The Different Faces of Endometriosis

When I first heard about endometriosis, it was always talked about in terms of heavy periods and lots of pain. And while those are the most common symptoms of endometriosis, they are by far not the only ones.

Symptoms can change

My symptoms certainly started with very painful periods – almost from my first period and it only got worse from then on. My flow became heavier and I had to rely on painkillers a lot more. When I finally got diagnosed with endometriosis, I was so happy. I thought I would finally be cured. Sadly, there is no cure for endometriosis, but my first laparoscopy certainly provided a lot of relief.

When the symptoms came back after the surgery, I was surprised – and dismayed – that I had more symptoms than just painful periods. I had a constant back pain that radiated down my legs. I developed pain while emptying my bladder and later on my bowel movements became painful as well.

And then there was the exhaustion. I had never associated exhaustion with endometriosis. I attributed the tiredness to the fact that it’s exhausting to be in pain all the time, which is, of course, a contributing factor. But when I had my hysterectomy and all the endometriosis had been excised, I felt a surge of energy I had never experienced. And when I started talking to other endometriosis sufferers I realized how many of them experienced exhaustion as well.

Symptoms are different for each person

Not only do symptoms change as your endometriosis progresses, or as you get older, or as your hormones change, but symptoms differ per person as well. Which can make it difficult to get a diagnosis. A lot of the time women with endometriosis are told they have IBS, as an upset bowel is sometimes a symptom. Or they are misdiagnosed with ovarian cysts.

It’s also hard to talk to non-endo-sufferers about your symptoms, as the woman on the street will think only about painful periods, so when you start talking about back ache or bladder issues, you get blank stares. The worst is when someone has a friend/acquaintance/family member with endometriosis, as they then think they know all the symptoms. But what may be a symptom for one person may not be an issue at all for another. It’s just a fun disease that likes to disguise itself.

More information is needed

We certainly need more information about the many different ways in which endometriosis manifests itself. Websites such as Endometriosis.net are very helpful as we can hear from actual endo sufferers what they are experiencing. But doctors should be better informed as well. Having “heavy, painful periods” as the only endo symptom is short-sighted and will make it so much harder for women to get a diagnosis.

Endometriosis awareness continues to be extremely important. We need to keep talking about our own experiences with this diseases so that not only other endo sufferers can learn about this disease, but people who don’t suffer can be better educated so they can understand better what we are going through.