Everyone’s lying about endometriosis

Every time I researched about people suffering from endometriosis online, surgery seemed like the compulsory first step. But what next?

Illustration by Alghozy on Unsplash

“After 4 surgeries, I finally know how to tackle endometriosis.”

“It took me 2 surgeries and years of pain to understand my body.”

“Endometriosis has a high chance of recurrence after surgery, but here’s how I stopped it!”

Every time I searched for testimonials from real people suffering from endometriosis online, surgery was the common term.

Fitness and lifestyle influencers specializing in endometriosis had many different things to say — ways to manage your diet, minimize the pain, how to make the medical professionals listen — but there was an entry-level requirement to get to any of these stages: you had to have a surgery done!

Imagine an exclusive club that gave passes solely based on whether you have ever gone under anaesthesia, let your body get into a lithotomy position, and allowed doctors to cut open your abdomen.

And, I still wanted to get into this club. Not because I was under the delusion that an operation was going to be a fun time, but because it appeared to be the light at the end of the long, dark tunnel called living a life with endo.

As the mountain-load of tasks to deal with this incurable, under-funded condition kept growing larger in front of my eyes, I decided to shut them tight and jump head-first into the first step of action: surgery. I saw a glimmer of hope on the other end, decipherable only once you have had the endometriotic tissues excised from your body.

So, did I see the light?

The pain started before the operation

Before I address the illumination question, here’s a little glimpse into the very painful period right before I went under.

“Oh my god!”

This is exactly what I kept shrieking out loud as two nurses and a doctor had me pinned on two sides, inserting a cannula (channel in colloquial language) in my right hand. Apparently, I had extremely thin veins, so the nurses had failed to find a proper one despite poking both of my hands the previous night. Now, this difficult task had been handed over to the doctor who had to bring me out to the operating theater (for the strong lights) to achieve the impossible.

“It’s hurting,” I cried out to deaf ears as the doctor shoved the needle into the back of my palm.

Crying myself out in the waiting area, lying on a stretcher, I was comforted by an elderly gentleman (must be an assistant surgeon) as he massaged the (now swollen) back of my hand. He was doing well with the comforting until he asked whether this was my first surgery. I replied yes, and his follow-up question left a bitter taste in my mouth.

“Then you cannot break down like this; this is a small thing. When you’d have to produce babies… You have to get ready for that.”

Ah, sure, how could I forget my prime goal in life as a woman?

As I was wheeled into the surgery and slowly lost my senses, I was praying the worst was over.

It wasn’t.

Graphic created by author in Wordificator

The part nobody talks about

My mother, who stayed at the hospital as my attendant (life saver, I call her), tells me I was a very alert and happy person after the 2-hour surgery. I was chilling, telling visitors jokes, laughing with them, cooperating with the nurses, and assuring family members that there was nothing to worry about as anaesthesia was in charge of my emotions.

But after a day and a half, the effects wore off, revealing my usual — sceptical and deathly afraid of needles — self. Interestingly, for reasons unknown to me, the nurses thought jabbing more IV injections and removing the catheter were better suited to be performed while I was right on top of my senses, so that I would get the full effect of the actions!

Hence began the most torturous experience of my life.

The two days I was in the hospital, I was introduced to new forms of pain and suffering. And, more importantly, I was being told all of this was a part and parcel of my female life (cuz you know the future goal), so I should buck up.

I would not say the nurses were apathetic, but there’s definitely an inherent sympathy threshold existent in society; these medical professionals are also a part of it. As per this threshold, women handle pain better; they simply are stronger (not in any leadership sense but in a tolerating sense). You can tease a woman more, you can test her patience more, you expect her to withstand more, and the only way out is if you deliberately rethink these notions and actively work on these prejudices.

On the day of my discharge, my surgeon said to visit him in 15 days with a smile. Walking at a snail’s pace, bent over, with a stomach resembling a battlefield, and two arms black and blue (from the various needling), I was not sharing his enthusiasm.

In fact, I was not sure how this deep, engulfing ache was going to go away anytime soon; how my parents would manage my needs without the nurses’ help; how they would be cooking, feeding me, and living their lives; oh, I had to rejoin work in a week — a part of my mind also reminded me.

Recovery isn’t a happy ending

Here, I would like to add that my body proved to be much more resilient than I was giving it credit for. For, in around 4–5 days after coming home, I was feeling much better, the wounds were looking somewhat okay, and I was realizing in real time how useful my mother’s night dresses are (it’s as if you’re wearing nothing, a godsend!).

However, my sleep schedule was a mess, I couldn’t bend or lift anything remotely heavy, I was constipated, and I couldn’t even have salivating food as a consolation prize.

Actually, if you have been dealing with endometriosis (confirmed or suspected), it’s advisable to have homemade, clean food, and bid goodbye to oily, greasy, fried street food or delicacies. Talk about life sentences.

Am I saying surgery was the answer? It’s too soon to tell, honestly. But I just know acting all positive and strong on the internet, and not being real about the struggles, and the absolute toll a surgery takes on your body, is hiding the truth.

And that’s why I think everyone’s lying about endometriosis.

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