Tag: pain disorders

  • I changed my mind #Periodically 29

    I changed my mind #Periodically 29

    Maybe it’s because the idea of pain management came up directly after a flare-up, or maybe it’s because the drugs were actually working, but about six weeks into my trial with the low-dose anti-depressant amitriptyline, in an attempt to reduce my pain, I began to feel like this pain management route wasn’t for me. I sat on it for a couple of weeks and it wasn’t a decision I took lightly — I was well aware that maybe I was feeling like I didn’t need the drugs because the drugs were working. Except that wasn’t true at all, I was still in pain.

    The only noticeable difference was that my bizarre dreams, which I’ve always had a lot of, all became nightmares. I’ve heard that anti-depressants can mess with your dreams or stop them completely, the latter is a pretty scary idea for me. As a writer, I need my imagination to be relatively unhinged and out of control. The nightmares I can handle, but the idea that upping the dosage might mean I stop dreaming at all did not sit well with me.

    I knew if I went to my GP and said, “no I haven’t noticed any difference in my pain,” then her response would be to up the dose, as is standard procedure. But the very notion of how anti-depressants work as a means of pain management has bothered me ever since my GP first mentioned the idea. She said she was prescribing them, “essentially, to stop you feeling pain.”

    As nice of an idea that is, I don’t consider it to be a practical long-term solution, especially when I feel like there are still stones that have been left unturned (i.e. urology). Plus I don’t want to stop feeling anything, I just want to be in less pain, if that makes sense?

    I’ve now started with a psychosexual counsellor who is trying to make it dawn on me that my chronic pain may well be just that — chronic. I’m not too hot on accepting this “truth” just yet, but because of it, pain management is definitely something I shouldn’t shy away from. I need it for the sake of my mood, my work and my relationships (of all natures), but I think I’d rather open my world up to alternative pain management options before I put all my eggs in the amitriptyline basket.

    I discussed this with my GP and she agreed that it sounded like prescription pain management wasn’t the right course for me yet after all, and has instead finally granted my wish and referred me to a urologist. This means a lot to me — I’ve had issues with UTIs, my bladder and kidneys since I was two and while none of my current doctors are wildly convinced it’s got anything to do with my pain, for me, it feels like a really obvious path to explore. Here’s to owning your own health journey within the NHS!

  • Recovery & do I Regret Having the Laparoscopy? #Periodically 12

    Recovery & do I Regret Having the Laparoscopy? #Periodically 12

    I am now over three weeks post-laparoscopy. I’ve started working, from home happily, and I could be doing a lot worse. But for the sake of record, I thought I better write about how everything’s healing up.

    Badly, is the answer.

    In my blog about the surgery itself I included this picture of my stomach’s ‘transformation’.

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    Unfortunately, I think shared my before and after photos a little prematurely. Ten days after the surgery my belly button, for want of a less disgusting word, exploded. Quite literally. But it was a bank holiday weekend and we were on the way to a party, so I slapped on a plaster and carried on. Towards the end of the party my belly button was so incredibly itchy, and as I changed the plaster I discovered the explosion had continued. Hoping it would go away I stuck another plaster on and continued with my life.

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    I’ll spare you the close up, the live show made my sister gag, #sexy, but here’s how much worse it is from two days post-op.

    The Tuesday after the bank holiday I decided it was looking too suspicious and so I went to see a nurse at my new/old GP. She poked it a bit and said it wasn’t infected, covered it with an iodine gauze and said don’t shower or take the plaster off until I see you on Friday.

    Friday rolls around slowly with a lot of itching, moaning and stinging. When the nurse and the doctor remove the plaster, hoping to see a nice, dried up wound, they instead find three blisters where the lower half of the wound had been. ‘Huh, I’ve never seen that before’ is yet another thing I had never hoped to hear about my body.

    Still not convinced that this new mass growing out of me, like something from Alien, was infected, the doctor umed and ahed before saying ‘it’s the weekend – give her some antibiotics’. So the weekend went by with me being pumped full of penicillin, taking awkward half body showers, all while the delightful wound continued to blister and get redder and angrier.

