Living With Endometriosis: Putting on a Brave Face While Crumbling With Pain

I put on a brave face while I was crumbling inside with pain.

Like a stubborn weed, endometriosis has slowly and painfully taken over my fallopian tubes, uterus and ovaries. Like a parasite, it has taken over my entire reproductive system. 

After ten years of painful periods, I was finally diagnosed with endometriosis in 2022. The debilitating pain I endured every month was finally given a name and acknowledged. It was given the distinction of a medical disorder, and I was given the benefit of doubt that perhaps I was indeed suffering from pain and not overreacting. 

We have dangerously normalised period cramps, so much so that even when I’d clutch my tummy in pain and curl up in an empty room, I’d push myself to get back to work. We’re all taught to suck it up and not be a wuss. “Oh, come on, labour pain is going to be much worse,” they’d say. Little did they, or myself, know that it was a sign to stop and investigate.

To endure that level of pain is not normal. Women who suffer from endometriosis and have given birth describe their period cramps as worse than childbirth.

Today, I’m 34. I’m told I have a condition where the uterine lining that is supposed to shed during my monthly cycle is growing around other organs. The tissue has flourished under the guise of period cramps and clumped my organs together.

“Everything was stuck,” the doctor said, clenching his palms together into tight fists. I remember this vividly. I was lying in the observation ward outside the OT after my surgery, with excruciating pain enveloping my body.  

Also read: My Dear Uterus

Laparoscopic surgery is one way to treat endometriosis. It’s not a cure, but a way to make the horrible red visit every month slightly bearable. Doctors removed the tissue around my organs, ruptured something ironically called a chocolate cyst, removed a fibroid, and tried to salvage my fallopian tubes. 

This whole episode definitely made me sad, but at the same time curious. Why did we all assume this pain was normal? Why is the vocabulary limited when it comes to describing the level of pain young girls and women endure?  To delegitimise all pain as ‘cramps’ puts women’s health in a precarious position, doesn’t it?

Perhaps, it’s also time to invest more into research about endometriosis. This condition, despite its severity, is ruefully undervalued and under-researched. The cost of endometriosis is more than a painful period. The debilitating pain reduces productivity, leading to financial loss. Endometriosis is estimated to cost $9.7 billion each year to the Australian economy. And let’s not forget the costs associated with treatments and surgeries. 

Thanks to the lockdown, I was more aware of my bodily functions, more tuned into my discomforts, and made a mental note of my pain duration, exact location, and when precisely it occurred or rather after what activity I experienced it. It took nearly six months of observation. I’m not sure if it was the intricate detail, a stroke of luck, or sheer dedication from the doctor that I was prescribed further tests. Not many have these kinds of circumstances. Perhaps several young girls and women are unaware of this condition but plough through their regular lives despite the seething pain in their bellies.

But maybe if there is more awareness, maybe if there’s mobilisation, we can catch this earlier. I know now that Padma Lakshmi has endometriosis and she’s being phenomenally vocal about it, but I rarely find people in my circle talking about how dangerous period pain can be. We need to engage in discussions beyond painkillers and heat packs. Tell girls around you that they don’t have to hide their pain, they don’t have to endure it.

Also read: Period Pain: My Thoughts on Pill Shaming

And do this not for procreation but for their physical well-being. They deserve a quality of life that is good, and not just because they have to play host to an offspring, but because they deserve to be healthy and pain-free. Then perhaps, there will be a shift? I do not know. I guess time will tell.

If you, reading this, suffer from period pain, remember you are not alone. That pain where you feel like the uterus is burning like molten lava or slowly disintegrating is not your doing and maybe not normal. You are stronger than you know but meet the doctor as well.

Romi Rajendran writes for a living, much to the chagrin of her bosses. But she thinks she’s getting better. 

Featured image: Sora Shimazaki / Pexels