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Endometriosis: More than Just Painful Cycles

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Chandelis marching with Team Virginia at the Endo march on Capitol Hill. (Photos by Jonathan Hunter)

Chandelis marching with Team Virginia at the Endo march on Capitol Hill. (Photos by Jonathan Hunter)

 

by Shantella Y. Sherman
Special to the NNPA from the Afro-American Newspaper

Cassandra Nivens has experienced painful periods since age 14. To cope with being mostly incapacitated for some time each month, Nivens learned to manage what she believed were normal hormonal shifts, often scheduling time away from school and work around a 28-day cycle. It wasn’t until a routine ultrasound during her first pregnancy that her painful periods were diagnosed as endometriosis.

Defined as a condition where tissue that normally grows inside the uterus grows outside of it, endometriosis impacts 176 million women. Each month as the lining of the uterus sheds and the blood and tissue is released, the same thing happens to the tissue outside the uterus. But with no way for the released tissues to leave the body, inflammation and scar tissue develop. While endometriosis affects White women 33 percent more often, deaths from undiagnosed endometrial cancer is roughly 80 percent higher among African-American women.

“I was relieved to be able to put a name to what felt like some type of torture I endured every month, but was scared and concerned for the health of my baby. My system felt out of whack because of the pregnancy, and I was afraid that after my son was born, my hormones would go into high-gear, and it would be even more painful,” said Nivens, who found some relief in breastfeeding her healthy child.

Once her cycle resumed, Nivens she sought treatment from a naturopath. After two years of progressive yoga (from BandhaKonasana poses to hot yoga), acupuncture, and change in diet, she and her husband were able to welcome a second son.

According to research from the Mayo Clinic, Nivens is among the fortunate able to conceive with endometriosis, as an estimated 30-40 percent of infertile women have endometriosis. Because the disorder can only be definitely diagnosed through visual inspection inside of the pelvis and abdomen (as well as tissue biopsy of the implants), even ultrasounds can only hint at its presence.

General symptoms of endometriosis include: extremely painful or disabling menstrual cramps; pain increasing in severity over time; chronic pelvic pain including lower back and pelvic pain; pain during or after sex; intestinal pain; painful bowel movements; or painful urination during menstrual periods.

As more women become aware that endometriosis is more than just painful periods, the hope among physicians is that more women will note their symptoms and seek professional advice.

The Howard University Department of Obstetrics and Gynecology recently served as local sponsors of the 2015 Worldwide EndoMarch for Endometriosis to raise awareness among African Americans. The second annual march took place at Upper Senate Park in Northwest, March 28, and simultaneously in more than 56 cities worldwide.

Chandelis Duster, a Virginia precinct manager of the EndoMarch diagnosed six years ago with the condition, took part in the march to help raise awareness. “It has been a rough six years during which I have had three surgeries. Initially there was a big cyst on an ovary that needed to be drained and that was how they found endometriosis. No one had ever talked to me about it and as a freshman in college, it was scary to be told I had a disease with no cure,” Duster said.

Following a laparoscopic surgery to remove the tissue, more endometriosis was found. “It’s been tough dealing with the pain constantly and everyday… a heating pad is [my] best friend. It has gotten better since the last surgery, but emotionally, it is a lot to deal with and it is a financial strain,” Duster said.

Among African-American women, endometriosis is one of the most common indications for major gynecological surgery and hysterectomy.

Activism

Rep. Kamlager-Dove Introduces Bill to Protect Women in Custody After Reports Detailing Miscarriages and Neglect

The Pregnant Women in Custody Act would expand safeguards beyond the federal prison system to include women detained by U.S. Immigration and Customs Enforcement, U.S. Customs and Border Protection and the Office of Refugee Resettlement. The proposal follows reports of pregnant women being shackled, denied medical care and suffering miscarriages while in immigration detention.

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By Bo Tefu, California Black Media

Congresswoman Sydney Kamlager-Dove (D-CA-37) on May 7, reintroduced updated legislation aimed at strengthening protections and healthcare standards for pregnant and postpartum women held in federal custody, including in immigration detention facilities.

The Pregnant Women in Custody Act would expand safeguards beyond the federal prison system to include women detained by U.S. Immigration and Customs Enforcement, U.S. Customs and Border Protection and the Office of Refugee Resettlement. The proposal follows reports of pregnant women being shackled, denied medical care and suffering miscarriages while in immigration detention.

The legislation builds on a bipartisan version previously passed by the House during the 117th Congress. The updated bill includes new standards for healthcare access, mental health and substance use treatment, high-risk pregnancy care, family unity protections and increased federal oversight.

“Proper pregnancy care is a human right, regardless of your immigration or incarceration status,” Kamlager-Dove said in a statement. “It’s unacceptable that there are virtually no legal safeguards for pregnant women in federal custody.”

The bill would also limit the use of restraints and restrictive housing for pregnant women, improve data collection on maternal health in custody and require additional staff training and enforcement measures.

Supporters of the measure said the legislation is intended to address long-standing concerns about maternal healthcare and safety in detention settings, particularly for Black women and low-income women who are disproportionately impacted by incarceration and health disparities.

