bleeding, gastrointestinal symptoms, and infertility.

But diagnosing endometriosis is difficult, the gold standard for it being an invasive and expensive procedure that requires general anesthesia.

Laparoscopic Surgery

While non-invasive imaging, like ultrasound or MRI, can sometimes detect large lesions, many forms of endometriosis, particularly superficial or deep infiltrating types, are not easily visible this way.

As a result, a patient must often endure years of symptoms before someone is willing to escalate their care to diagnostic surgery.

Because of this, it feels deeply likely that many endometriosis cases simply never enter official registries, making the total burden likely massively undercounted in global DALY calculations.

Notably, this is unlike most other diseases, even historically underfunded ones, which typically have clear diagnostic criteria that can be confirmed through inexpensive blood tests, imaging, or clinical presentation alone.

For example, COPD can be easily diagnosed via spirometry.

Just blow into a tube.

Given this, how should we update our dollars?

DALY's ratio for endometriosis?

One way would be to ask the question, how many cases of endometriosis are currently undiagnosed?

A 2014 study answers this question, albeit limited to a specific region in Italy, by actively searching for endometriosis in a sample of 2,000 premenopausal women who had visited a GP for non-gynecological reasons.

Of these, 28 had already been diagnosed with endometriosis.

Using a symptom-based questionnaire and surgical follow-up, the authors discover 37 more cases amongst the 2,000 women.

In other words, 60% roughly of endometriosis cases would not be discovered if there was no active search for them.

In the absolute worst case situation, this should lead us to bump our dallys for endometriosis up by 60%.

Starting with a base dally of 56.61 per 100k people, this leads us to 141.52.

Thus our ratio becomes 29 to 141.52, which is a dismal 0.2, close to that of copped.

Now, again, that is a worst-case calculation, where the density of DALYs in the undiscovered endometriosis patient population is identical to that of patients with the diagnosis.