How Endometriosis Delayed My Crohn’s Disease Diagnosis

Only a few days in to 2018, I found myself in hospital after a sudden flare of nausea, diarrhea and intense abdominal pain. I thought it was food poisoning that had irritated my endometriosis. The doctors thought it was my appendix. But when every scan and test imaginable came back clear, I was sent home.

Unfortunately, that wasn’t the end of my tale. I continued to have problems. When the pains were becoming too much for my trusty painkillers and my beloved heat pad/TENS machine combo to handle, I went to see my doctor.

I had been having agonizing pains that felt exactly the same as contractions. As soon as I described this to my doctor and filled her in on what had happened in January, she said it sounded like a bowel problem. She prescribed me anti-spasmodic tablets and asked for some stool samples to check for infections and/or inflammation.

My samples came back with a high calprotectin level which showed there was inflammation in my bowels. The doctor suggested it could all be an after effect of food poisoning or an infection, or it could be endometriosis causing problems. However, an eyebrow was raised when they asked me if anyone in my family had bowel issues, “Yes, my brother has Crohn’s disease.” I was referred on to the hospital. I still thought nothing more of it. Yes, I’d had recurring bouts of pain, nausea and problems with going to the toilet, but I thought this was all pretty normal for someone with endometriosis.

On the 27th February, we went out for the day. I managed a short walk around a couple of shops and then the pain started. From where this pain was, I knew then it wasn’t endometriosis. I went and sat down for a rest and took all the painkillers I possibly could, but they did nothing.

The contraction pains started again and they were only intensifying. Within the hour, back at home, I was writhing around the floor. I didn’t know what to do with myself. The pains took a sudden turn for the worse and I couldn’t do anything but scream out in agony and pray that I would pass out so I didn’t have to take it anymore.

By the time I arrived at hospital, I’d had several “accidents” and was passing bright red blood. The pain was like nothing I had ever felt before and even morphine, gas and air weren’t helping.

Eventually, the pain dulled but the trips from the bed to the commode quickened. This time they thought it was my gallbladder and I was prepped for emergency surgery. With a bit of luck, I saw the same doctor as when I was admitted in January. Gallbladder was ruled out. Crohn’s was mentioned again. The next day I had a colonoscopy and although a diagnosis wasn’t given for several more weeks, I began a course of IV steroids to treat the inflammation.

I was in hospital for almost three weeks. It was a complicated time of constipation, diarrhea, scans, X-rays, blood tests, allergic reactions, enemas, laxatives, nausea and depression. I don’t think a day passed where I didn’t cry. I wanted to be at home with my partner and little boy so desperately.

I’ve now been diagnosed with Crohn’s disease. And, looking back, these problems didn’t just start in January. But, I had always passed them off as my endometriosis. I mean, if I’ve learnt anything over the past 23 years of having endometriosis then it’s that it usually is endometriosis causing the problems!

Frustratingly, my original endometriosis consultant had wanted me to see another doctor because I was presenting with bowel issues back in my early 20s, but I had refused on the premise that so many other women were fobbed off with an irritable bowel syndrome (IBS) diagnosis instead of being checked for endometriosis.

In 2015, I was diagnosed with fibromyalgia because of pain in my knees, hips and hands. For years I questioned that diagnosis. Even my rheumatologist didn’t think it was fibromyalgia. And it’s now looking likely that it was indeed Crohn’s all along.

And, last year, after having my birth control implant fitted, I started getting these contraction pains. But who would have thought it was a completely separate disease causing these pains to start at the exact same time I started a new treatment for my endometriosis?

The point of my story is this: Endometriosis is commonly misdiagnosed as IBS, and although doctors will sometimes try to pass off bowel problems as just that, ignoring endometriosis symptoms in the process, remember, it could well be a bowel problem. If you are having pain before or after bowel movements, please know this isn’t normal.

Getty Image by RyanKing999