Endometriosis & learning your levels of pain

The subjectiveness of pain is something that I find very interesting, and explaining the fact that pain is a normality in my life is one of the hardest things I have to describe to others who don’t know what endometriosis feels like.

I’m beginning to think that I have a high pain threshold. My “extremely bad pain” isn’t someone else’s. So learning what sort of pain you can manage relatively comfortably is a big part of pain management.

Welcome back pain, my old friend

My reaction to pain is something like “oh it’s you, you’re back again”. It’s some what an inevitability with endometriosis. I’ve come to accept that I will never be free of the pain that greets me. That it trails somewhere behind me on the days where I feel well, soon to catch me up.

Someone living without chronic illness would probably react very differently to that same pain, they would probably be really concerned, seek medical help, or take something.

My pain has become a new sort of normal to me. As normal as needing to eat or sleep. A new dimension to life, and an unwanted one at that. Something that I’ve grown used to, and come to accept.

However the natural reaction of those around me when they notice my moments of serious pain is to suggest that I should stop working and go home, that doesn’t exactly pair up nicely with the fact that I am finding a way to cope.

On the issue of rest

I’d be lying if there are many, many days where I don’t want to stay at home and rest. But the days I give in and do this are rare. Working, and living normally (as far as we are able) is an important coping mechanism for those of us disabled with illness, and for me taking sick leave and resting is something that needs to be rationed carefully – saved for the very worst of times.

Rest in itself is a bit of a misnomer with chronic illness anyway. Rest too much and it’s harder to motivate yourself to get up again. Sleep too much and you risk causing yourself problems down the line with an inability to sleep through the night. I know it seems very counterproductive to keep going despite pain and fatigue (but with the big caveat of pacing), life with chronic illness isn’t a simple decision, and it’s not a simple if/or statement.

Finding your upper limit of pain

With endometriosis you get to know only too well what those worst moments are. Within a few months of diagnosis you are starting to relearn your limits with pain. You test and relearn your thresholds. The upper limit of what can be tolerated comfortably and what can be lived with.

Living with a chronic pain like that caused by endometriosis means bottoming out what makes your pain worse, and avoiding it, like tiptoeing away from waves on a shore. In time you get really quite adept at not getting wet. So sometimes it’s not as simple as simply going home, or resting. I need others around me to recognise my experience of my illness, to realise that I know when the pain is going to subside and become more manageable again. That I have a handle on things and won’t want to be pushed out of sight or out of mind.

The times where I’ll reach the upper limit of my pain are thankfully rarer than they used to be. These are the occasions where I am forced to take my pain killers, or curl up in bed. Working is the driving force that keeps me focussed and goal-driven, I need this distraction from my illness, I need the reminders that I am still capable. To be denied these opportunities will make things worse.

This is the hardest thing to explain, that I’ve spent a good amount of energy, and endured a good amount of pain to make it to somewhere like work, and I’m happy to shoulder that burden up to a point if it means some normality. It’s very easy to say that I should be resting every time that I feel any sort of pain, but realistically that would limit me to a couple days a month where I could leave the house.

Ultimately those of us who live with pain know what we’re capable of managing with it, and that’s different for everyone. Your own unique experience of your pain develops with time, until you can manage more and more while it’s with you.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

11 responses to “Endometriosis & learning your levels of pain

  1. Annelle

    I feel like you are writing the thoughts that reside in my head. Thanks for your clarity, positivity and realism. I’m so glad I found your website, I feel less alone knowing there are others who feel just like me. Please don’t stop!

    • Thank you Annelle, really glad that my posts are helping you, and I like it when people tell me that they are otherwise I feel like I put things out there and I’m not really sure how well they are helping, or what their effect is.

      Let me know if there’s anything in particular you’d like me to write about.

  2. I second Annelle … I just found your blog but all of the posts I’ve read so far really resonate. Particularly your descriptions of pain in this post and others you link to—it can be so hard to verbalize sometimes. Perhaps rather than even trying I’ll just send people to your blog!

