Lydia Hawken describes a life with endometriosis…
I never thought I’d be seriously thinking about my fertility in my early twenties. Babies, motherhood, and potentially even marriage were all things reserved for ‘proper’ adulthood, i.e. the moment the clock struck twelve on my thirtieth birthday.
Fertility was something to be assumed. “Of course you’ll be able to conceive naturally”, sex education teaches you, “the main priority is to not get pregnant now!”
And then I found myself aged 21, sitting in yet another doctor’s office and fighting back tears as I was told that I was most likely suffering from a gynaecological condition called endometriosis.
I wouldn’t be surprised if you haven’t heard of it, despite this condition affecting 1 in 10 women of reproductive age in the UK. The only reason I had a vague recollection of what endometriosis was from Lena Dunham’s Instagram and even then I would have stumbled over the exactly what it was. Pain? Fertility issues? Who knows?
Endometriosis occurs when cells like the ones in the lining of the womb are found elsewhere in the body. Frustratingly, no one knows how or why it happens. The most popular theory at the moment is something called ‘retrograde menstruation’ and even that is a mystery in itself. The one thing we know for sure is that endometriosis causes debilitating pain for sufferers and can wreak havoc on fertility when left untreated. Like with any silent illness, it’s notoriously difficult to diagnose and takes an average of eight years before sufferers are treated, usually with keyhole surgery to remove the affected areas.
Luckily for me, I only had to go through one year of ultrasounds and endless doctors’ appointments before my diagnosis. Unfortunately, this also happened to be my final year of university when your dissertation should be the only thing causing you sleepless nights. I can’t count the number of times I woke up writhing in pain, that was so distinct and different from period cramps I’d experienced as a teenager. Tears in the library became something of a norm as I would have to interrupt my studies and take myself home to bed, embarrassed that my colleagues might think I was being overdramatic.
The truth is, when struggling with a ‘female’ condition like endometriosis, it’s not only the pain that makes you suffer. It’s the feeling that, for whatever reason, your body isn’t doing what it is supposed to. Of course I wasn’t planning a family yet, but the prospect of settling down with a partner being in a financially stable position (the ‘adult life’ of my adolescent daydreams) and then struggling to conceive was beyond terrifying to me. I became an anxious wreck whenever I dared to consider my future infertility, haunted by the kind of thing a woman in her early twenties is so often told to take for granted. Not a particularly healthy use of my time, but hey, I’m human. It made me feel like less of a woman, betrayed by my own body.
Surgery confirmed my diagnosis in July 2017. The relief I felt afterwards was bittersweet. I felt ashamed of every time I’d told myself that this pain was all in my head. If anything, as someone who errs on the side of shy, I was proud of myself for pushing for a diagnosis. I rather naïvely thought that I’d never experience pain like that again. That the success of my surgery, combined with hormonal medication and codeine painkillers, would at least make me feel ‘normal’ again.
That’s the most frustrating thing about this disease; it stays with you, like a toxic best friend pestering you for attention, turning up unannounced when you’re trying to concentrate in a lecture or as you go about your everyday life.
Only six weeks after my surgery, I ended up back in my local GP’s waiting room, nursing horrific abdominal cramps and huddled over a Shawn the Sheep hot water bottle that looks like a cuddly toy to the naked eye. I’d been woken up in the middle of the night and even called 111 because I didn’t know what else there was to do. Turns out, stronger painkillers were all that was left. I wasn’t going to get better, it was now all about controlling my symptoms.
It was a watershed moment for me. I’d been so happy to have a diagnosis that I hadn’t yet come to terms with the fact that this was my life now. I’ll always have to wear progesterone patches to prevent more endometrium cells from attaching themselves to my ovaries. They are square transparent plasters that act as a constant reminder of my chronic illness.
I’ll always have to make a judgement call whenever I leave my house as to whether I need to take a painkiller. Take one too many and I feel drowsy and out of sorts. I’ll always have to ensure that anywhere I stay overnight has a hot water bottle or lug one round with me all day. I haven’t decided if this one is strictly necessary but it is at least psychological. In my eyes, there’s not a lot a hot water bottle can’t fix – when you’re struck by a chronic illness, comfort and pain management really can be the smallest things.
When it comes to an illness you can’t control, self-care has been my saving grace. Some days, I’m absolutely fine and feel like my normal old self – and I’m learning to dissociate my own womanhood from potential fertility issues. I would argue that this makes it harder when I inevitably have a bad bout of cramps and find myself back at square one, but I feel determined not to let it get the better of me. But there’s a lot to be said for taking some time for yourself. Whether that means having the longest bath known to humanity, treating myself to a shellac manicure, or just simply taking a sick day when the pain gets too much. That’s been the biggest feat. Accepting that endometriosis has changed my life, but not who I am as a person – and it certainly hasn’t made me any less than a woman.
If you suffer from Endometriosis, find support here.
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Illustration: Lily Louise Scott