Endometriosis UK
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En rout to hospital again

Woke at 3am in tremendous pain. Took all tablets, had a bath. Now pain is so bad I can't stand. Worried as I know when I get to the hospital they will not know what to do with me again :-( feeling very sad xxx

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Hi

Hope you're doing ok, sending you a big hug. I really feel for you, I was up at 4am this morning feeling much the same, my poor husband has been woken up a lot lately! Is your gynae at the hospital, if so I would kick and scream to get him down to A&E to see you including you phoning his secretary and generally being a complete pain until someone with some clue comes to see you.

I hope you start to feel better soon xxxx

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Hope you are okay and that you received the support and treatment you needed at the hospital. Take care X

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Let us know how your getting on. Sending my love xx

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Hi how are you! X

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Hi all just got home after spending ALL day at the hospital. They made me sit in a chair in the waiting room for 4 hours, another patient went to get them because they were so worried about the state I was in, they then moved me to a bed but put a sheet down so I didn't mess it up! When my husband got there 5 hours after me he could hear me crying from down the hall. They refused to give me any meds as they said mine were already at the max. They gave me anti sickness and that was all!! They have now sent me home at this time of night because they need the bed!!! I just want them to understand!!! Feel exhausted and so let down again!!! Ok rant over, sorry all!!

Thank you all for your support and good wishes! Hope you have had a better day than me!!! Now to try and get some sleep!!! Sending positive vibes to all you strong lovely ladies!!! Night night xxxx

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Hi hun, I do hope you are feeling better than you did. I'm so saddened to hear how you were treated at A&E, surely they can see when someone is in genuine need of some pain relief and the fact they said they couldn't give you anymore is purely abuse. They pump you full of the drugs when you've had surgery and continue to top it up with oral medication and that seems to be okay! When you are feeling strong enough you need to complain about how you were treated and defo a trip to see your GP. Take care and rest well X.

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Sending u healing hugs. How are u getting on? X

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I'm so sorry you have had to go through that. I've been to A&E in the middle of the night twice. The first night the doctor was great and said if I had any more pain the same to go back. I did that the following night and the doctor was so dismissive and basically said what do you want me to do? I can't help.

It's so frustrating that A&E staff are so clueless about endo in the main. I hope your pain has eased. Sending my love and happy thoughts x

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Oh sweetheart, I completely understand - before and after my diagnosis, before I was on the right pain relief, I was admitted to hospital by ambulance at least twice a month for over a year. This eventually led to my diagnosis but there was still a long time after where I wasn't on the right painkillers.

Telling you they can't give you anything else is nonsense - they can give you a lot more than you can take at home. At one point, I was taking over 1,000mg of oral morphine a day, and one time in hospital, they had to give me well over 30mg IV before my pain was under control - no doubt that wouldn't be safe for you because you don't have my tolerance, but at the very least they could give you entonox.

You need a summit with your GP and a family member. Tell them you are regularly wasting NHS resources because your pain control is insufficient and they need to refer you to a pain specialist. In the mean time, you need a slow release opioid or opiate you can take every 12 hours plus a fast acting version for breakthrough pain. You need tramadol, or morphine - most likely your pain levels are too high to be managed with codeine. You can also take paracetamol and voltarol.

If you are ever in so much pain that you can stand or speak, or you are fainting / feel faint, call an ambulance. It is an emergency, you cannot take public transport in that state. The paramedics should give you gas and air at least - some will also give you IV morphine but it depends what you've already taken. When they drop you off, refuse to give up the entonox until they give you one of the hospital's cannisters.

Some hospitals, like my local one, will refuse to give you pain relief. Others will only do it if you're crying you loudly and it's annoying them, some will write in your notes that you're a drug seeker (I've had that, even when I tell them I take more morphine at home than they're giving me). I know it's hard to stand up for yourself when you're in that state so try to take someone with you - demand to see someone from the pain team and the gynae department. If all else fails, ask them to send an anaesthetist from maternity to give you an epidural which helps instantly.

What is the status of your diagnosis / treatment? I went through all this nearly 10 years ago and I'm saddened that things haven't improved - when I moved to London, the A&E there were amazing but now I'm back home I'm stuck with the shocking care and occasional refusal to give me any more than IV paracetamol!

Once you have a sufficient pain control regime, this should only be a rare occurrence for you - I haven't been admitted like that for over 3 years since I got a decent pain specialist and she sorted out my pks. Now I'm back with a moron who wants me to stop morphine all together (after seeing me for four minutes and asking me no questions, and then discharging me and leaving, and a new referral and has been refused as the department is too busy - because obviously someone housebound and on 600mg of morphine a day doesn't need a pain consultant!).

You are not alone, but you need to put pressure on your GP to get this sorted. Sending hugs.

x

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Hope your okay lovely I know how you feel A&E always lets me down I get labelled as a druggy as they think I want morphine, the only thing I get is gas and air sometime other times am left with nothing am on oral morphine at home but when the pain gets so bad I have no choice but go to hospital :( paramedics give me gas and air and some times iv morphine lots of love

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