Consider this your depressing stat of the day: Research shows that there is an average delay of almost seven years for people to get an endometriosis diagnosis. This delay significantly impacts a patient’s quality of life and can be incredibly expensive, as they might require lots of extra tests or interventions to address their pain and other symptoms.
There are a lot of reasons for that infuriating statistic. But one factor that can complicate things for endometriosis sufferers is the fact that the condition shares a lot of symptoms with irritable bowel syndrome (IBS). What’s more, people with endometriosis often also have IBS.
But wait, you’re probably wondering, what does a bowel disorder have to do with a reproductive health condition? We talked to a top women’s health expert to get some answers.
What is IBS?
Irritable bowel syndrome (IBS) is a disorder that affects the stomach and intestines, making those organs more sensitive, and impacting how your bowels move food through your system. This causes a lot of pain, bloating, and changes in your stool.
The clinical diagnosis requires a person to have “three to six months of chronic abdominal pain relieved by bowel movements,” says Asma Khapra, MD, a gastroenterologist and medical advisor for digital therapy leaders Mahana Therapeutics.
More research is needed to understand exactly how people can develop IBS — and why it’s more common in women. But Dr. Khapra says that it’s a multifactorial condition, meaning that there are a bunch of different potential causes that can all play a role in both whether a person gets it and how severe it is. “[IBS] can have links to anything from stress to antibiotic use, to prior history of infections, to prior history of trauma,” she says. Genetics and family history (say, your mom or sister has it) can also increase your risk of developing IBS.
Dr. Khapra says symptoms of IBS include:
Diarrhea and/or constipation (some people have one or the other, and some people have both)
IBS affects up to 15 percent of the U.S. population and is twice as common in women as it is in men.
What is endometriosis?
Endometriosis is a reproductive health condition affecting people with uteruses. With endometriosis, tissue similar, but not identical, to the lining of the uterus is found elsewhere in the body. “[The endometrium] can attach to anywhere: the fallopian tubes, ovaries, and bowel,” says Dr. Khapra. People can also get endometriosis in their vagina, cervix, bladder, or rectum, according to the Office on Women’s Health.
At face value, this might just seem like an odd quirk of nature. But endometriosis can be incredibly painful. That’s because the endometrium, wherever it is located, builds up and then bleeds each month in time with your cycle. Enter swelling, pain, and discomfort on top of what you’d normally have for your period. These rogue endometriums can also grow and cause other health complications depending on their location, including ovarian cysts, inflammation, scar tissue, and infertility.
Symptoms of endometriosis include:
Pain, including very painful period cramps, abdominal pain, chronic lower-back or pelvic pain, or pain during and/or after sex
Bleeding or spotting between periods
Stomach or other digestive problems that can get worse during your period
According to the American College of Obstetricians and Gynecologists (ACOG), one in 10 women of reproductive age have endometriosis. Yet, unfortunately, there is incredibly limited research on the disease and what causes it. But experts say that there are quite a few risk factors associated with endometriosis, including starting your period at an early age, having heavy periods that last longer than seven days, having menstrual cycles shorter than 27 days, and having a family history of endometriosis.
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Is there a relationship between IBS and endometriosis?
At face value, these two health conditions seem completely unrelated. One affects the gut, one is a reproductive health issue. But a growing body of research seems to suggest that there is some kind of connection between IBS and endometriosis. A 2022 review published in the journal Frontiers of Medicine found that patients with endometriosis had three times the risk of also developing irritable bowel syndrome. Another 2020 study from the European Journal of Obstetrics & Gynecology and Reproductive Biology found that many patients with endometriosis had extremely similar gastrointestinal symptoms as people with IBS.
However, we still don’t know what exactly the nature of this apparent relationship is between the two conditions, says Dr. Khapra. “Interestingly enough, in addition to people having endometrial implants on the bowel, and that causes IBS-like symptoms, you can see IBS occurring [in endometriosis patients] even in the absence of bowel implants.” Translation: While there is a specific subtype of endometriosis that impacts the bowel, people with endometriosis are still more likely to have IBS even without having that specific subtype of the disease.
