I Found Out My Gut Issues Were Actually Caused by Endometriosis—Here Were the Top 5 Symptoms I Had

I‘ll never forget the day I started my period. I was just 10 years old, and I was so scared I’d done something wrong that I hid my stained underwear in my closet. At that age, I didn’t know anything about menstruation. When my mom found out, she was shocked it happened so early.

It was also the beginning of another journey for me, although I didn’t know it at the time: a decades-long battle with endometriosis and its debilitating symptoms.

Since that very first period, I’ve dealt with a heavy flow and agonizing cramps. When I reached my early teens, things got worse. I’d spend days doubled over in pain, fleeing to a warm bath when I could for relief. By my early 20s, I began getting what I thought were recurring UTIs, and I would hold onto the toilet as I peed, clenching in pain.

And then there were the bowel movements: Each one felt like someone was tearing something out of my left side. I’d break into a sweat and have to lie down in the shower afterward to calm myself down. Nausea would hit because of the pain, and other days, my stomach would bloat to the point that I looked pregnant.

Even after telling my doctors that my mom had endometriosis (I’d watched her go through the same exact symptoms), it took a total of seven doctors over the span of 14 years for me to get an official dual-diagnosis: endometriosis and interstitial cystitis (also known as bladder pain syndrome). Up until that point, all I’d ever heard from doctors was “nothing’s wrong with you,” and “this is just a normal part of being a woman.”

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And it wasn’t until after my first surgery for endometriosis that I realized my condition and my raging gut symptoms were very closely intertwined.

How endometriosis affects the gut

Most of what you see about endometriosis in mainstream media has nothing to do with your gut. But the truth is, living with endometriosis can take over every aspect of your life and health—gut health included.

In fact, the fourth fundamental symptom of endometriosis (after abnormal periods, painful periods, and painful sex) is irregular bowel movements and gastrointestinal distress, according to The Endometriosis Foundation of America. This can include extremely painful pooping as well as constipation, diarrhea, and bloating, usually during menstruation.

These symptoms are usually a sign that endometrial tissue (which usually lines the uterus and sheds during menstruation) has grown on the intestines or bowel.

Frustratingly, gut issues from endometriosis may appear like symptoms of gut conditions like irritable bowel syndrome (IBS), Crohn’s disease, or appendicitis. But if you’re a person with a uterus, endometriosis should be considered as a potential cause. (Though it often isn’t—no wonder, then, that it takes seven years on average to get a proper diagnosis, with 6 in 10 cases of endometriosis going undiagnosed, per a May 2023 review in Cureus.)

“Endometriosis may actually be the primary cause of your GI issues, or even a contributor to your symptoms and pain,” says Amanda Chu, MD, a board-certified minimally invasive gynecologic surgeon at Seckin Endometriosis Center (and one of the surgeons who operated on me during my second surgery).

She notes that seeing a gastroenterologist about GI issues is a good idea, especially if they’re your primary concern, but: “If their testing is inconclusive, don’t let them just diagnose you with IBS,” she says. “I’d be more likely to suspect endometriosis as, in many cases, it doesn’t appear in routine testing.”

For me, bowel issues were a top concern. After my first surgery in 2018 (an ablation, where endometrial tissue is burned off at the surface of certain organs, but not fully removed), I was left with terrible GI issues like irregular bowel movements, chronic constipation, and abdominal pain. Thankfully, my second surgery with Tamer Seckin, MD, a board-certified OB/GYN, endometriosis specialist, and founder of The Endometriosis Foundation of America, and Dr. Chu, brought some gut relief.

Ultimately, if you’ve been diagnosed with endometriosis (or are still waiting for a diagnosis) and your gut issues are taking over your life, let your care team know. Advocating for yourself and listening to what’s really going on in your body is the only way get appropriate treatment for endometriosis-related gut issues (and for the condition in general).

Had I not sought out specialists like Dr. Seckin and Dr. Chu, I don’t know where I’d be today except (most likely) bedridden and still searching for answers.

