"It's clear that we do not have enough research, advocacy or public and provider education," says Rutgers Health expert
The Endometriosis CARE Act, which was introduced in 2022, seeks to deliver $50 million annually to advance research and expand access to treatment for this condition in which tissue similar to the uterine lining grows outside the uterus, often causing pain, heavy periods and potential fertility issues. It affects more than one in 10 reproductive-age women and currently, there is no known cure.
Jessica Opoku-Anane, an associate professor in the Rutgers Robert Wood Johnson Medical School department of obstetrics, gynecology and reproductive sciences who specializes in endometriosis and minimally invasive surgery, discusses the importance of such funding.
What is the significance of the Endometriosis CARE Act?
The Endometriosis Care Act could be one of the best things that has happened for people with endometriosis in a long time. It's clear that we do not have enough research, advocacy or public and provider education on endometriosis. The Endometriosis Care Act is meant to provide funding to support research in women's health.
There are a lot of unknowns when it comes to endometriosis because there hasn't been much funding for research. Which treatment option works in which patients? Which patients are going to develop severe scar tissue, which patients are going to develop infertility? We currently have no way of telling patients which group they're going to fall into or which medications might prevent them from progressing forward.
What are the possible causes for endometriosis?
The cause of endometriosis is not yet clear, largely because we haven't had enough research.
What is clear is that endometriosis is more than its classic definition: That it occurs when tissue, similar to the tissue that lines the inside of the uterus, grows outside the uterus, causing pain. This is not a complete story, because we can see endometriosis in people who do not menstruate, such as in girls prior to initiating menses and in postmenopausal woman.
Endometriosis is a systemic disorder, not just a disorder of a pelvis. Researchers are now looking into this as a dysregulation of hormones and the immune system that could be controlled by genetics and your environment.
Why is endometriosis so misunderstood and misdiagnosed?
On average, patients experience a delay of about 9 years from the onset of symptoms to when they receive a diagnosis of endometriosis.
There are a number of possible reasons, including a normalization of pain in women. Many patients who have endometriosis will say, "I've always had terrible periods" and are told to take ibuprofen to better tolerate the pain. Oftentimes, too, endometriosis runs in families, so they think the pain is normal.
Diagnosis can be especially difficult with adolescents: Since their menstrual cycles are not as regular as adults, the classic symptoms of painful periods or pain once a month at the same time might be missed. They even might be told their symptoms are in their head. In reality, adolescents can have very bad symptoms from endometriosis even at an early age.
To complicate this further, there is a lack of focus on atypical presentations of endometriosis in medical education. There also needs to be a stronger emphasis on educating specialists about endometriosis symptoms, since patients often will first consult clinicians in other specialties - such as a gastroenterologist if they are having bowel symptoms or a urologist if they are having urinary symptoms - before seeing their OBGYN.
On average, patients experience a delay of about 9 years from the onset of symptoms to when they receive a diagnosis of endometriosis. There are a number of possible reasons, including a normalization of pain in women.
Jessica Opoku-Anan
How effective are the current treatments?
There is no cure for endometriosis, but treatments can help symptoms. Endometriosis becomes active in response to estrogen, resulting in inflammation that causes pain. Treatment options largely are based on regulating estrogen. While this treatment option works as well as surgery, there could be side effects such as headaches, weight gain, bloating, mood changes or false menopause.
There are two options for surgical treatments: Excision, which cuts out the endometriosis, or ablation, which burns it. Most of us who specialize in endometriosis care favor excision over ablation because you are pulling it up by the root.
Studies that look beyond five years show a benefit of excision over ablation: We think that is because with excision, we are getting more endometriosis out.
Do people with endometriosis face a higher risk of ovarian cancer?
It's been known that endometriosis is associated with a higher risk of ovarian cancer, in particular patients who have ovarian endometriomas or endometriosis within a cyst within the ovary. Epithelial ovarian cancers that are related to having multiple ovulations are associated with endometriosis.
Discuss the disparities in treatment in adolescents and in underrepresented minorities.
Adolescents with chronic pain frequently miss school all the time, but specialists have ruled out every other disorder. Endometriosis should be one of the first things clinicians think about in chronic pain in this demographic.
The other populations that are underserved are racial and ethnic minorities and lower-income patients due to normalization of pain in these groups. In addition, these patients have an extra burden of not being able to access the best doctors and not being able to see the specialists.
