Monday, 24 May 2010

Pain management ~ "The rules"

Progesterone works very well on treating endometriosis, for me - but because I'm progesterone-intolerant, I can't use it for too long (usually 9 months max). It's a delicate balance between physical pain and emotional pain, and each kind is hard to remember, especially when the other is bad. I wrote this list to remind myself of the physical pain. But as you'll see, it's not exactly pain.
"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 break the rules, you will hurt. With careful planning, you can break 1-2 rules a day, and just hurt a bit.
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.


  1. I have endo and was also diagnosed with fibromyalgia two years ago. I recognise this list! :-(

    Some days are pretty good and I think I'm normal again. So I garden a bit, go for a walk, clean a bit of the house... and pay for it with two weeks pain.

    I hate the fact I can't wear normal clothes and that I can't do the things I used to do without even thinking about it.

    You have my sympathy. Sending you a big ((hug)) ... but gently. ;-)

  2. Thanks, Michelle! "Pay for it" - yes, that's exactly what it feels like. At the moment, in order to turn up and teach for 2 hours a day, I spend the rest of the day on the sofa & the weekend not leaving the house.

    And the clothes - I have a bunch of loose-fitting & a-line dresses which I wear all the time, on a loop. And then a whole row of other clothes, and drawers full of other clothes, that I used to wear and won't get rid of, even though it's been 2 years since I could wear them. Hope springs eternal in the human breast!

  3. The "used to wear clothes" - got them too. I've another problem, with lack of exercise and hormone injections I've put on quite a bit of weight, so most of the loose dresses I did wear don't fit either. URGH!

    Oh and I've got another one to add to your list - don't clean the oven door - it hurts your stomach. I got a bit carried away scrubbing off the grease. :-( owwww

  4. Ah yes, I too have a wardrobe full of clothes I can no longer wear. I consider it a good day if I can manage a pair of leggings. I've now started sorting out all the old clothes (in short sessions, obviously), so that I can store them somewhere and not look at them longingly every time I open the wardrobe to get one of my stretchy dresses. I shan't be getting rid of them as I'll soon be feeling better and will lose all that extra flab...ok, so it's been 2 years, but who's counting?!

  5. It's bizarre how something as ordinary & practical as clothes becomes a touchstone. So much of the pain is intangible - or at least, very tangible to us, intangible to others, and unquantifiable to everyone - that something factual to cling on to becomes so symbolically important. And I guess there's something about identity in there, too.

    Speaking of "that extra flab" - being unable to move much doesn't help - but that swollen stomach is not extra flab!

  6. Absolutely, I somehow feel less "me" when I can't wear the clothes i want to, and the same goes for all the activities I used to enjoy but now can't manage. Sometimes I stop and think "who the hell is this person, where did i go?" You really have to re-evaluate what makes you "you" when you get ill.

    Hmm, I know some of my belly is extra flab, but yes a lot of it is swelling from the endo. I've put weight on all over these last couple of years - I used to dance, cycle and do lots of swimming and Pilates, now hanging the washing out is my idea of a good workout!


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