Article written by
Nyaka Mwanza

Uncomfortable, painful, embarrassing. These are words MyEndometriosisTeam members use to describe the extreme swelling and bloating they experience as part of life with endometriosis. “Endo belly,” as it's sometimes called, is a symptom of endometriosis that often goes unmentioned. Endo belly causes a great deal of both physical and emotional pain for a majority of the nearly 6.5 million women living with endometriosis in America.

Endometriosis is thought to affect 11 percent of reproductive-aged women (15 to 44 years old). It is a painful, chronic condition wherein tissue similar to the uterine lining implants outside the uterus. This errant endometrial tissue, referred to as implants, nodules, or lesions, causes scarring and inflammation. Other symptoms of endometriosis include chronic pain, infertility, and bladder, bowel, and gastrointestinal complications. Endometriosis symptoms tend to worsen during menstruation, but they’re not limited to only the time of menses.

Endometriosis usually occurs in the pelvic region — on the outer uterus, fallopian tubes, ovaries, bladder, and pelvic floor. It can also affect the bowel and sciatic region, though that is less common. In very rare instances, endometriosis affects the liver, diaphragm, lungs, brain, and central nervous system.

What Does Endo Belly Feel Like?

The pain of bloating from endometriosis ranges from uncomfortable to debilitating. It can feel like pressure in the stomach or lower back, and it can cause visible swelling that may make a person look pregnant. Endo belly may make a person feel self-conscious and contribute to poor mental health and lowered self-image. These are some ways MyEndometriosisTeam members describe their experiences with endo belly:

• “I look like I’m pregnant again. It always comes with pelvic pain and pressure, and I am always bent over in pain. … Mine always lasts two days, then goes then back down again.”
• “I almost look three to four months pregnant. I have skinny legs, so it’s so noticeable.”
• “I feel like my weight is all in my big bloated belly and even if I drop it, it still looks swollen, or I look pregnant all the time.”
• “My pain and endometriosis belly hurt at around the same time as when I would normally get my period when I had one.”

What Causes Bloating in Endometriosis?

Extreme abdominal bloating or swelling affects almost 96 percent of people living with endometriosis. Endometriosis-related bloating can last for hours or for months. There are several reasons endometriosis causes bloating.

• Endometriosis can cause inflammation in the abdominal area, which can result in swelling, water retention, and bloating.
• When endometrial tissue attaches to the ovaries, it causes ovarian cysts to develop and may cause or worsen bloating.
• Gastrointestinal issues, such as constipation and gas, are a common result of endometriosis.

For some members of MyEndometriosisTeam, endo belly flare-ups are linked to menstruation. “I can always tell when I am supposed to be having a period because, even though I don’t typically bleed, I bloat worse than usual and have horrible cramping,” one member said.

For others, the discomfort of extreme bloating and a visibly protruding stomach is a constant. “I’m tired of endo belly, endo pain, endo everything!!!! It’s taking over my life. I’m about to have a hysterectomy because I have stage 4, and it seems like my body is just deteriorating. I can’t take it any longer,” another member shared.

It’s important to get to the bottom of what is causing the bloating. Endometriosis might not be the only thing to blame. Gastrointestinal issues like ulcerative colitis, food sensitivities, and irritable bowel syndrome (IBS) affect people with endometriosis at higher rates and may be to blame for the bloating.

How Do MyEndometriosisTeam Members Manage Endo Belly?

Over 13,500 members of MyEndometriosisTeam report experiencing abdominal bloating from endometriosis. The symptoms of endo belly are primarily treated through medication and dietary changes. One can reduce the frequency and severity of endo belly flare-ups by managing the underlying condition: endometriosis.

Managing the Pain

Pain is the most common symptom of endometriosis. It varies in severity and duration, depending on the endometriosis symptoms each person experiences. Living with endometriosis often involves managing a lot of painful symptoms, like endo belly. Pain medications range from over-the-counter pain relievers like Tylenol (Acetaminophen) to powerful opioids available only by prescription — such as Codeine, Ultram (Tramadol), and Percocet (Oxycodone/Acetaminophen).

