Hot water bottles & the changeability of pain

Last night, something was not right! I discovered my hot water bottle was leaking. Fortunately this happened very slowly, rather than a sudden torrent of boiling water, so I didn’t get burnt. I found the culprit, a tiny hole. I’d had the thing for far longer than recommend, as for years I had to use one everyday to stave off pain. Recently, when my family visited Yorkshire Sculpture Park and saw Erwin Wurm’s giant 4 metre hot water bottle, my mum sent a picture to the group chat with the message “Nice big hot water bottle for Rachel”. I like it, it’s a good colour, it has cute shoes. Tip it over and I reckon I could have a really good nap on it.

It’s not only me who has a strong attachment to hot water bottles. It’s become a symbol for the painful health condition that is Endometriosis. Etsy is full of hot water bottle shaped badges and stickers for ‘Endometriosis warriors’. There’s a kitschyness to that, an attempt to make cosy that which is actually pretty dire. I understand that desire: for similar reasons I’m drawn to this weird cute-morbid Endometriosis bunny rabbit toy. It makes sense to hunt for comfort, to try to find positive identity in an experience that marks your life with difficulty. But the dark side is, there are plenty of stories and scary images across the internet of people’s abdomens burnt badly by repeat exposure to the heat. I was lucky yesterday that I noticed the leak early on, rather than when I was asleep, because things could have been a lot worse.

Some of the coverage on people using hot water bottles make it out like they made risky or ignorant choices, but really they made the best choice they could to manage their pain. For some the pain of being burnt is less than the pain of Endometriosis itself. In lieu of good pain relief medication, support, and other assistive technologies and cures, the hot water bottle often is a valuable ‘access hack’, a necessary item to make things a bit better. Hence celebrating it. Today I bought a new hot water bottle, after going to about 5 different shops, where they aren’t really stocked, presumably because they’re out of whack with the seasonal spring stock.

Buying it made me reflect though on how far I have come with both my pain levels and my capacity to manage pain. I am often uncomfortable with sharing linear progress narratives around health, especially with the unpredictable nature of chronic, uncurbable illnesses. However, when I was suffering more than I am now with Endometriosis, I wanted desperately a sense that things could get better. The only stories I heard gave me very little hope. So I do want to share about the changability of pain, and how things can improve. I do not know if they will stay improved, but I can say they have been a bit better for the last few years, and I live a life that I didn’t think was possible when I was in the worst of it.

As a brief overview, from about 2016 or so onwards I had unbearably painful periods. In 2018 the pain became a near daily, 24/7 thing. The pain felt like it would never go away, it shaped every aspect of my life. At this point I started to be heard by my GP, despite reporting it for years before. Then I waited for a long time and in 2019 I had two surgeries to remove the Endometriosis, the first made things worse and the second improved things a lot. I also had the Mirena IUD/coil as a part of that second surgery. The daily pain lasted until about mid 2020, at which point things had settled post surgery. The years following have been mostly much more manageable levels of pain, a far cry from the disabling pain that shaped my life before it.

As well as the surgery I had pelvic health physiotherapy (the NHS does have this but sometimes you have to ask), a range of emotional therapeutic support (again this was provided when I asked, a certain amount was available on the NHS and then I paid for more), somatic work, and massages. I also took a few pain management courses, including a very helpful one on Headspace, which changed my experience drastically. The thing with chronic pain is that the nervous system becomes sensitised, and so even when the source of pain is no longer there, the body acts as if it is, and it has to unlearn this response. It has been the work of years to unlearn this, and I am still learning. There is still pain, and there are still remnants of the source of the pain, but it is no longer as chronic. I learnt that yes my pain was chronic, but within what felt like a wall constant pain, there were details to pay attention to, some days better than others. Some parts of my body were not in pain, and I learnt to feel into them, to see where was actually okay, which changed how I related to my pain drastically.

The combination of getting treatment to actually reduce the Endometriosis, as well as all the tools in place to manage it, mean that I only really use the hot water bottle on occasion now.

I cannot predict what the future will look like, as this condition is chronic and can reoccur, I’m also living with the embodied trauma of the effects of years of medical neglect and chronic pain, and some remnants of the endometriosis itself as well as other conditions like adenomyosis. But pain is also always shifting and changing. I hope that this hot water bottle lasts longer than its predecessor. I also kinda wish it had little feet like the statue, and would walk away, “saying so long sucker!!!” or perhaps more kindly, like a fairy godmother who has seen the princess grow into herself, it may say ‘my work here is done, you now longer need me, go forth and prosper’. Alas, our relationship continues. As I write this, I need it, and I will often need it. I feel no shame in needing warmth, and relief from pain. There is something beautiful in finding relief where you can, however imperfectly.

With care,

Rachel x