Cramping, bloating, gas, diarrhea or constipation, chronic pelvic pain. Are these symptoms due to endometriosis or irritable bowel syndrome (IBS) or both? IBS — a gastrointestinal disorder of the large intestine — has similar symptoms to endometriosis, making it hard to tell the difference between the two conditions or get a proper diagnosis.
“I was diagnosed with IBS, but most of my symptoms later turned out to be endo,” explained one member of MyEndometriosisTeam. “It’s pretty tricky to tell what's causing what.”
A lack of guidelines for diagnosing IBS and endometriosis cause frustration for MyEndometriosisTeam members at the doctor’s office. “My gynecologist didn’t want to hear about my symptoms. She just handed me off to a GI doctor,” said one woman. “My GYN said IBS is often the go-to diagnosis when symptoms fall into the ‘too-hard-to-diagnose’ basket,” shared another member.
As a result, some women suffer for years with the wrong diagnosis. “First, the doctors told me it was period pain. Then, they said, ‘It's all in your head,’ and sent me to a therapist. Only later did they discover it was chronic IBS,” lamented another member.
The good news: It’s not in your head. Women are at the greatest risk for developing IBS, and endometriosis may be a major factor. But the relationship is complicated.
Researchers have discovered that women with endometriosis are 3.5 times more likely to have received a diagnosis of IBS than those without it, according to a 2008 study of 5,540 women with an endometriosis diagnosis and 21,239 without. Those same women were also six times more likely to be diagnosed with pelvic inflammatory disease (PID) — another condition with similar pain symptoms.
Menstruation has been associated with increased IBS symptoms. In population studies, more than 50 percent of women reported worsening of intestinal problems around their cycle. Up to one-third of those with endometriosis reported increased IBS symptoms at that time as well.
“I get horrible attacks, constipation, and sharp pain before my period,” explained one member. “They’re only relieved by having a bowel movement.” Another member said, “Hormonal changes cause a bunch of bowel issues for me. I can time my digestive problems to ovulation and my periods.”
Another cause of tummy troubles is endometriosis that spreads to the bowel or surrounding areas. Up to 37 percent of women with bowel lesions report gastrointestinal distress. “I only get IBS ‘symptoms’ during a bad flare,” reported one member with bowel endo. Another with similar symptoms added, “It’s a fine line that took me a while to figure out.”
Since both endometriosis and IBS are inflammatory, immune-regulated disorders, gastrointestinal symptoms could be a response to endo inflammation. C-reactive protein (CRP), an inflammation marker that’s used to differentiate IBS from inflammatory bowel disease (IBD), tends to be elevated in women with endometriosis.
Diagnosing irritable bowel syndrome and endometriosis is typically a process of elimination. Understanding how the two conditions work can help you monitor symptoms and discuss them with your doctor.
Endometriosis occurs when cells that usually line the uterus spread to other parts of the body, such as the ovaries, fallopian tubes, and bowel. Primary symptoms are:
When endometriosis spreads to other parts of the body, the cells swell and bleed as they would during a menstrual cycle. They can’t easily shed, however, causing IBS-like pain, bloating, and cramping.
“I have a lot of adhesions and scarring on my bowels and, each month, they bleed and cramp,” explained one member. “I get IBS-like symptoms, but I was told it’s the endo manifesting in a different way.”
While the cause of irritable bowel syndrome is unknown, it’s thought to result from a disturbance in how the gut, brain, and nervous system interact. This can cause changes in normal bowel movements and sensations that feel similar to endometriosis — diarrhea or constipation (or both), as well as abdominal pain and belly distension.
You may have IBS if you’ve experienced abdominal discomfort or pain for at least 12 weeks in the past 12 months that includes two of these three symptoms:
Other symptoms that support an IBS diagnosis include more than three bowel movements a day or less than three a week, mucus in the stool, and abdominal bloating or distension. “My symptoms alternate between diarrhea and constipation,” shared one MyEndometriosisTeam member.
There may be other reasons why women with endometriosis experience IBS. Up to 30 percent of people who contract bacterial intestinal infections develop IBS symptoms in their lifetime. Genetics are also a factor. The risk of developing IBS is twice as high if a family member has the condition.
In addition to cramping, bloating, diarrhea, nausea, and painful bowel movements, both endometriosis and IBS share a common — and confusing — symptom: visceral sensitivity. People with this symptom have an increased sensitivity to abdominal or pelvic pain, and they may have IBS if bowel function is also significantly disturbed.
Misdiagnoses are common for these two conditions. One study found that 10 percent of women with endometriosis were treated for IBS prior to their diagnosis, and that number decreased after the proper condition was identified. The absence of diagnostic guidelines or coordination between gynecologists and gastrointestinal experts can delay diagnosis of endometriosis in the U.S. more than 11 years.
