I have endometriosis and this is my story. I wrote it to share my experience with those who have never really understood this condition, I wrote it on behalf of the 1 in 10 women who have this condition worldwide and for the ones who are yet to be diagnosed. But more importantly, I wrote it to show you that you can THRIVE with endometriosis through taking care of yourself from the inside out. It's about getting back to basics... but don't take my word for it. Read on for yourself.
I sit here, with a blue water bottle (gifted to me by a fellow period pain sufferer and long time friend) poised on my tummy, perfectly positioned across my uterus. I wriggle every 30 seconds or so, rocking back and forth unable to deal with the deep throbbing pain for too long without having to distract myself. My eyes are winced shut, the curtains are drawn. My amazing partner Matt, massages my feet, trying to distract me from the waves of pain that just keep circulating. The pain is like something is grabbing at your insides, contorting them with anger.
I always ask myself in these moments, if endometriosis will be worse or better than childbirth.. If i can’t handle this how will I ever give birth… or perhaps that’s just it. If I CAN handle this, then birth will be breeze. I’m still yet to know.
Physiologically, endometriosis and birth have quite a few commonalities, one that is not lost on me is how my body conveniently forgets the pain each month, only for it to strike me down out of nowhere and render me totally debilitated. 'Endo' is a menace at best, often catching you when you’re out with friends, momentarily forgetting that you have this awful condition. Or perhaps it strikes when you’re in the middle of an important meeting, as it has done for me, while I’ve been opposite a client (that was all kinds of awful).
Here’s an example of one of the worst attacks I had... I started my morning with a gym session with Matt, my partner. We laughed on our way home at me being awarded as a loyal gym member for having smashed out 270 workouts.. The picture of health, no?
I then rushed home, showered, gathered up my stuff to head into clinic and practise as a naturopath.
Fast forward 15 minutes into a consultation. This beautiful, gentle women, started to share her story. I could see that she was so desperate to be cracked open, she meekly explained some of her ailments. But I knew deep down that she needed some emotional support…I was gearing up to start drawing these answers out of her, and then it hit. My ears started ringing, I literally felt the colour drain from my forehead through the floor. My stomach twisted anticlockwise and the overwhelming sensation that I was going to vomit came over me. I knew I was in it for the long haul and this was not going to pass. I tried to fake it for a few minutes, asking questions, nodding along. Holding back tears, vomit and blood all in one. The rest is a blur, I ushered her out, offered her a follow up and gave her a discount. This poor woman who had come to me for support, carved out time on her Saturday and poured her heart out to me, was turned away and sent off with virtually no guidance and no reassurance that she would be ok.
But no time for that. I ran to the bathroom. Pulled the sliding door shut, not even remotely concerned about the fact that anyone could walk in. My body then released, I was sick. On all fours. Whimpering. Yep endometriosis has the ability to bring you to your knees, strip you bare and then make you beg into thin air.
Eventually I peeled myself off the floor, grabbed my phone and called my partner, telling him it was urgent and to drop everything. I couldn’t move. Matt arrived to find a shell of me, unable to do up my jeans for fear that I would bring on another cramp. He drove me home, placed me delicately on the couch. And then it was a waiting game. Four hours of adjusting my position, moving around, alternating between heat and cool, sipping on water but trying not to vomit. Crying hysterically.
And then it stopped. Like sitting in the eye of a storm. The clouds parted and a calm washed over me.
I gained consciousness, like real consciousness. I suddenly remembered that client I had failed.. The things I’d not completed on my to-do list and everything that I had placed at an involuntary standstill, all for this condition. And the worst bit of it all… knowing that next month I was going to have to do it all over again. ‘Brace yourself’, I thought. ‘There’s no end in sight’.
One thing I haven’t mentioned, was that I had booked in for a laparoscopy. This is a surgical procedure where a gynaecologist will make small keyhole incisions (usually 3-4 somewhere across the abdomen). These incisions will allow the surgeon to go in with a camera and explore the area for endo. They’ll look at not just your uterus, fallopian tubes, vaginal opening but also your rectum, liver, appendix, ovaries and bowel. Endo can appear in so many places and cause so many issues.
