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Naming What Hurts You Most: The Importance of Endometriosis Diagnosis

Endometriosis Diagnosis, excruciating pain, lower back pain

In honor of Endometriosis Awareness Month, Padma Lakshmi and Dr. Tamer Seckin, Co-Founders of the Endometriosis Foundation of America, spoke at a powerful public event, at the 92nd Street Y in NYC, to talk about the disease that has made a profound impact on both of their lives. Padma Lakshmi and Dr. Tamer Seckin created the EFA because they wanted to make a change in the lives of patients. They know all too well how patients suffer in silence with this often invisible disease.

Padma Lakshmi is an accomplished model, actress and author, best known for her role hosting Bravo’s Top Chef.  Padma came to this intimate gathering as an endometriosis patient and advocate. It was incredible to hear her journey to diagnosis and how it is the same story so many other patients share. Padma always had painful periods. But, she thought that it was normal because of her mom, an educated nurse who most likely had endometriosis herself, also had painful periods. She can remember her mom sitting with her heating pad and missing family events because of pain.  Padma, thought it was her lot in life to suffer just like her mom did and that was just how periods were for some people.

Padma was not diagnosed with endometriosis until she was 36 years old. She suffered 23 years of excruciating pain, nausea and headaches. She suffered 23 years of lower back pain and digestive problems. She endured 23 years of missing school and work because of how ill she felt at times. She had 23 years access to the best doctors around the globe, but for 23 years no one could give her an answer as to why she was suffering. For 23 years she felt like she was not in command of her body and knew that something was wrong. She suffered emergency room visits, ambulance rides, and ineffective surgeries.  For years it was endometriosis that was ravaging her organs and yet all that time she had no idea there was one word that summed up all of her suffering.

Eventually, 23 years after the onset of symptoms, Padma was referred to Dr. Seckin, a renowned endometriosis excision surgeon. After hearing Padma’s symptoms and doing an exam, Dr. Seckin gave a reason and a name that summed up all of the sufferings she had endured for so long. Like many other patients before Padma, and after her, Dr. Seckin was the first person to tell her that she had endometriosis. He assured Padma that her excruciating pain, her headaches, her digestive issues, her back pain and her general feeling that her body was working against her, was because of this horrible disease. He gave her hope when he said he could operate on her and through endometriosis excision surgery, she could have a chance at a better life.  And she does have a better life because of Dr. Seckin’s surgical interventions.

One of the most important things that Dr. Seckin did for Padma was put a name to the abusive monster inside of her that was torturing her for all those years.  By naming the disease, Padma was finally able to have some power over it. Instead of floating alone in the atmosphere, in agony, the diagnosis grounded her to a treatment plan and a whole community of women who also suffered from the disease. What seemed like a random breakdown of different aspects of her physical health was actually a singular, destructive disease that was not only reproductive in nature but attacked many of the systems in her body. She was not weak or lazy; she was very, very sick due to advanced endometriosis.

Padma and Dr. Seckin founded the EFA so that women do not have to suffer like Padma did, for 23 years, before getting a diagnosis. The EFA started the ENPOWR Project which educates teens about the disease because early intervention is crucial. They are holding a free patient day on Saturday, April 11th in NYC where they will bring the best and the brightest in the endometriosis medical community to present to patients on how they can manage their disease to improve their quality of life. They also started the ROSE Project which is researching the nature of the disease, trying to figure out the cause of endometriosis and effective treatments.   Knowledge is power and just the ammunition needed to fight endometriosis, on both an individual and societal level.

 

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