Three years ago today I went in for a surgery to remove a possible dermoid cyst from my left ovary. A simply, 1.5 hour surgery. Four hours later, surgery was completed. My Mum and Jim were never advised why my surgery was taking so long, didn’t have their questions answered. So it was a very stressful four hours for them. No cyst…but Endometriosis lesions and adhesions everywhere inside my pelvic cavity. And it was a three-week recovery process, but months before I felt good.
Three years ago today I learned I wasn’t crazy. I wasn’t weak. All of the pain I’d experienced since my teenage years wasn’t normal. I wasn’t supposed to HURT like that. I wasn’t supposed to miss days from school or work. I wasn’t supposed to bloat up like a balloon. It wasn’t normal to bleed for 10 days.
Most importantly, I learned I wasn’t alone. One in Ten women suffer from this invisible illness. An estimated 176,000,000 (yes, that’s million) women worldwide suffer. Well, we call it an invisible illness because Joe Public cannot see it from the outside. But it can bee seen…from the inside. Invasive growths throughout the body, leakage, blood-filled cysts, spiderweb-like scar tissue that weaves organs together or twist them out of shape. Surgery is the only way to diagnosis the disease…and considered the best way to manage it.
A recent study found that Endometriosis lesions shared cancer-causing mutations. Endometriosis is not cancer…but it can spread like it. For most who suffer from Endometriosis, it’s found in the pelvic region: fallopian tubes, ovaries, uterus. But for others, it can be found anywhere: liver, diaphragm, bladder, ureters, lungs, heart, brain, bowels, spine, belly button – there are even cases of people having it in their sinus cavity, their fingernails, muscles, and nerves. The list goes on and on and on.
Some lucky women don’t suffer from the pain the disease may cause. Others suffer several days a month. And, yet, others suffer every single day. And there have been cases of men developing Endometriosis, as well as animals (including a dog!). And so many women are killing themselves because there is no end in sight, no hope for a pain-free existence. What helps one woman may not help another. And they just…let go. It’s ruining lives.
There is no cure. And treatment options can have horrendous side effects, be insanely expensive, or have little to no effect. And none of it is permanent. I had my second Endometriosis excision surgery in September of last year. Two surgeries in three years. Some women have surgeries every year…or every few months. I consider myself lucky.
You may wonder why I post so often about Endometriosis. Why I blog about it. Why it’s consumed my life. This. This is why:
There are physicians out there that are still advising their patients that their pain is normal. “It’s just part of being a woman.” Or “get pregnant and you’ll feel better.” Or “A hysterectomy will cure it.” Or they refuse to perform a diagnostic surgery to at least *LOOK INSIDE* to confirm the presence of the disease. And, yet, some surgeons will cut you open, find lesions, have them biopsied and confirm they’re Endometriosis – and yet fail to REMOVE the lesions. WHY?!? Why would you LEAVE that in there?!? Cut it out!!!!! It’s not doing anything but causing havoc, pain, and internal scar tissue. It will only continue to fester and worsen.
I’m ranting…so today, three years ago, I woke up with answers. And started an endless quest for more. I have a greater understanding of this horrible disease. And have met so many amazing women and physicians along the way. Three years ago was an amazing day.
And I celebrate it today. 
If you know someone with Endometriosis, please be patient with them if they need to cancel plans, or just stay in bed all day, or need to go home early. It can be so debilitating.
And if you suffer from Endometriosis, consider yourself hugged.
