Invisible Illness, Visible Impact.

Have you ever heard of a condition that affects 1 in 10 women worldwide? That’s about 176 million women, give or take a few million. Not a big deal, right? I mean, it’s just a chronic illness with no known cure, takes on average 8 years to diagnose, and turns women lives upside down. Symptoms? Just your regular debilitating pelvic pain, chronic fatigue, painful intercourse, and digestive issues — nothing that a weekly yoga and a green vegan smoothie can’t fix, right? Oh, and it’s one of the top three causes of female infertility. So yeah, it only can affect your body, mind, relationships, career, and overall quality of life. Nothing major. Any guesses on what it is?

Yep, it’s Endometriosis. Ever heard of it? If you haven’t, don’t worry, you’re in good company — most people haven’t, unless they or someone close to them has lived through this particular nuisance.

Let me walk you through my very own journey on the endometriosis rollercoaster. Strap in, it’s a wild ride. For me, it only took about 17 years to get a diagnosis. Just almost half of my life of people telling me I was exaggerating or that it was just ‘normal period pain.’ High school was a blast — watching other girls living their lives, going to classes, doing sports, competing, and meanwhile, there I was, pale as a ghost, curled up with cramps that felt like an alien invaded my body. “You’ll be fine!” they said, while I was popping painkillers like candy just to get through the day.

Oh, the doctors I’ve seen, the tests and procedures I underwent and the advice I’ve heard! “It’s all in your head,” some said, probably fans of Sigmund Freud. Others suggested I try less stress, more yoga, or just toughen up. “You should become an actress, you’re so dramatic,” I was told or “Just wait, and it will go away by itself”, or “Everyone has the pain, so just tolerate it.” Another favorite: “Every woman has period pain, what’s wrong with you?” As if I was competing in some twisted game of menstrual endurance.

But the years rolled on, and so did the pain, only more intense, more relentless. I tried to make it work — planning my life around this uninvited guest. I found temporary solace in hormonal pills, but like all good things, the relief was short-lived. At some point I could barely tolerate the pain as it was lasting not just a few days but few weeks each time and basically I have been feeling that my time is getting stolen. Before long, I found myself in the ER, twice in three months, in so intense back & belly pain with the added bonus of a fever and a heart rate that could give any workout app a run for its money.

And then, a miracle — or maybe just a doctor who actually listened: “Have you ever been checked for endometriosis?” Eureka! We might just have a winner, folks. A few tests later, and there it was: a diagnosis of Deep Infiltrating Endometriosis (DIE) — yep, that’s its actual acronym. OMG? I mean, could it sound any more ominous? At least now I had proof that I wasn’t just ‘too sensitive’ or ‘making a fuss.’

But then came the kicker: there’s no cure. Just a menu of ‘pick your pain management,’ featuring hormonal treatments, surgeries, and for the “lucky ones”, the promise of multiple surgeries as endometriosis has a nasty habit of coming back, sometimes leading to a hysterectomy.

So what is exactly endometriosis? It is a medical condition where tissue similar to the lining inside the uterus, known as the endometrium, begins to grow outside the uterus. This abnormal growth can affect the ovaries, fallopian tubes, and the tissue lining the pelvis, and in rare cases, it can spread beyond these areas. During the menstrual cycle, this tissue behaves like the uterine lining: it thickens, breaks down, and bleeds. Except there’s no exit, so it just sticks around causing inflammation, pain, scar tissue, and adhesions that make organs stick together. These adhesions can cause pelvic organs to stick to each other, which may lead to severe pain and complications, such as fertility issues.

So, that’s chapter one of my endo saga — 17 years of pain, misdiagnoses, and some world-class letdowns. But getting a diagnosis was just the beginning of the adventure. Stay tuned for the next part, where I dive into navigating treatments, fertility issues and extremely rare complication of endo.

Spoiler alert: It only gets more interesting from here..