We know that there are a lot of interesting links between the reproductive system and the gut, says Dr. Khapra. “We know, for instance, that IBS and IBD [inflammatory bowel disease] actually flare during menstrual cycles,” she says. Other examples she cites: are reflux during pregnancy and bowel and gut changes during perimenopause and menopause. “There’s all of these time periods in a woman's life in which their hormones change and it definitely impacts their gut.” But experts don’t know yet what is driving those changes.
How do you get diagnosed with IBS and endometriosis?
It’s complicated and can take years (and multiple tests). That’s because there isn’t a simple blood test that can tell you if you have IBS or endometriosis. In many cases, doctors have to rule out a lot of other potential issues before being able to confirm that you definitely have IBS and/or endometriosis. (More on that in a second.)
It doesn’t help that IBS and endometriosis have a lot of similar symptoms, such as abdominal pain and digestive problems. This overlap can make it very hard to get an accurate diagnosis (or even result in misdiagnosis), says Dr. Khapra.
How is IBS diagnosed?
When diagnosing patients with IBS, Dr. Khapra and other gastroenterologists typically use something called the Rome IV criteria—a diagnostic tool that helps doctors identify various types of gastrointestinal disorders. A person has to these criteria to be diagnosed with IBS:
Abdominal pain for four-plus days a month over at least two months
A change in how often you’re defecating, or a change in the appearance of your stool
These symptoms can’t be explained by another health condition
A gastroenterologist may order a colonoscopy or another kind of test to rule out other issues if a person has any “alarm symptoms,” like blood in the stool, anemia, or unintentional weight loss, says Dr. Khapra.
Depending on how you meet the criteria, you’ll be diagnosed with one of three subtypes of IBS: IBS-Constipation (IBS-C), IBS-Diarrhea (IBS-D), or IBS-Mixed (where you have alternating constipation or diarrhea along with other IBS symptoms).
How is endometriosis diagnosed?
Unlike IBS, there is a concrete test to diagnose endometriosis. Unfortunately, it’s not an easy blood test—it’s a laparoscopy, a type of surgery that uses a camera to examine the organs in your pelvis. Sometimes a tissue sample is taken during a laparoscopy for testing.
According to the Office of Women’s Health, your OB/GYN might try other exams or tests to see whether you have endometriosis or another condition. This may include a pelvic exam to check for cysts or scars, or an ultrasound or MRI to check for cysts or other signs of endometrial tissue growing where it shouldn’t.
As mentioned earlier, people with endometriosis wait seven years for a diagnosis. There are a lot of factors playing into this unacceptable delay, including stigma and lack of patient knowledge, as well as doctors not taking patient concerns seriously or not using up-to-date diagnostic methods. Even worse, 75 percent of patients with endometriosis report getting misdiagnosed with another physical or mental health problem first, according to a 2020 study in the journal Diagnosis.
What does treatment look like for these conditions?
In the case of IBS, Dr. Khapra says there are a lot of treatment options available. “Treatment in IBS is meant to be approached in a very holistic manner,” she says. Often she starts with the basics, like tweaking patients’ fiber intake or making other diet modifications. (One example: the low FODMAP diet, which is a six-week, medically-supervised elimination diet that involves cutting out and then reintroducing certain kinds of carbohydrates known to trigger IBS symptoms in some people.)
Depending on the type of IBS, Dr. Khapra says, a person might be able to take certain medications to help mitigate their symptoms. (For example, people with IBS-D might be prescribed drugs to help reduce their diarrhea symptoms.) This can include over-the-counter meds, such as laxatives for constipation or Imodium for constipation. Some prescription drugs can help address more severe symptoms, too.
