Endometriosis, I first heard that word one year and eight months ago at the ripe old age of 43, for that's when I had my first surgery.
I'm a woman of the world, how then, is it possible that I didn't hear of endometriosis until I was diagnosed with it?
It's still not talked about, that's why. This is changing due to many people tirelessly spreading awareness, but it's not changing fast enough. This lack of awareness hits us first, the ones on the front line.
Endometriosis is still a silent and largely misunderstood disease, and that silence can be as damaging to us emotionally, as the disease is physically.
This silence adds to our terror when we are diagnosed as so many of us know nothing about it. This disempowers us when we are at our most vulnerable, when we need the correct information, desperately, when we need understanding. When we need support. Where do we begin? Who do we believe? How do we recover and regain our strength when we have been told for years that it's normal to suffer?
Its not normal, and today I'm going to talk about how I gained strength, and with it, the confidence to face this disease head on with every weapon at my disposal.
I, like most women with whom I've spoken, was dangerously ignorant, when I first heard of endometriosis.
It’s all such a blur, tentative diagnosis, surgery, agonising pain and recovery, and, for many of us, the naïve hope that maybe,
‘I'm better now, I'll just take some medication and life will get back to normal.’ If only, I can hear you all sigh in collective unison.
Its like entering a strange and foreign land without familiar landmarks, the shockwaves last a long time and echo into every corner of our lives, nothing remains unscathed by the Endo Fire. And we don't walk out of that fire the same women that unwillingly walked in.
What saved me, after the numbing shock and grief had subsided long enough for me to breathe again, and what continues to save me, after multiple surgeries and secondary disease, for endometriosis has many friends and she likes company, was the one thing that gave me back a vestige of control, in a life that seemed to be totally out of my control, and that is, knowledge.
Knowledge is power, you've heard that before I'm sure, but in this case? It's true.
There were, and are, with endometriosis, so many factors out of our hands.
How am I going to make it through the day, can I have a child, are my organs fusing together, will this drug work, will this Doctor believe me, can I ever function normally, will I ever feel like, me, again?
I don't know, for endometriosis is as sneaky and enigmatic as it is tenacious and it presents differently in every woman, but we are just as tenacious, and we can learn how to fight it.
I started to research, everything.
Medications and their side effects, nutrition, inflammation, vitamins, acupuncture, naturopathy, pelvic physiotherapy, the list goes on...
I learnt about my body and what works for me, for we all have very different experiences of what is and isn't going to work for us, these are as varied as we are.
There is no ‘one size fits all’ for us, a drug may work wonders for one woman and make another violently ill. There is no right way, there is only the way we individually navigate it ourselves, by learning what works, for us. The only way to determine this is through trial and error, lots of error, but when you find something that really works it's wonderful, it's a win, and the small wins add up.
I started to question, everything.
When I see a Doctor I know as much, if not, at times, far more than they do, this takes me from being a patient to being a peer.
I question them, as I know of what I speak not only from reading but from talking, to so many of you, and from living with it, day after day.
Of course I don't know everything, nor do I claim to, but I'm learning, and what I do know, allows me to be an active participant in deciding the best course of action for me. It is your body after all, you get a say, the final say. If it doesn't feel right don't do it, I know this can seem daunting, especially if you're not following the advice of a Doctor, but follow your instinct, it knows.
I do all these things, as it empowers me, but I don't have all the answers, all I can share is what has worked for me, what has taken me from feeling powerless and terrified, to feeling like I am holding the reins of this disease.
It puts me, not endometriosis, in the drivers seat. Do I fall down? I do. Do I spend nights crying in despair and searing pain? I do. Do I get scared? Often.
But I also take the wins, and learning has given me a lot of them.