My Endometriosis and GI Issues

For as long as I can remember, I have struggled with GI problems. My doctors always seem to chalk it up to be anxiety and IBS-related. But if I have learned one thing throughout this health journey of mine, it's that 99% of the time, my doctors have been incorrect with those findings. And I am pretty certain, they are overlooking what can be actually causing my GI distress now. Most don't realize that endometriosis can also wreak havoc on our whole GI tract. It isn't a "female parts only" illness. But sadly, gastro doctors and even GYNOS don't have much knowledge and information on the topic.

Endometriosis on the bowel

This is something I truly hope changes soon, but until then, we have to be our own advocates - and that is currently what I am doing, or at least trying to. Unfortunately, I haven't had much luck just yet. But I wanted to share the GI symptoms and tests I have had done, that make me suspect endometriosis is on my bowels. Because I know there are others out there, just like me, who are dealing with something similar and are most likely struggling to find answers. Do keep in mind, GI symptoms can most certainly be related to something other than endometriosis. It is very important to rule out other things too.

My GI symptoms

The GI symptoms I have been experiencing include:

• Constipation
• Loose stools
• Fatty stools
• Pain before, during and after a bowel movement
• Pain and discomfort in rectum
• Nausea
• Inflammation and bloat of the lower stomach
• Vomiting
• Acid reflux

For a long time, I couldn't find a pattern as to why or when these symptoms were occurring. Honestly, they seem like they occur all the time. But within these last few weeks, I have noticed majority of these symptoms to worsen, a week before period, sometimes even during my period. And then I have maybe a week of just a little relief before the cycle starts over again.

Tests I have had done

Over the course of trying to diagnose endometriosis in the beginning to now trying to figure out what else is going on besides endometriosis, I have had so many tests done. These include:

• 3 colonoscopies
• 3 endoscopies
• Blood work (more times than I can count)
• Gallbladder HIDA scan
• Stomach study scan
• Ultrasound
• CT scan

...along with diet changes, tests to look at intolerances, and so much more. Yet every single test "mostly" came back fine. Minor small things here and there that never warrant any further investigation (which is sort of frustrating as well!). The only most recent answer I received from my GI doctor was that my colonoscopy did show erosions on my lower digestive tract. Sometimes that can mean Crohn's Disease. But just like everything else, they sent a biopsy off and it came back just fine. I know it sounds ungrateful to be complaining that tests came back fine. I mean, it isn't every day you hear someone say, "Man, I wish I had Crohn's Disease". But as many of you know and most likely have experienced already, feeling so crappy all the time and getting extensive work ups done, only to find no answers, is exhausting.

I am grateful it came back negative for Crohn's but also frustrated that I still have no answers. I did find it surprising however, that my GI doctor said, "The erosions we saw could very well be endometriosis." It was sort of refreshing hearing a medical professional use the term endometriosis. Instead of sending me home, telling me I am fine and it is all in my head.

So what is next?

My GI doctor referred me to a new gynecologist. Honestly, I am not going into this appointment with high expectations. Endometriosis on the bowels is a hard topic to get GYN's to understand. Not to mention that it's hard to find a doctor qualified enough to perform the needed surgery. But I am going to give him a try. If he is knowledgeable (and kind), I would like to pursue another laparoscopic surgery. This will be my third one. But I can feel it in my bones, that it is needed. There is also still one test my GI doctor has not performed, that I want to look into. I want her to tests for SIBO. It is actually common amongst those with endometriosis. Unfortunately if my new GYN will not perform surgery or isn't skilled enough, I will be back on the hunt for another doctor, but I am trying to stay positive until then!

If you are dealing with GI symptoms, and have had numerous tests done only for them to come back all clean, then maybe try bringing up endometriosis on the bowel to your doctor. I truly believe it is more common than doctors and research think.

What are some GI symptoms you are dealing with? Have you been diagnosed with endo on your bowels? Would love to know how hard getting that diagnosis was!