Trigger warning: I briefly discuss my history of orthorexia, including restrictive eating and rigorous exercise patterns, in the introduction to this post. If this is a difficult subject for you, feel free to skip the intro and jump straight to the good stuff, starting at the first subheader!
My endo belly and I have a complicated relationship.
I first began needing medication for period cramps at age 12, which I now consider to be the age of onset for my endometriosis. By age 13, I noticed for the first time that my belly wasn’t “flat” like my friends’ tummies were. But because I didn’t know I had suspected endo, and didn’t know the difference between being bloated and having belly fat, I thought that the way to get a flat belly was through diet and exercise.
What started off as an innocent attempt to feel more confident in my bathing suit quickly spiraled out of control. As I subscribed to the dogma of fitness influencers on YouTube and Instagram, I became more and more restrictive with what I allowed myself to eat. I forced myself to exercise every night, even on days I took dance class — because I didn’t think that my dance practices “counted” as a workout.
Unsurprisingly, no matter what I did, my belly would not shrink. It took me years to make peace with my body and accept that its shape was out of my control. Even once I discovered intuitive eating and began healing from my eating disorder, however, I didn’t recognize the connection between my belly and bloating until college, when I started having horrible GI symptoms that essentially prevented me from eating most foods. For a few months, my diet subsisted of iced coffee with almond milk, bananas, yogurt, plain sourdough toast, and gluten-free pasta — because that’s all I could stomach at the time. Unintentionally, I lost over 10 pounds in a matter of weeks and became underweight.
The word “bloating” brings up complex emotions for me, as it does for many of us. I agree that it’s normal to get bloated from time to time. The cultural obsession with having a “flat belly” has diet culture written all over it (especially given that biological females carry more belly fat to support a healthy pregnancy, and have organs in the abdominal cavity that biological males do not). Many of us use the phrase “I feel bloated” as a more socially acceptable substitute for saying “I feel fat” these days. I also agree that many people confuse feeling bloated with feeling full, and use bloating as an excuse to restrict their diet and enjoy the addictive feeling of an empty stomach.
As someone with a history of disordered eating, I say all of this without judgment — because I know that most people don’t intend to make others feel bad or to discriminate against fat bodies by making these kinds of statements or by getting caught up in diet culture. I simply cannot talk about bloating without acknowledging that “gut health” has become diet culture’s newest fad. As an ED-recovered endo patient, I feel the need to distinguish between bloating in that context, and bloating in the context of endometriosis.
For endometriosis patients, getting better gut health isn’t code for getting skinny. When you look at pictures of endo belly online, you can see right away that this isn’t the type of bloat the magazines are talking about. Having endometriosis means I have a permanent belly bulge that is hard and painful to the touch, and endo belly — the extra-severe bloating that often accompanies an endo flare — is painful distension of the stomach that at its worst, has made me look nine months pregnant and feel like a balloon about to pop.
In my recovery from orthorexia and my journey toward a confirmed endo diagnosis, managing bloat is no longer about having a flat belly, but about preventing painful endo belly from controlling my life. In this post, I go into greater detail about what endo belly actually means, and how you can combat bloating associated with endometriosis in your everyday life, without offering restrictive diet tips that ask you to cut out entire categories of foods.
What Causes Endo Belly?
Did you know that 90 percent of patients with endometriosis present with gastrointestinal symptoms as their first concern? As someone who was taught that period pain was “normal,” this was certainly true for me. Though my period cramps had been unbearably painful since I was 12, I did not seek medical care until I began experiencing alternating bouts of constipation and diarrhea, near-constant bloating, and nausea that left me unable to eat almost anything.
