Padma Lakshmi, an actress, model, food expert and author, says it’s time we understood this common gynecological condition that is the leading cause of female infertility and debilitating pelvic pain, affecting as many as 176 million women and girls worldwide at a cost of $110 billion.

“It’s not always easy to talk about an issue that’s so personal,” Lakshmi says. She suffered for years, not knowing what was wrong physically and even worried that something was wrong mentally, but she never gave up hope.

“Trust your own judgment, choose your own destiny, you know your body,” she says. “Persevere until you find someone who will really listen and answer your questions.”

Seeking answers

Lakshmi eventually found the answers she was searching for when she met advanced gynecological surgeon Tamer Seckin, M.D., whom she says, “Didn’t just look at me as a person with a certain problem that he had to fix.” Dr. Seckin co-founded the foundation that Lakshmi says gives more to her than she gives it.

 “Through awareness and education, we’re changing the way everyone views this disease,” she says.

Now the doting mother of a four-year old girl, Lakshmi counts her blessings every day, since she was diagnosed with Stage IV — or severe endometriosis — and subsequently underwent five surgeries.

She had sought out a fertility specialist who offered her a maximum 15 percent chance of getting pregnant, even with in vitro fertilization. When she became pregnant naturally, Lakshmi was ecstatic.

“It was an overwhelming moment and I’m always so very thankful,” she says.

Not just a woman’s disease

Endometriosis is a family issue, says Lakshmi, because its effects are not just “female-specific.”

“Trust your own judgment, choose your own destiny, you know your body. Persevere until you find someone who will really listen and answer your questions.”

“When a woman endures chronic pain a week or more every month of her life, she cannot be present for those around her—not for her husband or partner, her children, her siblings or parents and not for her colleagues at work,” she says. “I missed so much school because of pain and didn’t get to do the things a normal teenager or young woman should do like go to the dance, go to soccer practice, or even work.”

For teenage girls, endometriosis clues are sometimes obvious, Lakshmi explains. “A young woman’s attendance record will reveal trouble with her periods. If she keeps missing the same number of days per month you can guess something is wrong.”

And Lakshmi wants men to get involved. “If you think a woman you know could have endometriosis because she has cramps or a backache every month, don’t be afraid to talk to her about it. That to me would be the greatest, most masculine thing a man could do for a woman he loves or cares about.”

Grass roots advocacy

In addition to its March conferences, the Endometriosis Foundation of America presents a fall nurses’ conference, because for teenage girls, the school nurse is the first line of defense, explains Lakshmi.

“If you diagnose endometriosis early enough, a woman’s life can be completely changed,” she says. “There is no known cause, and no cure, but after diagnosis by surgical biopsy, advanced treatments like laparoscopic excision surgeries have dramatically reduced the number of hysterectomies that were once the treatment of choice.”

Lakshmi wants to change lives.  At a past nurses’ conference, two older women waited patiently to talk to her with tears welling up in their eyes. “We just had to come and listen because for so many years, we suffered in silence and were so isolated. People thought we were crazy,” they told her.

That kind of response resonates with Lakshmi. “I’m happy to sing from the rooftops about properly treating endometriosis. If it helps one teenage girl, it’s worth it,” she says.