Endometriosis is a disease afflicting up to 10% of women, or hundreds of millions worldwide. It is the underlying cause of approximately 85% of cases of pelvic pain in women, and the cause of approximately half of all cases of female infertility. While that’s bad enough, endometriosis goes further still, accounting for high percentages of cases of gastrointestinal issues, and potentially spreading its impact to vital organs, such as the liver, lungs, and even the brain. The myriad symptoms of endometriosis can lead to permanent disability, agony, and years of life effectively lost.

So why have you heard so little about it? Endometriosis is a disorder that, despite its shocking commonality, can be extremely difficult to properly diagnose, and, because treatment can involve difficult and time-consuming low-reimbursement surgery, is not especially profitable or available. Currently, there are no drugs approved specifically for endometriosis:  hormones are often used, with some effect upon symptoms, but without impacting the underlying condition.

However, the current state of treatment may itself be due to the lack of public awareness, resulting in the low amount of research conducted; the research expenditure from National Institutes of Health (NIH) for endometriosis in 2022 was $16 million, less than an eighth of NIH’s 2021 spending on ovarian cancer, and about a sixteenth of what was spent on prostate cancer that year. As NIH awards funding based on what research is presented for consideration, it appears that there is insufficient research being conducted.

It's time to change that. To that end, we will soon introduce a resolution designating August 2024 as Endometriosis Awareness Month in Pennsylvania, and further requesting that Congress do the same nationally, thereby encouraging research, and also requesting that Congress order a review of Medicare and Medicaid reimbursements to determine whether current surgeries are being covered fairly, and finally requesting that Congress apportion money through the Congressionally Directed Medical Research Program to research on detecting and treating this disease.

This disorder certainly affects somebody you know, though they may not know it yet; because of the lack of awareness, the average patient in America suffers for as much as ten years before receiving a diagnosis, and many take far, far longer, if ever. Please join us in raising awareness of this horrifying, disabling, and all-too-common but under-recognized and understudied disease, and in working to eliminate it.