Endometriosis Awareness: The Hill Day

In order to raise awareness about endometriosis, the Endometriosis Foundation of America (EndoFound) recently hosted a Virtual UpEndo Citizen Advocacy Coalition Briefing with former Congresswoman Abby Finkenauer. As part of the UpEndo Congressional Briefing, EndoFound organized the Virtual Hill Day conference with co-founder Padma Lakshmi, ambassadors Corinne Foxx, Alaia Baldwin, and Diana Falzone.

The Hill Day conference also brought together Dr. Katherine Burns, an associate professor at the University of Cincinnati College of Medicine, Dr. Peter Gregerson and Dr. Christine Metz, professors at the Feinstein Institutes for Medical Research, Dr. Dan Martin, the Scientific and Medical Director of EndoFound, Melissa Boudreau and Latia Lee from the EndoFound Patient Advisory Committee, and several lawmakers.

Importance of endometriosis awareness and early diagnosis

The session started with Dr. Dan Martin introducing endometriosis and how it causes pain. Then, he said that although endometriosis is not life-threatening, severe forms of the disease can cause collapsed lungs and bowel obstruction. The disease can even lead to depression and suicidal tendencies, he said.

Diagnosis can take 6 to 10 years or longer from the onset of symptoms. According to Dr. Martin, factors that complicate diagnosis and treatment include normalization of pain, physicians assuming patients are pill-seeking, the overlap of symptoms with those of other diseases, and the lack of non-invasive means of confirming the diagnosis. The lack of physician focus and awareness about the disease further compounds the problem, according to Dr. Martin

Endometriosis research funding

Drs. Peter Gregerson and Christine Metz highlighted how endometriosis can affect women of all age groups. They explained how research into the disease is woefully underfunded leaving large gaps in the availability of effective and tolerable treatments.

Dr. Gregerson said that they have been studying menstrual blood and menstrual effluents, which show significant differences between those affected by endometriosis and healthy controls. He said that these differences can be diagnostic tools to confirm endometriosis non-invasively. This can help avoid diagnostic delays and having to undergo surgery he said.

Dr. Katherine Burns then urged Drs. Gregerson and Metz to push Congress to pay attention to the calls for endometriosis and women’s health research.

Dr. Gregerson said that it is now possible to study cells with new technologies that provide insights at the genetic level. These technologies can tell us what is going on in the inflammatory tissues of endometriosis similar to cancer research. Dr. Burns said that this approach can be taken to the personalized level.

However, Dr. Metz once again stressed that there are several investigators capable of doing such work and the needed technology platforms are available. However, it is the lack of funding that is impeding research.

Personal testimonials in dealing with endometriosis

Corinne Foxx recollected how she found it to be incredibly difficult to get a confirmed diagnosis. She said she had to spend nearly $18,000 for surgery out of pocket because she had no insurance.

Melissa Boudreau said that many people on the street have never heard about endometriosis. There needs to be a general awareness about this disease and how it impacts everyone and their supporters. She also recollected how she had to suffer from the disease as she could not find any surgeon capable of treating her in Michigan.

Latia noted how women’s health, in general, lacks priority in research and funding. She attributed her 23-year delay in getting an endometriosis diagnosis to a lack of education. Latia felt that if she had known about the disease as an adolescent, she could have identified the symptoms early. She then could have shared them with her friends and family, who also might be suffering from endometriosis.

Diana and Latia said that endometriosis does not just affect the pelvic region but that it can impact vital organs. Latia had lung collapses coinciding with her cycles. After a bit of doing some research online, Latia understood that she had a catamenial pneumothorax. She said that it is not right to have to wait for 23 years to understand about endometriosis and suffer lung collapses. Medical schools should focus more on endometriosis and give adolescents the resources to help identify the disease, she said.

Raising awareness in Congress

Melissa said that she would like Congress to understand how serious the disease is. She implored Congress for funding, awareness, and education so that other women will not have to suffer.

Latia said that she would like Congress to understand that endometriosis could have killed Melissa or herself. The disease also affects fertility, which can place additional financial burdens on women she said. Funding, research, and awareness are absolutely necessary, she added.

Corinne reiterated that she wants Congress to know that endometriosis is not a rare disease and that it affects 1 in 10 women of reproductive age. The number can be potentially more given that many women still do not get a confirmed diagnosis and live with pain throughout their lives. She said she feels that women need to get medical coverage and early education. They deserve to be heard when they walk into the doctor’s office, she said. Congress has the power to do all of these.

Need for endometriosis appropriations in FY23

EndoFound co-founder Padma Lakshmi thanked everyone including members of Congress and their staff for supporting the FY22 appropriations bills that included prioritizing endometriosis research. Padma recollected how she started the journey of EndoFound in 2009 together with Dr. Tamer Seckin. She touched upon how endometriosis can be an extremely debilitating disease for women.

She emphasized how it results in losses of $21 billion in lost revenue, wages, and medical expenses. Much more funding is therefore necessary with the help of institutions like the NIH, DoD, and Veterans Affairs.

Padma finally thanked bipartisan members of the caucus, particularly reps Nikema Williams, Jennifer Gonzalez Colon, and caucus members representative David Scott and Kathleen Weiss for giving their support and urged Congress to increase funding and appropriations for FY23.

Congresswoman Nikema Williams’s efforts for endometriosis awareness

Congresswoman Nikema Williams from the Georgia 5th Congressional District touched upon how important it is to raise awareness about endometriosis. Being an endo patient herself, Ms. Williams recollected her debilitating experiences with the disease and how it impacted her personal, professional, and social life.

One of Ms. Williams’s priorities was to get the endometriosis caucus relaunched after it had been disbanded following a former rep’s exit from Congress. She has had endometriosis since she was 14 and didn’t want others to experience the same debilitating pain.

Ms. Williams is now a mother to a six-year-old boy. But when she was a teenager, she was advised that a hysterectomy was the only way to rid herself of the pain. Her mother, however, felt that wasn’t a good idea and now, Ms. Williams wants to let people know that there are other viable treatment options as well for endometriosis and that funding plays a huge role in making that a reality.

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