Endometriosis: What Every Woman Should Know

Endometriosis: What Every Woman Should Know

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?


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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…