Karen Doniger learned after her hysterectomy two years ago that she had adenomyosis. Today, her two oldest daughters experience a degree of period pain that is greater than normal. And her youngest daughter, 19-year-old Katherine, has suffered the most. She’s been diagnosed with endometriosis and has had three surgeries to treat the disease. The last one included the removal of 53 lesions and an endometrioma.
“I’m just a mom who’s fighting for her daughter,” Doniger said.
This fight has led Doniger to a new opportunity: she is one of four people recently appointed to the EndoFound Board of Directors.
“Trying to advocate for your child when they have this disease—the best way I can describe it is that it’s like you’re screaming into a void,” Doniger said. “I’m going to be a passionate advocate for the foundation and hope that I can help move the ball forward.”
Doniger lives in Greenwich, Connecticut. She earned her Bachelor of Arts degree from Princeton University and her Doctor of Law from Columbia Law School. She said she’s a lawyer by training but also has experience in the nonprofit sector, both as a board member and as a volunteer.
Demonstrating her commitment from the start, she’s already surpassed that minimum.
With her daughter at college and feeling much better today, Doniger has wasted no time getting involved since her appointment just two months ago. For example, she’s met with donors at the Seckin Endometriosis Research Center for Women’s Health at Cold Spring Harbor, and she’s spoken with some of those who do EndoFound’s day-to-day work to understand their roles and to determine how she can assist them in their efforts.
“I’m trying to learn everything the foundation does, and I’m already learning that they do so many things with so few people,” Doniger said. “I want to get to a place where we can figure out where the gaps are and help fill those gaps. I think there’s a lot of room to grow.”
Drawing on her experience with her daughter, Doniger also knows how much work remains to be done in educating both the public and medical professionals about the disease.
“I think my daughter’s story illustrates what you’re dealing with as a patient trying to navigate this landscape,” she said. “These girls experience a lot of gaslighting from their school nurses, who think they are trying to get out of taking a test. You talk to a pediatrician who doesn’t know what endometriosis is. You talk to a pediatric gynecologist, whose response is to put you on birth control. Katherine diagnosed herself when she was a freshman in high school after reading about a character with the disease in a novel by Sally Rooney called Conversations with Friends. How crazy is that to make your own diagnosis? And even then, she still couldn’t get answers.”
Doniger said she is willing to work as much as necessary to accomplish the foundation’s goals.
“All the people associated with EndoFound have done so much for women with this disease,” she said. “I am very grateful for all of them, and I just hope that I can help.”
