Today, I took a large step toward finding answers to six years worth of severe but intermittent abdominal pain.
After being dismissed by doctors for five years as just stomach issues, the pain escalated enough over the past four months that it was time to learn more.
This month, following a series of increasingly frustrating visits and (thankfully) increasingly aware doctors, I was diagnosed with endometriosis, a chronic disease where the endometrial cells inside my uterus grow in the abdominal cavity outside my uterus and proceed to wreak havoc including pain, fatigue, and extra hormones.
This common disease effects one in ten women with severe abdominal pain and yet there is no known prevention and no know cure. Often, women live for over a decade without realizing that the level of pain they're experiencing is not actually normal, even if doctors tell them it is. Many don't find out until they try to have children, which can be difficult for women with endometriosis.
For most of my life so far, my body and I have been on wonderful terms. She's very clear about when we need to eat, to eat healthy, to sleep, to stop drinking, and to exercise. She's also very clear about pain, but on this point I had stopped listening. As a woman with high pain tolerance in a culture that assumes all women are fragile butterflies, I started to believe that it wasn't really that bad, that it's something I would just have to live with for the rest of my life. casual informal wedding wears dressed in summer
Today, doctors removed a cyst that was larger than my ovary and several endometriosis spots through a laparoscopic surgery. For the moment, my insides look like they should, but because we still don't know why endometriosis happens or how to cure it, it's quite likely that it will come back at some point.
This has been one of my deepest personal brushes with institutionalize sexism. How such a common, severe disease has gone so under-researched and under-diagnosed is a strong message about how much our culture doesn't respect women's bodies and women's pain.
I've gone back and forth about how much to share, particularly on public online platforms, but despite my New England upbringing, I believe that the difficult paths can be some of the most important to share. They are definitely best walked together. Through sharing our stories, we better learn how to care about each other and ourselves.
Here are a few things that I've learned:
1.) Learn about your body and how it works. Endometriosis is common enough that everyone should know what it is. The likelihood is that you know several people who have it.
2.) Listen to your body and trust what you hear. Doctors have gone through a lot of training, but you're the one who has spent a live time in your own skin.
3.) Ask for help. After being alone in the ER with pneumonia a year and a half ago, I questioned a lot of friendships. Each person in turn said "I would have been there if you asked!" Asking is hard, especially when you're vulnerable, but if you take that brave first step it not only means that you receive help, it also means that you have opened the door to the person you are asking should they ever need help.
4.) Painting the night before your surgery so that your hands and feet are blue highly amuses your medical team.
Our culture teaches us to share our indignation, our anger, and our pride. Together, we must relearn to share our hopes, our fears, and our love.
This is just the beginning of what will be a life-long journey. Thank you to everyone who has held me so far, with words, with arms, and with smiles. Especially to my superwoman mother and my mindblowingly loyal partner.
Much love to you all, let's learn something together.