Endometriosis is more than just having a low pain threshold
It affects one in 10 women and feels as bad as labour contractions
Salt and vinegar crisps are not my breakfast of choice. However, they are the only thing I have in the house that doesn’t require some kind of cooking or heating up or preparation, and also one of the few things that I don’t feel sick at the thought of eating at 9am.
Combined with my handful of crisps are seven pills. They have to be taken straight away after the crisps, but with lots of water. The alternative, as I have learned over the last two years, is to take them before the food and consequently spend the next 45 minutes throwing up. Or, if I’m lucky, passed out on the bathroom floor. If I’m very, very lucky, they will do their job within an hour and I will spend the next eight to 12 hours in a state of drowsiness from the comforts of my bed.
Endometriosis, as you may have learned by now, is no laughing matter. While some women get their period, drop an ibuprofen or two and continue their day, for one in 10 of us this is not even a consideration.
Endometriosis has given me an unreasonably large medicine cabinet and an uncanny ability to know timings, interactions and side effects of different drugs. It means I’m an excellent person to go to when you’re feeling rough, because I’ll almost certainly have a few options of pain relief in my purse.
It’s knowing exactly how much I have to eat with medication and approximately how long I have to get myself home and into bed before it feels like I’ve been shot in the pelvis (20 minutes). It’s being able to think up countless reasons on the spot as for why half an hour ago I was up for going out and now suddenly I’m confined to my bed. It’s planning nights out, interviews and events meticulously around when I think my period is due. And then, when it is late for no reason and falls on said event anyway, it’s usually a case of dropping out and resigning myself to my bed, again.
I have scoured the internet for the past three years looking for answers, solutions, and if nothing else, sympathy. When, out of the blue, it first hit me when I was 17, my mum thought I had food poisoning and we spent the night on the phone to NHS Direct. When after that it became a regular, monthly thing, I resorted to stealing codeine from the family medicine box secretly and ever so slightly overdosing in a desperate attempt to knock myself out and wake up feeling better.
Surely though, if it’s so debilitating that even codeine can’t rid the pain, shouldn’t there be an answer?
Endometriosis is caused by the inner lining of the uterus growing outside the uterus, in places it shouldn’t. Towards the end of the cycle, that lining thickens and sheds. For women with endometriosis, there is nowhere for it to shed as it’s growing in the wrong place. As a result, the body tries to fight this growth and women suffer in what’s been regularly described as contractions similar to labour pains.
The fun part? There is no known cause and no known solution. The pain can, supposedly, be managed, through birth control pills to stop the periods completely, or a laparoscopy to stick a camera through your belly button and laser out any wrongly placed lining. I’ve tried the former for two years now, and will be trying the latter next month. Some women report on having up to seven laparoscopies without success, as well as hysterectomies and eventually removing their ovaries and/or uteruses out of pure desperation. After reading this, I’m trying not to get my hopes up for relief too much.
I would love to write more about how I’ve spent weeks worrying about what happens if I get my period on the day of an exam, or at work. If I have an important interview, and I’m writhing around, hot water bottle stuck to my stomach and ever so slightly fucked with dilated pupils and slurred speech from codeine. I’ve had this for nearly three years now, and in those 36 months I’ve had two periods which haven’t left me stuck in bed for a day or two. It’s got to the point where if I have a ‘good’ month (read: I take my meds and don’t throw up for the first few hours) I’m elated to the point of texting my mum, who is equally overjoyed.
I say this lightly, and with more than a hint of irony, but I am one of the lucky women who suffers for 24-48 hours a month with this, rather than days or weeks on end. It’s one thing having to cancel a day’s plans but another completely for women who have to reschedule entire weeks.
There are an estimated 1.5 million women in the UK alone who are thought to suffer with endometriosis, and with infertility rates around 30-50 per cent for sufferers it’s ridiculous that more isn’t being done to help.
It’s one thing telling people you’ve got period pains and them rolling their eyes and telling you to get over it, suck it up and move on because you’re female and it happens to all of us and you probably just have a low pain threshold and another entirely when you’re dropping codeine every few hours just to stop from throwing up with pain.
Originally published here.