Endometriosis: My Personal Journey From Ignored Symptoms to Multiple Surgeries

“Around the age of sixteen, the complaints started – cramps, pain in my back – but not yet to such an extent that I had to call in sick. That changed around the age of twenty-three. Then on my own birthday, I lay on the couch dying in pain, while my friends were partying outside. Yet I was under the impression that it was part of it, because that’s what my doctor always said. When I went to work, I had to sit on the toilet regularly to feel the pain less intense. The first time I called in sick felt so bad.

I’ve never been a squeaker, but now I really couldn’t do anything anymore. And stupidly enough, I still thought it was part of the job, even as I was writhing on the floor in the shower in pain. It felt hopeless. Until one day my friend got angry and said that this was really not normal. He insisted that I go back to the doctor. This time I found a replacement. She was immediately amazed at the large amounts of pain-relieving medication I had received. ‘That’s not good!’ she said.

She immediately referred me to a gynaecologist. For the first time I felt heard. I received an internal examination and immediately confirmed that I had endometriosis. It was nice to finally get recognition, to know that I wasn’t being an asshole. I was given hormone injections that would artificially put me into menopause and ensure that the endometriosis remained calm.

Because it was everywhere: on my ovaries, abdominal wall, uterus and adhered to my intestines. The plan was to first treat the pain with hormones and later to do surgery. But the hormones hormones did not help enough to suppress the endometriosis. Physically, but also mentally I couldn’t take it any longer, I literally went crazy with the pain. A faster operation was inevitable.

During the operation, my intestine turned out to be so damaged that a piece had to be removed. Afterwards everything seemed fine, but it soon turned out that I had an internal leak, causing faeces to enter my body, and I had to go under the knife again. In two weeks I had six operations, then I spent five weeks in the hospital. My body was weakened, sore and exhausted. I could sometimes kick myself for accepting the pain for so long. As a result, the endometriosis could have developed to the extreme.”

“I have to hurry with my desire to have children, because if the endometriosis starts to grow and settle in many places again, the chance of conception becomes smaller. With this in mind and the IVF process I have to go through, it feels like I have a ticking time bomb in my body that I have to be ahead of. I am now on Facebook with fellow sufferers.

That’s nice because I find recognition, but endometriosis is such an individual disease that it works very differently for everyone. Talking and reading about it is nice, but it says nothing about your personal situation. That is why I think it is important that there is more publicity. Sometimes you think that emancipation is very advanced, but not in the field of medical care. Disease investigations and drug testing are mainly performed on the male body.

A woman’s body is still not a priority. That really needs to change. Many women in my area did not know about the existence of endometriosis. Neither did I, while it determined my life.”

This ‘Real Life’ is in Flair 22-2023. You can read more such stories in Flair every week.