Advocating for yourself and listening to what’s really going on in your body is the only way to get appropriate treatment for endometriosis-related gut issues.

5 gut issues that may actually be signs of endometriosis

Bloating (aka, “endo belly”)

While not a medical term, “endo belly,” or abdominal swelling, is a common symptom of endometriosis. It can last for hours, days, or weeks, cause discomfort and pain, and can even make you look pregnant or severely swollen. Doctors don’t really know the specific cause of this symptom, but they believe it has to do with inflammation and hormone changes, per the Cleveland Clinic.

“Endometriotic lesions (i.e., endometrial tissue) growing close to the bowel or on the bowel itself can cause GI issues like bloating,” says Tiffany Pham, MD, OB/GYN and medical advisor at Flo Health.

Higher-than-usual levels of the hormone-like substance prostaglandins (which is typical for people with endo) can also affect the bowels and their functioning, adds Dr. Pham.

Not everyone with endometriosis will get “endo belly,” but if you do, it can have physical and mental health effects, like low self-esteem and body image issues, according to a September 2022 article in the International Journal of Behavioral Medicine.

Abdominal pain (and painful bowel movements)

This is yet another hallmark symptom of endometriosis, which can feel like stabbing or cramping pain in your lower abdomen. For me, pain comes and goes depending on what I eat, whether I’m on my period, and other factors like stress.

People with endometriosis may have constant abdominal pain or pelvic pain, which often worsens during menstruation, per UCLA Health. This means endometriosis could cause abdominal pain that is not always necessarily associated with your menstrual cycles.

Another time this abdominal pain may spark up? When you’re trying to have a bowel movement. (More on this below.)

Constipation

Many people with endometriosis have chronic constipation, per The Endometriosis Foundation of America, especially if your lesions are close to your cul-de-sac (area between the uterus and rectum) or rectum. I still deal with constipation post-surgery, but I mostly believe it’s due to my interstitial cystitis meds.

“The thing with women’s anatomy is that all parts are located in the same zip code, so to speak,” says Morgan Allyn Sendzischew Shane, MD, gastroenterologist and director at UHealth Women’s Health Alliance. So when you have lower abdominal issues or pelvic pain, it could be gut, urinary, or reproductive-related—all kinds of things, she adds.

Dr. Shane says hormones like estrogen and progesterone can have an effect on gut motility, i.e., how often you “go.” As a result, people with endometriosis may have severe constipation or diarrhea alongside pain, bloating, and nausea, she adds.

Diarrhea

Endometriosis can also have the opposite effect on gut motility, resulting in diarrhea. Before my second surgery, anytime I ate a particularly inflammatory meal (like one with red meat or dairy), or was going through a period-related flare, I would get extremely painful diarrhea.

Once again, this is likely due to prostaglandins. While anyone who gets a period may find themselves pooping more often around their time of month (aka, the period poops), the chances are even higher in those with endometriosis, as they often produce higher levels of prostaglandins, says Dr. Pham.

Basically, the uterine contractions felt during your period (thanks to prostaglandins) can affect your nearby gut, especially if you have endometrial tissue growing on your intestines.

Nausea and vomiting

Some people may feel slightly nauseous around their period, but for those with endometriosis, the unbearable pain could cause them to full-on throw up. If you’re throwing up (or constantly feel like you’re on the verge of it) around your period because of the pain, this may be an endometriosis red flag. I’d often throw up when I had other extreme bowel issues going on, like diarrhea.

While nausea can happen as a typical PMS symptom for those without endometriosis (due to hormone changes, per Nemours TeensHealth), nausea and vomiting with endometriosis are usually due to pain, per the Endometriosis Foundation of America.

How to tell the difference between endometriosis and non-related gut issues

“Endometriosis commonly affects the gut, causing gas, bloating, diarrhea, constipation, and painful and even bloody bowel movements,” says Dr. Chu. “Unfortunately, these symptoms are also nonspecific to endometriosis.”

One way to tell the difference? Pay attention to the timing of your symptoms. If they correlate with your menstrual cycle, they’re likely linked to endo.

