I’m writing this as I lay in bed. In severe pain and swollen so badly that I can’t fit my clothes. Yep, I’m in the middle of an Endo flare. I feel like it’s best to write this while the feelings are all super fresh because I try to put it to the back of my mind and be as ‘normal’ as possible when the symptoms aren’t flaring up. Right now though, I’m in the thick of it so there’s no hiding from it. I want to share what it really feels like to get an Endometriosis flare because I wish I had someone talking about it when I was first having these problems. It’s so powerful to share our stories. I remember what it was like to have no guidance from Doctors and know something was wrong but not know what it is. It’s such a horrible feeling and by sharing this, I hope it can help others find their way to healing.
What It Really Feels Like To Get An Endometriosis Flare
Disclaimer
I’m not a Doctor. None of this is medical advice.
I am simply sharing my own story on what an Endometriosis flare really feels like for me.
Also, getting diagnosed with a chronic disease is rough. Get your mind right and build rock solid mental strength with my free one month guide of empowering affirmations for travelers with a chronic illness.
Hip pain
The biggest symptom that characterizes Endometriosis is chronic pain.
I believe people feel the pain in different areas, but mine is usually from hip bone to hip bone, and the worst is in my hip then shoots down my leg.
It kind of feels like being someone stabs me in the hip with a hot knife then drags the knife down my leg over and over again. Not that I know what that actually feels like but it’s just what I imagine.
And no, it’s not like period cramps. I get those too, and there’s a world of difference. They’re not even in the same galaxy when it comes to pain levels.
Mine is usually a lot worse on one side than the other too.
Exhaustion
This is a hard one.
It knocks me out hard.
There’s an overwhelming feeling of exhaustion when an Endometriosis flare strikes. It feels like every little thing is a marathon effort.
Even the most minor tasks like taking a sip of water feel overwhelmingly tiring.
It’s not the type of tired like ‘I stayed up too late watching Netflix and now I need a nap’ tired. It’s whole-body tiredness that’s different from anything I’ve experienced.
Brain Fog
This is the weirdest one.
When the flare-up hits, it really feels like my brain goes out the window.
I have trouble concentrating, slur my words, or forget what I’m saying mid-sentence. I generally just feel slow and like my brain goes to sleep.
It’s one of the trickier ones to deal with if you’re trying to work, in a meeting, or doing things like driving. That’s why I don’t like to do long drives or road trips alone.
Bloating
Urgh, the bloating struggle is real.
It hits hard and fast.
One minute you’re a regular size, and the next you look like Violet Beauregarde after she chews the three course meal gum at the Wonka factory.
My body gets super swollen around the jaw and neck area, abdomen, and my back. It swells so much that I’ll get deep welts from the clothes I’m wearing (that’s why you usually see me in flowy clothes).
I already have body dysmorphia from being overweight for so long, and this up and down of bloating that dramatically changes my size really messes with me.
Bloat life is real
Back pain
Back pain is another symptom that hits hard during an endo flare.
I always wondered if it was because the swelling gets so bad that my abdomen is so distended that it puts extra pressure on the back to keep myself up straight.
I don’t really know why it happens, but it just hurts and always comes with an overwhelming urge to need to lay down.
It just feels like it’s a marathon to keep my body upright. The only relief is lying down to take that pressure off my back.
Nausea
When I get an Endo flare, I usually just feel sick in the stomach. Not in the way that I feel like I’m about to vomit, but just enough to feel sick.
And I always lose any appetite. I feel like I could go days without eating because the urge to eat completely disappears. There have been many times when I have force-fed a meal just because it’s been a whole day or so without any food (or urge to eat).
General aches
Kind of like when you start getting the flu and you get that achy feeling in your body especially your shoulders and neck. I usually start feeling sore and like I need a massage to work out all the tension.
This is pretty minor compared with the rest of the symptoms, but worth mentioning nonetheless.
I don’t know if that helps or not, and maybe that’s way more info on my bodily functions than anyone ever wanted to know.
But I do hope it helps if you’re in the fight to figure out what might be going on with your body. If you feel things like these, maybe talk to your doctor about the possibility of it being Endometriosis.
No matter what, you’re not alone in any of this. There’s a lot of other people like me who feel your pain, know what it’s like, and send you lots of love.
1 in 10 women have Endometriosis and someone you know might be struggling with it.
Share this and someone in your feed might feel a little less alone.
I can relate with everything you described here.
Although instead of calling it brain fog, I call it “My Period Brain”. 😅
It’s nice ti read/know we’re not alone.
Yes absolutely agree that it’s nice to know we aren’t alone when going through this stuff. I wish others didn’t go through it also, but at the same time its reassuring in a way.
I always described my pain as an small, angry alien trying to rip its way out of my stomach but all it had was a rusted spoon. Overtime, it spread up my back and down to my knees.
What an accurate way to describe it!! Thank you for sharing that!
I needed to read this. I thought my symptoms were just…me making something out of nothing. But every month, I experience all of this. And it truly is debilitating and so hard to explain to my husband. I hope you find some pain relief soon and just know…you are not alone.
Exactly how I feel, and constantly feel like maybe I’m exaggerating or can’t handle pain I feel my family just doesn’t understand, it’s so hard to explain in a realistic way.
So hard to explain and be understood since you usually look so ‘normal’ from the outside. Urgh, I feel that.
Spot on description! Just coming down from a long endo flare. My bloating/Swelling was extreme and the exhaustion was horrible. I also get diarrhea and sometimes the endo flare triggers a fibromyalgia flare. That is starting now. Thanks for sharing everyone!
Oh no. I’m so sorry. Sending you lots of healing vibes.
Thanks for sharing !! Recently I was diagnosed by endometriosis which I was not aware for more than 10 years . I thought it will be “Periods” which is “Normal” (but now I came to know that it is not normal). Now I am in a situation where I am trying to figure out about my condition, gaining knowledge doing research. Thanks for all the details.
I relate to that so much. Hope you can be on the path to managing it now without as much confusion and pain.
I relate to this. I’m in bed right now, heavily bleeding with severe sickening pain and nausea. I slept 12 hours last night and still at tired. It’s hard
Oh yeah, it is so hard! I feel that!
I feel like I could have written this. I’ll have to write out my story sometime. You’ve given me inspiration to do so , thank you xoxo
As much as I hate knowing other people go through it, it’s also nice to not feel alone. Thank you for sharing!