16 Clueless Things People Have Said About Endometriosis, According To People Who Have It
“You should find a man, settle down now, have a few kids, and then get all your plumbing taken out.”
1. Just take painkillers.
2. The answer is having a baby.
“Just get pregnant! They say that helps."
But what they don’t know is that you have been trying for years and years...and that comment just took a little stab at your already-broken heart.
3. Or similar: What you need is a man.
After throwing up and passing out at work from some of the worst pain I’d had yet, I was taken to the hospital. The ER doctor, a woman in her late thirties, said to me, “You should find a man, settle down now, have a few kids, and then get all your plumbing taken out.”
I was 19. It remains one of the most callous things anyone has ever said to me.
4. You don't look sick enough.
5. Your organs are mangled.
"Your ovaries are mangled."
From the surgeon who had just operated on said ovaries. Endometriosis is a complex condition which needs specialist surgeons; however, lack of funding, training and research means generic OBGYNs will undertake surgery, often with poor outcomes. I cannot state this enough — do your research and get an endometriosis specialist.
6. The keto diet will cure you.
7. You just have a tight vagina.
From various doctors:
“You just have a tight vagina. Try PT or muscle relaxers.”
“It sounds like you just have a weak core. Try yoga.” (I am a rock climber and a waitress, both skills that take core strength.)
“You did this to yourself by having sex on your period. Try abstaining.” (From a university doctor at one of the top 15 med schools in the country.)
“Everyone feels this pain. You just have a low pain tolerance.”
And finally “I can’t know for sure, but I’m 85% certain this sounds like endo. I recommend surgery so we can at least rule it out and raise your quality of life.” (And of course it was endo, and this doc did raise my quality of life :)
8. You probably have cancer.
The first time I was hospitalized, I didn’t even know what endometriosis was. I was 18 and was admitted because I had a cyst the size of a lime on my left ovary that was bursting, and a cyst the size of a CD growing on my right ovary. My doctor came into my room and promptly said, “Well, we’re probably going to take out one or both ovaries, and there’s a 50/50 chance it’s cancer. Alright? Any questions?” I said, "no" and he left.
9. It's only a woman's condition.
So I run an online group for queer people with PCOS, and many of us have endo too. We're always excluded from endo and PCOS discussions because it's assumed that it's a women's condition, completely ignoring that trans men have uteri and ovaries too. And that gender non-conforming people can have these problems as well. Also when we talk to medical providers about these problems the focus tends to be on fertility, which many queer people are not necessarily focused on in the same way that cis hetero women are.
10. All women get cysts.
11. Just take antidepressants.
It’s only your perception of pain. Prozac will help.
12. Endometriosis is good and necessary.
13. It's just a bad period.
"It's just a bad period. Stop overreacting" I've had periods that made me PHYSICALLY ILL, unable to walk or go to school. I've been in pain so bad that morphine given at the ER didn't help me.
"The pain can't be THAT bad." As I'm having a hard time walking.
"It doesn't affect anything but your period"
This IS THE WORST. It affects mental and physical health. It affects relationships. Why? Chronic fatigue; not being able to clean without being in pain. Sexual intercourse? I've cried from those pains. Some men ARE SO UNSUPPORTIVE and treat endo sisters like shit. It's so sad. Endo effects every part of life. School, work, home, relationships (intimate and family), everyday simple life and activities. It's not okay the stigmas we have.
14. You can get better with the power of your mind.
15. You only feel bad during your period.
My endo became so bad that I was in pain 24/7 and pretty much lost my ability to walk. I’ve had many people say, “Thankfully you only suffer during your period.” It’s like, no, I suffer every single day and having to use a mobility scooter to get around is incredibly embarrassing, especially when you are only 34 years old and look “healthy.”
16. Endometriosis is a sexually transmitted infection.
“Did you get endometriosis because it’s a sexually transmitted disease?”
I have had people ask me if endometriosis is the gateway to endometrial cancer. There is endometriosis, and then there is your endometrial lining, and then there is cancer of the endometrium. They’re not the same things.
Community submissions have been edited for length and clarity.