Dr. Chu says you should also check whether you have hallmark endometriosis symptoms not related to the gut, including:

• Heavy menstrual bleeding
• Dysmenorrhea (painful periods not fully relieved by meds)
• Painful sex
• Unexplained infertility

“These would help point a patient in the direction of a primary gynecologic issue,” she adds.

How to manage gut-related endometriosis symptoms

Not everyone with endometriosis will have gut issues. In fact, 20 to 25 percent of people with endometriosis are asymptomatic—also known as silent endometriosis, according to a 2010 review in the Journal of Assisted Reproduction and Genetics.

That said, if you do have gut-related symptoms, there are a few things you can do to help manage them—whether or not you’ve had surgery for your endometriosis. Here’s what the experts recommend:

Keep a food diary

This may feel tedious when you’re dealing with extreme pain, but trust me, knowing which foods cause your gut symptoms to flare up can be extremely valuable.

“Unfortunately, there’s no specific diet to recommend to endometriosis patients; we have to realize that everyone’s gut microbiome, genetics, and environment is unique,” says Dr. Chu. “I would urge people to start a food diary to understand their personal symptoms.”

Dr. Chu also recommends trying to cut back on foods commonly known to cause stomach upset, like caffeine, alcohol, processed foods, and foods high in refined sugar, to see if that helps.

Rule out any underlying GI disorders

Turns out, it’s possible to have endometriosis and a separate GI disorder at the same time. In fact, people with endometriosis are at a three times higher risk of developing concurrent GI conditions like IBS, says Dr. Pham.

To help you distinguish between a GI issue and endometriosis, it may be helpful to see a gastroenterologist—especially if your gut issues happen regularly and interfere with your daily life. They can run tests (like stool samples, blood tests, colonoscopies, or CT scans) to narrow down the cause and treat it properly.

Assemble a team of health-care professionals

One of the best things you can do for yourself is to assemble a team of doctors who can provide comprehensive care and support. My team consists of a urologist and two endometriosis specialists who work together to help me manage my symptoms and provide me the best possible care. Your team may look different, though, and could include primary-care docs, OB/GYNs, gastros, or even registered dietitians.

“It’s important to get a team on board who’s there to address your concerns,” says Dr. Shane. “That often starts with specialists with whom you feel comfortable communicating all your symptoms, and who are familiar with endometriosis.”

From there, your team can help tackle your symptoms one by one, whether they be physical, mental, or even emotional.

When to see a doctor

If you already have endometriosis and your gut issues are getting more intense, let your doctor know. They can refer you to a gastroenterologist, or recommend surgery to ease endometriosis symptoms. If you’ve already had ablation surgery (like I did), ask your doctor about excision surgery, where they remove as much endometrial tissue growing outside the uterus as possible.

If your doctor isn’t listening to your concerns, don’t be afraid to get a second opinion. That’s what I did, and thankfully, my new team took me seriously and performed the excision surgery. I still deal with the occasional constipation, but overall, my gut health has significantly improved since that surgery.

And finally, if you haven’t been officially diagnosed with endometriosis but think you have it, talk to your doctor. If they don’t listen or take you seriously, write down all your symptoms, including gut issues, then schedule an appointment with a doctor who specializes in endometriosis to discuss your concerns.

The bottom line

Endometriosis can definitely cause GI issues, and those may often be the first warning sign (apart from painful periods) that something may be off. Because endometriosis is still a largely misunderstood (and underdiagnosed) condition, it’s important you surround yourself with the right type of support—including a team of medical professionals that can address all different aspects of the disease.

In other words, don’t just go to an OB/GYN; they’re often not trained in the complexities of this condition. Find an endometriosis specialist, if you can.

And remember: For many people, myself included, it takes several years to get an official diagnosis. Don’t be afraid to stand up for yourself along the way, and to continue to advocate for your care.

If you want to find a specialist but aren’t sure where to start, here are some free online resources that can help:

Source: Well and Good