Wednesday, 19 February 2014

Day 16, Pain Management

Endo 365

Unfortunately I have taken a slight turn for the worse and have been in a fair amount of constant pain for the last six days having started my first cycle in four years! I'm in a strange but exciting transitional period right now where it feels like i'm going through puberty again for the first time (Sorry for the graphic details- taboos are my target. Plus if I can talk about my extremely 'embarrassing' periods than ANYONE can) I thought it would be appropriate to write a blog on pain management and the tricks of the trade that work for me- if nothing else to remind myself! But do not worry because it is me and I am always happy ultimately.

For those of you who do not know, I have a common condition called Endometriosis which causes me great deal of  pain and discomfort every day. Before it was under control, I would be rushed into hospital fought-nightly aged fourteen in a labour-like state, attached to a morphine drip for pain management. I am aware of being melodramatic however anyone that really knows me will testify that when it comes to my endometrial pain I an quite tough. I remember the worst pain attack Iever received   and the only time I ever gave my pain score as a screaming ten, and my body was in such a state I genuinely thought I was dying. Thinking about the pain I was in makes me go cold and it is impossible to justify or articulate.
               Although thankfully I very rarely suffer these out bursts now, I still spend the first half hour of every day in bed mentally sitting out my pain before I get out of bed and usually scoff down painkillers with my first cup of green tea of the day. In fact funnily enough I am in quiet pain now just writing this blog (I call 'quiet pain' the constant pain which I am able to act normally with, its like an in-joke with myself, I know I am in a fair amount of discomfort but no one else does- except special people who can tell the signs like me singing or making the occasional cat sound..)

Six months after being diagnosed with Endometriosis I was referred to a pain consultant who was brilliant and we discussed medication and lifestyle options to make everything more bearable for me.  The thing is, not everyone is the same, its about trial and error; finding the balance and creating a routine that works for you.
All the stuff to follow is what, through time, gives me the best quality of life. This may be useful for fellow sufferers, for people who suffer with pain in general or just to give you a little perspective of what it is like.

The Medical Route
I avoid painkillers until they are reallly necessary, and ironically when the pain gets bad enough for me to resort to taking them, they are no longer effective upon the pain anyway. Funnily enough I have just been to see me GP about 'the delicious cocktail of painkillers' I have been supping over the last two weeks and we are in agreement and excited about my future without having to take painkillers before I get out of bed each morning and maybe even having days where I take none!
When I was just 14 I used to take 28 pills a day. That is right, 28. I started doing a little campaigning then to try and raise awareness for endo and posted a picture (below) of all the pills I took in one month. It made an impact and even now when I look back at the picture its hard to believe a fourteen year old would consume all that in one month, and yet it was me. I now take far less, I will take these but not every day anymore:  paracetamol, naproxen (The big brother to ibuprofen), buscopan, nortriptyline, fybogel and tramadol and I used to be on monthly injections of GNrH to induce a false menopausal state and stop ovulation and the growth of my endometriosis. Codine and Cocodomol are enimeys to my stomach and I am almost always violently sick after taking them. I trialed the first ever drug made for Endometriosis called 'Visanne' which we had to buy in from Canada. Although it has brilliant results genrally, it did not work for me. Worthwhile researching if you suffer Endometriosis and are looking for alternatives.

Positive Thinking
As I mentioned in my last blog 'Day 7' (assuming you have not had the misfortune to read it), I partook in a pilot NHS scheme about three years ago for teenagers living with chronic pain. Pain is like a negative circle.
        In layman's terms (the only way I know): When you're in pain, you become distressed. When you are distressed, your pain becomes magnified by your body. If you think positively and think of good memories or the things that make you happy, your synapsis excrete serotonin which means your body absorbs the happy hormones and less of the pain messages end up being delivered to your brain.
Along with deep, steady breathing, this method encourages your body to release its natural pain killers (which at their best are not too dissimilar to a modest dose of morphine) and genuinely  make a difference.
Likewise, getting upset, anxious, nervous or adrenaline,-good or bad, always becomes a catalyst of pain. Naturally (like my mother) I am some what highly strung. However something I love about my endometriosis is that it has ensured I retain enough self-control to overcome being a stressy cow and forcibly makes me into a laid back person because I have learnt to let things go or I will cause myself pain.
Mind over matter my dears, mind over matter. 

Baths, Hot Water Bottles and Applying Presure
As with any pain or ache, heat is a great friend. Hot water bottles are great because the provide heat for specific areas and also apply a bit of presure. I find that having some weight on my stomach really helps; i've ended up with all sorts of people sat on my stomach in the past. It is also a brilliant way of meeting new people... For a period of time I have a bath every night as I find it really does do a lot for me. I also love using Himalayan pink salts and have an amazing company to recommend if anyone would like a referral. When at home or sat down in the office, I will happily have a hot water bottle on my front and back as it is minimal input for a good, comforting result.

It is so conflicting because I am quite often kept awake with the pain, but I find my pain levels considerably more bearable if I have a good amount of sleep. For example, I had a mini pain attack on friday and one the saturday night my body was so exhausted I slept for 13 hours straight,  after a long sleep in the afternoon. It is hard when pain causes you fatigue and insomnia all in once as Endometriosis often does, but grab the sleep where you can, and ensure you take a tens machine, hot water bottle and good book to bed.

This is something I have always done and every specialist I speak to urges that I continue. Due to the internal bleeding, it is important I keep active so that my organs don't stick together. I can always tell if I have not been exercising for a while as I can feel the pain afterwards. The endorphins released via exercising work just like the positive thinking does re your synapsis. The greatest reason that I find exercise helps with, is the mind. I am always mentally so much stronger when I regularly exersise  and that is half of the battle won. Exercise is a brilliant stress and frustration outlet and I tend to find problems resolved in my head and heart after a tough run. It doesn't have to be a marithon either. It could be a gentle swim or even walking the dog.

Alternative Hippie Medicines
Believe it or not- I don't actually use any. I have tried a few and they did not work for me. I have friends that they do work for though. Like I say, different things work for different people.

Preferably younger as they are easier to emotionally black mail into making cups of tea and fresh hot water bottles.

Tense Machine- My Secret Weapon
I can not quite remember how I came into buying a tense machine, I think it may have been my Granny- who is a retired sister and living medical dictionary. This machine is my love, my joy and my baby. It has become like a comfort blanket to me. A tense machine is mainly used by women during labour as a form of pain relief that isn't medication. It essentially pads that are attached to a battery powered box by wires- people used to think it was a life support machine or that I had diabetes (?) , I told myself it was a fashion accessory. I can see why it would be fairly embarrassing to wear in public as it was difficult to wear under a lot of clothes and I had wires hanging everywhere, people would stare and ask questions- but surprise surprise. As long as it relieved my pain and I could continue with my education, I would have practically gone naked if it would have helped.
A tense machine works by sending lots of little electric shocking into an area of your body that hurts (I will always have two pads on either side of my lower abdominal and back).
The electric shocks simply intercept the pain message going to your brain. It is beautiful and the electric shocks also encourage your body's natural painkillers to release which is probably why I find it so much more effective than all pain killers bar morphine.
I have a few friends with painful periods, after trying mine, most have bought them (I should be on commission I know) because they really do make an impact. You can try a cheap one first from boots, they usually start at around £15 and if they work, move onto a more reliable one. The one I have now and use all day long currently and have done over about three years was £50 and worth every penny a hundred times over. You cannot put a price on peace.

Diet- My Second Secret Weapon
I was on an endo diet for a year which helped, however I have since been on the FOBMAPs diet for 18 months which has been life changing. The endo diet cuts out all foods that your body uses to produce hormones which the endometrial tissues feed off. The rational behind it being that if you stop the production of oestrogen and the like, the endometriosis cannot grow. There is lots online about it and it is absolutely worth a go. It is essentially a vegan diet without soya. My new diet is mainly to tackle my sexy IBS and I cut out all gluten, lactose, onions, garlic and about 80 other small things, but mainly those four. After the year on the endo diet, I find this one a breeze to stick to and it had dramatically helped my pain levels (we discovered a fair amount of my daily pain was from my IBS caused by the endometriosis on my internal ligaments). I love my diet, I eat lots of salads and fresh stuff because I cannot pick food up on the go and nothing toxic comes near me (except the odd G&T- but I know people who consider it to be a medicine in its own right, and I remain as ever open minded). The only issue with this is eating out and explaining to people what you can and cant eat without sounding crazy or like a total diva- neither of which I mind or are particularly untrue.
I would whole heartedly recommend this diet to anyone- you have nothing to lose by trying this or a tense machine. My mother was a food technologist and between us (her creating, me tasting, I can take no credit) we have fine tuned some damn good dishes, so if you would like some recipes, email me:

My lasting thought for you all:

Pain is demonstrative. I know I am impossible to handle when I have had a rough day and am fed up of telling people "I'm fine." Pain is isolating, debilitating, fustraiting, heart breaking, depressing, faith destroying and can rot a person to its core. Please bare with anyone who is in chronic pain, it is a long and unforgiving road, often not at the person suffering's fault.

To my friends and family, I am sorry for all the times I have been insufferable and angry. Thank you for sitting with me while I cry and for rubbing my back, thank you for being patient with me when I didn't deserve you to be. Thank you for listening to me cry and giving me support and hope. I hope this is in my past and you only have the best Alice to enjoy in our future.

Keep an open mind and give everything a fair go because you never know what will work for you. And whatever it is, when it does, it will be beautiful.

All my love,


1 comment:

  1. This is all wonderful advice:) have you ever read Endometriosis: A Key to Healing Through Nutrition By Dian Shepperson Mills & Michael Vernon .. i found that really helpful when I was first diagnosed. I loved what you wrote about positive thinking, thats something im really trying to work on! also do you have any links for the Fodmap diet stuff?
    Many Thanks,
    Becca x