We know that endometriosis affects our gut health. Unfortunately, endometriosis research is terribly underfunded, meaning we don’t know much about exactly how this disease impacts the gut. However, there have been a couple of important conjectures by researchers in recent years. Hypotheses include irritable bowel syndrome (IBS), small-intestinal bacterial overgrowth (SIBO), increased intestinal permeability (“leaky gut syndrome”), and general gut dysbiosis. I’ll go into greater detail about each of these potential causes of endo belly below:
Irritable Bowel Syndrome (IBS)
Irritable bowel syndrome, or IBS, is a functional disorder characterized by bloating, abdominal pain, and changes in gut motility (i.e. constipation or diarrhea). These symptoms are brought on by eating and relieved by having a bowel movement. A 2018 study found that the prevalence of IBS is higher in women with endometriosis than women without endometriosis. The problem with the data is that we don’t know if more people with endo have IBS, or if they are being misdiagnosed with IBS because of the GI symptoms caused by their endo lesions.
IBS is supposed to be a diagnosis of exclusion, meaning that doctors should rule out all other causes before settling on a diagnosis of IBS. In my case, the gastroenterologist I saw ruled out other gut conditions — namely celiac disease and inflammatory bowel disease (IBD) — but did not consider that my symptoms could be caused by my reproductive tract. Many medical professionals agree that the Rome Criteria used to diagnose IBS is arbitrary and that doctors often do not take the time to fully evaluate their patients’ symptoms before assuming they have IBS. Personally, I have found that doctors seem to use IBS as a catchall diagnosis to categorize any patient whose GI symptoms cannot be easily explained.
Unfortunately, because symptoms like bloating, constipation, and diarrhea suggest gut pathology, a primary care doctor will usually send you to a gastroenterologist rather than an OB/GYN for these symptoms. Because gastroenterology is a highly specialized field, they may not consider diagnoses outside their window of expertise. In my experience, no GI doctor has ever asked me a single question about my menstrual periods. I fully believe that adding this simple screening question to GI exams could help more doctors identify patients at risk of bloating due to endometriosis.
Small Intestinal Bacterial Overgrowth (SIBO)
Small intestinal bacterial overgrowth, or SIBO, refers to an imbalance of the “good” and “bad” bacteria living in the small intestine. Bodily conditions like prolonged antibiotic use or chronic inflammation (such as that caused by endometriosis) can kill off your “good” bacteria, which help keep the “bad” bacteria in check. As a result, “bad” bacteria proliferate in the small intestine, leading to symptoms like bloating, nausea, and early satiety.
SIBO frequently occurs alongside endometriosis, probably because the chronic inflammation associated with endo creates prime conditions for “bad” bacteria to multiply in the gut. One study diagnosed 40 out of 50 endo patients (whose endo diagnoses were confirmed by laparoscopy) with SIBO. Like endometriosis patients, people with SIBO are often misdiagnosed with IBS by doctors who are unfamiliar with the condition or unwilling to do the proper testing. Some estimates say that as many as half of IBS patients may actually have SIBO — which is problematic, considering that treatments for IBS (such as dietary changes) do not eliminate SIBO.
SIBO is usually treated with antibiotics. However, if the underlying causes of SIBO are not addressed, it is likely that the “bad” bacteria will multiply again, leading to a recurrence of symptoms. In the case of endometriosis, this means that laparoscopic excision surgery is necessary to eliminate as much inflammation due to endo lesions as possible. Additionally, lifestyle changes like adopting an anti-inflammatory diet and taking probiotic supplements can support the growth of healthy bacteria in the gut.
Leaky Gut Syndrome
These days, lots of people are talking about increased intestinal permeability, or “leaky gut syndrome.” The walls of the intestines are thin, meaning that they become easily inflamed by conditions like endometriosis. When the intestinal walls inflame, proponents of leaky gut syndrome believe that food particles are able to pass through the gut into the bloodstream. There, these particles are attacked by the immune system as if they were foreign bodies, leading to widespread inflammation.
The “diagnosis” of leaky gut syndrome has attracted polarization in the medical community. Doctors have found increased intestinal permeability in patients with inflammation of the gut — such as Crohn’s disease patients — but in this context, increased intestinal permability is treated as a symptom, not as an independent diagnosis. One doctor at the University of Tennessee found that 100 percent of her patients with increased intestinal permeability also had a history of endometriosis. However, this study only assessed 25 patient samples, and was funded by the Endometriosis Foundation of America (click here to read my Instagram post documenting some of the problems with them), who does not publicly disclose their donor list — currently, clicking on their “Our Supporters” page brings you to a 404 Page Not Found warning. As a result, we don’t know if EndoFound or any of its donors may have benefitted from research “proving” that leaky gut is linked to endometriosis, so we can’t say for certain if the research is unbiased.
