What If It Isn’t Endometriosis?

In 2014, whilst going through IVF, I started to experience a lot of pain. At the time, I thought it was the IVF medications irritating my endometriosis. However, the pain continued into the pregnancy. This time, I put it down to coming off medications. But, the pain continued. No one knew for certain what the cause was, but everyone, including myself, thought it was endometriosis.

At 19 weeks, the pain increased and it felt different to anything I’d previously experienced with endometriosis. The GP I saw believed it was a bowel problem but I dismissed it instantly. I had heard so many stories of people having their symptoms dismissed as IBS before eventually being diagnosed with endometriosis that my shields instantly went up. I thought I knew better and I told him it was definitely my endometriosis.

10 weeks later, I ended up in hospital. The pain I was experiencing was worse than I’d ever felt before. I tested positive for pre-term labor and spent the following 2 weeks under observation, continuing to experience what we all thought were contractions. Luckily, our baby was fine. My pain was again put down to endometriosis, but I was in and out of hospital for the remainder of the pregnancy.

Post-pregnancy...

Several years passed, and in 2017, I had a Nexplanon implant fitted. Immediately, I was in agony. My period suddenly became incredibly heavy and I was close to passing out with the pain. Of course, this time I put it down to having the implant fitted. However, I also began to experience the contraction-type pains I had felt during pregnancy.

At the start of 2018, I was hospitalized again. I had all the classic signs of food poisoning, but the pain I was in was unreal. Something wasn’t right. I was discharged but I was still in severe pain and experiencing the contraction-type pains, so I went back to my GP.

A turning point

My GP said she understood why I thought this was all down to endometriosis, but these contraction-type pains usually occur with a bowel problem. This time I didn’t dismiss the information and tests found I had high levels of inflammation in my bowels.

A few weeks later, I ended up back in hospital again. This time, I knew it wasn’t endometriosis. I was bleeding heavily from my bowels, having to run to the toilet every few minutes, having accidents because I couldn’t get there quick enough, and the pain was - I can’t even describe the pain it was so bad. I remember praying that I would either pass out or die rather than go through another minute of it.

After 3 weeks, I was discharged with a diagnosis of Crohn's Disease and later re-diagnosed with Ischemic Colitis.

The moral of the story

It’s important to remember that what you're experiencing isn’t always endometriosis - and this applies to those already diagnosed and those seeking a diagnosis. It’s easy to attribute your symptoms to something, but the symptoms must be thoroughly investigated before a cause is determined.