Invisible disease: Widespread misinformation and lack of research affects the lives of millions of women suffering from endometriosis

I remember lying on the cold, hard tile of the Cascade High School girl’s locker room floor, feeling the crunch of dirt and grit beneath my shoulders.

“Breath into the pain, let your muscles relax,” my mother had told me the first time I experienced these debilitating “menstrual cramps.”

I laid on my back and watched the shuffle and squeak of tennis shoes exit the locker room for gym class. At eye level, the stampede of feet ran in a vibration around my body, in perfect time with the excruciating waves of pain radiating through my core, down my legs, and through my back.

I clutched my stomach, swallowed my moans and tried to remember to breathe deeply. I couldn’t move, and there was no way I was making it to gym class.

Friends would ask if I was okay or if they could help. The other girls glanced down and avoided me.

They'd ask, “Whats wrong with you?”

The reverberating, unavoidable question.

On other days I hid in one of the dark red bathroom stalls on the opposite side of the locker room, avoiding social scrutiny. I twisted handfuls of toilet paper as if transferring my pain through my palms, out of my body and into the torn-up wads. Only the chicken-scratch graffiti witnessed my silent tears.

Silence became the regular echo of my pain. The clench and unclench of clammy hands is still a familiar motion.

I did not understand what was happening to me, or why I was so different from the boisterous girls in the locker room. Why did I experience debilitating pain during those oh-so-special days of the month, when they could just pop a tampon and an Advil and be on with their day?

No one tried to explain it; no one could.

When the time came to try out for basketball, I knew I would end up in a puddle on that locker room floor, rocked by waves of endless pain.

I implored the coach; she sneered at me and my “bad cramps.”

She told me to take a few Advil and suck it up like the rest. To her, my pain was something to be minimized, the normal experience of a teenage girl. I was weak, unable to handle what the other girls could.

But I wasn’t like the other girls.

I’d already taken the maximum dose of over-the-counters and then some. In the mornings before school I choked down cups of bitter, watery-brown cramp-bark tea. Nothing helped.

I gave up on basketball. I walked away, one of the first times in my life I felt defeat; felt the gut-sickening sting of giving up.

I couldn't explain my symptoms except that I was weak, my pain essentially did not matter, and it was not real.

I had nothing to compare it to, no internal measurement protocol for “normal” versus “excruciating.”

I stopped speaking about what I was experiencing. Years went by, and I “dealt” every month. Some periods were worse; some I could classify as “normal.”

If a single doctor I spoke to considered what I told them before dismissing it as, “periods hurt,” maybe I would have been diagnosed with endometriosis at 14, instead of a full 12 years after symptoms started throwing me my monthly pity-party.

I might have received regular ultrasounds to monitor any possible growths or cysts occuring on my ovaries, or hormone therapy to help regulate my pain.

Instead, adults and doctors responded by sending dismissive messages qualifying my pain as normal. I responded with silence and a deepening distrust in my own mind and body.

At 15 years old, who was I to ignore them?

In truth, I was suffering from endometriosis, a misunderstood and misdiagnosed disease that affects one in 10 women in the United States.

A “benign” disease, (meaning it doesn’t kill you, just makes you miserable), it occurs when tissues similar to the endometrial lining of the uterus implant outside the womb. During menstruation the implants cannot drain and instead wreak havoc, forming scar tissue, lesions, and cysts. The tissues can grow like a web, fusing or changing the location of the organs in the pelvic region, including the reproductive organs, colon, bladder, appendix, and rectum.

The invisible disease escapes the notice of CT scans, MRI's, most ultrasounds and physical examinations. A surgical diagnosis is the only clear one.

An article published on endometriosis.org discussed the first research conducted over 10 countries about the effects of endometriosis on workplace productivity in women.

On average, women lose 10 hours per week of work-time. These women suffer not just from the disease but from a lack of viable healthcare options and irreparable damage to what should be the most productive years of their lives.

Faced with insurance nightmares and often out-of-pocket surgery costs, they experience not only productivity loss, but a looming potential to lose their livelihoods.

“Endometriosis affects women during the prime years of their lives, a time when they should be finishing education, starting and maintaining a career, building relationships and perhaps have a family,” said Dr. Stephen Kennedy, head of department and professor of reproductive medicine at the University of Oxford. “For these women to have their productivity affected, their quality of life compromised and their chances for starting a family reduced, is something society can no longer afford to ignore. It is time we see serious investment in preventing this debilitating condition in the next generation of women.”

Yet a dysphoria continues.

I received my first definitive laparoscopic diagnosis at 25. Until then, my mother remained silent about her own experience. She’d been misdiagnosed and undergone two surgeries in which the surgeon discovered and removed the endometriosis. She didn’t realize this had any relevancy towards my own experience of womanhood.

Her lack of disclosure or understanding that I was suffering from the same disease is not a failure on her part as a mother. Our symptoms were different.

Not a single doctor warned my mother that endometriosis had been linked to genetic disposition, or of its prevalence. Their lack of education became her lack of information, and therefore my lack of competent health care.

It wasn’t a failure of coaches or teachers to take notice, or a failure of my family doctor. It is a symptom of a prevalent societal sickness; a failure to address women-specific needs and disease.

Social epidemiologist at George Mason University Jhumka Gupta believes that dismissive societal attitudes such as victim-blaming and stigmatizing women’s public health issues like sexual assault and postpartum depression are influential in the lack of public education regarding endometriosis.

“Endometriosis is virtually absent from public health and social justice advocacy agendas,” said Gupta in a CNBC article. “The medical and public health communities and society at large are either uninformed or misinformed.”

There’s still a tampon tax in 41 states-- that’s a tax burden placed only on women for a simple health necessity.

