Chances are you know someone with endometriosis. Endometriosis affects 176 million women from all over the world. It is often a debilitating, painful disease that can cause infertility, digestive disorders, menstrual difficulties, hormonal and mood shifts, painful sex, difficulty in relationships and more. Women suffering from endometriosis regularly miss school, work and family time due to endometriosis.
So what is endometriosis? Here’s the definition from the Endometriosis Foundation of America website:
During monthly menstruation, the female body sheds the endometrium — uterine lining — in the process commonly known as a “period”. In women and girls who have endometriosis, some of these menstrual fluids are retained in the body and abnormally implant in areas outside of the uterus. These implants, or nodules, eventually accumulate on the bladder, bowel, ovaries, and other nearby organs, leading to the development of adhesions, scarring and invasive nodules.
Endometriosis isn’t glamorous or always easy to talk about. Here’s what one sufferer had to say:
Pain did become part of my life in the most subtle and menacing way because when it creeps up on you slowly over the course of your life, contemporaneously as you’re becoming a woman, you kind of associate it as part and parcel of your own development. So in a very sinister way, it fools you into accepting its existence. It pervades your life. If that kind of pain came on suddenly just one day, you would never accept it. You would know that it was wrong. It would be an emergency, the same level of pain. And yet because it slowly grows and is chronic, somehow you just accept it.
This quote comes from Padma Lakshmi, co-founder of EFA, host of Top Chef, mother and endometriosis sufferer. For Padma, the disease affected her life profoundly and included trips to the emergency room, incorrect diagnoses, ineffective surgeries and extreme pain. When she was 36, she met Dr. Tamer Seckin. He diagnosed her endometriosis, performed surgery and her life changed for good. Together Padma and Dr. Seckin have formed the Endometriosis Foundation of America.
EFA just held its 4th Annual Blossom Ball on March 15 with the goal of raising awareness and funds. Celebrities such as Susan Sarandon, Whoopi Goldberg, Tyra Banks and Deborah Harry have supported EFA. The Blossom Ball was held at the NY Public Library. An online charity auction will run until March 29th. “Tapping the Roots for the Next Generation” was the theme of the medical conference sponsored by EFA in conjunction with with the ball and auction.
Dr. Seckin shared his plans and hopes for the medical symposiums:
This year we are doing this as the public health and preventive aspect — Tapping the Roots for the Next Generation. Early detection, early treatment. We can prevent the serious ill effects of the disease. We can prevent hysterectomy, infertility. We prevent loss of quality of life. We keep families together and we bring happiness to the woman. I think these are important. And we’re going to honor one scientist and one surgeon to bring role models to physicians who are looking up.
Education is one part of the foundation’s strategy. EFA has reached out to school nurses to help them recognize the symptoms of endometriosis. Padma spoke about the need to educate the professionals who are often in the position to first recognize when a girl has or might have endometriosis.
We had a very humble, small nurses’ conference in the spring. There were about 60 nurses present. We just alerted them to the signs and symptoms of endometriosis, looking for whether a girl misses school every month for three or four days. If she’s coming in because she’s soiled her pants repeatedly. You do that when you first get your period, but after a while you should know unless you’re having excessive bleeding. All the symptoms. Nurses are really our first line of defense. As you know, teenagers don’t want to go to the gynecologist. I’m a 40-year-old woman and I don’t want to go to the gynecologist. The nurses are very useful. If they have a website to go or a phone number or hotline to call, if they can talk to the girl or her parents or her caregiver or whoever she feels comfortable with, then they can be hugely helpful.
Dr. Seckin talked about how endometriosis is often misdiagnosed and so the need for education and training for doctors and nurses is key. EFA also has invested in research and awareness. For more on these efforts, check out their website.
What struck me in talking with both Padma and Dr. Seckin is the very real, human and personal toll this disease takes on women and their families. Not every woman with endometriosis is going to suffer the excruciating pain that Padma went through, but Dr. Seckin cites a statistic that 50% of women experiencing infertility (after everything else checks out normal in an exam) have endometriosis. Dr. Seckin said, “If I tell you that 50% of all infertile women definitely have endo, you would doubt me. And you would check the facts. You would be surprised to learn the facts.”
That’s one of the goals of EFA, to spread these facts and the facts about effective treatment. Birth control pills are used effectively in some cases to deal with endometriosis. But the gold standard in treatment according to Dr. Seckin is minimally-invasive surgery.
In extreme cases] The surgeries can take seven hours, it can take eleven hours. It takes more than one surgeon. It takes a team. I have a general surgeon urologist, a rectal surgeon. We work together. I can recognize the disease where they may not. They may say it’s normal where I’ll say, “No, it’s endo.” They won’t believe you. They go back to pathology and say, “Wow. We never realized.”
Padma agrees that excision surgery is effective. She’s living proof and so is her daughter. With EFA and events like the Blossom Ball, she’s spreading the word. But her plans are more widespread for reaching the general population, especially young women.
One of the things we did was design a poster, very similar to the choking poster that you see in restaurants. It very simply states the symptoms of endo. It says that you’re not alone, 176 million women all over the world suffer from this. You don’t have to suffer in silence. Go to our website. I want to see that EFA poster in every girls’ room, in every gym, in every bathroom. At Equinox, at Lucille Roberts, at Crunch, every college locker room. Wouldn’t that be amazing?