The dangerous myths that prevent me from getting the endometriosis care I need

I’m sick almost every day, gently poking my distended stomach wondering when my pelvis is going to explode. I have debilitating cramps that begin mid-cycle, accompanied by nausea and a fever that breaks around the time I begin to bleed. At age 26, my OBGYN suspects that I have endometriosis, a disease in which uterine lining grows outside of the uterus, attaching to other organs. It has no known cure. In his plush Upper East Side office, he asks if I’ve considered getting pregnant; he tells me that it’s the best way to treat it. I’ve just opened my first adult savings account and don’t have a boyfriend, so no, I haven’t thought about giving birth to a child. I also don’t yet know his claim that pregnancy is a “cure” for endometriosis is a myth.

That year, unable to pull myself out of bed most mornings, I leave my life in N.Y.C. to live with my father in Georgia; he can add me to his company’s health insurance plan. I had been temping in Manhattan and coat checking at night, but these types of jobs don’t offer health benefits. My new doctor refers to my situation as a “working woman’s disease,” and explains that he can’t diagnose me until I have surgery. An ultrasound cannot detect the disease.

For over 6,000 years, women with heavy cramping, pelvic pain, or pain during intercourse have been dismissed by our patriarchal society—so much so that painful periods have been normalized. Doctors do not consider these symptoms medical red flags, but hysterical complaints by psychologically inadequate women with low thresholds for pain.

Even doctors that do recognize women’s pain as a potentially serious condition are challenged by the lack of research and resources available.

“Endometriosis is a chronic disease, and with little treatment options, women can suffer for decades. The symptoms are vague and can be associated with other disorders like bowel disease. There are no laboratory evaluations that can be done,” says OBGYN Alyse Margaret Kelly-Jones. According to The Endometriosis Foundation of America, it takes approximately ten years for many of the estimated 200 million endo sufferers worldwide to be diagnosed.

My doctor discourages me from having a laparoscopy to remove the adhesions and endometrioma—cysts filled with dark brown blood formed from tissue similar to uterine lining—that have likely migrated outside my womb. Even after surgery, there is no way to prevent it from attacking my insides. So, I wait while collecting a pharmacy of pastel painkillers with too many side effects to take while working or driving or being awake. My treatment plan consists of extra-strength Tylenol, a heating pad, and sleep. On one hand, I count the number of good days I have each month. I pretend every day to be okay. My home in New York feels like a distant memory.

A few months after my doctor’s visit, I am rushed to the hospital for a ruptured cyst after an evening shift at the restaurant where I work. Now, they say I need surgery. The diagnosis is Stage IV endometriosis due to the large number of implants and endometrial cysts that were attached to my digestive tract, pelvic cavity, and rectum. After surgery, I’m told there is tissue left inside me because it was unsafe to remove it. I get to keep it.

Before the disease attaches itself to my insides again, the doctors go over my options: pregnancy (even though more than half of infertile women have symptoms of endometriosis), hormone injections that cause premature menopause, a hysterectomy.

I feel like I am in the dark ages: Have a baby now or remove the organ necessary to have children in the future. I read The Endometriosis Sourcebook for answers, but it is a mystifying disease with little money allocated to understand—or even agree upon—what kind of disease it is and what causes it. Almost all endometriosis websites include a myth versus fact section. While this may sound like progress, it’s a small win.

The myths are just as pervasive and toxic as the illness itself.

I move to Los Angeles because it’s sunny every day and I dream that the health-obsessed city will rub off on me. It’s only in photos that I notice how sick I look, which is curious to others because I don’t “act” sick. As a child, the gauge of sickness was the rise of silver mercury in a thermometer. I’ve learned that there are key symptoms that people respond to: vomiting, fever, broken bones, bruises. What do you do when all of your broken pieces are on the inside? Sometimes vomiting is really nausea; fever is the chills. I call my symptoms chronic fatigue. But am I more tired than a mother with three kids working two jobs? Who isn’t tired?

I shame myself into hiding my pain, but secrets have consequences. My consequences take the deformed shape of deep scar tissue. After my second surgery, they tell me it’s now or never for children. I now have a live-in boyfriend, but he is not ready. I’m not sure if I am either, but I know I want children, so it must be now. My pain is significantly reduced with Chinese herbs and acupuncture, but when I lose my job, I struggle to keep up with weekly sessions. I return to bottles of burnt orange pills and electric heat, and I am unable to carry a pregnancy to term. We miscarry more than once and turn our spare room into an office.