The other major problem with the “diagnosis” of leaky gut syndrome is its intricate link to diet culture. Sadly, “functional nutritionists” are often proponents of radical, extreme diets. “Treatments” for leaky gut syndrome often include adopting restrictive diets that cut out all sugar, including the natural sugars found in fruit and yeast. Fruit in particular has documented benefits for gut health; it is a source of prebiotic fiber, which feeds the “good” bacteria living in your intestines. Patients who adopt these diets for SIBO frequently report feeling better rapidly, leading many to speculate if the benefits are due to the placebo effect — or simply due to eating healthier, less-processed foods, as such a restrictive diet requires.
Many doctors advocating for greater awareness of leaky gut syndrome have written their own diet books dictating what patients should or should not eat, meaning they profit from the sale of the leaky gut “diagnosis” to vulnerable populations. They shamelessly use the words “weight loss” in the marketing of their products — see Fiber Fueled by Dr. Will Bulsiewiscz (“the gut health MD”) and The Plant Paradox by Dr. Stephen R. Gundry. In other words, it’s highly likely that the “leaky gut” diagnosis is little more than diet culture in disguise, though there is preliminary evidence linking the symptom (read: not diagnosis!) of increased intestinal permeability to endometriosis.
“Dysbiosis” means, simply, an imbalance of bacteria somewhere in the body. Even “good” bacteria, or the bacteria normally found in our microbiome, can cause problems when it grows unchecked. In endometriosis patients, dysbiosis has been found both in the gut and in the genital tract, explaining why endo patients often experience both GI symptoms and recurrent vaginal infections. Gut dysbiosis can lead to GI symptoms like constipation, diarrhea, gas, and bloating, as well as psychological symptoms like depression and anxiety, yet — like increased intestinal permeability — it is not a diagnosis in and of itself.
According to research, patients with stages III and IV endometriosis appear to have more Shigella and Escherichia bacteria in their gut microbiome than the average person. These species normally live in our gut in small numbers, but can become pathogenic when they proliferate. In the case of GI symptoms linked to endometriosis, it’s possible that the threshold of Shigella and Escherichia lies somewhere between “normal” and “pathogenic,” leading to chronic symptoms rather than acute illness. It’s important to acknowledge that the study is preliminary and notes that more evidence is needed before we can definitively determine if this dysbiosis is a cause of endometriosis.
We are still understanding the relationship between the gut microbiome and many areas of health, including our reproductive health. As we learn more, new treatments based on harnessing the power of the gut may become available for diseases like endometriosis. Right now, what we do know is that what we eat directly influences our microbiome. The best advice for managing suspected gut dysbiosis is to maintain a gut healthy diet, rich in whole foods and probiotics.
How to Manage Endo Belly
The best way to treat bloating is to identify its root cause and eliminate it. For endo patients, this means laparoscopic excision surgery to treat endometriosis. If SIBO or another gut disorder is contributing to your endo belly, your doctor will also need to treat that condition as well. The low-FODMAP diet for IBS, the antibiotic Rifaximin for SIBO, and probiotics for gut dysbiosis are just a few examples of treatments specific to conditions affecting the gut.
Regardless, it’s important to promote good overall gut health, too. Creating the ideal environment for your healthy gut bacteria to thrive supports your system as it heals from the damage inflicted by SIBO, dysbiosis, and/or endometriosis. If we’re being honest, your endo belly will probably never disappear, but you can at least learn to manage it so that it no longer controls your life. Here’s how to decrease pain and bloating associated with endo belly while awaiting laparoscopic excision surgery:
A 2002 study found that rhesus monkeys with endometriosis had altered gut microbiomes, with more Gram-negative bacteria and fewer Lactobacillus strains. Lactobacillus is a genus of “good” bacteria found naturally in the gut microbiome and the vaginal flora. Supplementing with high-quality Lactobacillus probiotics encourages Lactobacillus to flourish in the gut, allowing it to play its natural role in supporting healthy digestion. And, bonus: a clinical trial also found that Lactobacillus probiotics decreased endometriosis patients’ overall pain levels.