    Another Tuesday later I’m back at the doctors being inspected and prodded. Still not thinking its infected, the doctor concluded it must be some sort of ‘skin reaction’ and so then I was prescribed Fucidin H (an antibiotic + steroid combo) to rub on this, the world’s most disgusting wound. During this appointment the doctor asked about my pain and pushed on my abdomen. Since my files haven’t correctly transferred from Swansea, trying to explain ‘yes it hurts but it often hurts anyway’ was a little longwinded.

    As I write this I’ve returned from the doctors again where this time two doctors had a gander. It looks like I have hyperkeratosis, meaning that the skin is out overgrowing itself. The result is that I might have a bit more of a scar than expected.

    SO THE PHYSICAL RECOVERY IS GOING GREAT. Anything too strenuous still hurts, jumping and such, and long walks conjure up some stomach pain on top of the preexisting pelvic pain so that’s nice. Meanwhile the other wound is acting quite proper and is healing up nicely. An actual nice surprise was that my cycle hasn’t been effected by the surgery at all. My period came rather promptly and behaved fairly normally.

    Given the increasingly bizarre situation of my belly button my mum said to me the other day ‘I wish you’d never had this laparoscopy’. I’ve been mulling that sentence over for a few days now. Do I regret having the surgery? After all, it didn’t find the cause of my pain and it has temporarily deformed and possibly permanently scared my abdomen.

    I can’t bring myself to regret having the surgery. Firstly, it was never really a choice. I was handed from doctor to doctor and they said ‘hey next step is surgery’ and I said ‘hey OK’. It was never an active decision, it was medical practice and advice. Every single one of my symptoms points, or pointed, towards my reproductive health. Checking my uterus out surgically when an ultrasound had displayed nothing, was the next logical step. In fact at that point in time, it was the only step. Now that we know my reproductive health is in tip top condition, we can re-giggle my symptoms and look at my body in a ‘well we know it’s not that so could it be…’ kind of way. The final reason is that to wish I’d never had the surgery achieves literally nothing. I’ve had it, it happened, we know what we know. I wish I knew more, but I don’t BUT I will. Of course it’s frustrating, but powering on is the only fruitful attitude to have.

    Besides, no one ever really saw my belly button anyway – I’ve never been one for crop tops.

  • Articulating Pain #Periodically 11

    Articulating Pain #Periodically 11

    I think I have always been quite a moany person. When I was little I would moan about going to summer camp or after school club. As I got older I moaned about maths and music lessons. Then I started moaning about redundant news stories in prime time spots, the patriarchy and inequality, Brexit, tuition fees. Last week I was moaning about how annoying people were for moaning about Big Ben going quiet.

    I’ve also, from time to time, moaned about pain. I remember following my mum around the supermarket when I was eleven or so, complaining about a dull achey back ache. I moaned about the same pain when I started my period a few years later. I moaned about it even more when I started working at pizza delivery chains and the pain would present itself after an hour or so of a five hour standing shift.

    I have a family full of aches and pains. Moaning about back ache or knee pain is pretty normal business for us. Remarkably, given I have two older sisters, moaning about period pain wasn’t much of a thing in our house (until I hit puberty, that is). I remember texting my mum under the desk in French class the day after I started my period saying ‘I think I have period pain’ and she said ‘try to move around’. An answer I found very unhelpful at the beginning of double French.

    My friends say I moaned about my periods at sixth form. I can’t say I remember that – but it does sound like me. When I started university I was having monthly periods for the first time because of the pill, and that definitely made me more aware of my periods and the pain that accompanied them. I remember paracetamol, hot water bottles and bean bags becoming monthly essentials.

    Then of course I stopped having periods. I won’t go into that again. For the ‘fun’ of that adventure read A Tale of Two Pills.

    Fast forward a year and a half and I’m in Clermont-Ferrand, France. I’ve been off of the pill for three weeks and my boobs suddenly hurt. I moan about it and my parents and, quite rightly, tell me they don’t care. A week later I have my menarche 2.0. A week of tender breasts before my period starts is now a thing. It was never a thing before I was on the pill.

