If I were to tell you that I had a disease whose primary characteristic was the proliferation of cells that, like super glue, spread over my internal organs, crippling their ability to do whatever it is they are supposed to do, you would (as people do when I tell them) drop your jaw and stare horrified.You'd want to know the name of the disease, whether there was a cure, a national day of awareness or celebrity benefit that raised money for research and treatment. But if I were to tell you I had bad periods, your reaction might likely be a shrug, an "ooh-icky" nose crinkle, and possibly a "suck it up, bitch" eyebrow lift.
Such is the problem with endometriosis, a disease that effects more than 170 million women worldwide (as much as breast cancer, diabetes or asthma), but which has gone almost-unbelievably under the public's radar, thanks to a widespread misconception of the disease as a lady-parts problem involving hysterical anxiety, an over-achieving personality type and, according to one Italian study, above-average attractiveness.
March is Endometriosis Awareness Month, and the push to bring the disease into common vernacular is on the agenda. The first ever Worldwide Million Women Endo March took place in more than 53 cities around the world last Thursday, March 13. In the U.S. the Endo March took place in Washington D.C., as organizers and participants sought to gain the attention of congressional representatives and health policy-makers.
Hundreds of marchers (joined by thousands more online) braved frigid temperatures to rally on the National Mall.Sheryl Crow (a survivor of breast cancer but not endometriosis) performed an acoustic set in a cute ski hat, and Stephanie March (of Law & Order: SVU-fame, also a co-founder of RougeNY.com and a contributing editor for Fathom), was the day's spokesperson, marching all the way to the Capital Building in a killer pair of stiletto boots. Wait, Stephanie March has endometriosis, you say? Yes, and Padma Lakshmi, Susan Sarandon, Whoopi Goldberg, Cyndi Lauper, Dolly Parton, Hilary Clinton— hang on, WHAT?! (If you didn't already know, don't feel bad; just "suck it up, bitch.")
The Endo March's organizers made sure comfort and hospital stations were provided along route (i.e. toilets and doctors), so participators felt something they usually do not when traveling: safety. Because, normally, leaving the confines of our beds and bathrooms is tantamount to climbing Mt. Everest. Do we so-called "Endo Sisters" care, at this point, that you know all the gory details? I, for one, do not, but I can't speak for other women who are in a position to help to the millions suffering in silence (see Sara Kaye's recent piece on Endo for xoJane).
Silence, as should be apparent by now, has gotten women nowhere with this disease. In essence, to be the demure modest females we are expected to be has nearly killed those of us with endometriosis. Our shameful, embarrassing symptoms are relegated to the far corners of our bathroom floors, where we writhe in pain, vomit, hemorrhage, or numb ourselves with opiates like some Dickensian character in a 19th century novel. http://berrilynn.kinja.com/through-a-spel…
The cause of endometriosis is unknown, with various theories abounding, including genetics, food intake, and pesticides.
A large part of the problem with endometriosis is that the only way to entirely confirm its presence is by analyzing tissue through surgery. Thanks to this, conversations with your doctor revolve around Anecdotal Evidence (i.e. hearsay not routed in scientific study). In other words, you have to convince your physician there is actually something wrong with your body and not your head.
MIT pioneering endo researcher Linda Griffith told the New Yorker last month that her niece exhibited classic symptoms, which her female gynecologist "completely dismissed. … [She] was told she was making up symptoms to get out of school." Nice.
"You don't get your money back for a crappy doctor's visit, do you?" notes Kaye.
Campaigning for a non-invasive test that would prevent misdiagnosis is one of the principal aims of the Endo March, whose organizers include Dr. Camran Nezhat, a pioneer in endometriosis research and treatment. Begging well-known personalities to speak up about the disease is another goal.But would you want to be the actor, rock star, novelist, or politician who has to admit to a host of cringe-inducing symptoms? Stephanie March, thankfully, doesn't mind a bit.
March was recently diagnosed after years of crippling pain. "I had fallen into this cycle where I was in shocking pain in the middle of my cycle each month," she says. In October of this year, March landed in the ER, "in so much pain I was begging them to open me up.By the time they did, my appendix had ruptured." The doctor on call told her she might have endometriosis, but that she should see a specialist to confirm it. "Because my appendix ruptured, that was what they were concerned about. Later, when I looked back at the surgical records, it noted they had in fact found endometrial cells on my appendix.But why did they not tell me this, specifically?"
As many women with the disease do, March went from doctor to doctor, trying to get anyone to believe she actually had the disease. "You get to the point, seeing all these doctors, that you finally say, "I'm not going to sit here and go over this again and again with you.And I'm not having any more 'exploratory' procedures: no more free looks, everybody!"
March wants to know why, if 10% of women across the Globe have endometriosis, the disease isn't "part of our women's health check list? I mean, you go to any doctor and they ask are you diabetic, have asthma or hypertension?This needs to be standard protocol for female health."
A huge supporter of Planned Parenthood, March is sick of endometriosis being perceived as an inappropriate topic. "People [in the U.S.] are just so uncomfortable with women's health. We're so afraid to talk about this as a health issue because we see it as a private, embarrassing problem."
Unless, of course, you're desperate to have a baby. Occasionally, as any sufferer of endo will tell you, the infertility component of the disease will make a doctor take notice. But where does that leave women who don't plan on having children? "I think a lifetime of chronic pain and being rushed to the ER should do it," notes March. "I think every single month I had to beg my OBGYN for prescription meds for my cramps, should have been enough. I mean, you're saying to them, 'Can we not have this conversation every month?' But, you know, until women's health gets the research, attention, education, and funding it deserves, we will not get better. Women's health cannot just be men's health plus a 'make-a-baby' add-on."