There’s no sexy way to write about a disease. Let’s get that out of the way, before you find yourself assaulted and grossed out a little further down the page. There’s no sexy way to write about a disease – even the word ‘disease’ I’m starting to dislike, ‘illness’? This is especially true for any disease involving periods (which, jokes aside, may be part of the problem here). But I’m going to write about it anyway.
Imagine that there is a debilitating, agonisingly painful illness which affects 176 million people worldwide. It can make standing, walking and even speaking temporarily impossible for those affected, as well as seriously impacting, impairing or removing their ability to work. The end result might be an invasive surgery in which organs are removed, and a common result – either way – is infertility. There’s no cure.
Guess what? (I think you know where I’m going with this) There is! Unfortunately, most of us are womxn, so there goes the problem. The fact is, depressingly, that in my experience, gendered illnesses seem to be treated differently to illnesses which also or only affect men. This is in terms of the immediacy of the medical response, as well as the level of care on offer.
To get into a little very sexy nitty-gritty: endometriosis is, as you may know, a hormonal disease. To explain it as you would to a five-year-old (an explanation that any endometriosis sufferer has *down* at this point), endometriosis is when your womb lining starts to get bored with being in your womb, and struts about the rest of your body looking for somewhere to hang out. No, not really, it’s actually endometrial-like tissue which grows around the body – but it still tries to serve the same function as endometrial tissue. Aww. And, as hopefully most of you will know, a womb lining shedding = a period.
So, when it affixes itself somewhere else (ovaries, Fallopian tubes, eyelashes, that one’s a lie) that is still what’s going to happen. Bodies aren’t built for this, and what ensues is a lot of pain and possible infertility.
Hormonal diseases have hormonal effects and hormonal treatments are not always applicable or up to the job. Endometriosis has enormous consequences for wellbeing and mental health. People with endometriosis are more at risk from anxiety, depression or, unsurprisingly, both.
The day-to-day in this party can be a bit rough. To speak from my own perspective here, the pain is so bad I’ve ended up in A&E five times over the past five years and I’m really not a pansy with pain.
When you’re not feeling brave enough to drag yourself to the hospital (and chances are, you’re not: this isn’t your first rodeo) your only option is to grin and bear it (okay, scream and bear it). It sounds very high-drama, I know, but the truth is that for lots of people this is just a normal thing where paracetamol and ibuprofen just wither in the face of this sort of pain. I have found an excellent pain reliever which I highly recommend to my endometrioSISters, but unfortunately it’s just straight-up morphine through an IV, and they keep a really close eye on it at the hospital.
Endometriosis is a very real thing that 176 million people wake up with every day. You’d think that doctors are pretty quick at diagnosing this, given that it sounds so unenjoyable for millions of people. This is where we come to the bit that really pisses me off (‘But you already sound so pissed off!’ I hear you cry). The average diagnosis time for the condition of endometriosis which affects 10% of the population who have a uterus is seven years!Imagine seven years of all the stuff I just mentioned. Believe me, seven minutes of it is taxing.
To be frank: this is not a failure of the NHS (obviously). This is a failure of equality. Let’s imagine the consequences if 176 million men lost their fertility over the course of years in agony to a disease into which barely any research is funded. There would be rioting in the streets. It would become a national health emergency: a priority above almost all others.
And as I write this, I know that that scenario would never happen; because it would not be allowed to get that far. If 10% of men were routinely floored with agonising pain, there would be dedicated hospital wings and millions if not billions spent in medical research.
Without being fatal, this is one of the only diseases where the end result is likely to necessitate an elective organ removal (consider how bad this has to be, for people to choose the option of taking their organs out). Of course, certain illnesses are difficult to diagnose. Thanks to unhelpful symptoms: Pain. Bad periods. More pain. Bloating. Cramps. Which, as any good doctor will tell you (and many have): ‘All women have this to a degree. You’re probably sensitive to period pain’ (Thank you, six years of med school!) before waving both me and my rapidly-waning fertility out the door. I have to believe that it’s a lack of educationon the topic of female-only pain here that’s the obstacle, rather than thinking that the majority of doctors can’t be arsed to listen to womxn talking. Again: I’m not blaming the NHS. I blame the systemic misogyny that the NHS was born into.
If you get ‘what you want’ here (a diagnosis): congratulations on your healthy dose of endometriosis. Now we get the real party started: Choose the pill. Have hormonal clashes, which make you depressed. Come off the pill. Choose a different pill. Have a doctor tell you that your risk of dying from a blood clot has just dramatically increased. Come off the pill again. Choose the patch. Have a doctor tell you that your migraines make the patch an unsuitable option. Come off the patch. Choose the coil. Learn to love the coil, and love the coil for a few years until, one day, you have the same, faint, sickening echo of pain. Choose – well, by now, you’ve chosen everything. Worry that you’re out of options. Try not to think about what that means (Shit. This choose-your-adventure journey has started to get really depressing).
I’m incredibly lucky. I have a great doctor, who listens to me, and I’ve had incredible support and patience from friends, family and my partner, who has picked me off the floor and held my hand through it all for the last four years. Not everyone has these resources. I’m lucky: I know what it is, and I know what my options are. For most womxn in pain, they’re still considered hysterical, and it’s still an average of seven years for doctors to concede that actually they might be in the grip of an agonising illness with severe consequences. When an illness is this prevalent, and the prevailing attitudes of medical professionals appear either unwilling or unable to help, there’s a huge, urgent and systemic problem.
If you work in the medical field, please question the papering of womxn’s illnesses. Please take female pain seriously. Please don’t send us home from A&E because you ‘don’t think it’s anything serious’. I reserve very bad thoughts for you if you do that. Just take womxn seriously because our health, our happiness and our future suffers immensely and unnecessarily when you don’t.