Having endometriosis is hard enough without having to deal with the constant judgment of pretty much everyone in your life. The pain is life-changing. It doesn’t go away like we need for it to, when we need it to so we do the one thing we think is the right thing: We turn to our doctors.
Unfortunately, a lot of times doctors aren’t even sure of what to say and say the wrong thing. So here is the blog of everything our Endo Warriors have had to put up with. We have to give love to those who have dealt with it without lashing out physically at someone. Endometriosis is hard enough without having to deal with an assault charge too.
One endo warrior actually had to deal with the typical “You don’t look sick” “it can’t be that bad” “it’s all in your head” “have you trying exercising more” from everyone around them but when a coworker said:
“I had tendonitis once so I can totally relate.” It was where she drew the line and had to facepalm. You just want to look at this gentleman and scream “really?!” as you walk away.
“Did you hurt your back?” – you know, because back pain is exactly the same an endo pain. <insert eye roll >
“Are you sure you don’t want a donut? Everyone likes donuts. I can’t believe your willpower!” – not sure why someone would decide that donuts can cure endo pain, but hey it’s a sweet way to get donuts.
“You just need to drink more water.” – while water is the best thing to put your body back on track, it isn’t going to help with the kind of pain that comes with endo. It is a nice thought and we are sure that the person was just trying to help out.
“It’s psychological” “Just don’t think about it” “ Find something to take your mind off the pain” – these are all actual words that people have said to our endo warriors. It’s definitely not a mind over matter situation but oh how we wish it was this easy.
One endo warrior shared this experience that involved her daughter: “When a nurse practitioner found out my 14 years old had been diagnosed with endo and said she should probably hurry up and have babies… Or before she was diagnosed another NP told her that her pain level couldn’t be 6/10 because she, “looked pretty comfortable sitting there”.
Another endo warrior could relate to that and told us “my doctor told me when I was 16: “I know your parents would frown on this, but if you get pregnant and have a baby it can help calm down your end for a while. Plus then you’ll have a baby, and the longer you wait the worse your chances are.” “My mom was VERY unhappy!” We can’t imagine a doctor saying this to such a young woman. Thankfully she did not take the advice.
This is another true experience that makes you wonder what the doctor was thinking. In fact, it makes you want to give the woman a hug for having the patience to deal with it.
“One of my first gyno Drs ‘laughed in my face’ and told me “I was making the pain up because pain can’t move around like that” Two years later he did my first laparoscopic surgery and in recovery room told me I had stage 4 endo. But the follow-up appt he denied ever saying that. But I had pictures he gave me from the surgery labeling the endo spots. I requested a copy of my records and from then on have kept my files with me after every visit.”
“Try and look on the bright side” – our question is what would be the bright side of endometriosis?
“Oh, it’s only a bad period man up” you know because men deal with bad periods all the time?!
My old doctor told me to “take 500mg Tylenol and a hot bath”
“You can’t still have endo you had a baby, you’re cured”
“You can’t have endo and pcos”
“Pain is only in the mind so think positive”
That was all said by the same dr in one 10 minute visit.
“At least you don’t look sick.”
“Have you tried taking extra-strength Tylenol?”
“Isn’t the pain just like bad cramps?”
“Have you tried basic pain relief or yoga? I’ve heard yoga stops it regrowing and it will disappear by itself. Also lavender.”
“I have bad period pains too, do I have that disease?” – we would like to think that this is someone honestly concerned about having it and not someone being difficult.
“Just because you have endo doesn’t mean you have that as an excuse for every other pain in your body, like back pain, leg pain and constant fatigue. Maybe you’re just lazy.” – this is one of the most insensitive statements that our endo warriors have dealt with. It’s actually came up a few times. Every time it makes us proud of how strong our endo warriors are.
“You had an operation so it must be cleared”
‘Try this essential oil! It completely cured me of absolutely everything!’ – Essential oils are amazing, but this isn’t something that they can just plain cure. Nice hope though.
‘Everybody gets period cramps’
How can it hurt if you don’t have your period? Cycles don’t work like that!
“You must have a really low pain tolerance; I have the worst period cramps EVER and I just take Panadol and I’m fine.” – what gets us is how people can actually think that all cramps are the same for every person across the planet.
“It’s just your anxiety there isn’t really anything wrong with you” “are you better now that your period is over” “you can’t be in that much pain or you’d be at the hospital”
“You’ve had a hysterectomy so how can you still have endometriosis Oh and I’m a hypochondriac!”
And a female doctor said most women take painkillers and get on with it.
“Just go take some medicine for it and it will go away.”
You would only have endometriosis if the pain felt deep or here’s some ibuprofen for your pain everyone gets bad periods.
“Essential oil cures everything”
“You don’t look sick”
“You don’t look like you have a chronic illness”
“You’re not in that much pain just take Tylenol”
One of our endo warriors had this to say: “An emerg doctor acted like I’m faking my pain and instead of running some tests he told me “sometimes pain like this is part of life and you just gotta live with it” sent me home.”
Others have told me…
“You are just thinking too much”
“Nothing is wrong with you”
“Just take to Advil and you’ll be better” —-> prescribed painkillers are not even working for this pain.
I went to the emergency room as was told I was “ovulating” and to go home.
“Every woman has to deal with it. Stop complaining.”
Seriously, I get all women to have to deal with periods but don’t use that to belittle the struggle of endometriosis causes its so much more than just a heavy period.
Them: “If it hurts every month, shouldn’t you be prepared for it…like why does it still bother you?”
Me: “I’m going to start kicking your man junk really hard every day at 1:32pm…let me know when it stops hurting you just because you are expecting it”
This is another endo warriors story: “I was told because my friends girlfriend doesn’t have pain with her undiagnosed endometriosis (she’s convinced she has it and her doctor hasn’t done any tests to confirm) that I don’t have endometriosis because I’m in pain every day… and that’s not how endo works.”
We would be annoyed if we had to deal with this:
“I was majorly annoyed when I realized that my first primary disregarded my Endo symptoms when I was a child and so did my first OB and then I switched to my OB I have now and she knew immediately I was just a heavy cramper and to get me into surgery to figure it out. I just sat there in awe.”
So here it is. The goal is so that you know you aren’t the only one with endometriosis that has to deal with the lack of knowledge that doctors and loved ones seem to have. You would think we would come across more knowledgeable doctors and nurses at least then we would only have to deal with the loved ones who we hope mean well. Of course, as research deepens, the study is done, and clinical trials are completed there will be more that will take the time to learn.
While we wait for others to do their research, we applaud our endo warriors and encourage them to keep telling their story and educating others. Education is the key to understanding.