My family took notice. By some miracle, my uterus waited until summer vacation to turn on its green light and begin to activate, so the days upon days I spent lying on the couch, either at home or at my grandparent's house, were allowed. Unfortunately, it was also perceived as laziness and listlessness, rather than as crippling fatigue. I was told to get up, go do something, given a list of chores to keep me busy...my family just wanted to see their little girl active again. At 12 years old, I spent my summer non-stop rollerblading, riding my bicycle, climbing trees, running around the neighborhood with other kids, wearing a fake nose ring and dreaming of being the mature adult I thought I was. At 13, there were days I could barely peel myself off the couch. I'm sure my family knew something was wrong...they just didn't know what it was. I sure didn't.
Years of sexual education certainly didn't teach me anything about Endometriosis. We were taught about ovulation, fertilization, sexual intercourse, STDs, but nowhere in those many uncomfortable classroom discussions was there a mention of what it feels like when your body isn't functioning the way it should. Endometriosis occurs in 1 in 10 women and girls worldwide, regardless of class, color, or creed. Research suggests that Endometriosis is in our bodies from birth, and activates around the time when a girl first begins to menstruate, deepening and worsening over time. If someone, anyone, had told me that the fatigue, pain, and excessive bleeding were not normal, I could have spoken to my mother or my doctor and perhaps gotten help early. But I didn't.
I developed my first cyst at the age of 20. Seven years after my symptoms first began, I was rushed to the emergency room after collapsing on the bathroom floor next to a trash can of my own vomit, pounding the floor in pain and unable to stand. I thought I was going to die.
The emergency room doctors diagnosed me with an ovarian cyst and kidney stones. I was given a strainer and told to drink plenty of water. Nothing was done about my cyst. "They're normal. Most women get them at some time in their life."
Years later, I found out that cyst had been complex. For those not familiar with the many types of cysts, functional cysts, or simple cysts, are formed each month with ovulation. This small cyst houses the egg that will be released for fertilization. That cyst will become a luteal cyst, a normal part of a woman's cycle and an essential source of progesterone that will nourish the potential embryo, should conception occur. These cysts are normal and essential for a healthy pregnancy. Hemorrhagic cysts typically result from simple cysts, are filled with blood from the vascular tissue within the ovary, and can cause pain. They typically resolve on their own.
Complex cysts, on the other hand, are not a normal part of ovulation. They typically have thicker, irregular walls, suggesting solid tissues, multiple chambers, can grow over time, and may require surgical removal. These cysts may be benign, associated with Endometriosis (endometrioma), dermoid cyst, or malignancy. They typically require monitoring by ultrasound or MRI for changes to help determine the type of cyst, risk factors, and the appropriate treatment. Endometriomas in particular are associated with invasive Endometriosis, suggesting deep disease of stage III and IV, both associated with decreased chances of conceiving naturally.
Following my first cyst, I was not monitored. I returned to college and developed many more cysts, some simple, some hemorrhagic, and some complex. Most ruptured, and I struggled to keep up with my heavy course load while battling nausea, fatigue, and severe pain. What really boils my blood now, knowing what I do about Endometriosis, is that no one, not once, said, "Hey...this isn't actually normal to have this much pain with ovulation. Perhaps there's something more going on here." Instead, I was told this was NORMAL.
It's not. That amount of pain is NEVER normal.
At 22, I landed in the emergency room with another complex cyst. Finally someone said the word Endometriosis. I was given a two page description of Endometriosis and told that surgery was not an option at my age. I was too young. Five years later, I came off of hormonal therapy, frustrated by severe side effects, and developed a 7cm complex ovarian cyst. This time it was treated differently. My gynecologist skirted around the word "cancer," and sent me to a diagnostic ultrasound facility. The radiologist could not rule out cancer either. Surgery was scheduled a week later.
It took a cancer scare 14 years after onset of symptoms to finally get an official laparoscopic diagnosis of Endometriosis.
As I sit in my office, recalling these events, my eyes fill with tears of anger, regret, and disappointment. I have met countless women with stories like mine. My story is not the exception. It is the norm. And it is NOT OK.
Endometriosis is not a benign disease. Left unchecked, it has the potential to cause real damage. 17 years of living with this disease, my body is unrecognizable compared to that happy, joyful, energetic 12 year old girl who longed to be a grown up and have children of her own. I've made my peace with the fact that I will not birth my children, and I am so excited and anxious to adopt. What I can't make peace with is the severe delay in diagnosis that is considered NORMAL. I can't wrap my head around the fact that a disease that can destroy a young woman's fertility and quality of life is left inside her body to wreak havoc. Ovarian endometriomas suggest invasive disease, the type that has potential to decrease her chances of conceiving naturally.
It is essential that we educate girls and young women about what is normal and what is not normal in respect to their periods. In order to empower them to take charge of their health, we need to provide them with information. They need to know that severe pain with periods and with ovulation is not a normal part of being a woman, that nausea, fatigue, and crippling pain are signs of Endometriosis. We also need to teach them that by diagnosing and effectively treating the disease early, they can have a chance to live happy, healthy lives.
Let's not allow the next generation to become invisible sufferers of Endometriosis. Let's change things for the better.