“Pregnant women in custody should never be subjected to dangerous and inhumane treatment that threatens their health, dignity, or the well-being of their babies,” said Patrice Willoughby, chief of policy and legislative affairs for the NAACP and a longtime public policy and government affairs strategist, in a statement.

A 2021 report estimated there are about 58,000 admissions of pregnant women into U.S. jails and prisons each year. Kamlager’s statement also cited a recent investigation by NBC News and Bloomberg Law that identified allegations of severe mistreatment or medical neglect involving at least 54 pregnant women or families in county jails between 2017 and 2024.

Federal policy under the Department of Homeland Security restricts the detention of pregnant, postpartum and nursing immigrants except in extreme cases. However, the agency reported that ICE deported 363 pregnant, postpartum or nursing women between January 2025 and February 2026, including 16 recorded miscarriages during that period.

The bill is cosponsored by several House Democrats and backed by organizations including the NAACP and the Vera Institute of Justice.

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Bay Area

How Is AI Affecting California? The State Wants You to Share Your Story

The program marks the first time the state has opened the platform to all Californians. State officials said the effort is designed to give residents a direct role in discussions about how AI should be regulated and used as the technology rapidly expands across industries.

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By Bo Tefu, California Black Media  

Gov. Gavin Newsom announced May 7 that California is expanding its Engaged California digital democracy initiative statewide, inviting residents to help shape future state policies on artificial intelligence (AI) and its impact on jobs and the economy.

The program marks the first time the state has opened the platform to all Californians. State officials said the effort is designed to give residents a direct role in discussions about how AI should be regulated and used as the technology rapidly expands across industries.

“We’ve got to be clear-eyed about this moment: AI is moving fast, bringing enormous opportunity, but also real risks,” Newsom said in a statement. “Californians deserve a seat at the table as we shape what’s to come.”

The initiative will roll out in two phases. Beginning immediately, Californians can sign up online to share how AI is affecting their work and communities and provide ideas for possible government action. Later this summer, a smaller group reflecting the state’s workforce demographics will participate in live discussions focused on developing policy recommendations.

State officials said the goal is to identify areas of agreement among Californians and provide policymakers with public feedback as the state develops future AI regulations and workforce strategies.

Engaged California is modeled after digital democracy programs used in Taiwan and is intended to encourage structured public discussion rather than social media-style debate. Officials described the effort as a form of “deliberative democracy” aimed at helping residents engage directly in state decision-making.

“The more Californians are engaged in the democratic process, the better able we’ll be to confront the challenges we face together,” said Nick Maduros, California Secretary of Government Operations, in a statement.

The statewide launch builds on two earlier pilot programs. One pilot gathered public input following the Los Angeles firestorms to help guide recovery efforts, while another collected ideas from state employees about improving government operations.

California has positioned itself as a national leader in AI policy and development. Since 2023, the Newsom administration has introduced initiatives focused on responsible AI use in government, cybersecurity protections, workforce training and regulations targeting risks such as deepfakes and AI-generated robocalls.

The state has also partnered with companies in Silicon Valley — including NVIDIA, Google, Adobe, IBM and Microsoft — to expand AI education and workforce training programs across California schools and universities.

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Activism

California Launches Free Diaper Program for Newborns Statewide

The initiative, called Golden State Start, will provide 400 free diapers to every newborn delivered at participating California hospitals beginning this summer. The state is partnering with Baby2Baby, a California-based nonprofit that distributes essential items to children in need nationwide.

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By Bo Tefu, California Black Media

Gov. Gavin Newsom announced Friday that California will launch a first-in-the-nation program providing free diapers to families with newborns, part of a broader effort to lower costs for parents and improve infant health outcomes.

The initiative, called Golden State Start, will provide 400 free diapers to every newborn delivered at participating California hospitals beginning this summer. The state is partnering with Baby2Baby, a California-based nonprofit that distributes essential items to children in need nationwide.

State officials said hospitals participating in the program will give families the diapers when they are discharged after birth, helping parents leave with an immediate supply of newborn essentials.

“Every baby born in California deserves a healthy start in life,” Newsom said in a statement. He said the program is part of California’s broader affordability efforts, which also include free school meals, universal preschool for four-year-olds and expanded after-school programs.

The announcement comes ahead of Mother’s Day and is tied to the administration’s broader CalRx initiative, which aims to reduce costs for essential products and medications. State officials said California is also exploring ways to lower diaper prices by challenging high costs from major brands.

The first year of the program will prioritize hospitals serving large numbers of Medi-Cal patients, with plans to expand to additional hospitals and birthing centers over time. Officials said the effort is intended to reduce financial pressure on low-income families and improve infant and maternal health by ensuring parents have access to clean diapers.

“California families deserve to feel supported during one of life’s more exciting, yet vulnerable transitions,” First Partner Jennifer Siebel Newsom said in a statement. She said the program would allow parents to focus on caring for their newborns instead of worrying about basic supplies.

According to Baby2Baby, one in two families in the United States struggles to afford diapers. The organization has distributed more than half a billion items to children over the past 15 years through partnerships with shelters, hospitals, foster care programs and schools.

State officials said Baby2Baby will oversee diaper purchasing, warehousing and distribution through its existing hospital and community partnerships across California.

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