“I was misdiagnosed with IBS. I didn’t receive the correct diagnosis until five years later,” shared one MyEndometriosisTeam member. Another said, “I was initially diagnosed with IBS, but after two years of symptoms coming and going each month, it looked more like endometriosis. After two surgeries, the doctors concluded it’s intestinal endometriosis and haven't wanted to touch it.”
After closely monitoring her own symptoms, one member of MyEndometriosisTeam shared, “My IBS pain feels more like an urge to go to the restroom. My endo pain is deep and constant.”
There are many treatments to ease IBS symptoms experienced by women living with endometriosis. Some are lifestyle-based, and others require prescription medication or surgery. Always consult your doctor before embarking on a new treatment plan.
Studies have shown that some women who had endometrial tissue surgically excised experienced complete relief from “IBS” symptoms. Members of MyEndometriosisTeam report similar experiences. “I had excision surgery to remove the lesions. Since then, I haven't had IBS symptoms, even once,” wrote one woman. Another who had “IBS” for 20 years reported, “After excision five months ago, my symptoms are virtually gone.”
Various hormonal therapies can reduce symptoms in women who suffer from IBS and endometriosis. One MyEndometriosisTeam member who takes the progestin drug Visanne commented, “It stops endo cells from growing. The upside: No more death grip period pains. Side effects are a bit rough. Insomnia, dry skin, and thrush — I'm embarrassed to say — are the new norms. I don't know which is the lesser of two evils.”
Some members also take an IBS medication. “I got a prescription for Dicyclomine and it worked. This med is for spasm of the intestines/colon. Most of the time I cannot distinguish if my pain is because of the IBS or endo.”
Studies have found that IBS symptoms can decrease when the menstrual cycle is suppressed or ceases. Women over age 45 reported a significant reduction in symptoms after menopause, according to a survey of 5,430 U.S. households. A University of North Carolina survey also found a decrease in IBS symptoms during pregnancy.
There’s good evidence that a healthy diet can help painful IBS. “I follow the FODMAP diet and have been symptom free for over a year!” shared one MyEndometriosisTeam member with IBS and endo, adding, “My last cycle was PAIN FREE! Healing my gut was the best thing I’ve ever done.”
"Eliminating gluten, dairy, and soy solved 90 percent of my pain,” said another member of MyEndometriosisTeam. Another said, “I still get mini attacks the week before my period, but they last only minutes and don't completely debilitate me anymore.”
Keeping a food diary has helped some MyEndometriosisTeam members identify what’s causing their stomach distress. “Having a record to show my doctors has steered them away from the automatic IBS diagnosis (the ‘it’s just your stomach’ argument) and focus on treating the endometriosis,” shared a member.
Some members of MyEndometriosisTeam have found relief with marijuana-based medicines, where legally available. “I get horrible pains 98 percent of the time when I have to “BM’ 😖😫😡,” shared one member who added, “A super-hot bath and good old Mary Jane (marijuana) is a game changer for me. It takes care of the pain and allows me to wean off the painkillers I’ve taken for 9 years (prescribed by my doctors).”
“Hydrate with a lot of water to make sure your bowels are MOVING,” one member advised. “Use stool softeners and/or MiraLAX if you're not regular. Constipation can SO intensify your belly/back/flank pain.”
Heat is highly beneficial to ease the cramping, tension, and pain of endometriosis and IBS. Some members relax in an Epsom-salt bath with essential oils, surrounded by candles. Others prefer curling up in bed with a heating pad. “That really helps my pain,” said one member.
One member, who swears by pain-relieving massages, shared some do-it-yourself techniques from her massage therapist: “Massage your quadriceps (upper thighs) and ankles. (They hold a lot of nerves leading to ovaries and uterus.) Use castor oil specifically. It has a lot of anti-inflammatory properties. Also massage your belly, in a circular motion, to help with pain and scars there. I feel much better … and you can too!”
Cognitive behavioral therapy (CBT), psychotherapy, and hypnotherapy have all been shown to have a positive mind-body effect on IBS. “Dialectical behavioral therapy (DBT), a form of CBT, really helps me,” revealed one member. “It has given me control of my emotions.”
Always check with your doctors before starting any medical or therapeutic regimen for endometriosis and IBS pain.
By joining MyEndometriosisTeam, the social network and online support group for those living with endometriosis, you gain a community more than 75,000 members strong. IBS is one of the top 10 topics most discussed.
Here are some question-and-answer threads about IBS:
Here are some conversations about IBS:
Do you struggle with abdominal pain and IBS symptoms? How do you take care of yourself when the pain becomes too much? Go to MyEndometriosisTeam today or comment below to start a conversation. You'll be surprised by just how many other members share similar stories.