Maybe today’s the day to write the endo post. I’ve had the shakes upon waking this morning at 0930, it’s now 1630. Pain + a headache lingering on and off all day and at first thought, ‘oh it’s the weather, this heavy fog hurting my head, the pressure, that’s what it feels like’. Then the cramps, and would you believe it I’m actually bleeding today! The hollow legs akin to a bout of mild food poisoning, ‘oh, it must’ve been last night’s pad thai, too rich, too fatty, too oily, too much, too foreign for my body.’ It’s always something. But that’s the way it is now. Some days are clear and light spirited, think of a pony in a meadow and others, like today, sluggish like a hydrostatic bottomfeeder and the day’s gone in an instant and I’ve been sat here for all of what felt like five minutes. There’s also the mild nausea, brain fog + stabbing pains, the floppy limbs like you’re made out of jelly, like you shouldn’t even have limbs and why, you could just float all day and wouldn’t that be the life? I ought not to complain. Before my surgical diagnosis my pain was worse, think 11/10 when now it sits anywhere between 4-8/10. The trade off being it used to appear about every 2-3 months though lasting 2-3 days so I couldn’t do much but wail in bed, up to my eyeballs on ibuprofen and codeine. Staggering to fill up the jug for hot water bottles and feeling sorry for myself to the highest degree. So when doctors turn around and say it’s just your period, it’s natural, you are perfectly normal and healthy well, why, you begin to think that maybe it’s all in your head (or in my case it literally is as there is research suggesting that redheads have a lower pain threshold and higher pain sensitivity!?)
As you can see I couldn’t of held down a proper job, therefore having the ‘casual’ contract but then of course the on-call lifestyle gets to even the healthiest among us so you’d have to be taking a death sentence to have opt for on-call work with a chronic illness. I had the ibs symptoms daily and university was hellish, I still think I’m lucky to have graduated, for it drove me near insane and it’s not a phrase I use lightly.
Now: I was lucky. I saw a gyno and was put on a waiting list for surgery. That was in May last year. I was operated on in August by that same wonderful gyno (bless her cotton socks). My diagnosis, hopeful (if there is such a thing), “the early stages, entry level” and she even noted my ovaries were fine + healthy (at 19yo i was diagnosed with pcos and at 21yo a cyst left me bedridden for a week). Now I have the hormone releasing IUD and have done for near 10 months. I’m still adjusting to it, like hell it was a max. of 6 months adjustment but, ‘hey, everybody’s different!’
I’m trying to cut down on the NSAIDs I take. Maybe I could try a more plant based diet, but that makes me panic – since my ibs (or is it all just the endo – nobody knows!) cannot tolerate the mere thought of legumes, beans, soy.
I realise I am a lucky one. I know that I’m privileged in both my appearance and diagnosis. Doesn’t make this any easier (oh how I wished it did). In a world of social media I am bombarded by my friends with their children, something they (the medical professionals) tell me is possible but not certain in my future and with this IUD it seems a long way off. Funnily enough the IUD is the only way to deescalate the whole situation down there. (“pump ‘er full of ‘ormones!” – I neglected to say that the months leading up to my surgery the gyno prescribed me a case of hormone therapy – which worked wonders for my pains and figure! Why couldn’t I have stayed on them?!)
So, the pain, is less dramatic but more frequent. Every other day and nothing is going to change that. The best I can do is wake up and see where the day takes me. Let myself take it easy and not beat myself up about it when I can’t do basic human things. I need to let myself know that it’s okay to be slow for today my body needs rest + my mind is elsewhere.
I’m not sure if any of you have even read this far, but please, please don’t suffer in silence.