A Twitter search for #endometriosis yields approximately 2,000 posts in a week; the majority are declarations of excruciating pain or stories of not being believed. Images include a crying uterus and selfies in hospital beds. Hashtags like #endometriosissucks, #endometriosisisreal, and #endometriosisresearch are calls for support, solidarity, and action. @xMelissaR04 sums up what our insides feel like: “On my way to work & it feels like Freddy Krueger has his fingers in my uterus ”

In online support groups, the misinformation that young women receive from their physicians feels criminal to me. High school girls are studying for their driver’s exam while getting hysterectomies. After undergoing eight surgeries, Lena Dunham recently chose to have one, but since endometriosis grows over the uterine lining, she still may experience pain. Unlike Dunham, I imagine that these girls may not have the opportunity to get a second opinion. SpeakEndo.com notes that teens’ endometriosis symptoms are the most likely to be written off as bad cramps.

Founder of Seckin Endometriosis Treatment Center (SEC) and endometriosis excision specialist surgeon Dr. Seckin has a different definition of endometriosis. On his website, he writes, “This is endometriosis, menstrual periods that are literally stuck inside of a woman’s body. The implants can grow deep and wide, spreading and clinging to her uterus, appendix, rectum, ovaries, intestines, leg nerves, and other parts of the pelvic region. They are like leeches that attach to, reproduce on, and grow on whatever internal organs they find. They are similar to a slow-growing cancer that invades the organs in the pelvis. In some rare cases, they can spread to the diaphragm, lungs, kidneys, or brain.”

I have been battling endometriosis for over twenty years. It’s the longest and most toxic relationship I’ve ever had. A relationship I can’t escape.

Last month, I fastened my feet into another pair of stirrups, hopeful that a young doctor may have a more progressive approach. He locates a sizable cyst on my left ovary and a sac of fluid above it. “You haven’t been treating it, so I suspect that your endometriosis has grown back. Have you tried Lupron?” he asks me.

I know that several pharmaceutical companies who manufacture Lupron are being sued by a woman whose body attacked her bones after just two injections. “I know many people who’ve had negative experiences with it,” I tell him, which is the truth. He shrugs his shoulders and tells me that getting pregnant would be the best of both worlds. I have no idea what two worlds he is referring to.

While it wasn’t right for him to blame me, I haven’t been militant with my pain management. I stopped going to acupuncture, and even though I subscribe to a healthy vegetarian diet, yoga, and exercise, I’ve only dabbled in holistic treatments such as CBD or hemp oil, Reiki, and essential oils. The truth is, when I feel good, I want to forget that endometriosis exists.

I should have been better, I think—but then I stop myself.

As I was writing this essay, I ended up in the hospital for severe pelvic pain, nausea, and the chills.

My blood work results appeared as emails on my phone as I sat in the waiting room. After watching every patient disappear behind the double doors, I asked the receptionist why I was being seen last. “Patients are categorized by the severity of their condition,” she said with a forced smile. I wanted to read her a recent article that cites endometriosis as one of the most painful chronic illnesses. Instead, I nodded and waited my turn.

“The cyst and fluid sac are gone. They must have ruptured,” the ER doctor tells me. “Endometriosis is a terrible condition; I am so sorry that we can’t help you.” I am not an emergency and I can’t be helped at the ER.

“The good news is that your vitals and blood work are great,” he says. “And your pregnancy test was negative.” I winced, knowing that I am nearing the end of my fertility window. I’m glad that he doesn’t pretend to know how to treat me or tell me that I could have cured myself. At least he doesn’t prescribe me a myth. Instead, he prints out the names of five OBGYNS who may have more experience with endometriosis. “They are excellent doctors,” he says, and I believe him because he believes me.

While new marketing campaigns urge women to “speak out” about their symptoms, history has shown that women who speak out are not believed.

We are not in the dark about endometriosis because women ignore their symptoms; we are ignored because women’s bodies are devalued.

This treatment by doctors has reprehensible effects. It falls on our shoulders to raise awareness and dispel myths that pregnancy and hysterectomies cure endometriosis. We need to band together to demand more studies, more funding, more understanding of women’s bodies. After all, it is our bodies that give life.