Living with Endometriosis

my story, finally told from the beginning

When someone asks me how endometriosis has affected my life, I stumble and stutter, mostly because I don’t know where to start. But also because that question is the heaviest thing anyone could ask me.

(What is endometriosis?)

I can’t sum it up neatly in a couple sentences, which, whether people realize or not, is what they want. They have some desire to understand but a much deeper need to not be made uncomfortable or, even worse, be forced to pity me. I don’t want the pity either, by the way.

Endometriosis is like realizing you have a long lost evil twin (I watched a lot of General Hospital as a kid!). Part of you knows something is deeply and significantly wrong but you can’t see it or name it, until one day, it’s staring back at you with an eerie familiarity.

I first started having symptoms at age 14 and I spent 11 years not knowing what was happening inside my body. I had the prototypical experience sadly. Told every version of “it’s just a bad period,” “you need to relax, stress less”, eventually “get pregnant, it’ll help”, and worst of all, “there’s nothing wrong with you.”

How I wish that was true. But I’d spent years bleeding heavily, in extreme pain, fainting, vomitting, unable to function for days or weeks at a time, taking more pain medication than anyone should take.

My first surgery was at 25. I had spent the previous year having every test done including an ovarian cyst aspiration (think long needle into your pelvis to remove liquid and reduce pressure from a large cyst). Finally, and I honestly don’t know how many doctors later, one said to me, “I think you have endometriosis.” She handed me a pamphlet and a requisition for more tests. Three weeks later I was on her operating table, and a few hours after that, it was confirmed: Stage 3 Endometriosis.

I had no idea what endo was, I’d never even heard the word before. I was 25 and it felt like the floor was melting away underneath me. Would I be ok? Yes, and no.

After the surgery, I was pumped full of different medications and birth controls. My body couldn’t handle it; actually, everything made me feel worse. The days blended together and I fell into varying states of mental distress, depression, and physical unravelling.

But I was young, I could fight this, I thought. And I did. I got off all the meds. I got fit. Ate better. Lived better (I thought). And for a while, I was ok.

And by ok, I mean I managed. I could hide my symptoms, work around the pain, manage the pain medication well enough, and run my life around the worst of it. And I was running, I just didn’t realize it at the time.

The thing is “worse” is a sliding scale when you have endometriosis. Gradually, I was getting even sicker than before.

My immune system was weakening. My nervous system was in constant survival mode from battling pain and the unpredictability of my symptoms for years. My GI system was falling apart — more food intolerances, severe bloating, vomiting, unable to poop well / consistently. The pain became more and more severe as months passed. My ability to tolerate stress was hitting 0.

Almost three years ago, it all came crashing down. Again. I thought I had it under control but then all those symptoms went from occasional to everyday.

I had to leave my job. And I threw the proverbial kitchen sink at this devil of a disease. I saw a GP, gastroenterologist, endo surgeon (multiple), dietician, naturopath, physiotherapist, and psychotherapist just to get my head wrapped around how I might be able to get back some quality of life.

And in August 2024, I had my second surgery. Major surgery. Diagnosis: Severe Stage IV Endometriosis with Bilateral ovarian entrapment, Obliterated cul-de-sac, Sigmoid and rectovaginal endometriosis, Abnormal appendix, Severe retroperitoneal fibrosis, Bilateral ovarian cystic masses, Abdominopelvic adhesions and Possible adenomyosis.

Post Surgery, August 2024

Surgery is not a cure though but it’s the best option we have right now. In fact, there is no cure, no understanding of what causes the disease, and limited access to quality healthcare. Are you angry, yet?! You should be.

I’m 38 now. I started fighting this at 14 before I even knew its name, and some days I wonder how much fight I have left in me.

It’s tough living life with so much unpredictability. It’s tough feeling like I have the right to have dreams and ambitions when this disease has taken so much away from me (and millions and millions of women). It’s heartbreaking knowing that fighting is a life sentence.

Everyday, I feel the weight of the person I could’ve been had Endometriosis not picked my name out of the hat. But in that darkness, I have to find the light. I have to choose that today and the next day and the one after that will see me rise and not slink away. I make it sound easy, it’s not.

This year, after recovering from major surgery, I’ve started the journey of running my own business. It’s always been one of my dreams to be my own boss but the roots of doubt run deep. So I’ll try and hope beyond hope that I don’t fall flat on my face. Because when endo and I meet again, I want to be able to greet her with a full heart, knowing I still tried, on my own terms.

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Endometriosis is a chronic whole body condition that affects 1 in 10 women globally. It is a Top 20 pain condition in the world and takes, on average, 7 years for diagnosis. And it receives only a fraction of healthcare research funding, often less than 1% of allocated funds. 1%! That’s not a typo!

We let 100s of millions of women suffer for years — they are unheard, misdiagnosed, mistreated, prescribed dangerous medications, denied surgery, and left to believe they are “crazy” or “just anxious” — while this unforgiving disease proliferates their body and becomes more and more severe over time.

We need awareness, we need funding, and we need better trained physicians and surgeons. To learn more: https://endometriosisnetwork.com/

Even if you don’t donate, don’t click on the link, don’t read more (I’ll understand) but please, I beg you, think twice before thinking, “Oh, it’s just period pain”. And please believe women, it’s not even the minimum of what we deserve.

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thanks for reading
💛 simren, endo warrior and chronic illness advocate