It’s known in the medical world (or at least the patient-doctor version of it) by its cute little nickname: endo.
Until fairly recently, it seems, endometriosis has been relatively quiet. But a just released story in The Guardian circulating social media is speaking out. When I read it today in my living room while feeding my third baby I cried.
Many aspects the article talks about I’ve experienced and still do, in lesser degrees: the stomach pain ranging from mild cramps to severe doubled-over pain, the tiredness, the low immunity, the nausea. I’d had it all for years. But like the article’s author, my experience had not initially been validated.
The truth is, endo has never been quiet. It’s been raging its incessant way in the lives of countless women. But slyly. On the inside. Where no one can see.
I’ve had endo for…well, it seems, all my life as a woman. But for many years my experience was shrugged off by (mostly male) doctors.
It wasn’t until I saw a wonderful gynecologist (who since became my obstetrician) several years ago that he first identified what he thought it was. Surgery confirmed his hunch. I was riddled with endo. The worst degree of it. Stage 5. My insides were fused together like solid clay. It took three hours in my first surgery just to untie it all.
The gory pictures of my exposed insides excited my surgeon. He showed them to me after the fact like he was showing me holiday snaps. From a vacation I couldn’t remember. You always know you have a bad dose of something when a medical expert gets enthused and animated reviewing your case.
I have had two surgeries for my endo. Three years after the first attempt, the disease had grown back in full force. I’ve since, miraculously, you might say (I certainly do) had three children, but I know the disease is still with me.
And I’m sure it’s similar with many conditions, there is an uncanny unease about having something inhabit your body, something not entirely (barely) within your control.
Part of the burden is of course the physical, but the other part is the emotional. You don’t just carry disease around in your body, you carry the weight of bearing it. In your head, your heart, your relationships, your history.
I’m glad Gabrielle Jackson, the article’s author, spoke out. In such a public way. It helped me. Even though I don’t know her, I felt like we shared something. I felt heard.
And this is what I’m thinking. Let’s be encouraged to speak to each other, sisters, brothers, not just about the obvious, easy stuff, but the stuff that’s hidden too. You never know who you might be able to encourage just by being able to walk alongside them in commonality.
(If you are interested, you can read The Guardian article here: The article that made me cry).