I was very reluctant to get the surgery, I felt like a fraud. I felt like everything I told people was that you could handle things naturally. But then I got to a point where I knew I needed to know what was happening in that body of mine. Now I know, there is no shame, no failure and no harm in having a medical procedure if you know in your heart that it is going to relieve your pain. I also chose surgery because I was deeply concerned about my fertility. Being maternal to my core since the age of about, oh probably 10. I knew I needed babies. For many endo sufferers, having babies is not an issue, but for some, endo can impede fertility. So when this came into question, there was very little hesitation as to whether I should have surgery. It was a no brainer.
GETTING IT DONE
On the day of the surgery (a few months after my worst endometriosis attack), I felt completely calm. It wasn’t until I pulled up to the hospital holding my man’s hand that I started to get the nervous jitters. It was almost that feeling you get before a big presentation. Like my body was saying ‘right Steph, let’s get this done. Game face on’.
After a few hours of waiting I was quickly doped up a cocktail of ‘champagne’ pain killers and whisked into surgery. The rest was a blur of grogginess, oxygen masks and confused conversations. The one thing I remembered was seeing my surgeon. I immediately asked, ‘is all the fertility stuff ok?’. ‘Everything is working perfectly…’ and then I slept for the first time in a long while, feeling utter relief.
I was immediately taken back to my room once awake, Matt my partner was there in a matter of minutes. Holding my hand and gently stroking it as I winced in pain. The pain mainly stemmed up through my shoulder blades. It’s residual carbon dioxide (that they use to swell your belly for surgery) trying to escape the stomach cavity. It’s excruciating and the only way I can describe it as I imagine a heart attack feeling, but obviously not as severe.
My swollen belly - filled with gas to help with surgery.
I had a catheter inserted during surgery. The main confusion was understanding that I could urinate without going anywhere… I don’t think i’ll ever fully be comfortable with that sensation!
I had a broken sleep that night but went to bed feeling at ease. Albeit in a little bit of pain. This whole experience has made me so grateful to live in a country where I can afford healthcare and support, and where nurses are taught such patience. What bloody good eggs they are…
COMING BACK TO REALITY
Things sunk in when i woke at 6.30am. The aesthetic and adrenaline had worn off and a flood of emotions replaced them. I rolled my head to the side and sobbed into my pillow. I sobbed in relief, sobbed in pain, sobbed for my womb, sobbed in gratitude sobbed for my past and my future, and most poignantly, sobbed for all the women who have far worse scenarios and outcomes to cope with. I will help these women, I thought. As I rolled over and slept a little longer. Later that morning, my surgeon arrived.
She told me that I had endometriosis of the vagina as suspected, specifically the back both left and right. The best bit, nearly all of it was gone. I had spent months leading up to my surgery committing to living the cleanest and most anti inflammatory life I could, and blow me down, it bloody worked! This whole tedious, painful experience has taught me something huge.
Never let someone tell you there's only one way to do things. You know your body.
MY LIFE NOW
Since having my surgery, I have noticed a drastic reduction in my symptoms, but do you know what? If I don't take care of my body, If I drink lots of alcohol or smash the coffee. I feel horrendous, my cramps hurt, my breasts swell and life is just so much harder.
So now... I just DON'T do those things. Instead, I enjoy a glass or two of wine on the weekend, I embrace decaf, I exercise mindfully, I honour my body, I practice self-care, I eliminate toxic chemicals and people, and I manage my stress.
When it comes to supplementation I rotate between high doses of curcumin, NAC, brassicas, milk thistle, echinacea, andrographis, vitamin C, magnesium, zinc, B vitamins and probiotics. Look, it's certainly no summer cocktail but it keeps me sane and it's my way of saying YES to what my body needs. What your body needs may be different... it's all a work in progress and a whole lotta trial and error.
THESE, my friend, are the long term changes that will change your health for the better. I promise you.
"The wound is the place where the light enters you."
Me, happy and healthy, travelling with my beautiful boyfriend.
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Lots of love.