A and e experience

[Mincespie]

I have a condition called endometriosis I’m on numerous medication see consultant’s doctors, private doctors have pelvic floor therapy have changed my diet and had 3 surgeries. I’m still left in so much pain every month I’ve had to quit my job because of it. Today I was in bed with morphine codine some other meds got water bottle etc. I’ve been sick constantly from the pain. in the past I’ve called 111 and been sent an ambulance which I felt was over the top especially as I live so close to the a and e department. My partner was so worried about me as I wasn’t myself and spent the evening crying on the bed in pain being sick. He took me to a and e as there was nothing else I could do for the pain. I got seen to have some obs done
quickly to begin with and said I had some morphine 2 hours ago and some codine 3 hours ago. After waiting two hours I asked the lady on the desk if I could have some pain relief as I would of been due some codine an hour ago if I was at home or could I take what I have in my bag they said no and to wait incase they want to give me something else. I spent the whole time crying under my mask trying not to be sick in the bowl as it was all so painful it was way worse than normal. They eventually took my bloods and and hour after gave me some morphine but said it could be up too 7 hours till I properly see someone who can help. At that point I didn’t no what to do I couldn’t do seven hours being sick in the waiting room but I also couldn’t be in pain at home crying I ended up going home as I was in more pain from sitting up and my hot water bottle had gone cold. I asked if when my bloods come back and my urine sample would I get the results and they said no even if I called up. I spent around 4 hours waiting. I know the nhs is underfunded understaffed and over run and the doctors and nurses are working as hard as they can but I feel so fed up I had to decide weather to put myself in more pain just to get some help or go home and lie down to get slightly more warm and comfortable. I’m now in bed crying while lying on a towel as I’ve soaked through my pad and pyjamas.

When I was in hospital they gave me codiene and morphine. Ketamine too actually. When I left I had codiene and a bottle of morphine for break through pain.

I'm not saying it's a wonderful combination of drugs but her doctors are prescribing them for a reason. It's not uncommon.

I'm sure you've already tried it OP but I found Naproxen (strong anti inflammatory) better than opiates for endiometriosis.

I take high dose of morphine (I've been offered fentanyl but refused because I don't want to hand in my driving license) and have a permanent line in which means regular trips to A&E that are always triaged to majors.
I know I have to wait but always take my pain relief with me. I couldn't go twelve hours without it and going home isn't an option. I've never been told off for taking it whilst waiting my turn.
Pip has nothing to do with working, plenty in receipt of it work) and isn't means tested.

I mean this in the kindest way possible, but I do think that if you're able to get up and go home, you don't need to be in A&E. Codeine AND morphine is an incredible amount of serious pain-relief - Emergency medicine is not the place to get more. I do wonder whether staff were concerned that you were there for medication/ addiction. I am so sorry for your issues, but you need to be seen by the right people, and, unfortunately, A&E can't really help you.

You can get PIP while you are working.
My son & niece get Pip & both work part time. I'm off on long term sick but got PIP while I was still on full pay. So you can apply.

Hope you can get some better pain relief soon.

I’m sorry you’re in so much agony. :( Are you under pain management? It sounds like you’re on a lot of pain relief but still struggling and maybe they need to review you and do more to help you before you reach crisis point.

It seems urgent to have your pain medication reviewed. If morphine and coedine are not even helping that you're still in tears you need help. Sorry to be brutal but I wonder if a&e thought you could be an addict after pain killers?

Maybe they thought I was there for just the drugs but I actually only take the morphine at home in extreme circumstances. I’ve only renewed my prescriptions as the bottle of morphine has expired not because I’ve used it all

@Mincespie no, of course. I was just saying that I think it would raise a little red flag with them - not because you have done anything wrong but because they do need to be mindful of such things. I think it is common.

I am really sorry that you're feeling so rotten. Endo is an awful condition that really doesn't get the attention it should.

Really hope things improve for you, and soon.

Well said. I feel that I dare not get Ill!! The system is badly broken it seems.
The pain with endometriosis is excruciating, OP you have my full sympathy.
I ended up having to havre a full hysterectomy in my mid 30’s.