Part of IBS treatment includes addressing the “psychosocial factors,” of the condition, adds Dr. Khapra. This means helping people with mental health conditions, like depression, anxiety, or chronic stress, that might exacerbate their IBS symptoms. (An example of the brain-gut connection in action!) “There is a whole category of psychologists called GI psychologists that are trained and actually helping patients…through hypnosis and cognitive behavioral therapy (CBT) in order to really retrain the brain from responding to the connection to the gut and allowing people to have much better control of their symptoms,” says Dr. Khapra.
Mahana IBS is lowering the lift even more with their FDA-cleared, prescription program (delivered via an app) that uses gut-directed cognitive behavioral therapy to give you new techniques and tools to help you identify, manage, and reduce your IBS symptoms.
Treating endometriosis is a slightly different story in that there are far fewer options. According to the Office of Women’s Health, there is no cure for the condition. The main options for treatment are hormonal medications (like birth control or gonadotropin-releasing hormone agonists), which slow the growth of endometrial tissue and reduce pain; over-the-counter pain relievers like ibuprofen to reduce pain and inflammation; and surgery to remove endometriosis tissue. Because of the cost and invasiveness of surgery, “I think people tend to use [surgery] as a later resort,” says Dr. Khapra.
However, none of these treatments are fool-proof. Per the ACOG, eight in 10 women have pain again within two years of surgery, either because they have new endometrial growths, or growths that weren’t visible or couldn’t be removed. Hormonal medication works to manage symptoms, but they can (and often do) return if you stop taking them.
What can you do at home to manage symptoms?
Whether you have just one or both endometriosis and IBS, managing these painful conditions can feel frustrating and daunting. However, Dr. Khapra says that in a lot of cases, focusing on a healthy lifestyle can go a long way to reducing pain and other symptoms (in conjunction with other treatments from your doctor). Some suggestions from her include:
Identify (and limit) your dietary triggers: This is particularly important for IBS, where certain foods like dairy or gluten can set off symptoms. Be sure to work on this with your doctor to ensure that you’re still meeting your nutritional needs.
Prioritize sleep: “It’s important to make sure you get enough sleep,” says Dr. Khapra. Research has shown that chronic stress and poor sleep habits are associated with IBS. Insomnia is more common in women with endometriosis. Sleeping more is of course easier said than done, but some easy places to start include keeping phones and screens out of the bedroom, trying yoga or meditation before bed to help unwind, ensuring your bedroom is dark and cool, and if needed, trying a melatonin or magnesium supplement.
Try consistent exercise: Not only do the endorphins created by exercise help us stay happy (thanks, Elle Woods!), but Dr. Khapra says working out is an “underrated tool” to improve IBS and other symptoms. Some research suggests that physical activity might reduce stress and pain in people with endometriosis (but more conclusive info is needed), while low-intensity exercise like yoga or treadmill workouts might help with IBS symptoms.
Use a heating pad or pelvic massage for pain: Dr. Khapra says that her patients really appreciate these tools as a way to help with belly cramps and pelvic pain.
Meditate (yes, really): While meditation can’t cure all, it can be a great way to reduce stress and manage pain. Dr. Khapra recommends diaphragmatic breathing, which is a form of guided deep breathing (you can get a great tutorial from Harvard Health here).
If you think that you have symptoms of IBS and/or endometriosis, Dr. Khapra emphasizes the importance of getting a great doctor whom you can trust. “Partner with a physician that’s very compassionate and willing to work with you,” she says, “because there are a lot of options available. It may take someone to help you think through the options and figure out what works best for you.”
It’s also a good idea to connect with other people who are going through what you are, Dr. Khapra says, whether that’s talking with other folks on the Rescripted Community or finding supportive Facebook groups or other online communities. “The more we bring attention to this, the more we find pathways forward for women to feel better,” Dr. Khapra says.
Jessie Van Amburg is a health writer, reporter, and editor with 10 years of experience creating meaningful, compelling journalism in print and digital formats. Her work has been featured in TIME, Women's Health, Well+Good, and more.