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16 Photos That Show What Endometriosis Really Looks Like

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Though an estimated one in 10 women have endometriosis, far too few people know what it is and how difficult it can be to live with. Even when you try and explain how painful and life-altering endometriosis — which occurs when tissue similar to the lining of the uterus grows other places in the body — can be, you still might be met with “all women have cramps” or “you just need to toughen up!” It’s important that people realize how devastating endometriosis can be, so we can hopefully move closer to better treatments and, one day, a cure.

We wanted to reveal what life with endometriosis really looks like — and that just because many symptoms are “invisible,” that doesn’t make it any less painful. We asked our Mighty community to share a photo that shows what endometriosis looks like for them. Perhaps you’ll be able to relate to these endo warriors.

Here’s what our community shared with us:

1. “Me with my endo belly looking pregnant so one of my best friends Becca and I decided to do an impromptu maternity shoot. Got to laugh and smile through the pain and I’m so lucky to have the most amazing friends and family that help me shine bright through the worst of it all.” — Charlotte R.

two women with fingers forming a heart on one's stomach

2.Hot water bottle and TENS machine just to take the edge off the never-ending pain.” — Mya M.

womans stomach with heating pad and tens machine

3. “Took and posted this, not really for attention, but to show just a glimpse of what’s real and what we really go through. So many people think because you can’t see it, it’s not real. Our symptoms are very real, our pain is real, and it’s time more people see that. This was in the bathroom at work, five minutes before open, crying my eyes out. Not only was it a bad pain day, but my interstitial cystitis symptoms also decided to flare. I got no sleep. My symptoms are worst in the morning and I was going to be stuck alone for two hours. Meaning I couldn’t go to the bathroom when I needed to, which only makes my anxiety worse and therefore makes my symptoms worse. Endo is real, and it sucks.” — Lindsay H.

woman holding hand over her face

4. “On the left is what my stomach looks like when I wake up. On the right is after a long day on my feet teaching. It is very painful, and as someone who struggles with infertility, the bloating makes it that much worse. Once I get home from work, I am on the couch cuddled with my heating pad.” — Amanda C.

side by side photos of woman before and after swollen stomach

5. “Sometimes, it looks like this. Like there is absolutely nothing wrong, nothing out of place. It’s days like these that can make endo so misleading, and people wonder why I have to cancel plans last minute or choose not to go anywhere altogether some days. ‘What do you mean you’re not feeling well? You looked just fine yesterday!’” —

two photos of woman in snowy woods with a bird

6. “The multiple medications that I have for pain, anxiety, and anemia from my endometriosis. On a good day I take 22 tablets split into three doses; on a bad day the number can triple and taking something every two to three hours day and night.” — Kendra L.

collection of pill bottles

7. “Fatigue is a major symptom that often gets forgotten about. But not by me. This is me recovering from the exertion of traveling to and having an MRI. It wiped me out for days.” — Laura C.

woman lying on bed with eyes closed

8. “This is me, my husband and one of our great-nieces at another great-niece’s 4th birthday party, literally in my pajamas, a blanket, and not being able to pick up any of my nieces or nephews because I was two days post-op from laparoscopy where they removed endometriosis that was also in my belly button and did ovarian drilling for my PCOS. I was determined not to miss her birthday party. She may remember that I was sick, but at least she’ll remember that I was there.” — Audrey P.

woman and man with baby

9. “Always laying down. Keeps the area stretched out due to cramping.” — Jacqueline F.

woman lying down on couch, view of her legs

10. “Just had my third and hopefully final excision surgery. Endo was removed from my diaphragm, pelvic cavity, sigmoid colon, and bladder. I also had my gallbladder and appendix removed. I was very happy my doctors found it on my diaphragm and were able to remove it to give me a better quality of life. I am still recovering and even starting to sing again.” — Katelyn H.

woman lying on hospital bed

11. “I spend a lot of time in bed wearing mostly nightgowns since waistbands put pressure on my pain areas. Luckily I have two wonderful kitties who keep me company, but I’m kinda tired of spending so much of my life laying down.” — Amelia H.

woman lying on bed

12. “I got hit with a pain attack in Target and went straight down. My mum took this picture to show how severe and unpredictable these attacks are, and they happen multiple times every single day. She had to carry/drag me out and leave me on a bench while she went and got the car, while I tried not to scream my head off in a public place.” — Georgia T.

woman sitting on floor of target store

13. Submitted by Julieta R.: two photos of woman's stomach

14. “I have lived with endometriosis for 20+ years. This was taken on Saturday, day four of a hormonal cluster headache and was only made possible by my outright refusal to not let endo prevent me from enjoying another holiday weekend because I feel like crap.” — Laurie R.

woman jumping in the air under sculpture

15.This is how my children will remember me. Always laying down. Always watching from afar as they play. In this picture, I had a heating pad on my stomach, back and an ice pack on my neck from the muscle tension that goes up my back to my neck and aggravates my neck problems which usually results in a migraine. I hope my daughters never have to deal with the likes of endo. Or have to worry about their children wanting to play on Mommy and the excruciating pain resulting from it.” — Sadie L.

little girl and dog lying together

16. “Curled up in bed with Alfie Bear (in the Wonder Woman costume) and Sina Bunny, unable to move and completely exhausted by the pain from my endo. It’s that time of the month and I’ve passed out twice with the pain. It’s shooting through my back and my abdomen, and together with my other chronic pain conditions is making it impossible for me to move. Days like this are days when I wish I could just sleep through the pain. But it was another day of painsomnia and Netflix.” — Nat L.

person in bed with two stuffed animals

Originally published: June 1, 2018
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