A Hidden Pain – Endometriosis

Newsweek

April 29, 2009

Pat Wingert and Barbara Kantrowitz

Why a famous beauty like ‘Top Chef’ host Padma Lakshmi is talking about a very unglamorous disease like endometriosis.

For Padma Lakshmi, a former model and host of Bravo’s “Top Chef,” the problem began when she was a teenager.

“I’d always had very bad menstrual cramps, and they got progressively worse over the years,” Lakshmi says. She tried every new pain medication that hit the market, but nothing helped much. Eventually she found herself relying on the powerful painkiller C to get her through the worst days of each month. “I can’t tell you how many jobs I had to cancel because I was completely bedridden,” she says. “Sometimes, I would spend four days in bed.” Her mother had suffered the same symptoms. “I thought this was my lot in life,” Lakshmi says.

It wasn’t until 2006, after she had to leave a photo shoot because the bleeding and pain overwhelmed her, that her physician sent her for a consult to Dr. Tamer Seckin, a New York laparoscopic surgeon who specializes in endometriosis. After taking her medical history and doing a physical exam, Seckin told Lakshmi that he was fairly confident that her problem wasn’t bad cramps but severe endometriosis, a mysterious, painful and destructive condition that affects about 10 percent of all women and may be involved in up to half of all cases of infertility.

Doctors believe endometriosis occurs when bits of the uterus’ lining normally dispelled during menstrual periods, somehow ends up in the abdominal cavity. Doctors think this may occur when some of this tissue inadvertently backs up through the fallopian tubes, while others suspect that some women are born with displaced tissue. In some women, these clumps of tissue are able to take root and establish a blood supply and grow outside the uterus. Like the uterine lining, this tissue is hormone sensitive, so it expands and bleeds with a young woman’s monthly cycle. Over time, lesions, scar tissue or adhesions may also form, causing damage to a woman’s abdominal, pelvic and intestinal areas, as well as high levels of pain, usually around the time of her period (but not always).

Because few women are familiar with its symptoms and there is no simple screen, it often takes 10 years before an accurate diagnosis is made. Even Lakshmi, who went to top-flight doctors in New York and Los Angeles, was 36 years old before she got her diagnosis. In Lakshmi’s case, Seckin suggested laparoscopic surgery to meticulously excise the tissue, a procedure he expected would take about 90 minutes. Instead, it took four hours. “And that was the first of four surgeries,” Lakshmi says.

But as more and more of the tissue was excised, Lakshmi said she started to feel better for the first time in decades. “Now I’m a different person,” she says. “I hid a lot of my pain for a long time because I thought people would think I was exaggerating. I suspect that even some of the people who are nearest to me probably felt that way to some degree.” The better she felt, however, the more frustrated she became that she’d had to wait so long for effective treatment of such a common disorder, says Seckin. “She posed the same question that many of my patients have raised: Why didn’t anyone figure this out about me decades ago? There’s so much misunderstanding and confusion. I encouraged her to talk about it, because if she doesn’t, who will?”

That thought inspired Seckin and Lakshmi to launch the Endometriosis Foundation of America this month. The New York–based group hopes to raise awareness, improve education, press Congress for more research money and lobby medical schools to teach students more about the disorder. They want more women to become familiar with the symptoms, which can include the following: significant pain around the time of menstrual periods that doesn’t dissipate once the flow begins; pain that increases during intercourse, urination and/or during defecation; bloating; infertility; and persistent intestinal, pelvic and abdominal pain and discomfort.

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Author: Leslie Carol Botha

Author, publisher, radio talk show host and internationally recognized expert on women's hormone cycles. Social/political activist on Gardasil the HPV vaccine for adolescent girls. Co-author of "Understanding Your Mood, Mind and Hormone Cycle." Honorary advisory board member for the Foundation for the Study of Cycles and member of the Society for Menstrual Cycle Research.