IBS: The Surprising and Frustrating Symptom of Endometriosis

In our Facebook group, we had a discussion about the most frustrating endometriosis symptom. There were the usual suspects - flare-ups, fatigue, back pain, leg pain - but the one that struck me the most was IBS. IBS (Irritable Bowel Syndrome) is a condition completely separate from endometriosis, but endo will often produce a symptom very close to it. This is why doctors often misdiagnose women who suffer from endometriosis with IBS.

An unlikely symptom

I never realized that my sensitive digestive tract had anything to do with endometriosis. I was always told that the symptoms of endo were heavy, painful periods, and that was it. No mention of fatigue, back pain, leg pain, or an irritable bowel. And this despite the fact that the IBS-like symptoms are fairly common and utterly frustrating.

It wasn’t until I had my hysterectomy that I understood that my frequent emergency trips to the bathroom were linked to endometriosis. This despite the fact that I didn’t have any adhesions to my bowels. Suddenly I could eat whatever I wanted without worrying about surprise diarrhea. I could have breakfast at home and make it to the office without having to stop at a bathroom along the way. The freedom was immense.

Doctors need better education

Doctors need to be educated more about endometriosis. And I don’t mean just in terms of being able to diagnose the condition. Once a woman has been diagnosed, she needs to know what the symptoms are, so she knows that various, frustrating health conditions are linked to endometriosis. It would have made my life a lot better had I known that the fact that my belly grew double in size (also called "endo belly") and I couldn’t keep my bowels regulated was because of endo. I could have looked for a targeted diet to try and get a handle on it.

Support is key

All symptoms of endometriosis are frustrating, which is why being able to commiserate with fellow endometriosis sufferers is so important. The unpredictability of endo symptoms can wreak havoc with your life and make you feel lonely, anxious, and depressed.

One of the participants in the Facebook discussion explained it like this: “The good weeks makes it seem like nothing is wrong with you at all then for a week and half even two sometimes out of the month you go through all of this. It’s like each time you go through it you feel like you survived another war with your own body and have to prepare your mind for the next one.”

IBS-like symptoms are the worst, but knowing that you’re not the only one going through it can make life a little bit easier. I feel like I’m endlessly repeating myself in my articles, but doctors must do better in terms of supporting women with endometriosis and supplying enough information. Sure, not everyone gets the same symptoms, but the more informed we are, the less we feel like something is wrong with us in addition to the endometriosis.