As endometriosis bills reach CT state assembly, patients and doctors weigh in
Patients, doctors and a state representative spoke on the future of endometriosis advocacy and action in Connecticut.
Courtesy of Veronika Denner
22-year-old Dianna Garzon ’24 would lose her vision at the start of her menstrual period. The world would black out and return a different color, Garzon said. Last time, everything was blue.
The symptoms started when she was 16. Things felt cloudy during these episodes. She chronically vomited and was unable to walk. Then a high school sophomore, she sought out doctors for help. They gave her Tylenol. Her blood tests were normal, her scans were normal — nothing seemed out of the ordinary, so she left the doctor’s office, unchanged, and the episodes persisted.
Garzon recalled being “shut down a lot” when she visited doctors. From a low-income background, she turned to clinics for patients with low-incomes, where she was repeatedly told to take pain relievers like Tylenol or Midol. They told her “you’ll be fine… like, you’re not gonna die, basically,” Garzon said. Even when she went to the hospital, she was told her pain was just “the menses” and was “normal.”
Then when she was 18, she collapsed in the shower.
“It was the start of my menstrual cycle, and again, I couldn’t see, I started shaking,” Garzon recounted. “It’s just a pain that I can’t necessarily describe to you. It’s just horrible. Like, even looking back, I can’t even imagine the pain myself.”
Her boyfriend drove her to the hospital, where doctors performed scans and ultrasounds. Everything came back normal. They referred Garzon to a gynecologist, who — noting that her pain coincided with her menses — wrote her a prescription for birth control. She still didn’t have a diagnosis.
It takes an average of seven to 10 years to diagnose endometriosis, a condition where tissue that usually lines the uterus grows outside of it. Endometriosis affects one in 10 women worldwide.
When endometrial-like tissue sprouts in irregular places, from the ovaries to the intestines, common symptoms include painful periods, excessive menstrual bleeding, pain during bowel movements and intercourse, chronic fatigue and infertility. These growths can also cause inflammation, leading to scarring and adhesions between organs.
The recently launched endometriosis working group of the Connecticut General Assembly hopes to ease the burden of this disease. Since their first legislative session in September 2021, the group has passed and proposed bills, ranging from establishing a biorepository to training school nurses. Three patients, two doctors and the working group’s chair lawmaker weighed in on key priorities for endometriosis advocacy and action in the state.
Patient stories inspire state policy
State representative Jillian Gilchrest has now heard hundreds of women’s stories of endometriosis, but it all started with one. A female colleague reached out to Gilchrest about her experience being told that her symptoms were “all in her head” and were “normal.” 15 years into these symptoms, the colleague found out that she could not have children due to her endometriosis.
“As a feminist who has worked on women’s health and safety issues for quite a while, I was angry,” Gilchrest said. “I then started doing my own research and realized that endometriosis impacts one in 10 individuals with a uterus and that, as a predominantly women’s disease, is under-researched, underfunded and there’s just a complete lack of knowledge amongst healthcare professionals about what endometriosis is.”
This motivated Gilchrest to form a working group in 2021 to promote awareness of the condition and try to pass policy to improve patients’ experiences.
The working group meets once a month with a composition that ranges from patient advocates to associations like the Connecticut Hospital Association. According to Gilchrest, state agencies such as the Department of Mental Health and Addiction Services also participate because many individuals with endometriosis turn to self-medicating, linking chronic pain to suicide risk. This year, the working group introduced two policies in front of the state legislature’s public health committee.
Training school nurses
On Jan. 19, Gilchrest introduced a bill before the Connecticut General Assembly to require endometriosis training for school nurses. The proposal called for school nurses to be taught about endometriosis, including information on systemic racism, bias and racial and gender-based disparities related to the condition.
The policy would establish a school nurse training program through which nurses would receive continuing education credits. The program was designed by an organization of patient advocates, known as Endo What? According to Gilchrest, the intent behind this legislation is to build awareness of the condition and get individuals into treatment sooner.
“Our hope is that if school nurses can have this knowledge when a young person presents in the nurse’s office because they’re doubling over in pain, or is missing a lot of school because of the pain associated with their period, they might be able to say to them, ‘Hey, you might have endometriosis. You might want to get that checked out,’” Gilchrest said.
Garzon remembered going to her school nurse for menstrual pain, who “wouldn’t know what to do.” She was offered an Advil, ice pack or heating pad or asked if she wanted to call her parents. Garzon found it invalidating for her pain to be treated “as if it were any other thing.” The pain was draining, and would take her out of school for two days each cycle. She learned from these experiences to avoid the school nurse altogether. Instead Garzon would call her parents to take her home.
