Bloggers Unite for EndoMarch: Week Two – Getting Personal

January 23, 2014

If you haven’t heard of the EndoMarch you can read last week’s post on it or just go straight to the EndoMarch website.

Why am I writing about it? Because Casey told me to. And I want to help spread the word about this important cause. Because, as you will soon learn, even though endometriosis has affected me directly I feel I’ve gotten off lightly. Many other women have to fight much much harder than I and I want to help them.

I was first diagnosed with endometriosis at age 20. It took me only 2 years to get that diagnosis. For most women it’s more like TEN YEARS. I was lucky to have a doctor cousin who listened to me, did not blow me off or think I was crazy, did not tell me that sex was painful because I was “doing it wrong” (Yup, totally heard that from a doc), and who finally said, “Has your OBGYN mentioned endometriosis? Ask him about it.” And boom – diagnosis. Well, first SURGERY since that’s the only way to get a diagnosis.

If only it really were that easy. The biopsy came back negative. Which didn’t phase my doctor. He stood by his diagnosis. Unfortunately I moved around quite a lot so my next doctor just saw the biopsy results and said, “No, you don’t have endometriosis.” But he was willing to go along with my wish for Depot Provera and even kept the diagnosis code on the records so that insurance would cover it. This was way back in the day when insurance wouldn’t cover birth control if you were using it for *ahem* birth control but only if you were using it for something else. Oddly, that helped me out not just financially but by keeping the diagnosis on my records even though that doctor was skeptical.

I remained on some form of birth control for many years. That was enough to keep most symptoms at bay so I never lost my job from being out sick too often. I never ended up in the ER because the pain was so horrible. So many women do. So many women have surgery after surgery – often with well meaning but untrained OBGYNS – and still get little to no relief. They can’t holds jobs.

I do know what it’s like to see doctor after doctor, have test after test, and get no answers. Endometriosis rarely shows up on imaging tests. I know what it’s like to be poked and prodded and probed only to ultimately be met with that doctor look that says, “It’s all in your head.” Just the process of getting the diagnosis and/or determining if all your symptoms are due to that one diagnosis or if you perhaps have other things going on…that process itself is exhausting and fraught with fear of hearing, “There’s nothing wrong with you. Stop malingering.”

Although my physical pain from endometriosis has never reached the level of so many other women’s pain, I absolutely understand the psychological side of things. My story is actually more complex than I’ve shared in this post but the gist remains the same. The reason it’s so incredibly hard to get doctors to truly listen to you is because the doctors themselves need to be better educated about this disease. OBGYNs who are not experts in endometriosis treatment/excision need to stop telling patients they know how to treat this disease. Because they don’t. Doctors across all specialties need to be more aware of this disease so they can recognize its symptoms and refer their patients to qualified care. And maybe they should check their egos at the door and refer women to qualified care even when they DO recognize the symptoms and agree with a prior diagnosis – instead of offering sub-par care (this happened to me recently). And when a celebrity such as Padma Lakshmi doesn’t get diagnosed until age 36 you have to stop and say, “Houston, we have a problem.”

It’s a big problem affecting 1 in 10 women worldwide. The first step in fixing a problem is acknowledging that you have a problem.

AWARENESS, bitches. —> EndoMarch

my cat

Even my cat thinks you should support this cause

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6 Responses to “Bloggers Unite for EndoMarch: Week Two – Getting Personal”


  1. […] already Week Five (how did THAT happen?). If you’d like a recap… Week One: Basic Info Week Two: Getting Personal Week Three: An Open Letter to […]


  2. […] One: Basic Info Week Two: Getting Personal Week Three: An Open Letter to Congress Week Four: An […]


  3. […] am blogging. Week One: Basic Info Week Two: Getting Personal Week Three: An Open Letter to Congress Week Four: An Interview Week Five – Goals Week Six: […]


  4. […] first, in case you’d like to catch up here all the previous posts: Week One: Basic Info Week Two: Getting Personal Week Three: An Open Letter to Congress Week Four: An Interview Week Five – Goals Week Six: […]


  5. […] now time for me to wrap it up. But first, here are the previous posts: Week One: Basic Info Week Two: Getting Personal Week Three: An Open Letter to Congress Week Four: An Interview Week Five – Goals Week Six: […]


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