When Connecticut passed a historic bill in 2022 to create a state-wide endometriosis research program, the state became poised to be the hub for endometriosis research and innovation. The bill created a first-of-its kind endometriosis data and biorepository program at UConn Health and required that the University of Connecticut in partnership with Jackson Laboratories begin plans for additional research into endometriosis diagnosis and treatment. State Rep. Jillian Gilchrest formed the Endometriosis Working Group that helped pass the legislation.

Endometriosis is a chronic, inflammatory uterine disease that causes severe pain both in the uterus and throughout the body. It affects 10 percent of women who are of reproductive age, it can take years to diagnose, and treatment can be difficult to access.

Endometriosis is not simply a “menstruation disease”; it is a disease that can affect the whole body.

It occurs when tissue similar to the interior lining of the uterus, or endometrium, mistakenly migrates and implants in areas outside the uterus, primarily in the pelvic region. These implants respond to monthly fluctuations of hormones (estrogen and progesterone) during the menstrual cycle. During this cycle, estrogen can cause this out-of-place tissue to grow, often causing severe pain. These implants are endometriosis.

Endometriosis is associated with immune and hormonal disruptions. As endometriosis grows, it causes inflammation, which can lead to adhesions, scarring, internal bleeding, bowel or urinary dysfunction, constipation, painful intercourse, or infertility. The physical pain can be severe, which can lead to psychological distress. It’s a combination that, in many ways, can have a debilitating effect on an individual’s life.

UConn Health’s Director for Minimally Invasive Gynecological Surgery (MIGS) Dr. Danielle Luciano, in partnership with Elise Courtois, Ph.D., an endometriosis researcher and director of single cell biology at JAX are collecting and researching tissues samples of patients to study and learn more about the condition and possible treatments and are part of the Connecticut Endometriosis Working Group.

During Endometriosis Awareness month, the state’s CT EndoRISE Program, co-directed by Luciano and Courtois, launched a new website. The site is initiative aimed at revolutionizing our understanding and treatment of endometriosis. As the first state-funded multi-institutional biorepository of its kind in the United States, we are dedicated to advancing research, patient advocacy, and clinical collaboration.

The website provides patients, providers and researchers information about the program, ways to get involved in of research and advocacy and learning. Patients are constantly looking for resources and advocacy group and the goal of the website in CT is to put all providers in one place so it makes it easier for patients to find the care they need.

The Minimally Invasive Gynecology Surgery team at UConn Health, designated as a Center of Excellence in Minimally Invasive Gynecology includes Luciano, Dr. Amanda Ulrich and Dr. Alexis Newmark. They are collecting donation tissue samples from patients with and without endometriosis for the research to understand the difference between endometriosis cells and patients without these cells.

“We are trying to understand why these cells grow in 10% of the population but not the other 90%. Once we figure out what is different, we can focus those differences on targeted therapy,” says

Luciano. “Currently we are treating endometriosis with birth control pills that are not designed to treat endometriosis, they are designed to stop you from getting pregnant.”

According to Luciano, “While the research is still in the early stages, we are already seeing some differences in signaling, immune cells, and inflammatory factors, which makes it look more like a systemic inflammatory disease than just a gynecological problem.  This might explain why these women even with few lesions have such significant pain symptoms.”

The MIGS team has seen an increase in patients with the awareness raised, as referrals from doctors who previously did not have an answer to their patients pain now consider that it may be endometriosis.  Luciano has participated in multidisciplinary grand rounds and lectures to community physicians who now consider this may be the answer to their patients issues they could not previously diagnose.

“We look forward to finding the answers and solutions to endometriosis so our patients no longer need to suffer,” says Luciano.