Being diagnosed with endometriosis at 22

A bloody Monday

Hiya Monday. How’s it going? BoJo got us all confused last night eh. But basically, just stay home so we can keep the R number down.

Enough about Covid – it’s Monday and today is… THE FIRST DAY OF MY PERIOD. Even though I have cramps and am generally moody, I’m incredibly grateful that my periods now are no longer anything like the painful periods I once had. For context, I’m now on Microgynon and I know that I can stop having periods but that’s a whole other post as to why I still choose to have the break.

Anyway – it’s Manageable Monday. Today we talk about periods, and more specifically, what it was like to be diagnosed with endometriosis when I turned 22. Because there have been many Mondays that I wish I could be honest with others about why I wasn’t okay instead of grinning and bearing it.

So, how did all this come about?

When I’m on my period now, my palms are sweaty, knees weak, arms are heavy (sorry forgot to leave the Eminem rap at the door), but I generally feel like well, rubbish.

Since I got my period at the young innocent age of 10, my periods have been ridiculously heavy, as if once a month my sole mission is to birth a demon baby. Add to that the crazy heat and humidity in Singapore, a general reluctance to talk about periods, as well as an all-white school uniform…I was a nervous wreck whenever my period came around for as long as I remembered.

It all came to head when I had a kidney infection, and through an ultrasound, they realised something wasn’t right. I opted for a laparoscopy and they confirmed I had endometriosis. Tada! Sounds pretty straightforward doesn’t it? But what I’ve brushed over is how throughout university, I’d get tired within about two hours and fall asleep wherever I was. Or that during that demonic week, some days I couldn’t stand or sit up straight and would break out in a cold sweat, even in the summer heat on the Central line. And how, for a really long period of time, I was told that this was normal and I should just put up with it.

The end of the matter, or start of another era?

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In the first photo, you see me super happy at my graduation. This was me, a few weeks after surgery. It was the first time post-surgery that I could zip up my graduation dress because the nitrogen that got pumped into me during surgery had finally gone down enough.

I’d lost most of my core strength and couldn’t even sit up in bed – I had to roll out of it. I remember dozing off in the auditorium before we had to walk across it, because I was so tired from catching up with everyone and the adrenaline itself wasn’t enough to keep me going. I had to start work shortly after this.

So even though post-surgery my symptoms were no longer that debilitating, once a month when I had my bleed, my brain would get hazy, my body would feel heavy and feverish, and I’d be in a dark mood.

Some days, I could sleep for over 12 hours, and still go to bed six hours later then sleep for another 12. Other than dealing with myself, I also had to deal with others: colleagues and coworkers who couldn’t understand why I needed a random day off in the middle of the week, friends whom I had to cancel plans with suddenly, or strangers on the tube whom I couldn’t ask whether I could have their seat because I was feeling so weak.

“I had to deal with colleagues and coworkers who couldn’t understand why I needed a day off in the middle of the week, friends whom I had to cancel plans with, or strangers on the tube whom I couldn’t ask for their seat because I was feeling so weak”

Other than social interactions, I also lost the coping mechanism I had at unversity, where I could stay in bed for a week. I now had ~aDuLt~ commitments, like a full time corporate job, to answer to. And in a largely male team, how on earth could I talk to them about my period?

That’s also a whole other conversation. I would strongly recommend reading Emma Barnett’s insightful and well-researched book: It’s about Bloody Time. All about periods… and why we as women are so ashamed to talk about it.

How being diagnosed with endometriosis suddenly changes everything

I almost don’t remember a time where I haven’t had my period – I’ve had it for about two-thirds of my life. But having to face the diagnosis of endometriosis made me reflect on well – everything.

I’ve prided myself on being a ‘people person’ and having compassion and starting with kindness. But, I also used to represent clients in the Free Representation Unit where some of them had Chronic Fatigue Syndrome or other illnesses that I couldn’t see manifested physically. I remember Googling it after the first meeting with them, and asking myself “Is this even real?“.

When they had to cancel our meeting on the day, I’d even ask “What but you don’t have to work, why are you so busy?” – what an absolutely privileged cow I was. Just because I couldn’t see their illness with my narrow world view, who was I to judge them and say that their illness wasn’t real because I couldn’t – or refused to – see it? I’m ashamed to say I only realised the impact of invisible illnesses when I experienced one. Even now, it is still something that I have to actively unlearn: that something isn’t not defined as an illness just because I can’t physically see it or tick boxes to define it. I am not the one to judge other’s bodies and what they are going through. When you have an illness that others cannot tangibly see, they brush you off and go “oh but you don’t look sick enough“, or they actually question you as to whether you have it. And then they ask you whether it’s gone away – many invisible illnesses do not just go away, we live with them every single day. As my endometriosis reminds me whenever I have a sneeze, I feel a bit of the adhesion come apart. Lovely.

When you have an illness that others cannot see, they brush you off and go “oh but you don’t look sick enough“, or they question you as to whether you actually have it.

This has been one of the hardest lessons I had to learn, and there is so much to unpack around invisible illnesses and disabilities that I’m not sure I could do justice by trying to cover it here. But I promise we’ll talk more about it in a few future posts.

Being asked to make a monumental decision in minutes

When they suspected endometriosis, my doctor also callously said “Well, if it’s affecting you so much, you could have a hysterectomy.” Excuse me, what. I was 22, I couldn’t even decide what I wanted to eat for lunch that day, what made him think that I was equipped to make a decision about removing my uterus? Put in that position, I went ‘ok no hysterectomy, IN CASE I want children.” But if I’d had time to decide what I wanted to do, perhaps the answer might be different, who knows.

Aimen talks about the choice of not having children in one of our previous posts. I on the other hand, want and love children that Aimen can be the cool auntie to. When I see children I feel a twinge in my heart and womb, and I cannot wait for the day I can hold my own in my arms and if I cannot have my own, then a baby that I will adopt and love as my own. But I’ve only come to this thought process because I was forced to reckon with these questions that no one should ever have to face when they’re not ready. After all, no conversation about whether you have to have children is a clear-cut yes or no. Having to face it at 22? That’s tough.

And other than reconciling it with myself, I, fresh-faced university graduate then had to start work. I remember being terrified in my first few months of work whenever I was introduced to someone new that they’d be like ‘So, what do you think you want to do in a few years?‘ (which they unsurprisingly asked all fresh graduates).

I stumbled through my answer, always worried I would let on that I had endometriosis and reveal that some days I’d be incapable of working. Or that when I do decide to have a child, the journey will be much harder. I’d feel the panic rise in my throat as I pretended to be the bright new hire, and pray that no one would ask me about my thoughts on maternity leave – which is something people still ask women candidates in interviews (wow shocker!).

What’s next?

So as I sit here wrapped in a duvet and can’t tell whether I’m cold because of the howling wind outside or because my body is prepped for that first drop of uterine shed-blood, what I want to say is: In a time where we all tell each other to #bekind and not judge others, we should stop to reflect on what we think we know about invisible illnesses and disabilities with no physical manifestations. When there’s something to see, we with our narrow world view can go, “Phew, yes they’re ill or disabled. They look ill or disabled enough.” There is no such thing as looking ill or disabled enough, there is only us questioning ourselves on whether we’re willing to put in the work to unlearn what our ableist society has ingrained in us.

Also stop judging people, it’s none of our damn business. Now let me just get through this Monday. 

– Q 🩸🩸🩸