I Have Endometriosis, the Invisible 'Crazy Woman's' Disease

It's a really common illness -- one in 10 women have it. That’s similar numbers as diabetes, but no one knows what endometriosis is, so no one knows they should care.
Publish date:
March 15, 2014
health, diseases, endometriosis, invisible disease

We know things are getting serious when we hear a TV doctor say, “She’s suffered a lot of internal bleeding.” We think this happens only after horrible car accidents and earthquakes. We don’t really think of the millions of women with endometriosis suffering in silence, having mini-deaths from endometriosis adhesions bleeding from their internal organs every month.

Endometriosis is a weird and kind of unbelievable disease. It’s hard to describe, and it involves a top-secret body part called the uterus that you don’t hear about it much, but it affects 157 million of women across the world. (Check out this video.) Because it's underrepresented in medical training and causes debilitating pain that can’t be measured, tested, or seen on scans, you have a nice recipe for an invisible disease relegated to "crazy women."

Celebrity stories about endometriosis are usually tied to fear of losing fertility (see Julianne Hough and Padma Laksmi). Infertility is a possible effect of the disease, but focusing on only that makes endometriosis more of a broken-baby-machine problem, burying the real issue: that women’s pain is being ignored, and the medical community isn’t being held responsible. The average time of of diagnosis for endometriosis is now 8-10 years.If you’re wondering how that can be, let me share with you the top five phrases I've heard in my own experience over the past decade from licensed medical doctors:

  • “Having a baby helps”
  • “This will go away after menopause”
  • “Some women are just really unlucky with their periods”
  • “But you’re healthy otherwise"
  • And the awesome: “Yeah, I don’t know.”

You can imagine how many years it took to sort through all that helpful medical information.

The tides may be turning, though. One of the major obstacles has been awareness, and for the first time ever, there was a huge march on March 13th in Washington DC called the Million Women March. And March is national Endometriosis Awareness Month.I’m offering three suggestions I’d like fellow supporters to take to the White House: 1) We need a spokesperson. This is a really common disease. One in ten women have it. That’s similar numbers to diabetes, but no one knows what endometriosis is. We need an international spokesperson. Sheryl Crow was at the event in DC, and she’s a good option, but I’m thinking bigger. Supposedly Hillary Clinton suffered from it, but she hasn’t done much with her political power to encourage research and awareness.

Even though I kind of understand that admitting you even have a period is political suicide, we should think about how she hasn’t done much for endometriosis awareness if she ever decides to run for the big office. We need someone totally committed, someone who has an attitude opposite of what we think of when we hear “disease” -- someone that knows Girls Just Want to Have Fun.

I’d like to nominate Cindy Lauper! If you read her recent memoir, and I recommend you do, she talks about her struggle with endometriosis -- how she had to undergo a couple surgeries back in the '70s and it caused setbacks in her career. We can also see if Dolly Parton (also rumored to have suffered from it) has time to help, because I also want to ask her if she would be my mom. 2) Take it out of the uterus. Endometriosis takes too long to say, let alone explain. People that don’t have it -- dudes in particular -- don’t seem to care, and if if you do take the time, it’s still misunderstood as just a "period problem" that can be solved by ripping out the uterus (it isn’t).

More people would understand it if we disconnected it from “lady parts” and saw it as the assault on internal organs that it is. I’ve heard patients and doctors say it’s like pouring glue on internal organs. “The disease shares many features with non-fatal cancers, although it is not a cancer,” said Dr. Camran Nezhat here. “It can metastasize or spread essentially anywhere in the body, including the brain.” 3) Demand more from the medical community. Has anyone else read The Good Nurse? If that dude didn’t get canned for straight murdering people for over a decade, doctors and nurses aren’t going to suffer much for just being uninformed, biased, and super lazy. We should beshocked at how little checks and balances are put on the medical profession. As it stands, being fobbed off by a doctor isn’t a professional crime, and we don’t need to lock them up or anything, but shouldn’t there be some repercussions? You don’t get your money back for a crappy doctor's visit, do you? Studies have shown a pretty disturbing gender bias in the treatment of pain (for more info, read the work of Laurie Edwards) and with half of the population quite literally incapable of experiencing menstruation, female pain will continue to be ignored unless we put pressure on medical leaders. The dilemma with endometriosis is that, as of now, it takes a laparscopic surgery to be properly diagnosed and treated (note: hormones do not treat it; they only suppress symptoms). Surgeries take time and skill and involve some risk, so it is much less risky for a physician to just give you an RX for the pill and some ibuprofen. Nothing happens to them, insurance processes their payment, their credentials stay intact, but patients pay a huge price because it is their lives that are affected.

Any ideas on how we should handle this? Congressional bills for women, pain, and medical accountability? National review database for doctors? Or should we be kind and just encourage programs to educate doctors?And a final note to ladies who are suffering: If your doctor doesn’t listen to you, move on as soon as you can. A lot of times you have to say the magic words: “This is serious. I’m canceling plans, missing work/school" for them to get the picture.

Endo sufferers are put in a wacky position because they are usually describing pain that they WERE in (even though some are in near-constant pain), and the doc is looking at them like, “What? You seem fine now.” Until the medical profession fixes the pain-gender bias, you have to do everything you can to let them know you are not fine.Remember, you will not get a trophy, public admiration, or a special seat in heaven for putting up with pain. In fact, if you can just get a bit more verbal about your suffering, we can achieve the dramatic revolution I'm talking about. Hey, whatever makes ‘em listen.