Padma Lakshmi’s Personal Cause: The Endometriosis Foundation of America

Padma Lakshmi’s Personal Cause: The Endometriosis Foundation of America

Endometriosis effectively exiled Padma Lakshmi from her life, one week a month, every year, for over 20 years. She’s a college-educated, professional woman living in a major city with access to the best doctors and health insurance. Despite all this, she had never heard of the disease.

“I wanted to change that for other young women,” the Emmy nominated actress, food expert, model, award-winning author, and host on Top Chef, says.

This led her to found the Endometriosis Foundation of America in 2009 with her doctor and savior, Dr. Tamer Seckin. The EFA is a nonprofit organization dedicated to combating endometriosis through advocacy, targeted research, education, and increasing awareness.

Road to Recovery

From early adolescence, Lakshmi knew there was something wrong with her period. She had intense pain, cramping, nausea, headache, fatigue, and excessive blood flow. “I was told by my mother that this was just our lot in life, because I’m sure that’s what she was told by her mother,” she says. “So I expected the pain, saw my mother go through it in fact, month in and month out.”

In her 20s, Lakshmi went on birth control, which didn’t alleviate symptoms. She had a couple of ovarian cysts removed when she was 30, yet her doctor didn’t inform her that she had a chronic condition that needed to be monitored. In 2005, she was rushed to the hospital because of severe abdominal cramps. “It turned out that some endometrial tissue had wrapped itself around my small intestine like a tourniquet,” she recalls. “The gastroenterological surgeon who called this tissue ‘scar tissuesaid that he snipped it off and that I should be fine. Again, I was far from fine, and all of the symptoms I had came raging back with my next period.”

When she started bleeding in the middle of her cycle while at a photo shoot, she called her doctor. She says that he was not only concerned about what was happening, but that for decades, she had been prescribed narcotic pain medication by various gynecologists who didn’t see anything abnormal in her “very abnormal systems.”

In her words, Lakshmi fell through the cracks. But then at 36, she was referred to Dr. Seckin, who Lakshmi says was the first and only person to worry about her health as she did. “He was the first doctor to make me feel like I wasn’t crazy or overdramatic,” she says. “He was actually astonished that I had been walking around with the severity of pain and symptoms I had. The diagnosis and treatment that I received from Dr. Seckin significantly changed my life and ability to be a mother. And yet, in spite of my luck, I am still walking around with one fallopian tube, not two.”

Not only does endometriosis affect a woman’s fertility and physical health, but it’s devastating emotionally, says Lakshmi. “Nobody wants to talk about this stuff,” she says. “It’s an incredibly private subject for most women, and even more so for a teenage girl. 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.”

As Lakshmi says, endometriosis causes all kinds of scars, including many that can’t be seen with a surgeon’s scope. And this is why she started the EFA. “I didn’t want the next generation of women to go through what I went through, to feel betrayed by their own bodies or to feel alone,” she says.

The EFA

The organization – which believes that early detection and diagnosis is the best prevention for endometriosis – has a wealth of information on its web site. It provides disease information and support, along with fact sheets, tool kits, brochures, and posters. The web site also features resources, FAQs, activities and programs.

The EFA has achieved quite a bit since its inception. It helped launch the country’s first research center on gynepathology at MIT. The EFA hosts an annual international medical conference and runs a variety of outreach campaigns, like a killer cramps poster campaign. It holds various events for different stakeholders and supports ROSE (Research Outsmarts Endometriosis), the first project in the U.S. to solely investigate endometrial tissue to the deepest genetic signature.

Goals

As Lakshmi says, the EFA doesn’t view endometriosis as just a women’s health issue, but as a family issue. She lists three major goals:

  • Raise public awareness among all sectors of the general population
  • Foster and encourage research because a cure is possible
  • Change public policy on how the disease is addressed in medical schools and other educational institutions

When asked what is still needed, Dr. Seckin – who has been treating only endometriosis patients for decades — says, “The sad reality today is that the care for women with endometriosis continues to be noticeably deficient. The number of undiagnosed or misdiagnosed cases is staggering.” He calls it a public health crisis, since it affects 1 in 10 women of childbearing age in the U.S., with as many as 176 million women and adolescent girls worldwide, and is one of the three leading causes of infertility.

“Both the pharmaceutical industry and medical technology companies have turned a blind eye to the most helpful technique of the endometriosis removal, called excision surgery (when growths and scar tissue are removed or destroyed with intense heat), which is the gold-standard of treatment,” Dr. Seckin says. “What we need is a cure!”

Dr. Seckin’s vision has always been to start a dialogue. “Everyone needs to know about endometriosis. People need to be talking about this disease in the community, in our schools, on college campuses around the world, in the workplace and at the gym, and in the doctor’s office,” he says. He’s petitioning to add it to the recommended curriculum for health education classes, and says in medical school specialty training, it should be mandatory to teach residents the correct way to treat endometriosis patients. Ultimately, a subspecialty should be created, he says.

The co-founders are deeply committed to their cause. “Personally and spiritually, the EFA has been incredibly rewarding because it gave purpose and meaning for what would have otherwise been completely unnecessary suffering,” says Lakshmi.

Source:

//womenshealth.com/padma-lakshmis-personal-cause-the-endometriosis-foundation-of-america/

 

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Patient Reviews

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  • Angela Aro

    I have struggled with endometriosis and adenomyosis since first starting my period at 13. I was diagnosed at 21 and what followed was a series of unsuccessful surgeries and treatments. My case was very aggressive and involved my urinary tract system and my intestines. After exhausting all of my local doctors I was lucky enough to find Dr. Seckin. We…

  • Emi O

    Seckin and Dr. Goldstein changed my life!

  • Kristin Sands

    Like so many women who have tirelessly sought a correct diagnosis and proper, thorough medical treatment for endometriosis, I found myself 26 years into this unwanted journey without clear answers or help from four previous gynecological doctors and two emergency laparoscopic surgeries. I desperately wanted to avoid the ER again; a CT scan for appendicitis also revealed a likely endometrioma…

  • Wilfredo Reyes

    Dr. Seckin literally gave my wife her life back. I am eternally grateful to him for his generous, determined spirit to see that Melanie finally live free from the prison bonds of Endometriosis.

  • Carla

    I am so grateful to Dr Seckin and Dr. Goldstein. My experience was nothing short of amazing. I was misdiagnosed with the location of my fibroids and have had a history of endometriosis. Dr. Seckin was the one who accurately diagnosed me. Dr Seckin and Dr. Goldstein really care about their patients and it shows. They listened to my concerns,…

  • Melissa Boudreau

    When I think of Dr. Seckin these are the words that come to mind. Gratitude, grateful, life-changing, a heart of gold. I feel compelled to give you a bit of background so you can understand the significance of this surgery for me. I am passionate about Endometriosis because it has affected me most of my life and I have a…

  • Jaclyn Harte

    Dr. Seckin and Dr. Goldstein radically changed my quality of life. They treat their patients with dignity & respect that I've personally never seen in the literally 25+ doctors I've seen for endometriosis. This summer, I had a surgery with Dr. Seckin & Goldstein. It was my first with them, but my 5th endo surgery. I couldn't believe the difference,…

  • Megan Rafael Moreno

    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

  • Nancy Costa

    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…

  • Nicholette Sadé

    Dr. Seckin brought me back to life! I am now 3 weeks into my recovery after my laparoscopy surgery, and I feel like a new and improved woman! Being diagnosed with Endometriosis, then 25yrs old in 2015, and discovering the severity of my case being stage 4, made me devastated. Dr. Seckin's vast knowledge of the disease, sincere empathy, and…