Nobody Told Me Endometriosis Was an Inflammatory Disease!
Finding that out myself changed everything.
I had my laparoscopy. I had the confirmation. I finally had the word, endometriosis and adenomyosis - confirmed by a doctor who believed me. I thought that would be the moment everything started making sense.
It wasn’t. Not yet.
Things only really started to click later, when I was on my own, doing my own research, and I came across something that stopped me cold: endometriosis is an inflammatory disease.
Not one doctor had ever told me that. Not once.
What I Actually Knew About My Own Condition
If I’m being honest, my understanding of endometriosis before I started digging into it myself was... pretty surface level. I knew it involved the uterus, caused painful periods, and hard to diagnose. That was the most of what anyone had explained to me.
No doctor ever sat down and told me was what endo actually is. At least not in a way that gave me the full picture.
No one explained that it’s a condition where tissue similar to the uterine lining grows outside the uterus - on organs, nerves, the bowel, the bladder, sometimes far beyond the pelvis. No one told me that every month, that tissue responds to hormonal changes the same way the uterine lining does: swelling, bleeding, with nowhere for it to go. No one explained that over time, this creates inflammation, internal scarring, and adhesions that can essentially bind organs together.
And crucially, nobody told me that all of this means my body is in a near-constant state of inflammation.
The Puzzle I Didn’t Know I Was Trying to Solve
For years I had symptoms I couldn’t connect. The pelvic pain was the obvious one. But there was also the back pain that never really went away (it drove me to stop playing sport and exercising). The fatigue that felt so much bigger than just being tired. The brain fog, the way my whole body seemed to be working against me on certain days.
I kept bringing these things up. And I kept being told, in one way or another, that they weren’t related. That I was probably just stressed. That some people just have painful periods. That it wasn’t anything to worry about.
When I found out endo was an inflammatory disease, the puzzle assembled itself in about five minutes.
Of course I was exhausted - my body has been in overdrive for years. Of course my back hurt. Inflammation doesn’t stay neatly in one place. Of course I felt like my whole body was involved - because it was. That’s what this disease does.
The thing that gets to me is how much sooner I could have understood my own body if someone had just told me this or the information was readily accessible for young women.
Why Weren’t We Told?
I’ve thought about this a lot, and I think it’s connected to something bigger than just one doctor not explaining things well. Endometriosis affects roughly 1 in 9 women and people with a uterus, yet the average time to diagnosis is still around 7 to 10 years. Seven to ten years of being dismissed, misdiagnosed, or simply not believed.
When a condition is this under-diagnosed, it’s rarely because the information doesn’t exist. It’s because something in the system isn’t passing that information on. Whether that’s time pressures, gaps in medical training, or the long history of women’s pain being minimised, probably all three - the result is the same. We go years without understanding what is happening inside our own bodies.
That’s not okay and it’s exactly why conversations like this one matter.
What Knowing Actually Changes
Understanding endo as an inflammatory disease shifts how you approach everything. It’s the difference between feeling like your body is randomly falling apart and understanding that there is a reason, a mechanism, a thing actually happening.
It opens doors to asking different questions: about diet, about stress, about the kinds of support your body actually needs. It helps you advocate for yourself differently in medical appointments because you understand the language of your own condition. It helps you extend yourself a little more compassion on the hard days, because you know your body isn’t just being difficult. It’s fighting something real.
Most of all, it makes you feel less alone. Because suddenly the exhaustion, the back pain, the brain fog - it all has a name.
You Deserve to Understand Your Own Body
If you’re reading this and you’re somewhere in the middle of your own endo/adeno journey - maybe diagnosed, maybe still fighting for answers, I want you to know what I wish someone had told me years ago.
Endometriosis is an inflammatory disease. Your symptoms are connected. Your pain is real. Your fatigue is real. Endometriosis affects your whole body, not just your uterus!
You are not dramatic. You are not weak. You are living with a complex, systemic condition that has been overlooked for far too long.
Bek - In Spite Of Pain