Monday, September 17, 2012

Pain scales: what it's like to have endometriosis

So I've got a whole bunch of outfits that I've taken photos of but the uploader thing is being funny so none of that right now unfortunately! (It will let me copy stuff that is uploaded on the internet though, which means that you get this delightful comic that made me laugh.)

Haven't had the best day ever, had a very frustrating time trying to change my car registration and license over to the ACT (there is a reason I have put it off for a year and nine months!) and I think because of that stress and fatigue I've ended up with the worst pain I've had in awhile. It's definitely still nowhere near as bad as it used to be before my operation, but it's a different kind of pain. A kind of pressing, slightly tugging, constant pain, that I've had to learn to deal with over the last six months because it's a different kind of pain from what I'm used to.

I used to have about 2.5 weeks in a month where I would be mostly fine (0-1 pain scale), and about 1 week where I was in quite a lot of pain but could function (with a lot of effort, drugs and heat packs, 6 -8 pain scale) and about half a week when the pain was excruciating, I could hardly move and I'd get contraction-like pain (this is when I would have time off work, 9-10 pain scale). Now it's more like 4 weeks with constant everyday pain ranging from 2-5, along with frequently having to visit the loo since my bladder hurts when it's even slightly full. Tonight's a 5. I think that in the long run having everyday low-level pain (although hopefully that might resolve itself too) is something that is more conducive to me living a normal life than the crazy labour-type pains I was getting every month that I had no control over. (It helps that I'm pretty much not getting my period anymore because of the Mirena).

I've also pretty much stopped taking all painkillers at the moment - partly so I don't push myself too hard and overdo it (since pain is there for a reason, right?), but also because I don't like the way I feel on them, even if they take away the pain (which they don't always) and I'd rather not have to rely on them and instead be able to cope with my pain using my brain.

Above: a couple of pain scales that I think help to convey what different levels of pain are like.

PS You might see that this blog is changing a bit. I still want to do my outfit posts since that is what makes me happy but after going to an endometriosis research group on Friday and hearing and remembering yet again about how there is still so much shame surrounding this disease, I've decided to start writing more regularly about what it's like to have endometriosis. I also think that sometimes I tend to downplay my pain a bit because I don't want to make a fuss. As a woman, I have been told my whole life that period pain is 'normal' and it's something you just have to deal with, so it's a bit of a reminder to myself as well to take myself seriously. I think it might help my friends and family to understand more what it's like as well.

Here's a link that I think describes the pain well. I read it and found myself nodding in agreement with every sentence. "You can't be ill. You look fine."


  1. Libby, I'm so sad to hear that you are now having pain every day :( Although, you are right, you are probably more able to live a 'normal' life with a more consistent pain. I would still be getting it checked out though (which no doubt you are) as one would assume chronic pain is not good for mental health :(


    1. The problem with endometriosis is that not only is there no cure, there is also no sure-fire treatment. It would be a miracle if a treatment had no adverse side affects and usually it's a miracle if the treatment actually gets rid of the pain. I've currently had two of the best treatments available - surgery and the Mirena. On top of that I try to get as much exercise as possible (exercise improves blood flow which improves pain), I don't drink coffee, limit my dairy intake and I take daily krill oil supplements (it helps the inflammation). There is really not anything else you can do to treat it once you've done that, apart from psychological treatment to deal with the pain, which I am about to start now. I'm hopeful that in the future there will be more treatments available and maybe even a cure, but I try to be realistic as well. (One of the mental things I've had to deal with since the surgery was the idea that everything would be fixed once I had surgery, which it has not. I guess I've finally realised that some things in life just can't be fixed.)

      Other treatments that I've tried (and that have failed) are: various painkillers (Naprogesic, Ponstan, Mersyndol and even up to codeine/endone - although they have huge adverse effects) and a few different versions of the pill (didn't help the pain and made me quite depressed among many other bad side effects). I've had at least 8 different doctors over 10 years for this, and most of them don't have a clue. I have known more about endometriosis than every single doctor who has ever treated me. I'm still hoping to find a really good one but it is expensive, time-consuming and extremely emotional (every time I have to re-explain my symptoms, the treatments that I've had and the lingering pain, only to be told that there is nothing that they can do can be quite upsetting).

      And yeh, you're right, it really isn't very good for mental health... but I'm trying to face that with a psychologist.

      Sorry if that sounds uppity or something, I just want to spread awareness of the fact that this isn't something that just "goes away". It's one of life's trials that you have to learn to live with.

  2. Wow... that was pretty much another blog post. Maybe I should actually write a post about that.

    1. Also totally melodramatic last sentences when I re-read it. It all sounds so much more dramatic in writing than it would if I was saying it!

  3. so when are you going to add the picture of you as Ms Frizzle? I really like that outfit

  4. Ha ha, not melodramatic, just someone who has been dealing with this pain for a long time now. Many times over I have been reminded of how little modern medicine can do in the bigger scheme of things. And how frustrating some doctors can be. You are wise to get help learning how to cope with the pain- our minds are powerful tools that can work for or against us. To be honest no words would be able to express how sad I am to hear of what a frustrating and painful time you have been having. All I can do is pray for some relief for you, in whatever form that may come, xx


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