“So many young girls are just sent home from school because of severe period pain usually, and they’re told that it’s all normal, but they keep missing school, they keep missing out on social life,” Veronika Denner ’24, an endometriosis patient advocate, said. “There’s currently a lack of education, not just among nurses but also of the students.”
Given how common the condition is, Denner believes that if a school nurse knows about diabetes and asthma, then they should also know about endometriosis.
Terri Huynh, a Yale Medicine obstetrician-gynecologist and assistant professor at the Yale School of Medicine, emphasized that endometriosis symptoms tend to present in women starting in their teens or early twenties, with painful periods that could stop them from attending class. In dealing with this pain, their first line of access may therefore be the school nurse, she explained.
Huynh thinks it’s reasonable for school nurses to be educated on endometriosis as a possible source of painful periods and pelvic pain. Rather than nurses managing the condition alone, they could realize when a student’s experience is concerning and recommend them to a gynecologist, hopefully shortening the typical lag in care.
“It’s such a complex disorder that it may be out of their scope,” Huynh said. “But it’d be reasonable for them to have some understanding of maybe ‘this is the source of why you keep coming in all the time to see me for pain around your periods and you should be referred to a gynecologist or provider who’s comfortable with managing endometriosis.’”
Yonghee Cho, a Yale School of Medicine obstetrician-gynecologist and assistant professor, emphasized the variability of the disease’s presentation as a cause for delay too. Often patients may get diagnosed with conditions like irritable bowel syndrome or fibromyalgia, when really they have endometriosis.
Denner echoed this, having previously only heard of endometriosis in the context of periods and reproductive issues. She found endometriosis is commonly misrepresented as a “menstrual disease,” which is not always the case. Her own cyclical symptoms were never the worse during her menses — they primarily struck during ovulation and coincided with gastrointestinal symptoms. Her doctors did not even consider that she could have endometriosis, and instead say she was just “bloated” or perhaps had a stomach ulcer.
“Like most people with endometriosis, I was told that it’s all in my head,” Denner said. “That cyclic pain is just part of being a woman, that my problems are just really trivial, and it’s not really pathological for many years until in December 2021 I had so much pain that I could not get out of bed, some days. I couldn’t eat, some days. I was just absolutely incapacitated.”
To Cho, despite the disease’s prevalence, it remains under-discussed across “all medical education.” Some of her patients may have never heard of endometriosis prior to diagnosis. Others had done their own research and had been suggesting it to past providers for years, but “couldn’t get somebody to listen to [them] about it,” Cho said.
“It is an incredibly painful and crippling disease for some patients, but I don’t think it’s viewed in the same way that you would view other chronic conditions,” Cho said. “I think these women are also stigmatized, when they’re having these really significant episodes of pain and it’s bleeding into other areas of their work.”
Gilchrest has met with the Connecticut School Nurses Association, who she says understands the issue of the lack of endometriosis training. She hopes to partner with the organization in efforts to expand the quantity of continuing education credits nurses are required to have.
Last year, the working group successfully passed a policy to require physicians to receive continuing education on endometriosis. The group also hopes to eventually integrate endometriosis into the statewide sex education curriculum.
Establishing a biorepository
On Jan. 20, Gilchrest introduced a bill to establish an endometriosis data and biorepository program. Biorepositories are collections of biological samples used for research. This proposed program would enable research to promote earlier diagnosis of endometriosis, new treatments for the condition and early access to therapeutic options for patients in Connecticut.
Last year, the working group passed legislation to create a study on how a biorepository program could be created.
“We’re hoping that Connecticut can be a hub for innovation with regards to diagnosis and treatment of endometriosis,” Gilchrest said.
According to Gilchrest, the biorepository would be a partnership between University of Connecticut Health and Jackson Laboratory with the hopes of expanding to other hospitals in the state. They will collect tissue samples from individuals who have endometriosis.
To Dora Koller, a postdoctoral scholar at the Yale School of Medicine, the diversity of the United States makes it an ideal place to start a biorepository. She had previously done research on endometriosis through the UK Biobank, which she found had around 9000 endometriosis patients. However, she noted that the majority of major biobanks with endometriosis patients are based in Europe. This means most samples come from people of European ancestry, leading to inequality across other ancestry groups, she explained.
“I think the US is the perfect country to actually collect samples from different ethnicities,” Koller said. “Because if you think about Europe, it’s getting more and more diverse, but many countries are quite white only … We really need to make an effort to also make this inclusive.”
