What Does Endometriosis Pain Feel Like?

Woman lying on couch, holding heating pad to stomach, bottle prescription pain pills in the foreground next to a mug of tea

One of our local EndoSisters had a brilliant suggestion: have EndoWarriors describe, in physical terms, what their Endometriosis pain and symptoms feel like and share the responses with the world!

If you’d like to let the world know, please fill out this form below. Your email address, if you provide it, will remain confidential and shared with no one! (If you can’t get the form to work, contact me). And scroll down to read how other people describe their Endometriosis.

And here’s what we’ve received. Check back often for more entries!

Please note the verbiage of any submissions received after March 15, 2021, will now read: “1 in 10 people assigned female at birth suffer from Endometriosis…” thanks to a thoughtful correction from one of our Instagram followers.

Before my recent surgery, I would feel like I had shards of glass, razor blades, and barbed wire flowing through my intestines every time I had to poop.  Period cramps would squeeze my uterus in a tight vice.  My lower back always felt like it had been kicked by a horse. And the sharp pains that would just linger from time to time around my abdomen felt like a white hot fire poker was stuck in my side. Lisa, San Diego
Left hip feels like its been skewered by a railway spike, blader / vagina /uterus feels like they are being burned by a welding torch, feels like glass shards moving through my bowel with EVERY B.M., sciatic pain leaves my legs, hip, ankles & feet feeling numb, tingling AND in so much pain like they've been smashed to bits by a sledgehammer.  MamaBear, Nova Scotia
A heavy weight of low back throbbing. A thorny balloon, inflating and deflating in between my organs.  Sal, San Diego
It feels like my skin is on fire and I have thousands of bugs crawling all over me. I have a vise around my bladder, squeezing and squeezing, but I’m unable to pee. I can’t physically walk or stand up straight without feeling like my ovaries will pop like balloons. Just the smell of food makes me throw up.  I feel like someone is physically twisting and pulling my colon out with a pair of clamps and it wouldn’t surprise me if I look down and saw that I expelled my intestines. I have full blown labor pains and contractions, that don’t ease until I’ve passed a golf ball.  Tabitha, California
I would feel like I was having s baby dilated to 10 every month. Amy Jo, Michigan
It feels like a ripping, tearing sensation in slow motion - it burns and throbs with an intense cold and hot pain like someone is ripping a layer of skin or muscle out of my abdomen and down my inner thighs. When I feel it, I think of how it looks to pull the skin off of a piece of raw chicken before you cook it, or field dressing a deer - that’s what I imagine is happening inside my body, and this usually lasts for about 5 days each month.  Amy, San Diego, California
It's like rusty nails in a board and you put your foot on the board to steady yourself because all the nails need to be ripped out with that claw part. Since they are rusty nails they don't come out easy, they have to be wigged back and forth side to side. And just as you get one out it gets slammed back into your body again. And the nails are from your thighs all the way up over the navel. And your stomach is swollen hard not swollen like gas swollen or too much fluid but so swollen you cant wear underwear or clothes that touch the rusty nails. Anonymous, Western United States
A tiny person inside trying to claw it's way out, and having a zip tie around my ovaries that someone is constantly tightening. Andi, San Diego, California
Sharp pain that hits hard enough to make my vision go white with blinding pain. vomit inducing cramping to the point of passing out. Hot and cold shivering, muscle tremors deep aching in bladder, rectum , kidneys, etc. emotional swings from every five minutes to days to weeks causing Brain Fog.  Misty Joseph, Orange County, California
It's like my insides are connected by a spider web. And every move from walking to breathing causes everything to shift.  There's pressure then this shooting pain. It stops you dead in your tracks.  ~Betti, United States
It's like I've been blown up with a foot pump so nothing fits and I feel like I could pop, and then being stabbed in the ovary, hip and back of the leg with a very long hat pin from the inside.
Feels like someone is sawing my insides left to right. Sometimes it feels like my uterus is a balloon about to pop and the pressure is so intense I just curl up in a ball and try to sleep it off.  When I do get ahead of the pain and find relief, I find it's a dull numbness and my brain gets foggy, my nerves are extremely sensitive (especially my skin) and I am so fatigued.
When my flares happen it feels like a samurai double edged sword, dipped in fire and then thrusted into my right and left sides. Burning, stinging, stabbing pain.  Then the bloat feels like a balloon that someone keeps blowing until it can't get any bigger.  Then it hurts to touch. Those are bad days, "normal days" are thsoe that are not as bloated, stabbing pain without the heat feeling. Better daysh ave some pain off and on. Overall this disease is just awful and I wish there was a cure for it.
A gazillion needles poking my abdomen and lower back
Like an icepick was being jabbed or a nail was being hammered into my left hip.