Hormone therapy is also used to treat pain associated with endometriosis. Some complementary approaches, such as acupuncture, hypnosis, massage, mindfulness meditation, and yoga, may also help manage the chronic pain associated with endometriosis.

Sometimes, the only way to ease endo belly pain and discomfort is to rest. Soak in the tub; then put on some loose-fitting clothes, plug in that electric heating pad, and lie down for a while.

One MyEndometriosisTeam member said, “Hot baths, heating pads can help, but I’ve found the most relief from an anti-inflammation diet. No dairy, alcohol, processed foods, white sugar, gluten, or red meat.” Another member suggested herbal teas: “Linden flower helps, raspberry helps, and they even have chocolate tea now. You could try medical marijuana edibles for pain. And obviously, the heating pad always works for pain.”

Following an Endo-Friendly Diet

There’s evidence to suggest that an anti inflammatory diet or a low-FODMAP diet may decrease the occurrence and severity of endometriosis symptoms, including endo belly. A healthy, balanced diet rich in nuts, fresh fruits and vegetables, and seafood is recommended if you are living with endometriosis. In contrast, dairy, sugar, gluten, caffeine, and alcohol appear to worsen endometriosis symptoms.

Some MyEndometriosisTeam members have found relief by avoiding foods rich in sugars, carbohydrates, processed foods, alcohol, dairy, and caffeine. One member said, “Following the endo diet helps my endo belly. Basically I avoid dairy, gluten, red meat, and sugar. When I break my diet, I look 8 months pregnant!”

Another member raved, “I cut out sugar from my diet. Nothing I eat has added sugar in it. I cannot begin to tell you how much better I feel. My head is clearer and my belly is so much better!! I feel more like myself than I have in years. I have limited gluten, but not eliminated it entirely. I don't eat bread and pasta. … Naturally occurring sugars are OK, but nothing added.”

Beverages can also make a difference in endometriosis symptoms. “I don't drink anything carbonated or caffeinated; if I do I bloat very quickly,” a MyEndometriosisTeam member shared.

Drinking peppermint tea or ginger tea can relieve digestive issues and pain. “Peppermint tea helps with the uncomfortable sensation, not sure if it brings down the bloat,” one MyEndometriosisTeam member said. Increasing fiber intake to prevent constipation and avoiding foods that lead to excessive gassiness can also help lessen the effects of endo belly.

If you have abdominal bloating that’s painful, frequent, or persists more than a few days, you should talk to your doctor. Also contact your doctor if your abdominal bloating is accompanied by severe stomach pain (especially after eating), blood in the stool, high fever, vomiting, or unexplained weight loss.

When you join MyEndometriosisTeam, you’re connected to more than 107,000 members who understand what it’s like to live with endometriosis. Endo belly and bloating are frequently discussed topics.

Here are some conversations on MyEndometriosisTeam about endo belly:

• "I keep getting swelling in my abdomen that makes me look pregnant. It hurts and feels like my skin is going to burst."
• "Does anyone else get endo belly after having had a hysterectomy?"
• "Is there something you can wear that helps with endo belly?"

Have you experienced endo belly? Have you found anything that helps you feel better? Comment below or start a conversation on MyEndometriosisTeam. You'll be surprised just how many others have similar stories.

References

1. The “Endobelly” Bloat — A Symptom of Endometriosis? — The Center for Endometriosis Care
2. Endometriosis Association
3. Endometriosis Foundation of America
4. Endometriosis Research Center
5. What Is Endometriosis? — EndoWarriors: Support for Women With Endometriosis
6. How Eight Women Manage Their Endometriosis Bloat — SheKnows
7. Endometriosis — Office on Women’s Health
8. Chronic Pain: In Depth — National Center for Complementary and Integrative Health
9. About Endometriosis — National Institute on Child Health and Human Development
10. Foods That Fight Inflammation — Harvard Health
11. FODMAP Diet: What You Need to Know — Johns Hopkins Medicine
12. What to Eat and What to Avoid if You Have Endometriosis — SheKnows
13. Check Please! The 10 Foods Endo Women Should Avoid — Endometriosis Foundation of America

Nyaka has worked with large global health nonprofits focused on improving health outcomes for women and children. Learn more about her here.