Let’s talk about Endometriosis.
Endometriosis is an extremely painful and dangerous disease affecting about 1 in 10 women. It causes extreme pain related to sex and ovulation, fatigue, infertility, and greatly impacts physical, mental, and social well-being.
According to this site, “There is no known cure and, although endometriosis can be treated effectively with drugs, most treatments are not suitable for long-term use due to side-effects. Surgery can be effective to remove endometriosis lesions and scar tissue, but success rates are dependent on the extent of disease and the surgeon’s skills.”
Yes, you read that right. There is a major disease that affects 10% of women. No one knows what causes it. No one knows how to effectively treat it. No one knows how to cure it.
Why? Because it only affects women.
Endometriosis is a strong example of how society does not take women’s pain seriously, and it’s not the only one. There are many more “women’s health issues” that are untreatable, incurable, and not taken seriously by the medical world. Try researching Polycystic Ovary Syndrome or look here for a list of how various diseases impact women, often more severely than men.
One thing doctors do know about endometriosis is that it’s often associated with inflammation and immunological dysfunctions, though it is not an autoimmune disease. These issues also disproportionately affect women: nearly three times as many women are diagnosed with rheumatoid arthritis than men (read more here), and two to three times (60-70%) as many women are diagnosed with celiac disease as men. (read more here) My doctors believe that I have endometriosis, and that before pregnancy my mother did as well, though she never received care or treatment.
I was left with undiagnosed celiac disease for 8 years, despite frequently attempting to express my symptoms to my doctor. For 8 years I was perfectly aware that I was dying and unable to receive help or care because no medical professional would listen. I used to (forgive me) pray that I had cancer, because at least then my pain would be “real,” people would try to help, and I wouldn’t be dying alone.
According to celiac.org, “Left untreated, celiac disease can lead to additional serious health problems.” They also say that with an age of diagnosis between 12-20 years of age, my likelihood of developing more autoimmune conditions was 27%. And how did I get diagnosed with celiac disease? My brother started showing symptoms at a much lower severity than mine, and they diagnosed him. If he hadn’t gotten sick, I would still be undiagnosed. I would still be dying.
About six months before I got my diagnosis of celiac disease, the nutritionist I was seeing to address my symptoms of a still-unknown cause looked at me critically and told me that there was no way I had celiac–because I wasn’t presenting symptoms of mass inflammation. When I went off wheat and started to feel better, my GP told me to go back on because I was losing weight (for the first time in many years despite an incredibly healthy diet), despite my claims that I hadn’t felt so good since I was 9 years old. When I switched to a new GP, she also told me that I couldn’t possibly have celiac disease, though she recommended that I go off gluten.
In eight years I developed endometriosis, a painful disease that doctors can’t cure. I may have lost my ability to have children, something that has been my dream since I was old enough to know what a baby was. I lost my ability to absorb fructose, the main ingredient in most sweeteners as well as many fruits, vegetables, and grains. I lost the ability to process language and speak clearly. I became unbearably weak and fatigued. I stopped being able to produce seratonin, and spent many years dealing with debilitating anxiety that SSRIs couldn’t fix–they stopped my re-absorption of seratonin, but couldn’t help me to produce more. I lost all trust in doctors and medical professionals, to the point that I am often now incapable of explaining my symptoms to a doctor because I no longer believe that they will help. And most importantly, I lost the little nine-year-old girl who loved to climb trees and eat donuts and though she could do anything.
All because doctors don’t take women seriously about their pain. All because “women are weak.” All because I “didn’t really show symptoms.”
The horrifying article in The Atlantic by Joe Fassler about his wife’s experience in the ER was extremely difficult for me to read, because it was so reminiscent of my own experience. And it is not an uncommon issue: a good friend of mine recently had to wait in an ER for 2 hours with a ruptured appendix before even being seen by a doctor, much less given a diagnosis. Re-reading Fassler’s article, I keep thinking: how many more women will have to go through this?
Sexism is a huge issue in our society. But the cat-calls, the victim-blaming, the slut-shaming, that is only a part of the issue where we let women die simply because we as a society don’t believe that their pain is real. This is part of the big picture of sexism, where society thinks women’s lives are worth less.
This summer, one of my campers got hit in the head by another camper on accident while playing a game. I took her in for an ice pack, and listened in silent admiration as my boss, Julia, gently asked her the right questions to ascertain if she’d gotten a concussion. This summer, one of my campers fractured my nose and Julia demanded that I go see a doctor. This summer, I went in for a week of medical testing at the Mayo clinic in Rochester to see why I still had symptoms despite having been off gluten for almost 2 years, and experienced the care and sympathy of the nurses when I almost passed out on my 12th vial of blood, and the kindness of the nurse who administered my final (and positive) test as he repeatedly brought me more and more blankets. These experiences of care and concern have if nothing else put me on the path to healing and growing, and helped me through the new food-related nightmares and panic attacks associated with a new diagnosis. They really made a difference.
So if you are a feminist, yes, go ahead and free the nipple. But while you’re doing that, start looking around you and paying attention. Start taking women’s health seriously. Whether you’re a nurse, or a doctor, or a camp counselor, or a data analyst, you can make a difference here. Advocate, support, and above all listen.
Stop letting women die.
