Living With Endometriosis
Words by Elizabeth Silva
I sat silently hoping Professor Forsythe wouldn’t notice me turning white and clammy as tears streamed down my face. History of Ohio was my least favorite class at CSU, but my discomfort had little to do with boredom. The pain in my lower abdomen sent me reeling into a panic; I would soon black out from the agonizing throbs. As if the vomit on my shoes wasn’t proof enough, Professor Forsythe did notice and sent me to the campus student health center to see if I was okay. “It’s a UTI. The classic college co-ed infection of the urinary tract,” the harried resident doctor announced sure of his diagnosis. He scribbled something illegible on a prescription pad and sent me on my way. It would be many years later that I was diagnosed with stage four abdominal and intestinal endometriosis, and massive uterine fibroids.
While I am not a doctor, I have lived with the nightmare that endometriosis and uterine fibroids cause. Through my experience, research, and work with many gynecologists and gastroenterologists, I am able to share my knowledge and thirty-one year journey with these debilitating diseases.
Endometriosis occurs when tissue that would normally grow inside the uterus instead grows outside of it. It commonly affects the bladder, ureters, intestines, and ovaries, but can be found anywhere in the body. Because it’s uterine tissue, it bleeds monthly, and comes with the other undeniable joys of menstruation: severe cramping, bloating, and commonly, debilitating pain at the site the disease is growing. While endometriosis is rarely cancerous, it grows at cancer-like speed making it difficult to treat. Endo is a leading cause of infertility and affects an estimated five million women across the U.S.
Uterine fibroids are noncancerous growths of the uterus that are formed when a single cell divides repeatedly, eventually creating a tumor. These tumors can range in size from undetectable seedlings to bulky masses that fill the entire abdominal cavity. In my case, I had multiple massive tumors that caused abdominal distention equivalent to the size of a six-month pregnancy. Uterine fibroids can cause other troubling symptoms as well: heavy or uncontrollable bleeding (which can lead to anemia), painful periods, frequent urination, lower back pain, and complications during pregnancy. That is, if the fibroids have not caused infertility. Three out of four women will develop uterine fibroids at some point in their life.
Endometriosis and uterine fibroids are two of the most common gynecologic diseases, both physically and emotionally jarring. Yet, they are rarely talked about. I’ve chosen to share my story so that other women don’t have to suffer in silence. There is help for us.
I was a happy kid, carefree and unbothered by much. My childhood was filled with My Little Pony, Strawberry Shortcake, lots of friends, and a loving family. There wasn’t much I had to worry about. Then when I was in third grade, I got my first period and everything changed. While my friends were green with envy and willing their periods to start, too, my life at eight-years-old became a living nightmare. At the time, I didn’t have the language to describe what was happening to me, but I was miserable. I was often hit with pain so bad I would become nauseous, dizzy, and black out. Pain radiated throughout my back and down my thighs to the point I’d fall to the ground in agony.
On a regular basis, I soaked my clothing and bedding with bright red, uncontrollable bleeding. Sometimes I would miss a week of school at a time. I got to know the school nurse pretty well. My P.E. teacher was certain I was faking symptoms to get out of running laps. The doctors all thought I had IBS or a wild imagination. Food poisoning was another favorite diagnosis by my family practitioner. My parents thought I was just being dramatic. I didn’t understand why my life was nothing like the beautiful, confident women wearing airy, white summer dresses in those Stayfree Maxi commercials. My experience was nothing like theirs. I could never wear anything white, that I knew for sure. By twelve, I accepted what everyone was telling me: killer cramps were just a normal part of life.
As I got older, my symptoms affected my social life. I’d cancel plans last minute, sometimes staying in bed for three days at a time. Acquaintances thought I was just being antisocial, introverted perhaps, or even a hypercondriac. For a few years, it seemed Midol and my heating pad were my most reliable friends. I was defeated.
Years later, when that nifty little thing called the internet was invented, I began to do research on my symptoms and connected to others who had similar stories. I was referred to a doctor who specialized in gynecologic diseases. Once again, my life changed, but this time, for the better.
I underwent a variety of diagnostic tests which included: hysterosonography, magnetic resonance imaging (MRI), ultrasound, hysteroscopy, and hysterosalpingography. Many of these tests are used to show size and location of fibroids, determine reasons for abnormal bleeding, examine the uterine walls and check for openness of the fallopian tubes. In addition to these, I also underwent colonoscopies and a laparoscopic biopsy. The tests conclusively showed abdominal and intestinal endometriosis, and bulky uterine fibroids. I was elated! Finally, I had a diagnosis that could explain away the nightmare I experienced starting from a very young age. It also meant that I could begin to think about treatment options.
The next several years were filled with treatments that I desperately hoped would spare my fertility. My doctor cautioned that both uterine fibroids and endometriosis were leading causes of infertility. As a young twenty-something, I didn’t know for sure that I wanted kids, but I wanted to make that choice for myself. My first treatment was hormones to control symptoms. This proved ineffective. Next, my doctor explained that there was a surgical treatment called a Myomectomy. This is the surgical removal of fibroids from the uterus. It allows the uterus to be left in place and, for some women, makes pregnancy more likely than before. This sounded like a good way forward.
When I was 26, I had my first surgery. The incision is made through the lower abdomen similar to that of a Caesarean section. Multiple fibroids were removed; the largest the size of a grapefruit, the smallest the size of a golf ball, and many in between. Three years later, I had a second Myomectomy to remove new fibroids that had developed. By 31, I had more painful fibroids than ever before. My doctor told me about a fairly new procedure called a Uterine Fibroid Embolization (UFE). This is an outpatient procedure done by a radiologist in a hospital. It blocks blood flow to fibroids in the uterus. Unfortunately, this procedure cannot protect fertility, but I was desperate to finally put my issues to rest and signed on the dotted line.
Becoming infertile hit me suddenly and like a ton of bricks. It became a dark hue that colored the lenses through which I viewed the world. It was sort of like when dusk settles into the evening sky. It was everywhere and inescapable. Sure, I wasn’t even certain I wanted to be a mom, but I didn’t know that I did not want to, either. The next two years brought a lot of tears and grieving the loss of something that never existed, that was never mine in the first place.
But on April 14, 2010, I found out I was two months pregnant. It was a miracle of epic proportions. My husband and I had been blessed. My son was born happy and healthy on October 5, 2010.
It has been five and a half years since then. You often hear stories of women like me who endured years of pain and suffering only to be suddenly “fixed” after they had a child. Unfortunately for me, my medical issues only got worse. In fall 2015, I started bleeding. It didn’t stop for 6 months. I had blood clots the size of golf balls. We tried hormones to control the bleeding. Once again, they proved to be ineffective. It was like my body was trying to kill off my uterus. On February 11, 2016, I had my fourth and final surgery: a full hysterectomy and a bowel resection. They removed the entire uterus and endometriosis that filled my abdominal cavity. They also removed about ten inches of my intestine which had been completely obstructed by endometriosis. The surgeon later told me that I was the worst case he had ever seen. The surgery was supposed to take about two hours, instead it took five.
While parts of my body feel broken, my spirit remains whole and unchanged. My body has given me hell, but it also gave me the love of a beautiful child. And for the first time in 31 years, I’m okay.
If you are suffering with uterine fibroids or endometriosis visit the National Uterine Fibroids Foundation at nuff.org and The Endometriosis Association at endometriosisassn.org for information, updates in research, and support communities, and talk with your doctor.
Editor’s Note: This essay first appeared in Issue 8 of Holl & Lane Magazine. Please click here to read the whole issue.