"Most of the time, I'm not in pain, provided I follow the rules. These are the rules...
- • don't bend down to pick anything up
- • don't lift anything heavier than a kettle (be careful with a full kettle)
- • don't sit unsupported - in a dining-room chair, use a cushion; on a kitchen stool, lean against the wall & on the table and don't stay there too long
- • don't lean forward
- • step on the ground very carefully
- • walk nowhere - not even to the corner shop
- • drive, but don't lean forward
- • avoid the bus except for special occasions: it jolts
- • don't clean the house - no vacuuming, no dusting; too much bending and moving about
- • only tidy away things at waist height
- • don't have sex
- • don't play guitar (you have to crunch over it)
- • wear slip-on shoes only
- • put on and take off tights with great care: it hurts
- • don't shake potatoes in a pot to fluff them for roasting
- • don't push, pull, or lift anything - don't even push a thumb-tack into a board
- • don't crush pepper in a mortar and pestle: it hurts your stomach
- • don't take the coach
- • don't take the tube
- • avoid taxis: they jolt
- • park as close to the entrance as possible (without a disabled sticker)
- • don't go grocery shopping - or if you must, don't reach down to the bottom shelves
- • don't lie on your stomach
- • don't lie on your side
- • don't scrub the bath
- • don't wear anything with a waistband, a fitted waist, or even close-fitting
- • don't let anyone touch your stomach
- • don't let anyone jolt you
- • don't carry heavy bags - and a shopping bag is heavy
- • the moment you need to pee, go - or the pain increases until you'll be crawling to the loo
- • don't lift children or babies, or let them crawl over or near you - they kick
- • don't stay standing for more than a minute, if you can help it
- • try not to shave your legs too often - too much bending
- • exert no strength - it all, ultimately, uses stomach muscles
- • be careful how you hug people
- • be careful how you dry yourself
If you take painkillers in order to break the rules, you will hurt twice as much afterwards. If you then take painkillers again, you will break other rules (like sitting up, stepping normally) and need more painkillers, and so on, until your kidneys hurt. The hurt is mostly a slow, hot burn, and pinching. Of course there's still some pain, but this keeps most of it at bay."
Even though the pain is currently returning, and I am starting to follow those rules again by instinct, I find that list hard to credit - but I have it in my handwriting and I remember trying to be as factual and exact as possible. GPs, consultants, and nurses have all expressed astonishment that I don't just take painkillers - but as I said, if I do, then I don't get feedback on what hurts, and the pain rapidly outstrips the standard painkillers - and then come the opiates, and then liquid morphine. My way works best for me.
And when that way becomes unbearable, and I can't face another month without the prospect of my long walks through parks and beneath trees, suddenly the prospect of emotional pain doesn't seem so bad - and so the pendulum swings.
Important note: this is not advice - I am not a doctor and everyone's experience of endometriosis is different. My own endometriosis is thin and widespread across my peritoneum, and not at all on any of my organs. This is a list I wrote for my own reference, which I am posting to share my personal experience of endometriosis and pain management.