Monday, December 19, 2011

Top ten tips for dealing with Endometriosis

1) Pain Relief Medication
If you are in severe pain with endo. then you need to emphasise this to your GP. Paracetamol is actually a very good painkiller - with few side effects, but because of its effect on the kidney you cannot take more than 2 every four hours. This has to be strictly followed - with no more than 8 in 24 hours. Because it's fine with the stomach you can take it on an empty stomach. Your GP has probably prescribed mefenamic acid if it's severe 'period' pain which should only be taken after food - as it irritates the stomach. These two weren't working on their own for my endometriosis pain, so my GP prescribed tramadol, as I understand a member of the 'opiate' family so habit forming, but I take two of these when in severe pain. I went back again after three years of still severe pain and got prescribed 'MST' which is a form of morphine, which they are very reluctant to prescribe as it is addictive, but I find this with the other three manages to just about enable me to go to work for example. I find that even if I am still in discomfort, the nausea and vomitting does lessen with this combination. Every day of pain I write down what time I took the medication and what dose - so I remember what time I can take the next lot (they normally say every four hours).

2) Attend the 'Expert Patient Programme' (or another self management course)
I can't use enough superlatives to describe this course! It is life changing, phenomenol and incredible. It's only a six week course - a morning a week - and the best course you will ever do! I think it should be compulsory for every adult! You learn a huge amount of tips and skills to deal with chronic conditions and their related symptoms - pain, fatigue, nausea, sleep loss, anger and frustration. It's taught by people with chronic conditions themselves who are an inspiration. So inspired was I that I then became a tutor myself and taught a number of courses - very rewarding on so many levels.

3) Emphasise symptoms and issues with your GP
Because this is a condition that is largely invisible we are reliant on ourselves to communicate the pain,misery and suffering this causes. We only get 10 minutes in our appointments so I write down my four or five points or questions and tick them off when I am in there. If you don't get through them all then ring them - discuss on the phone or make another appointment. We are important and we need to be assertive!

4) Look into alternative therapies
Even though they may not help with the problem itself, alternative therapies may help symtoms and lessen side effects of medication. I have found all of the following useful (in order of usefulness): acupuncture, acpressure, meditation, self hynosis, aromatherapy, massage, shiatsu, the Alexander Technique, exercise (when I'm well enough), yoga, relaxation, deep breathing.

5) FAT
Fifteen amazing things - start counting your blessings every day - write them down. Look at them over a month and you will be amazed as how diverse and different they are. And some things you don't appreciate enough. And people. I love writing people thank you cards when they've done something for me. There is the website 3bt - 3 beautiful things - too for inspiration.

6) Write a 'Wellness Recovery Action Plan' a WRAP
This is essentially a list you can give to your loved ones and GP of the things you do for yourself and what they can do for you when you have an 'episode' or bout of bad symptoms. (See 7-10 for ideas).  Once written you can put your WRAP in a 'rainy day box'. It can be quite nice working with friends and family with an old shoe box - and getting little things to put in it that we can get out on a 'duvet' day. Again very cheap/worhtless stuff - but sentimental, uplifting and valuable to us. So for me: postcards from friends, flower catalogues, photographs, jewellery, scented things like candles, lip salve, make up, little books 'The little book of calm'. With your WRAP kept in it so everyone knows where to find your list and what to put in the DVD/CD player. There might be music/playlist that you find particularly relaxing or good for pain or a mediation/pain CD you can download. Unfortanately there is no cure for endometriosis and it's going to be with most of us for at least twenty years so we have to find ways of managing it - and not let it dictate to us!  

  7) Hot water bottle/bath
Warmth on the area can help you feel better, and treating yourself to a bath with scented candles and your favourite bubble bath might help.

8) Free Treats for yourself
There are some things that cost us nothing that we can do for ourselves on a bad day - a hand massage with favourite hand cream, reading a favourite poem or uplifting quotation. Looking at old photos of happy times. Watch your favourite uplifting DVD, TV programme. Spray your favourite perfume on a silky scarf and stroke it. Stroke your pets: Get in the 'Animal Zone'.

9) Sleep or nap
The best healer - if you can 


10) Phone friends and relatives

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