Chronic endo pain bad enough to be going to pain management. How many of us are out there?

[Eggcustard]

Hi, I was just wondering how many others are in the same position. How many of us cope with all this:-

1. Chronic endo pain (constant pain that never stops, nerve pain in my case) and have been referred to the pain management services because there is not much else that can be done.

2. Can't work so have financial problems.

3. Are literally housebound more often than not because they can't walk properly anymore.

4. Can't do activities that they used to love (in my case going to gigs, I can't stand for long enough now)

5. Have lost touch with good friends because they are in too much pain to feel sociable.

6. Feel constantly fatigued through pain and meds.

In other words endo affects every aspect of your life.

I'm not saying this in a self pitying way, oooohhh poor me, I'm trying to see if we can help each other as there seems to be little help around. It's easy to feel you are the only one going through this although I know I'm certainly not.

I feel like there is a lot of info out there regarding symptoms, diagnosis, treatment etc that cover the basics but not much more than that. Obviously this info is very important and helps with diagnosis etc but what then? after the diagnosis, after the laps, then what?????? xx

[linnyloo63]

Hi your me everything you described

Pain management clinic I was told to walk more

Money claimed ESA went for medical told I was fit for work my DR and I didn't agree so appealed against it and won

DLA claimed twice second time went tribunal after a long hard battle lots of letters and a medical on one of my worst days I won

My illness is classed as terminal because of scar tissue and adhesion I can't be operated on and I need surgery like u sometimes I can hardly stand or walk my bowel and bladder don't function properly at the moment tramadol are helping me have a normal sort of life without them I'm in a bad way some days my lungs hurt I can barely breathe , there is help out there but you got to fight for it

[Eggcustard in reply to linnyloo63]

Thanks for the reply, I'm so sorry you are in so much pain. I'm in the process of applying for DLA so will see what happens there.

I have had a letter from the pain clinic asking me to go back in so maybe they will have some ideas. Have you had pain injections etc? I am taking tramadol which do help but not as much as they used to so I take strong co-codamol on top now which makes me want to sleep all the time. I am also taking amitriptyline which definitely does something (I tried to stop it a few weeks ago and ended up in sooo much pain). Have you been to a specialist endo clinic? Do you know of anywhere that specialises in chronic pelvic pain? How long have you been like this? xx

[linnyloo63 in reply to Eggcustard]

20 + yrs no they won't do anymore for me it's down to quality of life hence the DLA

[Eggcustard in reply to linnyloo63]

Sorry to hear that, if I can do anything or you need someone to talk to then get in touch xx

[linnyloo63]

Oh thank u I've come to terms withit now so on good days make the most of life

[Eggcustard]

Maybe I'm just in denial about it all and I haven't accepted it yet, I still have a few options left such as the hyst but I'm told that the nerve pain is permanent, and the endo pain had a 50/50 chance of going. I have managed up to now with the tramadol etc but am having all sorts of new pain lately which is scary. I think I will have to apply for ESA but I have been putting it off for ages. Like you, I appreciate the better days when I can get out and about (usually 1 or 2 days a week) but sometimes it's just so tiring. Maybe the pain clinic visit will help, or maybe I need stronger drugs!! x

[Hidden in reply to Eggcustard]

I've been referred today.

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