Opinion: It Took 16 Years Of Pain To Diagnose My Endometriosis. There's A Better Way.
I wish my 17-year-old self knew the signs of endometriosis. I wish my parents did. I wish my school nurse did.
The pain came on like a tidal wave. It felt like a knife stabbing me over and over again in my abdomen; nausea and heavy bleeding followed. I was 17 years old and away from my family during a weeklong seminar. Although surrounded by other young women, I was so scared and embarrassed to talk about what was happening to my body. I did not know what was wrong with me. When I returned home, I confided in my mom. She took me to see a gynecologist, who recommended I start taking a birth control pill.
For years, I chalked up these abnormal episodes that occurred between my period as normal. After all, no one told me anything different. Periods were supposed to be uncomfortable, the pain was a part of it, and we just had to deal with it, right?
Wrong. It was not until I was 33, when I had a severe onset of symptoms, that I found a specialist who finally diagnosed me with endometriosis.
Endometriosis is a disease that occurs when tissue similar to the uterine lining grows outside of the uterus and attaches to other organs like the ovaries, bladder, appendix, lungs, and others, causing a superstorm of disruption to the body. An estimated 1 in 10 women of reproductive age has endometriosis in the United States. An estimated 200 million have it globally. It can take an average of 10 years for it to be diagnosed, and there is no cure.
My journey with endometriosis has been difficult. In addition to learning I had the illness, I was told I was infertile while only in my early thirties. Endometriosis is one of the leading causes of infertility. I have had three major surgeries to remove the endometrial lesions from my organs — each an extensive surgery, over four hours long. The last endometriosis attack, which occurred last week, almost caused renal failure, and I could have lost my kidney.
I underwent four egg retrievals to salvage what remaining eggs I had, costing me tens of thousands of dollars out of pocket. Then I did in vitro fertilization, which resulted in the birth of my son last year. It was my life's greatest blessing, and a one that many with endometriosis and infertility might never know.
While there is no cure, early intervention is key. The sooner young people can recognize the symptoms, the sooner they can get proper treatment, possibly sparing them from multiple surgeries that may or may not be effective, and the possibility of never being able to have a baby.
I wish my 17-year-old self knew the signs of endometriosis. I wish my parents did. I wish my school nurse did. No one in my life knew about this disease then — a disease that impacts so many of us. But now we have the power to educate our young people, and our educators. And a New York state bill, sponsored by Sen. Sue Serino and Assembly Member Linda B. Rosenthal, proposes just that. The bill would require the state to create educational materials concerning menstrual disorders like endometriosis, and make those materials accessible to both school districts and health care practitioners.
“All things menstrual continue to be stigmatized; people still snicker when periods are raised in conversation despite the fact that it is a normal biological function experienced monthly by more than half the population," Rosenthal said. "This bill, and every single piece of period-related legislation I’m working on, is designed to help dismantle the dangerous stigma that results in shame and pain for too many menstruators."
In 2018, Serino met with representatives from the Endometriosis Foundation of America, and learned that my story is all too familiar for countless people here in the United States and around the world.
"When I was growing up, we were told that regular pain and discomfort were a normal part of life for women that should be accepted, and it was not until the meeting in 2018 — at 56 years old — that I learned it's not normal and there are options that are available," she said. "That's when I introduced this legislation. Too many young women are experiencing the devastating side effects of endometriosis, and other menstrual disorders month after month. Too many are missing out on work, school, sports, and everyday activities simply because they have not been made aware of how to effectively address these symptoms."
The bill was passed in the New York State Assembly last week. Now it must pass in the State Senate — you can join us in calling for it by signing a petition here.
The senators should pass this bill. Young people must know the symptoms of endometriosis to properly communicate their menstrual issues with a trusted family member, friend, teacher, or physician. Without knowing the signs of this disease, they could suffer in silence for years. Do not let our children suffer in the dark — let's shed light on this life-altering illness today so that we can change their tomorrow.
More information on endometriosis and its symptoms is available from the Endometriosis Foundation of America at www.endofound.org.