Koller had researched the psychiatric comorbidities of endometriosis. She noted that funding for endometriosis is “really, really low,” despite its high prevalence among women. She did not receive funding to do this study — it was a side project. To her, the most important policy would hold government leaders accountable for opening discussion of endometriosis.
“Many times they call these diseases invisible, [but] they are not invisible, we make them invisible,” Koller said. “Because they make us feel uncomfortable …This is an epidemic, and it has to be talked about. If we talk about it more, if we advocate for it more, more money will be available for this research.”
She noted that the same situation happened with breast cancer, which was “also invisible.” But when people started to advocate for it, money and awareness increased.
Koller herself has endometriosis, and faced a diagnostic delay of 15 years before finally receiving surgery.
According to Cho, the gold standard — and only definitive option — for diagnosing endometriosis is laparoscopic surgery, which entails removing and pathologically diagnosing lesions of tissue from the abdomen and pelvis. Understanding the biology of the disease could enable better and earlier diagnoses, especially given the disease’s heterogenous presentation. Gilchrest hopes research using the biorepository could inform new diagnostic tools.
Yet even with a diagnosis, there remains no cure. Huynh described the disease as a chronic pelvic pain disorder. Treatment options for the disease all revolve around managing pain.
“Regardless of medicines and surgeries and other interventions out there to treat the symptoms of endometriosis, it is not a curable disorder,” Huynh said. The array of treatment options is for symptom management, in terms of achieving whatever quality of life, whatever pain goal the patient may have.”
Koller endured 15 years of symptoms and a series of contraceptives and pain medication before having to receive major surgery to remove the severe endometriosis lesions that spread to her intestines. Denner revealed that she had to go on a 10-month medical leave from Yale due to excruciating pain, after birth control failed to alleviate her symptoms. Garzon remains on birth control, but despises the side effects and hopes to get surgery after graduation.
Gilchrest hopes Connecticut can be at the forefront of developing and implementing endometriosis treatments — upping the state’s available expertise on the issue. According to Gilchrest, the biggest challenge would be getting the funding for this policy, but she does not think it is “insurmountable.”
The story continues
Last October, Garzon received a call from her gynecologist that she most likely had endometriosis. It was “very emotional,” she recalled.
“I was scared because again, I’m low income — I don’t have many resources to go off and get the best surgeon in New York City or California to fix me,” Garzon said. “And it was also really scary because I want to have all the kids like I want to have a big family …so to see that that could potentially be affected and I could maybe never have kids.”
Huynh noted that many of her patients are on Medicare or Medicaid, which makes it hard for them to get treated for infertility. She hopes the working group pushes to expand coverage to infertility treatments. Gilchrest’s goal is to have endometriosis patients explicitly referenced in a state law that covers infertility treatment for cancer patients.
Gilchrest is also working with the Connecticut Hospital Association to figure out the insurance coding for endometriosis treatment. Currently there is only one code for endometriosis treatment, meaning doctors would only get paid for ablation surgery — where the endometriosis is burned off with a high chance of regrowth — and not excision surgery — where the endometriosis is excised with a lower risk of recurrence. Patients may have to go out of network to find a doctor willing to do excision surgery. Some doctors will not accept patients’ insurance because they cannot afford to be paid “so little” to do the excision, Gilchrest said.
Denner said she is “still in a lot of financial difficulty” from having endometriosis, especially as a first-generation, low-income student. Without insurance, she had to take out a loan to pay $5,000 dollars for her first surgery — and will need another surgery soon for remaining endometriosis on her diaphragm.
Garzon herself had a job in high school. It was the only way she could flush out $400 to $500 dollars each visit to the gynecologist every four weeks. Koller noted that not everyone has the “luxury” of being able to deal with endometriosis symptoms, let alone reach a diagnosis.
“I experienced menstrual poverty myself,” Koller said. “I didn’t have money to buy tampons, and I had extremely heavy flow because I have endometriosis.”
The working group has seven priorities listed in total, from menstrual equity to access to medical care. Though the other proposals will take time to build for future years, Gilchrest believes the two current policies have momentum behind them, and are “ripe” to pass.
“Many of the women do finally feel heard,” Gilchrest said. “But it’s also just so sad that so many women have experienced a life of being denied care and made to feel like they’re crazy…a lot of my colleagues who didn’t know what the disease was [have shared] that they themselves maybe had experienced or were experiencing endometriosis or their wives or their children. It does seem like a disease that most people know someone it’s touched.”
The endometriosis working group’s next meeting is on Mar. 13 on Zoom.