Chronically Trying: Six Months Without Painkillers
I completed my challenge and I’m ‘back on the sauce’.
I went to the supermarket. I knew it was risky. I had already started spotting and the pressure of the seatbelt against my uterus on the car ride over made me nauseous. Normally, I wouldn’t dare go shopping in this state. But — I hadn’t been home in a couple of days and my fridge was empty. I knew exactly what I needed and where it was, and my boyfriend was with me as help. I really thought I could pull it off.
Endometriosis is an Unpredictable Foe
I found myself kneeling on the floor, tucked away in the gift card section like a dying animal hiding in a cave. My backpack was spilled wide open, the berries I came to pick up were on the floor (don’t forget your endo diet!), my phone was in my hand. My mind was overcome by a thick fog.
I knew very well that it was ‘game over’. My legs gave up, my uterus was under extreme pressure, my intestines were in a knot. But no one was around, and I couldn’t move.
At some point, I saw a woman’s face very close to mine. I remember her big lips and dark hair, but not much else. She was kneeling next to me. I kept telling her I was fine. “You can’t help me,” I kept saying.
Surgery is not the Gold Standard
Up until the new ESHRE Guidelines for endometriosis came out a couple of months ago, the medical community all around the world swore by laparoscopic surgery being the so often quoted “gold standard” in the treatment of endometriosis. It took them decades of failure to admit that this is not true. I suppose they were hoping to have something else to offer before they admitted that medicine has completely failed women.
I had undergone the surgery knowing full well that the odds for success were very low. As a person who researches endometriosis professionally, I have the privilege of reviewing data before the larger community is pressured into swallowing their pride and admitting they were wrong. Still, I made the decision to go through with it. It was time — my ovaries were both in a state (chocolate cysts, fallopian tubes in weird yoga poses…) and I had no idea what stage of endometriosis I was at or what damage to expect. Explorative laparoscopy is a good diagnostic tool but a very faulty treatment option. I still went in with fingers crossed, hoping that I’ll be the estimated 48% that get a couple of years’ worth of peace after the procedure.
I was not.
The trouble with NSAIDs
Every person with endometriosis, and many with other conditions that cause painful menstruating, are familiar with non-steroidal anti-inflammatory drugs. They keep us all functioning.
I’m certain that most endometriosis sufferers will relate when I say that at one point in my life I became completely dependent on them, without being truly aware of it. Endometriosis is often falsely referred to as “uterine problems”, when it is actually a full body disease. It’s a chronic inflammatory condition which you feel everywhere — in your shoulders, neck, back, pelvis, buttocks, stomach, legs , muscles, bones— although its progression is associated with the menstrual cycle and menstruation is the time when the symptoms flare up out of control.
At one point I got alarmed by the rate at which I consumed NSAIDs. My main goal when it came to surgery was not feeling no pain at all, but bringing my pain levels down just enough that I could live NSAID-free.
Sucking it Up
I’ve already recounted my experience with the surgery and some of the consequences during the healing period. My following menstruations weren’t painless, but I was optimistic. I told myself — Even if I can make it just half a year without painkillers, it will all have been worth it. I suppose I felt that half a year is some sort of an achievement, a victory of Will. I imagined that half a year was enough to let the body heal itself from the damage of nibbling on quite potent drugs. Half a year, I hoped, was some sort of a sacred threshold — once you pass it, you’re cured.
I didn’t take a single painkiller for eight months. For the first couple of months, I genuinely didn’t need to. I experienced something magical — I walked on my period. I have never, ever, been able to walk whilst menstruating. It almost made my mother cry, to see me so happy over such a simple thing. I stopped looking at my menstruation tracker and planning events around my period — whatever happened, unpleasantness would be the most I would feel. My mind was clear and sharp all the time — I didn’t sleep through my period, I wasn’t drowsy the week before. I was a new person. I was free. I reached the six month goal and I was unstoppable.
Endometriosis Has No Cure
I’ve read and written and spoken this sentence a million times. It’s funny how, regardless of who you are or how much you know, you still hope for the impossible with all your heart.
My miracle surgery had an effect for a couple of months. I can’t really remember how long. I know that in the end I refused to take painkillers out of spite. I convinced myself I was fine and I didn’t need them, but I had just been waiting for the calendar to flip.
I ended up doing two more months than I pledged— which was completely unnecessary. By March, it was very clear that the surgery hadn’t helped with pain management. But I was stubborn. I refused to accept the truth. I stayed in bed for the duration of my period, covered in heating pads, chugging down CBD oil, convincing myself that it’s not that bad because I can survive without painkillers. I would’ve made it three months, if I hadn’t passed out in the supermarket the other day. I’m glad I did.
Should I Suck it Up?
Years ago, I accepted endometriosis and all that living with it entailed. I adapted my lifestyle: changed my diet, my exercise regiment, gave up alcohol (well, almost), learned to adjust my plans and expectations. I followed the science, and did what it said. It all worked. My quality of life has enhanced tremendously since I learned how to live with and according to endometriosis. But the science also says — you need NSAIDs.
After my boyfriend finally found me in that supermarket, he pulled me up to lean against the shopping cart and we somehow made it out of there. My memories are very blurry from then on. I know I vomited my soul out. I know I had diarrhea in between purges. I know I couldn’t walk. I know hot stones replaced my internal organs and I could feel them push and burn.
I also know I knew exactly what to do. There is a reason why I have four pillows and three huge stuffed animals in my bed — they each have a role to play when it comes to building a support scaffolding for my body. There’s also a reason why I always have a glass jar of NSAIDs on the table in the hallway, right next to the keys and face masks. Take one, lie down, close your eyes, let yourself mope and scream and whine until the medication puts you to sleep. Repeat, until you feel your legs again.
If I had taken the pill as my doctors taught me — two days before, with the first sign of spotting — I never would have vomited. I would’ve been in extreme pain for one day, instead of three. I’ve been living with this illness for 17 years, I know the ropes. So what the hell got into me this year? Why did I so desperately want to be able to say I wasn’t taking NSAIDs anymore?
Was it spite? Was it hope? Was it both? Did I need to have something to show for my scars? I refused to believe the surgery had failed. I wanted to be one of the special ones. But I’m not. And that has to be fine.
Important:
There is a very big difference in substance abuse and taking prescribed medication as directed to enhance your quality of life with chronic pain. This text in no way supports substance abuse. If anything, it warns against it, as taking too much leads to even more trouble than taking too little.
I, for one, am still proud of myself. I’m proud to say that even though I’m probably never going to be able to live without painkillers, following the “endo lifestyle” has taken me from everyday intake to several pills per month. I think this is a great achievement. This is what we should all strive for — the possible. The problem is, the possible is hard work.
