Padma Lakshmi, author, model and co-host of Bravo's series "Top Chef," opened up to students and scientists at the Massachusetts Institute of Technology on Friday, where she traveled to raise awareness of endometriosis, a disease of the uterus that affects millions of women.
Lakshmi said endometriosis has interfered with her work for decades and threatened her ability to have children.
Now triumphantly pregnant after receiving treatment, Lakshmi was at the MIT Center for Gynepathology Research shortly after it's opening to tell young women not to ignore the pain of endometriosis.
The center is run by MIT professor Linda Griffith, an expert in tissue engineering and winner of a prestigious MacArthur "genius'' grant.
"A lot of women are delaying their motherhood from their 20s to their 30s, or even their 40s," said Lakshmi. "Often you find out that you can't have children until it's too late because you never got it treated. And that is a real tragedy."
Endometriosis occurs when the tissue that makes up the lining of the uterus begins to grow outside of the womb for unknown reasons. These lesions of uterine lining can spread to other organs in the abdomen and respond to a woman's hormone cycles -- causing much pain, cramping, scar tissue, and infertility.
But Lakshmi suspected all along that something was wrong, she just never had the support from her doctors to figure out why she was in so much pain.
"I always wondered why it was that I suffered the worst out of any girl in my class from cramps," said Lakshmi, who added that her own mother suffered from severe period symptoms and tried to prepare her to deal with the pain.
"When I went to a women gynecologist, ironically, she said 'oh it can't be that we all have our periods dear'," said Lakshmi.
Padma Lakshmi Suffered for Years in Pain
As an adult, Lakshmi said her symptoms were so unbearable at times that she would have to arrange her life around her cycles.
She told her assistant to mark the 3 or 4 days each month on the calendar and make no commitments she could not break if the pain got too unbearable.
"Pain is a very solitary, isolating thing. I thought perhaps I was just being a ninny. That's how you feel, you feel thin-skinned, and of course your hormones are out of whack," she said. Because of the isolation, and the initial response from her doctor, Lakshmi continued to suffer through decades in pain.
Eventually, Lakshmi got a proper diagnoses and treatments involving surgery. And now she is pregnant.
"After 35, chances for a natural pregnancy are going down. If you have endometriosis, that process is significantly affected," said Dr. Tamer Seckin, Lakshmi's doctor and co-founder of the Endometriosis Foundation of America.
Seckin explained the scar tissue that forms after endometriosis can twist and pull a woman's reproductive organs out of alignment making it difficult for the egg to reach the fallopian tube. Scar tissue might completely block the tube, or even cover the ovary. Moreover, the uterine lining tissue gives off chemicals that interfere with the sperm reaching the egg.
Add all of that to the natural loss of fertility, and as Lakshmi pointed out, women with endometriosis are at a higher risk of infertility.
"About 30 percent of infertility patients, have it," said Dr. Steven Ory past president of the American Society for Reproductive Medicine and professor at Florida International University in Miami.
Signs of a Hidden Disease
For some women, infertility is the first sign that they have endometriosis, but many experience pain in "painful intercourse, painful periods, or pain in the second half of the menstrual cycle," Ory said.
Even if women go in for an annual exam, endometriosis might be missed. Ory explained doctors frequently use ultrasound and sometimes laparoscopy to diagnose women, which involves inserting a small camera into the abdominal cavity to see lesions of endometriosis.
Hope for More Understanding, Awareness of Endometriosis
Treatments and awareness are slowly improving, but Ory said doctors still don't know why endometriosis forms. One hypothesis is that the problem occurs in fetal development, but the abnormal growth only shows up in puberty when hormones start developing in the uterine lining.
Griffith said others theorize about the fact that a little bit of menstrual flow "refluxes," or backs up, into the fallopian tubes and abdominal cavity each month while a woman is menstruating. An investigator in her lab is studying whether an outside factor such as radiation exposure, somehow makes this lingering uterine lining to grow again in the abdominal cavity.
Mysterious as it is, endometriosis is also very common. An estimated 2 to 10 percent of women in their reproductive years have endometriosis, which could mean 5.5 million women in the U.S. are affected, according to the National Institute of Child Health and Human Development.
Griffith said the goal of the new Center for Gynepathology Research is to discover how endometriosis lesions form, develop treatments and in the process develop new engineering tools that would help a host of other diseases.
Griffith, who also suffers from endometriosis, guesses her center is the first ever to be devoted to endometriosis and gynepathologic research.
"We're not studying gynecology, we're studying things that go wrong with everything below the waist," said Griffith.
Griffith is using her experience in tissue engineering to develop uterine lining using living tissue samples that behave in the lab the same way the lining behaves in a uterus. Once Griffith collects an endometriosis sample from a volunteer and creates a living tissue sample through tissue engineering, she can safely experiment with the uterine lining and never have to experiment on women.
Celebrity Status Helping Science
"We're thrilled that Padma could come," said Griffith. "It is so common that women don't even think about how much they are affected."
Lakshmi agreed. She said she didn't understand what a burden her endometriosis had become until she started receiving treatment.
"For the last 20 years that I could have had so much more done, been so much more productive… never mind the dollars of income lost, just the time and moments with the people I care about," said Lakshmi.
"It's only now that my pain has diminished -- by I'd say 80 percent -- that I can see in hindsight how much pain I was in," she said.