Personalized Medicine

Celebrities are coming out for this neglected health issue

Celebrities speak out on endometriosis

Supermodel, author and "Top Chef" co-host Padma Lakshmi was diagnosed with endometriosis at the age of 36 — too late, she said, to save her marriage to author Salman Rushdie, and too late to avoid many personal and professional repercussions caused by a disease that often eludes diagnosis.

"If I had been diagnosed at 16 or 26 or even 32, I would have gained valuable time," Lakshmi said. "I would have been able to be more present for my family and friends ... [had] a greater capacity to advance professionally, and I would have also had a greater capacity for intimacy."

Lakshmi has been public about the fact that having endometriosis was a major factor in the dissolution of her marriage to Rushdie in 2007.

She founded the Endometriosis Foundation of America with Dr. Tamer Seckin, a renowned New York City–based gynecologist and endometriosis surgeon, in the hopes of raising money and awareness about the disease.

Physicians, experts and celebrities are speaking out, including actresses Lena Dunham, Susan Sarandon and Whoopi Goldberg, who have shared their personal stories about struggling with endometriosis, a painful disorder that occurs when uterine tissue grows outside the uterus.

"It's one of those things that women don't talk about, and so anything you can do to help them come forward and find out and get diagnosed and get treatment before it turns into something really horrible I think is really important," said Sarandon.

Celebrities who have suffered from endometriosis: Jillian Michaels, Whoopi Golberg, Marilyn Monroe, Pamela Anderson, Dolly Parton, Cyndi Lauper.
Getty Images

This painful disorder causes women to miss, on average, 10 hours of work per week at an overall cost of $119 billion in lost workplace productivity, according to studies.

Lack of funding and research devoted to the disease are among the reasons many women are left to suffer in silence.

The National Institutes of Health has a total 2016 budget of $32.3 billion. Of that, total funding for endometriosis is $11 million this year and projected to be similar in 2017.

To put that into perspective, although endometriosis affects a large percentage of the female population, the disease gets less research funding than adolescent sexual activity and teenage pregnancy.

It gets the same funding as diseases like ataxia-telangiectasia, Charcot-Marie-Tooth Disease, interstitial cystitis, osteogenesis imperfecta and valley fever.

"That's totally totally criminal, you know?" Lakshmi said.

Annual health issues funding ($mil)

Health issue FY 2015 (actual) FY 2016 (est.) FY 2017 (est.)
Adolescent sexual activity$85$88$88
Teenage pregancy$14$15$15

Source: National Institutes of Health

There is no case of endometriosis being diagnosed by an MRI, one of the most comprehensive imaging tests available, and it is one of the only diseases that requires laparoscopic surgery for a definitive diagnosis. It takes on average seven to 10 years to be diagnosed by the medical establishment.

"There were years when my friends just thought I was the girl that got the stomachache all the time and probably equated it with me being neurotic and me just being generally antisocial," Dunham told CNBC at an event called the "Blossom Ball," which honored her decision to go public about her private struggle.

Dunham has written about her harrowing experience of not knowing, for over a decade, what was wrong with her. "While endometriosis affects 1 out of every 10 women, only a fraction of those cases will ever be diagnosed," Dunham said. "Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria."

If I had been diagnosed at 16 or 26 or even 32, I would have gained valuable time. I would have been able to be more present for my family and friends … [had] a greater capacity to advance professionally, and I would have also had a greater capacity for intimacy.
Padma Lakshmi
"Top Chef" co-host

Lakshmi recently traveled to Capitol Hill and met with Democratic Sens. Elizabeth Warren of Massachusetts and Chuck Schumer and Kirsten Gillibrand of New York.

"I just wanted to put it on their radar and make it personal and tell them how it affected me and millions of other young girls all over this country," Lakshmi said.

"Women with endo, when cared for properly, are in fact just as effective and powerful members of society as anybody else," Dunham said.

Dunham has also written that she is lucky to have both good insurance and enough money to go out of pocket if necessary. "I know I'm lucky in the grand health scheme, but I also know that I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with skepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it."

See CNBC's full coverage of the endometriosis crisis.