For me, endo belly represents one of the only seen symptoms of this invisible disease. It also seems to be the one least tethered to cause and effect. I talked to an endo expert to find out the deal with #endobelly.
Endo Belly causes me a lot of mental strife. I can be eating clean, exercising and taking my supplements, but look five months pregnant.
When I stumbled into the online endometriosis community, this was one of the first things that made me feel seen. I had no idea that other people were having this same kind of bloat. Use the hashtag #endobelly on instagram to immediately feel part of the sisterhood.
Following this discovery, I wrote an article about #endobelly for Health.com. The following is an excerpt from that article. If you'd like to read the full story on their site, there's a button at the bottom of this post.
Women Are Sharing Photos of Their Bloated Bellies to Reveal a Little-Known Symptom of Endometriosis
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.”
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.”
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.”
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.
And how do we get rid of it?
For more information, including tips on how to get rid of endo belly, read the full story on Health.com via the button below. Fair warning: they have an autoplay video on their site that will blast music as soon as the page loads.