Why I hope I have endometriosis

WORDS BY Grace Baldwin

“It’s a deep, constricting pain with arbitrary stabbing sensations throughout my abdomen and pelvis. Imagine someone burning your uterus, then sharply pinching it while it’s all twisted up.”

In several days, I am having surgery to find out whether I have endometriosis. If they tell me I don’t have it, I think I’ll be devastated. This is not because I want a chronic pain condition, it’s because I want answers. I am desperate to find out why I have been in excruciating pain for this long.

I don’t like hobbling into work clutching my fluffy pink hot water bottle (despite the style statement it provides) and I don’t like surreptitiously hiding said hot water bottle from male colleagues, who tend to give me slightly confused looks.

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I don’t like calling in sick to work because I’m unable to move from my bed. I pride myself on giving 110 per cent to everything I do, but my body regularly sabotages me. It makes me feel like a fraud.

A few weeks ago, I had to leave a Liz Stringer concert early because of the pain. Liz is one of my favourite artists, so the disappointment of leaving before the set finished ached nearly as much as my reproductive system did.

I stubbornly soldiered on for about an hour, clutching my beer, sweating from nausea and being held upright by my boyfriend. In a break between songs, I staggered to the bathrooms of the Brunswick Ballroom to throw up. We left straight after. I cried in the Uber home. 

This type of pain manifests in many different ways. Some women describe the sensation of razors on their uterus, or fireworks going off inside their bodies. For me, it’s a deep, constricting pain with arbitrary stabbing sensations throughout my abdomen and pelvis.

Imagine someone burning your uterus, then sharply pinching it while it’s all twisted up. I usually get warning pains about a day before my period shows up, similar to many other women. One common thread among endometriosis sufferers is that pain killers can take the edge off the pain, but they’re never able to eliminate it.

Since my first period, things were never ‘normal’. To my humiliation, I started menstruating when I was nearly 16 (a pubescent anomaly I’m now very grateful for), so I thought my cycle would just take longer to become regular. My mum had taught me from her own experience that periods weren’t necessarily ideal, but they were a minor inconvenience at most.

How I wish that had been the case. Starting birth control a few years later provided temporary relief from my symptoms but after several blissful and blood-free months, my reproductive system rebelled and came back with a bitter vengeance. I bled for about ten months on and off.

Still, I did not go to the doctor; I thought it was normal. Or at least, I believed it was unworthy of a doctor’s time. I suppose I didn’t want to be told I was overreacting. I stoutly worked my way through the Implanon rod and four different brands of the pill, bleeding and hurting through them all.

And still, I did not get help. In the end, it was my boyfriend who urged me to go to the GP. He told me he didn’t want to keep seeing me in pain, and I finally listened. A number of months, referrals and appointments later, I was booked in for a laparoscopy and IUD insertion.

I’m now told I have ‘highly suspected endometriosis’, as though my uterus were a criminal on the run. The reason it is ‘suspected’ rather than confirmed is that the only way to be absolutely sure is via tissue samples, which are obtained through surgery.

The surgery – called a laparoscopy – is a keyhole procedure where small incisions are made in the stomach to inspect the pelvis and abdomen. If my doctor sees lesions or cysts, she’ll remove them and send them off to histology for testing.

I’m not an especially medically anxious person. In fact, I trust most (female) doctors implicitly – probably to a fault. Nonetheless, I am scared ahead of this procedure. I’m worried it will hurt, that I’ll be alone when I wake up, and that something will go wrong.

Mostly, I’m scared they won’t find answers. I don’t want to go back to square one. And so, if I wake up and they tell me they found endometriosis, I will be relieved. Putting a name to pain is generally the first step toward dealing with it.

I’m afraid, but I’m putting on a brave face. As my beautiful friend reminded me, if this surgery doesn’t provide answers, then I can just keep searching. At least one potential malady can be crossed off the list.

For more information on endometriosis, head here

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