Shit, I have endometriosis (and maybe you have it too!)

I rather not write about too personal stuff so it took me a while to decide if I wanted to publish this blog. But the idea that there might be so many women like me who go through a lot of pain without knowing the cause of their agony, convinced me to share my story.

It’s been a hell of a last few weeks for me with regard to my health. In between my two vaccinations I got tested positive for COVID-19, and the menstruation that followed was terribly painful. Before some readers here are quickly jumping to conclusions: there isn’t enough research yet to say something useful about the link between COVID-19 or the vaccinations and menstrual problems. Personally, I think the virus probably intensified the manifestation of my health problems but definitely isn’t the cause of them.

When the pain became unbearable and I was really afraid that either my appendix was bursting or there were stones in my gallbladder or kidneys, I visited a doctor and a few days, scans and tests later I got diagnosed with endometriosis. And even though that isn’t something to be happy about, I was relieved to finally understand the pain I was dealing with. Not just now, but in the past few years.

Endometriosis is a disorder in which tissue that normally lines the uterus grows outside of the organ. The tissue can be found on the ovaries, fallopian tubes or the intestines and even in other parts of the abdomen. It results in (a lot of) pain and menstrual irregularities.

I’ve been dealing with menstrual irregularities for a long time already, but nobody ever told me endometriosis could be the cause of that. The last time I visited a doctor in my home town in The Netherlands was four years ago. I had to leave work because of menstruation cramps and I remember sitting in the train back home from the office talking to myself: “Come on Sanne, you’re almost there, breathe in and out, two more stops, you’ll survive”. It was such an extremely painful experience that I wanted to check with the doctor what to do about it. He suggested painkillers and I thought maybe my stressful life at that time impacted my period a lot.

I guess we women still grow up with the idea that menstruation pain is a normal thing and since the experience of pain is very personal, we tend to overlook other causes of the distress. Besides that, it’s widely known that our Western medical tradition is mainly based on male problems not female. The area of hormones is considerably undetected. I’m not a health expert but I think we can agree on this.

My mother told me how her doctor told her forty years ago when she visited him with similar complaints that she probably had “a housewife intestine”, meaning that as a housewife she probably was so busy that she had to eat standing up, hence the pain in her belly. Luckily, medical professionals learned a lot in the last four decades but since I got my diagnosis I wish I had known it earlier. Especially because the internet reveals a ton of information, calling endometriosis ‘a common condition’. Sure, I could have discovered it myself in that way, but I guess it was my blind spot.

Research shows that most women find out about having endometriosis after seven years. There are effective treatments available – such as hormone therapy and excision surgery – but equally important are the things you can do to soften the chronic illness in an early stage. I’m new to this subject so I haven’t read about it a lot yet, but I did study about inflammation years ago and that’s what endometriosis is (a chronic inflammatory condition). The hormone system influences inflammation and therefore choices to use birth control or not or considerations for lifestyle changes (diet, exercise) should be more talked about in the context of endometriosis. Besides that, the condition runs in families and can be inherited through genes, so when you visit a doctor it would be good if she or he asks about the health history of your (grand)parents. 

I write this to create awareness about endometriosis because if it took me so long to understand the cause of my pain, I’m sure there are more women out there who are wrapped in unnecessary uncertainty. If there is only one person I can help with this story, I’m already satisfied. Please spread the word if you know someone who needs to read this.