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A MyEndometriosisTeam Member asked a question 💭
Ypsilanti, MI

Is it really common to ACTUALLY have IBS/intestinal issues with endo and for it not to be adhesion related? I just got confirmation today that it couldn't possibly be endo causing my intestinal pain because they couldn't find anything notable except for my cyst. I have such awful sharp, stabbing, burning pain trying to pass a bowel movement when I'm on my period that I'm seriously shocked.

June 9, 2016
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Answer Summary

Members overwhelmingly confirmed that endometriosis commonly causes intestinal issues, with many sharing personal experiences of being... Read more

Members overwhelmingly confirmed that endometriosis commonly causes intestinal issues, with many sharing personal experiences of being misdiagnosed with IBS years before receiving a correct endometriosis diagnosis, often after endo was found in areas like the bowel, pouch of Douglas, or near the rectum. Several members emphasized that colonoscopies and ultrasounds cannot detect endometriosis, and that a laparoscopy with a skilled surgeon who examines the bowel is essential for accurate diagnosis, with one member describing how their IBS symptoms improved significantly after endo excision. A recurring theme was the critical importance of self-advocacy and persistence in seeking proper care, as many members faced years of dismissive doctors who failed to investigate beyond their specialty, with strong encouragement to trust your own body and keep pushing until you find answers.

A MyEndometriosisTeam Member

I was diagnosed with ibs 2 years before I was diagnosed with endo. I had a colonoscopy that was normal and the doc said it must be ibs causing my irregular bowel movements, and pain. Over the next two years my symptoms worsened and I finally found a doctor who looked at the whole picture, not just focused on their specialty. I had a laparoscopy and was diagnosed with stage 3 endo, mostly in the pouch of Douglas. Since my lap my "ibs" symptoms have improved greatly but haven't completely gone away. Did you have a lap? Colonoscopy, ultrasounds won't show the endo

June 23, 2016
A MyEndometriosisTeam Member

I have endo AND IBS. I was diagnosed with IBS many, many years before endo, endo just recentky, even though I had a hysterectomy 2 years ago. I feel the endo does effect the IBS, but my dr does not want to do a lap, since I have had 2 surgeries already, the hysterectomy, and the removal of endo on my abdominal wall. they would nit do lap at that time because the endo being removed was on the external part of the abdominal wall, not internal. I have been to see real different doctors just to find and remove thst endo, I am positive I have endo on intrenal organs, but no doctor seems to want to deal with it. I was finally put on Lupron injection, and it seems to be helping. I have also been diagnosed with pelvic floor tightness, but after reading others posts, now wonder if that is endo related as well.

June 24, 2016
A MyEndometriosisTeam Member

Did you have a cat scan? I was diagnosed with IBS when I had episodes of vomiting & diarrhea after I ate. This went on for 4 years! I went from doctor to doctor at very respectful hospitals in the city of Philadelphia. It wasn't until I wound up in the ER (4 years later!) and was told immediately after having a cat scan that I had a bowel obstruction. Two grueling weeks in the hospital, an appendectomy & bowel resection later, the biopsy showed all were secondary to endometriosis. I had a second bowel obstruction 5 months later, as well as removal of my left tube, both secondary to endometriosis.
If I can offer advice to anyone I would say do not stop being your own advocate. You know your own body better than anyone. Keep going until you are satisfied with the medical advice & care that you receive.
Good luck to you.

September 16, 2016
A MyEndometriosisTeam Member

It sure does! I was incorrectly diagnosed with only having IBS about 2 years before being diagnosed with Endo. I was told by many Drs that one of the most common symptoms is IBS and other bowel problems.Mine grows on my bowel as well so I've gotten worse over the years with scarring etc. Endo can grow anywhere in the body.

June 9, 2016
A MyEndometriosisTeam Member

Just real quick, you can schedule an appointment with a general surgeon. I wish I would have known that when I was having all of these issues and was getting nowhere.

September 16, 2016

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A MyEndometriosisTeam Member asked a question 💭
Los Angeles, CA

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