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 Vicodin 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.
Dr. Aaron Styer, a Harvard reproductive endocrinologist who specializes in endometriosis research and treatment, says patients whose pelvic pain is not responding to over-the-counter pain medications and whose quality of life is impacted (intercourse has become painful or many days of work or school are missed) should not assume that they are simply dealing with regular menstrual cramps or PMS. Doctors can use vaginal ultrasound and a physical exam to narrow down which women with pelvic pain are most likely to have it, although the diagnosis isn't considered confirmed until suspect tissue has been surgically excised and biopsied.
Depending on the woman's symptoms and age, some doctors initially treat the condition with a range of pain medications and hormone suppressants. GnRH agonists, the hormone suppressants commonly prescribed, effectively shrinks the tissue, reduces pain and stops menstrual bleeding by shutting off ovarian production of estrogen and creating a drug-induced and temporary menopause. The downside is that many women end up exchanging one set of miserable symptoms for another, as they are plunged into a sudden (and temporary) menopause. Common side effects include hot flashes, vaginal dryness, sleeplessness, headaches and loss of bone density. Styer says there is also very little known about this treatment's long-term safety, particularly for younger women who still want to start families. (Endometriosis stops being a problem once menopause is reached and a woman's periods stop.)
The other problem with drug treatment, adds Dr. Harry Reich, one of the pioneers of laparoscopic surgery who recently retired after a long practice based in both Manhattan and Pennsylvania, "is that it has never cured anyone." He said that while attempts to subdue the growth of these cells with lasers and other forms of electrical surgery have largely proved disappointing, laparoscopic excision done by a skilled and experienced surgeon, can often prevent the condition from returning. Seckin added that these clean-up surgeries can sometimes help women whose infertility is related to endometriosis get pregnant without in vitro fertilization. "Ten years ago, endometriosis surgeries were looked at as a gimmick," he says. "But now we're getting respect and attention."
But that doesn't mean surgery is without downsides too. Styer says there are relatively few surgeons around the country who specialize in this procedure, and Reich suggests many insurance companies still don't have a diagnosis code for the surgery and may balk at paying. "But women who have not gotten relief by other methods and are really persistent can sometimes get them to cover the surgery," Reich said.
In the meantime, research continues. Studies indicates that up to 80-90 percent of all women eventually have some of this tissue displaced in their pelvic region, Styer says, but only a minority experience problematic proliferation. "We still need to understand what it is about specific patients that allows this tissue to form in the pelvis, to recruit a blood supply and maintain itself over years," he said. While this area of gynecologic medicine has traditionally been underfunded, he says it's getting more attention now, and some of the new stimulus money is being spent on it.Lakshmi says she hopes to tour college campuses for the foundation and encourage women in pain to seek help. "I want to educate other women so they don't have to go through what I went through," she says. "If we could find this earlier, more women could have more productive lives. If you're having bad cramps all the time, you need to go and get this checked out."
There aren’t enough stars for Seckin Endometriosis. They deserve 100/ 5. I want to make sure every woman right now who is looking for help, who is looking for a doctor and is scared and confused knows this is where you need to be. It doesn’t matter if you have to come from the other side of the United States or from the other side of the world, I can guarantee it will be worth it. Every member of their…
I’ve seen many obgyns over the years explaining my monthly symptoms during my period...but eventually it became a daily struggle with these pain. It feels like a poke here and there near my right pelvic region. I was given birth control pills for the past ten years but honestly, it didn’t help at all. I was in bed whenever I had my period. I was previously sent to GI doctors for possible appendicitis but it was ruled out from imagings…
Dr.Seckin is so much more than a surgeon. His passion for helping endometriosis sufferers and determination to improve the quality of life in all of his patients is undeniable. I remember when my gynecologist first told me I needed a laparoscopy. Her exact words were "I can do the surgery, but if you were MY daughter- I'd send you to him." From the first day I met him he took the time to explain endometriosis to me since I knew…
I was there for hysterectomy but then I found out that I also had endometriosis.My both surgeries went excellent and I feel great!.I am so thankful to Dr.Seckin and all his team for making my journey smooth!
I am a physician who suffered from deep infiltrative endometriosis. I needed laparoscopic surgery, so I went to see my former gynaecologist and he performed the procedure (a surgery which he supposedly does hundreds of times a year) last November. I had severe pain again when I had my period in January and was advised to go on taking a low hormone dose anticoncipient pill. My symptoms came back quickly and got worse in a few months’ time. I went…
After years of excessively painful periods, a serious loss of quality of life, and a series of uninformed and uninterested doctors, Dr. Seckin and Dr. Goldstein turned my life around. I was told I woke up from my surgery almost a year ago with a smile on my face, and I haven't stopped since. Before I heard of Dr. Seckin, I was experiencing almost daily terrible pain to the point where I had difficulty walking, inability to eat, inexplicable weight…
Dr Seckin and his team gave me back my life! Tomorrow will be 1 month since my surgery and I feel great. Dr. Seckin, Dr Liu, and Dr Goldstein are not only beyond words talented and amazing Doctors, but they are also genuinely wonderful and caring people. I cannot say enough great things about Holly, Asiye and Kim as well. They were all caring, kind, patient, and took the time to listen to me and explain anything I needed to…