I don’t know if you have or want children OP.

I had fibroids and endometriosis, the flooding and pain were unbearable and nothing ever helped. I cannot express the relief of having a total hysterectomy. Your life is so severely impacted that it might be worth considering.

We are trying to have children at the end of the year so am putting off a hysterectomy just yet

A&e isn't the place for pain management for endometriosis. They will do exactly what they did, give u pain relief and send you home. It's not going to speed up the appointment to the pain team or gynae team. That needs to come from your Gp.

Also codeine and morphine are not a good combo for this type of pain as others have said

I take a whole list of other medication not just codine and morphine I know a and e isn’t the place for pain management but I have no other Choice until I get seen by a pain management specialist which there is a long waiting list. My doctor can prescribe stronger meds but they are reluctant until I see a pain management specialist and the other doctors seem to think I should take the codine and morphine until I decide to have a hysterectomy

Transanamic aciD
Morphine
Naproxen
Citalopram
Metrocloprimide
Omeprezal
Cocodamol
A list of what I take currently I have tried other medication in the past and was on some hormonal contraceptive’s but we want kids soon

Can you afford to go private?
I can only imagine how horrific your condition is, I have had friends with this condition, but a and e isn't the place for you to be IMO.
My sister is 38 weeks pregnant and was sent by 111 to a and e with suspected pneumonia, she was triaged within an hour, kept an eye on, x rayed after 6 hours and admitted for the night after 8 hours. She was extremely grateful for this as from her perspective this was quick, she thought she was a time waster being there but wasn't at all. Saw people coming in with appendicitis who also had to wait a long time. The people kicking off were people who literally just turned up with what looked like a full picnic and nothing wrong with them.
She never would have gone there if 111 hadn't booked her in to go, she thought she would just been seen by out of hours GP.
They are overstretched and I agree the NHS is on its knees, but a and e isn't for endometriosis?

I’ve seen a private doctor a few times but it’s extremely expensive as is the prescriptions the last was around £100 pounds unless im able to get my gp to prescribe to me the prescription which I was eventually

Jesus. So sorry to read this. The system is totally shite. Hope you find a better way.

I'm sorry OP - endo is a ghastly condition that is severely undertreated in the UK as it only affects women. A friend of mine has it really badly and says the only way she can get anyone at A&E to even lookat her is to go without a pad and bleed and puke everywhere. I'm afraid that I believe her and it is shocking than women have to go to such extremes to get even the smallest amount of treament

I was in A&E yesterday and iv never seen anything like it. It was soo busy and manic.
My 1 year old has very bad croup and had laboured breathing and we waiting over 2 hours just for triage. I would have expected a young child with breathing problems to be a priority but there were soo many babies and very unwell people there.

Once we got through to the paediatrics department, I had to sit on the floor in the hall as all waiting rooms were full. We were there for another 3 hours! It was very stressful.

I had already called GP- no appointments, been to walk in- no treatment appointments. So A&E was my only option.

It does feel like the system is broken. I think A&E should be a very last resort. Could you get an emergency GP appointment?

Are you on any contraception, e.g. the coil? That will help your symptoms massively.

Codeine and morphine are likely making you constipated which won’t help your symptoms at all. I’m sorry you’re in pain

I’m definitely not constipated I poo at the same time every other day I’ve always been really regular. I’m not on contraception as im
trying for a baby

I get that the nhs is on its knees and struggling but its so hard when you wait hours in a and e to be seen and you see in another thread people are not turning up to appointments and surgeries

Oh I see, but if your endometriosis symptoms are currently so uncontrolled that you’re off work, on very strong painkillers and going to A&E with severe pain, it might not be the best time to be trying? In your shoes I would probably want to get my own body sorted first before I started thinking about growing a whole new human.

I also still had pain on contraception I had the injection and bled for 6 months Ive then tried many different pills but they’ve all made me nauseous and the rest I can’t take due to migraines with aura. I’m desperate for a hysterectomy that I’m willing to try now as I really want children

Have you tried the Mirena coil? It’s one of the best treatments for endometriosis. Depo injection wouldn’t have done you any favours, but Mirena IUS is 💯