    This very second, I am using Clue and my old diaries to trace when exactly the pain got noteworthy. I had three periods that seemingly passed as nonevents and then we get to January 2015. After a 63 days cycle my period promptly started in a crêperie in Lyon three hours after a friend from home had arrived to visit. Two days later, I got up and began my long commute into the Rhône-Alps countryside and started to feel sick from some sort of new period pain. When I arrived at work I taught one class and then vomited in the toilet before going home – I never take sick days. Actually I’ll just quote my diary here, I think 2016 Hilary was quite eloquent about it:

    ‘I’m finally having a period but once I got to school I felt so faint and sick and there was basically blood pouring out of me. It was horrible. Very strange day, David Bowie died.’

    My next period, seven weeks later, appears in my diary as a divine event. It is the day I wrote a certain blood/vagina quote as discussed in Blood, Books and Vagina. I also wrote:

    ‘The more I learn about vaginas, periods, childbirth and motherhood the more my curiosity grows.’ 

    I was clearly on some sort of (hormone induced?) vagina trip. Though if you’ve read Blood, Books and Vagina you’ll know I had just read Naomi Wolf’s Vagina: A New Biography. 

    Right, so now we’re in March 2016. Once again I’ll leave it to past me (and Shania Twain, apparently):

    ‘Man, I feel like woman! Yesterday, for the first time in my life, I came on my period 28 days after my last period! Everything about this period is different but familiar… Today I feel like total shit and I cannot stop eating, but I know why and for the first time in three years I feel like me and my body are on the same page, yipee!’

    Oh young, naive girl. I don’t know where I got the idea that this was the dawn of a new age because this next cycle would go on to be 44 days, and the following would be 47. What is consistent on my Clue though, is the increase in cramps and ovulation pain. Around this time paracetamol stopped hacking it and I moved onto ibuprofen. Like sore boobs, ovulation pain was not something I experienced before I went on the pill. I have, until now, categorised it as sharp, often breathtaking pain, towards one side below my belly button, usually the right side.

    Once I started having sex again, the occurrence of these pains was no longer limited to where I was in my cycle. Suddenly I was having ovulation pain and period cramps three out of four weeks of a cycle, and recently four out of four (or five out of five). This includes weeks and months where I deliberately stop having sex, the pain continues regardless of my sex life, but is definitely worse when it’s active.

    Yet, it now seems that those pains are not ‘period cramps’ or ‘ovulation pain’. After last week’s ruling that whatever is causing my pain it is not gynaecological, I am stumped for how exactly I now talk about my pain. One option is to shut up and not say anything, quit a lifetime habit of moaning and leave my friends and family in peace. One thing that I’m learning to be really difficult about pain, especially chronic pain disorders, which it now seems is a group I may belong to, is that if you don’t say anything nothing happens. The only way anyone is going to know something is wrong is if you say something aloud.

    There is nothing, bar a heavy period and a bit of bloating, that projects my pain into the physical world. Which means everyone is going to think you’re fine unless you moan, but if you moan all the time then it’s fucking annoying for everyone. But how else do you express that you’re unwell? I need a metaphysical censor above my head. It’s a concept I find really tricky to get my head around.

    Now though, the language I have been using to express that pain is redundant and incorrect. I have focussed so much on my pain-cycle connection that it is incredibly difficult to disassociate my pain from my menstrual cycle. However, the raving pedantic within me can’t get on board with using now incorrect terms. I daren’t start saying ‘ow my bladder hurts’ because in a year’s time we’ll have probably moved onto my bowel or something else. It does of course all come under the category of pelvic pain but there’s something very clinical about ‘ow my pelvic area hurts’.

    I need to find a new language for articulating this pain – any suggestions would be greatly appreciated. So far all I have is Twilight Saga’s Jane blank staring while whispering ‘pain’.

    pain

    In the meantime, I might channel 2016 diary Hilary’s bizzaro way of articulating pain – with utter nonsense and writing a novel…

    Update: since I wrote this my sister showed me this picture. Could this be the language I’ve been needing to moan about my pain?! dementors

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