But not all probiotic supplements are created equal. Firstly, probiotics need prebiotic fiber to thrive. Prebiotic fiber feeds “good” bacteria like Lactobacillus, allowing it to take hold in the gut. Secondly, you need the right dosage of probiotics to get the most benefit. Even freeze dried or acid resistant strains of bacteria are often dead by the time they reach the gut, preventing them from having any long-term benefit. Making sure your supplement contains at least one billion colony-forming units (CFUs) of Lactobacillus so that you are getting as much live bacteria as possible.
My favorite probiotic supplement is Ora’s Vegan Probiotic Capsules with Prebiotic Fiber. They are a little more expensive than many probiotics, but the best I have tried so far. I like them because the capsules do not use gelatin (I am a vegetarian) and they contain at least 16 billion CFUs of six different strains of bacteria. Since starting to take Ora probiotics, I have had a consistent bowel movement after almost every meal — which, speaking as someone diagnosed with constipation-type IBS, is saying something! The $35 price tag is definitely worth the investment for good gut health.
It’s important to acknowledge that there is no such thing as a single “gut healthy diet” that everyone should follow. Anyone who tries to sell you the promise of better gut health in 30 days, or of losing weight “the gut healthy way,” is selling you diet culture — a.k.a. straight B.S. Eating a gut healthy diet (read: “diet” as in “what you eat every day,” not as in “fad diet”) isn’t about how many calories or macros you eat in a day. Instead, it’s about making the conditions inside your body as optimal as possible for the reproduction of healthy bacteria like Lactobacillus.
What we eat plays a huge part in the diversity of our gut microbiome. The traditional “Western diet” (think: sugary cereals, takeout pizza, deep-fried anything) promotes the growth of only certain types of bacteria — the kind that thrive on high levels of sugar and fat, and low levels of fiber. The lack of diversity in the Western diet gives way to a lack of diversity in the gut microbiome as well, promoting the growth of “bad” bacteria that causes inflammation. Endometriosis, too, causes inflammation — so as you can imagine, endometriosis paired with poor nutrition is a match made in hell.
The most important thing you can do for your gut health is decrease the amount of processed foods, meat, and dairy you eat, and increase the amount of plants in your diet. I’m not saying you need to cut out sweeping categories of food to obtain good gut health — you know I’m not about restrictive diets — but you should at least increase the amount of plant-based foods in your diet, which in time will give way to moderation in the other categories. Why plants, you ask? Plant-based foods like fruits, vegetables, and whole grains act as prebiotics. In other words, the healthy bacteria in your gut can break down the fiber in these foods to use as fuel, encouraging them to multiply.
When choosing what to put on your plate, also think about the diversity of foods you eat. Are you eating fruits and veggies in every color of the rainbow? Do you choose dishes from all four corners of the world? The more diverse our diets are, the better our bodies can support a wide array of healthy bacteria — so don’t be afraid to mix a colorful array of plant-based foods with organic dairy, omega-3 rich fish, and grass-fed meat (if that’s your thing). Eating probiotic foods like yogurt, kefir, sauerkraut, and kombucha can help, too. Just make sure that no matter what you eat, you make at least half your plate fruits and vegetables (most of the time) to ensure you’re getting all the fiber you need to support your gut microbiome.
I know, I know: as someone with a chronic illness, you’re probably sick of being told that “drink more water!” is the answer to your prayers. I’m not saying hydration will cure your endometriosis, but it may reduce the severity of some symptoms — like bloating. When you are dehydrated, your body will compensate by holding onto excess water. Electrotlyte imbalances resulting from dehydration can also slow digestion, meaning you may become constipated. These effects can make you look and feel even more bloated than your endo already does.
