My Period Is More Painful Than Cancer
From Cancer to Endometriosis
Fast forward six years. I was in the hospital, yet again, unable to move from extreme nausea and debilitating pain. The agony I felt was torturous — the violent stabbing, the feeling of metal nails scratching my insides, an intense migraine and frequent vomiting.
I felt alone, in the dark. It was as if my body had turned on me, and now my mind was threatening to do the same. I lost my dignity and felt ashamed as everyone watched me writhing in pain: pain, I should add, that was not from the cancer, but from the endometriosis with which I had only recently been diagnosed.
After dealing with cancer, I wasn't prepared to deal with the difficulty of another illness. And yet having two illnesses opened my mind, tremendously, to the vast difference between how one is treated, depending on the diagnosis. With cancer, a patient’s feelings of pain and depression are completely validated and viewed as being a normal and appropriate byproduct of the disease. Those who suffer from cancer are looked upon as strong, warrior-like in their coping abilities.
With cancer, there is no need to justify using pain medication; everyone knows how agonizing and severe cancer is. There are hundreds upon hundreds of support groups for cancer, as well as a plethora of resources and books. When I had cancer, I wore my bald head as a badge of pride, and while people might have stared at me in the streets, the majority of them understood that I had cancer, and they admired my ability to go about my day. Having cancer caused my doctors, nurses, family members, and friends to want to do everything they could to make me happy and comfortable. After all, I was suffering from a well-known disease that was infamous for its symptoms. No one can dispute how horrible cancer is.
I remember being invited to a cancer gala where they called my name with other cancer patients, asking us to rise. We stood there awkwardly, while the whole room clapped for what seemed like forever, congratulating us on our courage and bravery, calling us survivors.
I often find myself wondering if that will ever happen for women with endometriosis. Will anyone ever ask us to stand up? Clap for our bravery? Will we ever be commended for fighting a brave war against this horrible disease? And even if they did, would I want to stand up?
In my heart, I know the answer is no, because unlike cancer, women with endometriosis aren't placed on a pedestal for their bravery.
Instead, women with endometriosis are dragged through the dirt and admonished for being "whine-y" and "weak." We are told to “suck it up” and deal with our “female problems.” Instead of society rewarding us for being proud survivors of a life-threatening disease, we are shunned and forced to be ashamed of our “womanly” illness.
Declaring War on Endometriosis
Don’t get me wrong. I am not saying I would rather have cancer than endometriosis. I wouldn’t wish either disease on my worst enemy. But there is a very strong message that I am trying to convey here: women with endometriosis suffer just as much and just as horribly as anyone else with a chronic illness. We suffer from pelvic pain, cramping, chronic fatigue, and irregular and heavy menstrual bleeding. We have a high risk of infertility and increased risk of developing of ovarian cancer. Endometriosis is not just "bad cramps."
Unfortunately, endometriosis is under-publicized and therefore, highly misunderstood. It is estimated that 176 million women worldwide suffer from endometriosis, and yet most people have never even heard of it. Even those who make a concerted effort to try and understand endometriosis can’t scratch the surface of its misery.
Beyond the need for further awareness, there is also a need for support. Endometriosis can be a very lonely disease. I can tell you from my own experiences. In the summer of 2012, following my 3rd laparoscopy, I hit rock bottom. Despite having just had surgery I was still in excruciating pain. I didn’t know where to turn and had thoughts of giving up.
And then I met Jill Fuersich, a fellow endometriosis warrior.
Meeting Jill was one of the best things that could have happened. After speaking for a while we realized how similar our experiences were, how desperate our need for support. We spoke about how little the outside world knew about endometriosis and how hard it was to fight alone. Shortly after Jill and I met, we met our third co-founder, Jordan Davidson. We spent hours discussing the tremendous lack of support we felt. We wondered what we could do to fix that.
A few months later we launched a support group for women in New York City suffering from endometriosis. We had a great turn-out at our first meeting, and everyone said the same thing: how nice it was to meet someone else who understood their pain. We realized it wasn't enough to just have a group in New York City when there were women suffering throughout the world. And thus was born Endo Warriors.
Now, a little over a year later, Endo Warriors has expanded with support groups in New York, New Jersey, Pennsylvania, Colorado, and soon across the sea in the Netherlands. We've become a recognized name for women with endometriosis. Our inbox is constantly overflowing with questions, comments, and requests from women around the world. To meet the need of all of these women, we started our "Endo Buddy" system, in which women are matched, based on location, with a fellow Endo Warrior. Change doesn't happen in a day, and it doesn't even happen in a year, but by banding together, we are strengthened and better prepared for battle.
Nicole Malachiwas born and raised in Israel, and moved to New York when she was 24. She received her bachelors in clinical psychology, and is now working towards an advanced degree in clinical social work. A survivor by nature, having ten years of remission from Stage 3 lymphoma behind her, Nicole's goal in life is to help those who have experienced trauma in their lives. She has worked as a suicide hotline volunteer, and run therapy groups for those with schizophrenia, anger management, depression and eating disorders. She is also the co-founder of Endo Warriors, a support organization for women with endometriosis. You can follow Nicole on Twitter or connect with Endo Warriors on Facebook and Twitter.
Photo Credit(Top and Bottom): Ashley Woo Photography
Read more stories of struggle, strength, and survival on Everyday Health’s My Health Story column.
Video: 😱 7 EARLY SIGNS OF LUNG CANCER YOU NEED TO PAY ATTENTION
Catfish and Sausage Jambalaya Recipe
How to Make a NoSew Ribbon Headband
How to Choose Your Wedding Party
My Sister, My Frenemy
See the Skin-Baring Dress Ciara Just Wore to the White House
Why Ski Jumpers Fly In A V Shape
How to Change Your Name After Marriage
DIY Oatmeal Oil Buster Facial Mask
How to Flirt With Eye Contact
Flush The Fat Away Detox Salad
Long Curly Hairstyles for Thick Hair
New SARS-Like Virus Claims Two Victims