    • I’m very glad to hear that. I do my best to describe what’s going on in my head, and to explain those sensations in a way others (who perhaps aren’t ill) can understand.

  3. Too add on to that – when pain becomes “normal,” I also start to question it’s reality. Like, hey, I can handle it. Was it ever that bad? Is everyone coping well and I was just a baby for a while? Oh the mind games!

    • I know exactly what you mean. It also becomes really hard over time as you get used to your pain to determine if you’re getting better, or if you’re just getting better at tolerating it. I wish there was an easier way!

  4. rlong21

    I am grateful for this conversation. I have been living with Endometriosis for 20+ years, and I struggle with chronic pain. Mostly with the constant questioning for my need for painkillers. I’m questioned by people who don’t know me well or don’t seem to understand the disease – from doctors and pharmacists to people with “real” chronic/terminal illness like cancer. How do you deal with the disbelief in your pain?

    • Hiya, there’s no simple answer to this. But when it comes to chronic illness like endometriosis it’s simply easier for people to square it in their minds by downplaying the pain and the fatigue, it can’t be as serious as another illness because it’s not terminal. It can’t be that serious because perhaps it intermittent and you were fine that day so you must be better etc etc.

      It’s a coping mechanism for people 90% of the time in my experience. They can’t pair up how I can be in awful pain, but not register it in my face or my eyes. It’s a new sort of normal, a mask I put up so I can carry on. Pain is tiring and so it showing sometimes simply to make people’s expectations easier. Those sorts of people that don’t understand (particularly from the medical profession). Usually have no personal experience of chronic pain or chronic illness, they have to separate the emotion from the illness in order to treat you so they often come across as quite cold. They tend to come around in time. Everyone gets sick eventually, when someone gets a bad bug, or hurts a limb really badly I use that as an opportunity to remind them of that’s how I feel all the time, how I get no breaks, how there will be no relief for me. How I need their help, if I want their help.

      Keep raising awareness of your illness, don’t let anyone grind you down because it’s easier for them to ignore your pain than accept it as truth. We both know it’s real. Don’t accept another answer.

  5. wardkt

    Hi Michelle,

    I want to thank you for this blog. It has been hugely comforting for me to read, and finding this blog was a part of a big step for me to be more active in my approach to endometriosis. It took me a long time, even after diagnosis, to really grasp what endometriosis was and the fact that it was severe and a real reason for my poor health and persistent pain. Thank you. So many of your posts, feel like they are coming right out of my own mind!
    I actually sent this post to a colleague at work and to my parents, as a way of trying to describe to them what was going on for me. It made a big difference to the conversations that I could then have about my illness and the ways in which I was managing it.
    I am currently recovering from my third laparoscopy, this one included a hemicolectomy, as the endometriosis had created nodules on my bowel, causing blockages etc.
    A friend of mine who is a fendelkrais practitioner, lent me a book; Explain Pain

    http://www.noigroup.com/en/Product/EPB

    I found this incredibly useful. It helped me to consider pain in a different way. Particularly, the ways in which pain is effected by all aspects of our lives, physical, emotional, mental. Taking the fear away from pain, was a huge revelation for me. (Although this is more easily said than done!)

    thanks again for your honest and insightful blog.

    • I’m so pleased to hear your feedback. Thank you. Means more than you know. Helping to write this blog helps me in turn with coping with my own illness, so I am very pleased that it is helping others.

      Taking the fear away from pain – couldn’t have put it better myself. 🙂

  6. Samantha Heeson

    i have abdominal wall endometriosis due to a c-section 12 years ago, and the pain over the last 3 months has become permanent, i only manage 2-3 hrs sleep before the waves of pain wake me, i have a very long family history of female cancers so can’t have any of the usual treatments, and have yet to find and pain relief that helps

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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