I would have a good day and get up and do things, then be in searing pain for about three days following. I found out after surgery that my organs were cemented together by a white sheet of endo tissue. I was told each time I moved, the endo lesions would tear from my organs, taking organ tissue with it. So, in addition to the stabbing endo pain, I also felt like hot pokers were being shoved through my organs where the tissue was torn.

One time, the pain was so excruciating I was screaming and blacking out. I was taking 1.5 mg of dilaudid per hour at the time to manage the pain and IT WAS STILL THAT BAD.

Surgery left me with 52 areas of stitches internally, leaving internal scarification, plus the scar where I was stapled shut from belly button on down. It has taken years to learn to balance the inflammation problems just from that.
My pain feels like Someone is carving out my insides and turning up a dial on how much pain they decide I'm in today.
Burning in my hips that radiates down my legs, light headed, bloated, terrible bowel movements, feels like stuff is being pulled out of its place inside my body.  What’s ALMOST worse than the physical pain is the emotional side.  I’m Always worried about when I’ll start and how the pain will be; will I need to go to work/be able to go to work? Will I be able to care for my child? Will I faint?  Feeling like I’m crazy for having so much pain.  Getting in a rhythm with life (exercise, eating well, cleaning, taking care of my self, family, friends) then it all being interrupted every month with debilitating pain and the lingering recovery after the period ends.  The doctors and others who tell you “you’ll feel better when you have a baby”, “this is normal, periods are painful”, “there’s nothing wrong, everything looks fine.”
It feels like someone is taking a knife and stabbing me repeatedly in my abdomen. When it gets worse, it feels like the knife is being slashed down into my bowels and rectum. I even get “lightening pain” up my vaginal walls. The worse it’s ever gotten was when i was experiencing severe rectovaginal pain, and I couldn’t sit or stand. I had to lay on my belly and I just cried and asked god to take me back. My legs felt like a giant was squeezing them with his hands, and my back ached all the way up my neck. I wanted to rip the insides out of me and just replace everything, but I couldn’t. So I took 2000 mg of ibuprofen and smoked tons of weed to force myself to go to sleep. It took me 3 hours to fall asleep. It was horrible.
"When I’m not on my period, it feels like a giant hand pushing and squeezing my uterus. When I am, it turns into a whole other level. It’s debilitating, the kind of pain that makes you curl up in a ball and roll around because staying still hurts, but standing hurts, but sitting also hurts- basically anything hurts. The pain is like a chainsaw ripping through the internal organs, with one of those police flares constantly burning in my uterus. 

Long story short? It’s a *fun* time, and sometimes nothing (pain meds, positional changes, baths, etc.) gives relief. "
"
I have Endometriosis in my C section scar from a Cesarean in 2014. Apparently uterine tissue got involved in the incision and over time it has grown into an actual mass, and by suspicion, likely affected surrounding organs such as bladder, bowels and lower back. 
Every month on the day my period begins I have a burning sensation across my lower abdomen, in my skin like a hot iron is pressed against it. That lasts for the week of my period. Then the next week it is achey and stabby inside like my organs are attached to each other and my abdominal wall. Walking hurts, laying hurts, sitting hurts, standing hurts. There just isn't a way to escape these chains.
Then the next week, during ovulation, my stomach skin and scar are insanely itchy. Like a morphine itch that you can't actually scratch to relieve (but boy do I make a mess of myself trying 😏) 
And then I get a sense of relief for about a week.
Then the whole cycle starts all over again 🙄 

It affects my sex life, my bladder, my bowels, my lower back...and in turn, my demeanor and outlook on life.
It's absolutely debilitating. 