This is a symptom of an overall dismissal of women and their value to society.

Otherwise, why would research about a disease that affects at least 176 million women worldwide be so vastly underfunded?

The National Institutes of Health 2016 budget allots only $11 million for endometriosis, a disease experienced by an estimated 13 million women in the United States. Diabetes affects just over double that number, at 29 million people, and receives 94 times the funding, over 1$ billion.

Our daughters, sisters, wives and mothers’ everyday lives are burdened with the wide array of symptoms from this under-researched disease.

Symptoms range from infertility to extreme gastrointestinal pain, back pain, abdominal cramping and bloating, chronic fatigue, inflammation and dyspareunia- unbearably painful sex. These are just a few of the most prevalent, disruptive symptoms to a woman’s productivity and her enjoyment of a full and beautiful life.

The cause of endometriosis is unknown, as is a cure.

Of course, not much has gone into finding out.

Many women go most of their lives without a diagnosis, and many are misdiagnosed before receiving that stamp; the giant, gynecological “Uh-oh” that is endometriosis.

It takes an average of seven to 10 years after symptoms begin before a correct diagnosis is reached. For many women an answer is its own relief. Years of silent pain are manifested; they have found a tentative ground from which to break their collective silences and begin to understand the mysteries of their bodies.

They were never hysterical, crazy, experiencing phantom pain, or weak. They were enduring. And they were strong.

But a diagnosis is also the start of a harrowing journey of cold metal stirrups, gooey ultrasounds, painful surgeries and monthly shots in the ass. (Lupron shots suppress the production of estrogen in the body, and is also used as a hormone therapy for transgender men.)

And they’re lucky if insurance agrees to cover it all.

Author and actress Lena Dunham went public in 2015 with her personal health journey and experience with endometriosis.

“I know I’m lucky in the grand health scheme, but I also know that I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with skepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it,” wrote Dunham.

The millions of women’s lives and health affected by endometriosis need to become a priority.

In a more educated society, I might have been diagnosed when I first experienced symptoms at 14, long before the morning I awoke at 25, attempting to get to work and instead retching in agony. Pain like hands with razor-blade fingernails twisted at my insides. I couldn’t stay on my feet.

I crawled through the house and halfway up the stairs towards my roommate's door before anyone heard me calling for help. They carried me to the car, where I moaned, petrified the whole way to the emergency room.

At the ER a kind doctor loaded me up with a dose of Dilaudid and I felt relief seep through my body, a relief from a pain so unceasing it lived as a constant in the back of my mind, shoved into the darkest corner of my closet, a wretched, shivering, gollum.

The doctor proceeded to do the whole stirrups-and-speculum-number, and decided to move me quickly along towards the more gooey, transvaginal ultrasound portion of my stay.

Endometriosis was his conclusion, but he couldn’t positively diagnose it without laparoscopic surgery.

A month later I went under the knife. I received a full laparotomy incision instead of the laparoscopic surgery they had prepped me for.

The author post-surgery on May 1, 2012.

Complications arose. The surgeon had removed an endometrioma, or “chocolate cyst,” the size of a tennis ball from my body. It had lowered my ovaries behind my uterus.

I am still on a journey for health. Using the Mirena IUD to suppress my cycles in an effort to slow the progress of the disease hasn’t worked. Two years after the surgery I experienced a surge in symptoms-- new symptoms.

I was told that if I had the surgery and used hormonal birth control to suppress my cycles, the endometriosis would most likely not recur.

Misinformation.

If they had let any disease go unnoticed during surgery or only removed superficial disease, it would resurface.

Unfortunately, current insurance codes only accept specific types of surgery, ones that often leave disease lingering, ineffective for complicated, widespread cases of endometriosis. This prevents women from seeking the care of specialists who perform the far more expensive but effective excision surgeries.

When I presented with intense gastrointestinal symptoms I approached multiple doctors about the possibility of endometriosis returned. I was met with shaken heads and told it was extremely unlikely if not impossible. It must simply be a case of Irritable Bowel Syndrome.

Misdiagnosis.

I elimination-dieted, developed weird food intolerances, was miserable, dieted more, gained weight, lost weight, became so bloated I looked eight months pregnant.

After a year without insurance, I qualified for state insurance and was lucky enough to be referred to Royce Ryker, a nurse practitioner at The Corvallis Clinic who looked me in the eyes, listened to my story and immediately ordered a colonoscopy.

Endometriosis usually cannot be found through a colonoscopy, but my case was different. The tissues have grown through, or significantly thickened the wall of my sigmoid colon. Heads up, because it’s time for another surgery.

And to all those doctors who didn’t listen: I was right all along.

It is possible to become numb to the pain of something you can’t see or express when you are constantly silenced. When you are told you must love your body, yet your body betrays you so inexplicably, the pain becomes a sign of mental weakness rather than a physical one.

The silence becomes its own weird, painful enigma.

The rampant misinformation surrounding endometriosis is a ripple effect set in motion by a prevalent disregard towards the women of the world.

Millions of affected women share a burden of pain that is not only theirs to bear, it is a detriment to society. Ignoring their healthcare needs is ignoring your own family’s; after all, one in ten women is surely your mother, your sister, your daughter, or your friend


For Further Information:

• A comprehensive news article from CNBC's Dina Gusovsky, "Women suffering in silence: The endometriosis crisis"
• A superb article from The Guardian, "Endometriosis often ignored as millions of American women suffer."
• A personal story from author and actress Lena Dunham, "The Sickest Girl"
• An in-depth look at the medical aspects of the disease from expert Dr. David Redwine at Endopaedeia.com
• Basic information about endometriosis from The Center for Endometriosis Care
• A recent study "Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries"