Connecticut is revolutionizing the diagnosis for this pervasive women's health issue

Connecticut is bringing endometriosis education to the state level. Led by Democratic state Rep. Jillian Gilchrest, Connecticut House Democrats are requesting funding for a new initiative called Endometriosis Data and Biorepository Program (EndoRISE) that will create education and awareness around endometriosis. Ultimately with the hopes of shorting the amount of time it takes to get a diagnosis.^[] The efforts are supported by the Endometriosis Working Group, which Gilchrest formed in 2021.^[]

Understanding EndoRISE

EndoRISE program deals with funding for endometriosis research, education, and awareness. Some of the pillars of the program include:

Funding for and education on fertility preservation. Insurance carriers, including Medicaid, will be required to cover fertility preservation treatments for people with endometriosis or other gynecological conditions that impact their fertility. The working group says that it will work with the State Department of Public Health to provide individuals with information and resources on fertility preservation.

Creating endometriosis training for school nurses. The working group will partner with school nurses to develop recommendations on education and training related to endometriosis, including information on symptoms of the disease, as well as racism, bias, and other factors that can interfere with a diagnosis.

Providing menstrual education for students. The working group will work with the State Department and Local Boards of Education, teachers, and health educators to provide grade-appropriate menstrual education for students in late elementary grades through high school.

Expanding Connecticut’s paid sick days. The working group says that it will work to increase the number of sick days available to Connecticut workers. Studies have found that endometriosis can have a negative impact on people’s work attendance and ability.^[] Endometriosis symptoms can also impair work productivity and contribute to fatigue in and out of the workplace.^[]

Taking women’s pain seriously. The working group will continue conversations around medical education and training on women’s pain and will work with the medical community to ensure that women’s pain is taken seriously. The group also says that it will work to ensure that women are offered appropriate pain medication for certain procedures, including IUD placement and removal.

G. Thomas Ruiz, MD, OB/GYN Lead at MemorialCare Orange Coast Medical Center in Fountain Valley, CA, says that perhaps the most important part of this initiative is its ability to further the flow of education on endometriosis. Dr. Ruiz explains that while qualified OB/GYNs should know how to diagnose and treat endometriosis, the same isn’t always true of general practitioners who might not be trained in this area. He adds that a lack of education, combined with the condition’s range of identifiable symptoms—which can overlap with other types of pain—may be a contributing factor in the delayed diagnosis of endometriosis. 

That’s a long time to wait for a diagnosis, he adds. If the same timeline applied to diagnosing other issues, like a child’s earache, it might be seen as unacceptable, especially given the toll the condition takes on a woman’s body. This toll may include painful symptoms, negative impacts on work performance and quality of life, pain during sexual intercourse, and infertility problems, as shown by studies and patient experiences.

In addition to delays on the ends of providers, insurance companies can be slow to approve some endometriosis drugs, Dr. Ruiz says. This often applies to new drugs—although, in some cases, “new” can mean 2 or 3 years old—that the insurance companies haven’t yet added to their lists or deem too expensive. Dr. Ruiz hopes that increasing awareness around endometriosis can help get patients the diagnosis and medications they need in a timely fashion. 

Ideally, Dr. Ruiz says, Connecticut's actions will be important not just in increasing education and information on endometriosis, but also in organizing it “to create treatment paradigms that are easy for physicians to follow.”