Anyway. That's my suffering. "
Feels like a litter of demonic alien babies with huge jaws and teeth trying to break out of my womb while there’s a bomb going off perforating my bowels.
Kicked in the stomach my insides being tied in a knot stabbing pain under/behind my ribs
At times my endometriosis pain feels like being stabbed over and over. Endo pain can effect the whole body from giving you a migraine to making it painful to walk.
Like stabbing and pulling and random stabbing in my pelvis.  Fun?  All that on top of the brain fog!  Ugh!
Like someone's wringing and twisting my ovary and uterus for the last 9+ years and docs are like "meh" when I tell them this fact.
My pain is very sharp stabbing pain that feels like I'm being finger fucked by Edward Scissorhands. It's crippling and debilitating and makes me cry out in pain
Trampled. Punched under my ribs. One hundred crunches. Lightning up the bum. Suddenly glass is moving around my bowels. Burning urethra. Rectal spasm. Kicked in the back. Random knife attack in my pelvis that ibuprofen and codeine can barely touch. Can't stand up straight. Bowel movement ripping me apart from the inside. Scared of my own body. Tired.
Dull back ache that is like someone stamping on my lower back. Tiredness, dizzy anxiety spells. Quite often I feel overwhelmed by the pain and often this comes with sadness and a low feeling of not feeling fit enough to do daily tasks. Endo is a black cloud I try to shift through . It’s more than pain, it’s a daily mental marathon.
My uterus is an overinflated water balloon that is ready to pop, and it feels like my insides are being raked out with a fork from both ends.  My ovaries throb with every sneeze, the room spins a little and I have weak knees. The depression and inability to function paints me.
It feels like someone has strapped iron chains with spikes around my ovaries and uterus and continuously yanking on it to pull it out but it does not come out.
Like someone let a school of piranhas loose in my guts. Alternately, like my innards got glued together with Gorilla Glue and someone is trying to separate them with herculean force.
"It feels like I ate a bag of nails or razor blades that I can feel make it's way through my entire digestive system.  

It feels like someone is stabbing me in the the rectum or vagina with a knife when sit. 

It feels like I've been impaired with a rod from my flank to my butt. 

It feels like I'm in one of those movies where the lead character can see the problem but noone else around them does. They spend the whole movie trying to scream the truth and everyone labels them as crazy. In the end they find the solutions themselves. 

It feels like screaming into a void. 

It feels like I'm trapped in an alternate  reality. I tell my doctor I can't eat, work, focus, socialize, or function as the pain and symptoms get worse. She responds, "" just get pregnant! You'll feel great!"" Or "" let's talk about antidepressants again"". 

I ask and what if I still feel this way through and after the baby arrives? She responds, "" Mothers find a way. You'd be surprised what mothers can do."" 

It feels like watching people post about mental health for Bell every year  but when i mention the endo pain or meds making me have suicidal thoughts, the same people respond, ""Don't talk like that!"" , ""just think positive!"" ""Dont be so negative!"" Even my doctor simply responded that the medication doesn't do that. Then never offering support services or following up with me about it. "
It feels like being stabbed over and over in random areas of my body. At my worst before my last two surgeries I couldn't eat. Food felt like digesting a bag of razor blades as it worked through my body. 
 ---- 
It feels devastating, isolating and lonely. 
I have lost my career or had to change careers multiple times because my body is unreliable. Which makes ME look unreliable. It has effected all my relationships with friends and family because I cannot keep up socially and mostly because people do not understand the severity of the condition. 
---- 

It feels hopeless most days.

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