Women Are Sharing Photos of Their Bloated Bellies to Reveal a Little-Known Symptom of Endometriosis

They're calling it #endobelly—and it's emotionally and physically painful.

Endometriosis bloat—known as #endobelly—is one of the most odious endometriosis symptoms. On any given day, the lower abdomen can swell, setting off physical and mental anguish. The bloating can stay for days, weeks, or disappear after a few hours.

You might think bloating is a normal part of every woman’s cycle, but this is not normal bloating, and endometriosis is not a normal cycle.

“Women in the general public may get bloating a day or two before their cycle,” says Karli Goldstein, DO, consulting surgeon and medical advisory board member for the Endometriosis Foundation of America, “but endometriosis bloat can be more drastic and persist longer.”

Endometriosis is a disease where uterine tissue begins growing on other parts of the body. The tissue still behaves as if it’s in the uterus, so when your period comes around, these cells bleed. But since they’re in the wrong spot, the blood is stuck inside your body—and it’s incredibly painful.

Endometriosis is thought to affect 11% of women between 15 and 44, according to the U.S. Department of Health and Human Services. It was also one of the most searched health topics of 2018, so this likely isn’t the first time you’re hearing about it. Endo belly, on the other hand, is just gaining more attention as women are commisterating about this often-underplayed symptom online.

Endo belly typically gets worse as the day goes on. “Frequently, patients will be fine in the morning, and it will get bigger and bigger until the evening, when they can’t button their pants,” explains Dr. Goldstein, who has stage IV endometriosis herself. “You can look six months pregnant by the end of the day.”

Endo belly
Courtesy of a href=

Beyond this physical discomfort, endo belly is also emotionally troubling.

For starters, since endometriosis can make it difficult to conceive, looking like you’re in your second trimester can feel like a cruel side effect. Plus, there can be body image ramifications. Women with endo are told to eat healthy, exercise frequently, and maintain ideal body weight to help with their symptoms, so when an endo belly surges forward, it can feel frustrating, upsetting, and demoralizing.

As Kellie Renee put it in an Instagram caption, “This is what anxiety, body image mind f*cks, and hurting to breathe looks like.”

Kellie endo belly
Kellie Renee

Kellie Renee

Healthy lifestyle habits are crucial, Dr. Goldstein says, but not always easy. “It takes a multi-team and system approach to feel your best. You have to work harder at these things than family and friends. Even with surgery, you can’t slack on all the other aspects afterwards or you will feel crummy.”

So why does endo belly occur?

“We don’t know the exact reason why it happens,” Dr. Goldstein says. “There have been multiple studies, but there’s no good proof. Even though you can see visibly something’s happening, if we do a CT scan, there’s not really a tangible, finite reason it’s happening. It’s very frustrating for patients.”

Endometriosis is a complex disease, and it affects each woman differently, but there are two theories as to what causes bloating in endometriosis. The first is that endo belly accompanies a menstrual period. When endometrial tissue growing on other organs thinks it's time to menstruate, women begin bleeding internally, and the body gets inflamed. Hello, endo belly.

The second theory is that endometriosis patients can be more sensitive in regards to how their intestines and gut process things, Dr. Goldstein says. Endo belly could be a side effect of the intestines working overtime, she says.

Samantha endo belly
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This is one reason why anti-inflammatory diets are consistently recommended for endometriosis patients, Dr. Goldstein says. However, there’s no one diet for endo, she stresses. “You have to see what’s best for you and what you react to.”

Sarah Devens found she reacted to dairy and has since cut it out of her diet. She tells Health she eats as clean as possible, but after a couple incidents of milk sneaking into her food, she woke up to this:

Sarah endo belly
Sarah Devens

How can you get rid of endo belly?

Since there’s no official stance on what causes bloating with endometriosis, there’s no official cure. But there are some techniques worth trying that may help soothe your symptoms. Here’s what Dr. Goldstein recommends.

See an endometriosis specialist. Make sure your endo is being managed before tackling your bloating. “A lot of our patients, after having quality excision surgery, report that their bloating is better."

Get a referral for a dietitian. “You need to find someone who will holistically work on the body and your reactions to different things,” Dr. Goldstein says. “Find someone open-minded.” Ask your endo specialist for a recommendation.

Try an anti-inflammatory diet. The best way to find your version of this diet is to start with an elimination diet, slowly add things back in, and note when endo belly pops up. Eliminate those foods going forward. Your dietitian can help you through this process.

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