Dr. Danielle Luciano, associate professor of Obstetrics and Gynecology at UConn Health, said she sees the pain and infertility issues that women experience from endometriosis, a disease that occurs when tissue resembling the uterine lining grows outside the uterus.
But before becoming involved with the Connecticut Endometriosis Working Group, formed by state Rep. Jillian Gilchrest to bring awareness and push forward research, Luciano had not considered the impact the disorder was having on society as a whole.
“I think about how this affects patients’ lives. I don’t always think about the effects on society, when a person misses one day of school or one day of work,” Luciano said. “It helped me to see that it’s a community problem and a societal problem rather than a one-patient-at-a-time problem. I’m focused on making them feel better but I am not thinking about how many people called in sick today because 10 percent of them have endometriosis.”
The legislature’s Public Health Committee voted last week to send a bill establishing an endometriosis clinical data and biorepository program to the House for a vote. Advocates say this initiative will lead to discoveries that can help speed up diagnosis, which currently can take up to seven years from the first symptoms.
The data and sample repository would allow researchers to better understand a disease that is extremely complex, according to Elise Courtois, Ph.D., who is Associate Director of Single Cell Biology at the Jackson Laboratory and an endometriosis researcher.
“It is really important to actually align what we know about patients, what are the clinical symptoms, what are the surgical findings with what the biology is telling us,” Courtois said. “If we have a way to actually get this data and these samples from a maximum of patients that are affected by this disease, we will have enough power to really understand and really push endometriosis research because we will have the fundamental knowledge that we need about how it is affecting patients and how it affects biology and how we can put those together to better understand what the causes endometriosis, how we can solve that and how we can detect it earlier.”
Endometriosis can cause extreme pain during menstruation cycles, pelvic pain, and infertility. It can also present with constipation and diarrhea as well as bladder issues, Luciano said.
“All that chronic pain can also cause depression and anxiety especially if it takes a long time to diagnose,” Luciano said.
Endometriosis affects 1 in 10 people born with a uterus in Connecticut, according to testimony submitted by The Jackson Laboratory. The chronic inflammatory gynecologic condition affects 200 million female-born people worldwide and 6.5 million in the United States. March is Endometriosis Awareness Month.
There is no cure now, as even with a total hysterectomy there is an 8% chance of recurrence, Luciano said.
There is no way to quickly diagnose someone suffering from endometriosis, as there is no blood test or biomarker to look for. Also, the disorder affects women differently, as some patients will have many lesions with almost no symptoms, while others have few lesions and experience excruciating pain when they menstruate.
While lesions will be found on top of the ovaries, some patients will experience them in distant areas in rarer cases, such as the lungs and sometimes the brain, Courtois said. This complexity is why it takes so long to diagnose endometriosis, which means some women suffer years of intense pain, and the frustration of not being believed, she said.
“I think there is a stigma when we talk about periods and diseases related to women’s reproductive health,” Courtois said. “There has been some bias in the funding that was attributed to research. Reproductive women’s health was not considered a priority until very recently.”
Sarah Fox, a North Haven resident who lives with Stage 4 endometriosis, testified before the Public Health Committee this month that she saw countless doctors through her teen years and on through her thirties, as she suffered a variety of symptoms, including stomach pain, bladder issues, debilitating periods, and severe lower back pain. Many of these doctors told her she was being over-dramatic, Fox said.
“These interactions left me feeling depressed and angry at a body that I clearly did not understand,” Fox said. In 2014, Fox underwent a partial hysterectomy and deep tissue excision of endometriosis located on her bowels, bladder, and through her body cavity. “This surgery saved me and today, while I still manage different components of the disease, I can live a full life.”
The Endometriosis Working Group has been meeting since September of last year, with its next meeting scheduled for April 4.
“Within the first month of launching the working group more than 30 women reached out,” Gilcrest said, adding that the group has been helping Connecticut residents find national resources such as Endo Black, Inc., which advocates for African-American women and women of color in the areas of health equity and women’s reproductive health, and the Endometriosis Foundation of America.
The group has made several recommendations. One that is included in HB 5303 is requiring health care providers to receive training and continued education in cultural competency – the effects of systemic racism, explicit and implicit bias, racial disparities, and the experiences of transgender and gender diverse people on patient diagnosis, care and treatment.
Other recommendations call for school nurses to receive the Endo What? School Nurse Training and Toolkit and that the state Department of Education and local school boards include information on common reproductive health concerns in health education.
The working group has already generated more discussion surrounding endometriosis, Luciano said. More patients are being proactive, she said, asking her specifically if they may be having symptoms.
“I’ve had moms that have come to me saying, ‘You know what, my daughter is miserable with her periods, and I don’t think this is normal’,” Luciano said. “People are talking about it, and just talking about it is making a difference. We as women tend to not talk about these things, but not talking leads to a long time to be diagnosed.”