If you feel dehydrated even though you think you’re drinking plenty of water, there are two possible solutions:
Firstly, you might be misjudging how much water your body actually needs — meaning you might feel like you’re drinking enough, even though you’re actually not. At minimum, experts suggest you should drink 0.5 ounces of water for every pound that you weigh. To easily calculate out how many ounces of water you need to drink per day, simply divide your weight in pounds by two — for example, if you weigh 150 lbs, you should drink 75 ounces of water every day. To
Secondly, even if you’re drinking enough water, you might feel dehydrated if you’re eating too much salt. Ever feel extra thirsty after eating an order of french fries? Then you’ve probably witnessed the effects of a high-sodium diet on hydration firsthand. Sodium plays an important role in maintaining water balance in our cells. Your body needs salt to maintain this delicate balance, but eating too much can cause your body to hang onto excess water, exacerbating bloating and making you feel dehydrated. The average American eats about 3,400 milligrams of salt per day. Decreasing your salt intake to no more than 1,150 milligrams per day can help you debloat, while also preventing heart attack and stroke.
These healthy habits can prevent bloating, but what about when you’re already having a flare-up of endo belly? What should you drink then? Personally, I find that drinking warm water with lemon or a hot cup of tea when I am painfully bloated helps me feel better. You may want to stick to decaffeinated beverages over caffeinated ones, as caffeine can lead to dehydration, too. Professionals also recommend sticking to flat over carbonated or sparkling beverages when you’re bloated, as the CO2 in these drinks can push excess air into your stomach, leading to painful distension.
Love Your Endo Belly!
As important as it is to promote a diverse gut microbiome, perhaps the most important thing I ever did for my health was learn to love my endo belly. In the endo community, we talk a lot about treating and reducing bloating with probiotics or a healthy diet, but not about learning to be okay with your endo belly. Endo belly is always presented as something to “fix,” “fight,” “conquer,” or “manage.” Don’t get me wrong: a bloated, painful, distended belly shouldn’t be something you need to put up with for the rest of your life. But neither should you let it completely derail your life, the way that I did as a teenager. You can learn to love your endo belly, as impossible as that sounds.
In high school and college, I spent so long obsessed with shrinking and flattening my endo belly that I developed disordered eating. The doctors had yet to suspect endometriosis, so I didn’t understand why dieting and exercising wasn’t “working” to flatten my bloated belly. I continued to make my diet more restrictive, my exercise more intense to compensate. Little did I know that my body wasn’t the problem: endo was — and excision surgery, not dieting, was the only cure. My disordered eating may be gone, but my negative body image and low self-esteem persist to this day. They are demons I continue to fight, in therapy and every time I look in the mirror. If I can leave you with anything, let it be this: your belly is perfect just the way it is. You do not need to put up a constant fight to change it, especially when you are having a flare (as tends to be the case during a painful bout of endo belly).
Self-love and body positivity — especially with a chronic illness — takes hard work, and lots of practice. You can start by choosing one of these quick body-positive activities to do today, and build up to the habit of practicing self-love every day. Here’s the list:
- Think of the person you admire most in this world. Think of everything you admire about them and realize: you probably don’t admire them for their appearance, do you? So, why should you judge yourself by yours?
- Name five things your body does for you that you are grateful for — functions it performs for you that have nothing to do with what it looks like. I’ll start you off: your body instinctively breathes for you, so you don’t ever have to think about it.
- Practice a body-scan meditation. Get in touch with the sensations in your body, as it is in the present moment.
- Write a letter to your endo belly. Forgive it. Apologize for trying to change it. Thank it for everything it’s taught you.
- Throw out all of your fashion magazines. Stop using airbrushed models as your basis for comparison.
- Donate or sell all of the clothes that no longer fit you. You don’t need that itty bitty bikini as “motivation.”
- Unfollow everyone who makes you feel bad about yourself. Hint: you can start with all the girls from your high school who joined an MLM.
- Start a body negativity jar. Anytime you think something negative about your body, put a quarter in the jar.
- Immerse yourself in body positivity at the policy level. Spend time reading about key movements like the Health at Every Size (HAES) movement. Educate yourself on why the BMI is a flawed system.