Padma Lakshmi is recognized as a model, author, and host of Bravo TV's Top Chef. What most don't know is that Padma suffered such debilitating pain that it interfered with her life and her work for more than 20 years.
That unbearable pain was associated with her monthly menstrual periods. After working with a handful of doctors over those decades to determine the source of the pain, Padma finally got the answers and solutions she sought. She learned she had endometriosis.
Today Padma no longer suffers each month as she used to. Further, she has given birth to a daughter, Krishna, despite her fears, like those of many women who are diagnosed with endometriosis, that she would never be able to get pregnant.
Our patient empowerment interest in Padma's story is her new endeavor as a cofounder of the Endometriosis Foundation of America. The foundation's goal is to help other women get the diagnosis and treatment they need.
I had an opportunity to talk to Padma about her experience, the Endometriosis Foundation of America and its goals.
Question: Tell me about your symptoms, but lack of diagnosis. How did you know you weren’t getting the right answers from the doctors you saw?
Padma: I had very heavy periods and a lot of pain. Backache, cramping, headache, bloating, nausea. I spent days in bed each month, and nothing seemed to relieve my symptoms. I went on the pill (birth control pills) to alleviate the pain, but it might have just suppressed the real problem.
At one point I had surgery for ovarian cysts - I had two on each ovary. But even that didn't relieve my symptoms.
Question: Looking back, do you understand how they missed your diagnosis? Or do you feel as if obvious clues were missed? Was there a smoking gun?
Padma: I don't see myself as a victim. I have been blessed with great physicians who encouraged me to look further.
Question: Your diagnosis was delayed for so many years. Was it necessary to undergo a more difficult treatment regimen because the diagnosis had been delayed?
Padma: Endometriosis, and the symptoms associated with it, come about because pieces of the uterine lining that should be shed during monthly periods, instead migrate through the body and attach themselves to other organs. Because the uterus doesn't shed its lining the way it should, it's like rings on a tree - it builds up over time. That build-up makes it worse. And, of course, that build up means the eventual treatment may be more difficult to accomplish.
But the technology for treatment has improved over time, too. Laparoscopic treatments exist that did not exist years ago when I began suffering the symptoms of endometriosis.
Question: Were you ever fearful of longer-term ramifications?
Padma: I wasn't really worried until I actually got the diagnosis and learned about the problems that can result. Endometriosis is sometimes given as the reason women are infertile.
Question: How has your experience changed the way you approach symptoms and your interface with doctors today?
Padma: I’m very lucky because I do have a great gynecologist and GP. They have always encouraged me to seek more information. I want to give credit where credit is due. My GP just didn't think what was going on was right. Their gender didn’t matter. They both believe in health and well being for patients.
Question: What made you decide to create the Endometriosis Foundation of America?
Padma: My doctor, Tamer Seckin, MD, had been lobbying me to be more vocal. He had seen so many patients who had never heard the word "endometriosis".
There is actually treatment and so many women aren't getting that treatment. It's important for young women to know about it, and that's why I began to speak about it. Together, Dr. Seckin and I co-founded the Foundation.
Women feel so alone. They go to their doctors, but their doctors don't know the latest information. Then, because we look at our doctors as the experts, we think they are right.
Through the Foundation, we can encourage young women to listen to their bodies - our bodies are a wealth of information! We want them to talk to their peers, and to their elders - older women are such great sources of information. Then women can paint their own pictures based on the facts they have learned.
Question: What are your goals for the foundation? And what do you, Padma, hope to get from it personally?
Padma: I find it rewarding – I love the letters I get from young women who feel they now have an explanation for their symptoms – they now feel informed. It's very humbling. We all find it difficult to talk about such an intimate part of our biology. If I can prevent even just a handful of girls from suffering, it will be worth the effort.
Additional Information about Padma Lakshmi’s endometriosis diagnosis, and the Endometriosis Foundation of America
For many years, Padma suffered from her disease while being told her problem was "all in her head." Her mother even told her she would just have to suffer in silence because her monthly pain was her lot in life.
Padma spoke to a group of researchers at MIT in late 2009 at the launch of MIT's Center for Gynopathology, telling them that during her younger years, she had to miss school dances, even failed some of her exams when those pain-filled days made her take to her bed. She was told repeatedly that she was overly sensitive or exaggerating her symptoms. She was even told that her Indian heritage and resulting diet of spicy foods might be causing the pain.
Whether or not you suffer from symptoms during your period, or continue to suffer from any set of symptoms that don't result in a definitive diagnosis, Padma's message is the model for all of us: keep looking. Keep asking questions, and learning, and pursuing the answers you need.
Padma's conclusion as she addressed the group from MIT is a sentiment many can relate to. “I’m very, very moved that somebody finally has been hearing the silent cries and tears of women across the country,” Padma told them.
• Learn more about Padma and the Endometriosis Foundation of America
• Learn some FAQs about endometriosis
• Learn more about endometriosis from the About.com Guide to Women’s Health