Q&A: A first-ever tissue biorepository for endometriosis and a push to end painful periods
Key takeaways:
- Endometriosis affects one in 10 women but often takes many years to diagnose.
- A new initiative, EndoRISE, will collect tissue samples after endometriosis surgery to improve research and education.
Women with endometriosis wait on average 7 to 10 years to receive an accurate diagnosis, often after seeing multiple specialists while living with debilitating menstrual pain or infertility.
Despite endometriosis affecting approximately one in 10 women, much about the etiology of the condition remains unknown and awareness about the signs and symptoms of endometriosis is only starting grow, according to Elise Courtois, PhD, a senior research scientist at The Jackson Laboratory, and Danielle Luciano, MD, a minimally invasive gynecologic surgeon at UConn Health. Courtois and Luciano, both codirectors of EndoRISE: Endometriosis Research, Innovation, Support and Education, are leading initiatives to help improve research that will allow for better biomarkers, testing, and ultimately a cure. EndoRISE, supported by the state of Connecticut through legislation passed in 2023, is building the first-ever multi-institutional endometriosis biorepository, creating education sessions for school nurses and advocacy training for teens and their families.
Healio spoke with Courtois and Luciano about why delays in endometriosis diagnoses persist, how endometriosis tissue samples can improve research and the importance of discussing painful periods early in adolescence.
Healio: Why does it take so long for women to receive an endometriosis diagnosis?
Luciano: The biggest reason is because the only way to diagnose endometriosis 100% is with surgery. That creates issues with access to care. The other problem is there are many overlapping features of endometriosis. Not everyone presents the same way. Some people present with pain; some with infertility; some with both. There are also issues of comorbid conditions, like irritable bowel syndrome, pelvic floor dysfunction and fibromyalgia. Women may see many different specialists trying to learn what might be wrong. Then, there is the lack of talking about periods in general, although this has improved. I’ll ask women if they have a family history of gynecologic problems and they will say that they don’t know because no one in their family has discussed that. We need to make it OK to talk about painful periods, and to spread awareness that painful periods are not normal.
Courtois: We still rely on surgery and the presence of lesions to diagnose endometriosis, yes. We also still lack a biological understanding of endometriosis. We do not understand the etiology. Is it genetic? Is it the environment? Is it a combination of the two, or something else? That makes it difficult to pinpoint what should be measured or imaged.
Researchers are now starting to look at biomarkers for diagnosing endometriosis in a noninvasive manner; however, there is still nothing validated by the clinical community. We still rely on endometriosis specialists who detect lesions through clinical imaging, though surgery is the gold standard. That is not available to everyone.
Healio: How is the news of possible cuts to NIH grant funding impacting endometriosis research right now?
Courtois: Endometriosis has lacked funding for decades. This is not something new for this field. It impacts one in 10 women, the same as diabetes. Yet, this condition has not been a priority. I do not want to speculate about what is happening at the federal level. I will say that we must change our mindset and invest more in women’s health. Endometriosis also has an economic impact on society, too.
Healio: What is EndoRISE? How did the organization come together?
Luciano: EndoRISE is the “child” of the CT Endometriosis Workgroup, led by Connecticut State Representative Jillian Gilchrest, and formed in 2021. It was a group of patients, physicians and family members of people with endometriosis. We started brainstorming ways that the state of Connecticut could help women with endometriosis. We came up with policy recommendations and then in 2022, we presented this idea of a data and biorepository program along with an education and awareness program to the state. In June 2023, the Connecticut General Assembly passed House Bill 6672, directing UConn Health and Jackson Laboratory to create the endometriosis data and biorepository program to promote research on early detection in adolescents and adults, along with developing therapeutic strategies to improve clinical management of endometriosis.
EndoRISE operates through a partnership between UConn Health and the Jackson Laboratory, focusing on public awareness, clinical education and administration of the endometriosis biorepository.
We set up the EndoRISE website as a resource for patients and providers and advocacy groups to use. For example, if you’re a physical therapist who provides care for endometriosis patients and approached us, we can include you as an endometriosis health care professional on the website.
Healio: How does the multi-institutional endometriosis biorepository work?
Courtois: We do not know how to build a model that we can use in research for endometriosis. There are so many things we need to understand. It is important to get human biospecimens. This is not something usually collected by hospitals. We built a structure where tissues can be collected from patients who undergo surgery to diagnose endometriosis by endometriosis specialists. By doing this, we can better understand how endometriosis presented in the patient and how it manifested. Researchers will have the tissues and also the metadata to allow them to study endometriosis from its origin. The EndoRISE biobank is doing that: Collecting various specimen types, including fluids, cells and endometrium and endometriosis tissues from all the patients that we can in Connecticut. Then, we can distribute these samples to be used by researchers in academic institutions, pharmaceutical and biotech companies, etc. it is important to generate this baseline of endometriosis data.
Healio: One of the many programs EndoRISE offers a school nurse education component. Can you elaborate on the purpose of that program?
Luciano: We have many clinical reasons why we have delayed diagnosis of endometriosis, but it is also important that we catch this disease in adolescence. We thought the best way to do that was to empower school nurses with the knowledge to help these young women.
There are lots of patients that will tell me that they missed school, cheerleading practice, their prom. These are important events. If this extends into the college years, you miss even more opportunities — perhaps things like a summer internship. If we do not catch this early and let these women suffer, not only are we affecting their quality of life, but we are decreasing their potential to do all of the things they could have done if they did not miss out on their education.
School nurses are on the front lines. They are the ones who see these young girls coming in, missing classes because they are dealing with painful periods. They are the ones receiving the notes from parents when their children miss school. It is easy to call a parent about a headache or a virus, but when you do not know what to do for their period, it is more difficult to ask the right questions and follow up. We gave them resources and pamphlets so they can give students information. These nurses can now say, “I noticed you have missed school once a month because of your period. That is not normal. Maybe you should talk to your mom about endometriosis, and here is a pamphlet about it.”
Healio: Have researchers from other states reached out about implementing programs similar to EndoRISE?
Courtois: The model we built in Connecticut is the first program like this in the nation. We have received requests from people in other states who would like to create something similar. Our program is a nice alignment of the stars, of the medical, the research, the legislative and the patient advocacy fields teaming up and putting in efforts to implement all of this. There has been work at the federal level for many years; however, change is more difficult at that level. We are trying to learn what works well at the state level and what we can do to help things work better at the federal level. A lot of this comes from education and public awareness. At EndoRISE, we also screen documentaries and hold panel discussions about endometriosis. The more you talk about it, the more you realize: Endometriosis is common. It affects one in 10 women. Everyone, male or female, knows someone impacted by endometriosis — a daughter, a cousin, an aunt, a colleague. If you don’t talk about it, it does not get addressed. We must push the dialogue and force change to happen.
Reference:
- EndoRISE. Available at www.ctendorise.org. Accessed April 3, 2025.
For more information:
Elise Courtois, PhD, can be reached at elise.courtois@jax.org. Danielle Luciano, MD, can be reached at dluciano@uchc.edu.