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What will happen if I go to A&E with endometriosis pain?

(24 Posts)
EndoTheWorld Mon 14-Nov-16 18:31:22

Not going now, but yesterday pain was so bad, as was the feeling of having to lie down with closed eyes to avoid vomiting. Was also really shaky/having chills and feeling I needed to be wrapped in a duvet despite being hot to the touch. Abdomen swollen lump of pain, have to lower myself down gingerly when I sit down or it feels like there's a spear going through me. Ended up phoning 111 beggin them to make the pain stop. hmm blush
Have Diclofenac 50mg, 3 a day, as painkillers prescribed by gynae. Had a laparoscopy that confirmed and removed endo 18 months ago, awaiting another one. This made no difference to the pain (Although did help with related bowel issues as endo on bowel). Had to get painkillers from gynae as GP will only offer "standard" meds, like mefanaemic acid, tranexamic acid, which have made no difference to me, or hormonal birth control which makes me suicidally depressed (already have MH issus so have to be really careful about this). Btw gynae believes me on this but GPs act like I'm making it up! Used to use codeine but it stopped working (only used 1-2 days a month so surpised if this is tolerance building up.)

In short, I want effective pain relief, and can't seem to get it. I'm torn between feeling like I'm making a fuss, and feeling angry that I can be crippled with pain, vomiting, dizzy and shaky, feeling like I'm dying, and yet am expected to just get on with it! If I had a job now I'd get fired fro needing 1-2 days off a month - this is really concerning me. I'll be struggling in min wage jobs, if I can find a job at all after being off for so long (for MH) - I need to get pain relief sorted so I can work when the time comes.

I wondered about going to A&E next time in the hope that they take the pain seriously. The thought of getting there in a taxi and sitting in the waiting room for hours is horrific, but at least they'll see how bad it is, iyswim.

I don't know...

ps. sorry if moany, quite weepy right now

legotits Mon 14-Nov-16 18:37:03

Ignore my post when a more topical one comes.

Tried marijuana?
Don't rule it out as pain relief it's the only thing that I can function on.

mumonashoestring Mon 14-Nov-16 18:43:47

Going to A&E for pain management is absolutely fine, although they're unlikely to prescribe anything different to what your Gynae prescribed. Your local hospital might have a dedicated pain management clinic though and that would be well worth finding out about/pushing for a referral to.

Are you on a waiting list for your next laparoscopy? I know it sounds a bit mad but it is worth ringing the clinic who will be handing the procedure to ask about cancellations on a regular basis.

LunaLoveg00d Mon 14-Nov-16 18:46:47

Go back to your GP and demand a referral to a gynaecologist. You do not have to suffer like this.

LadyFanjo Mon 14-Nov-16 18:47:05

In the past I've been to A&E because the pain was so terrible. I ended up staying in for a few nights with an emergency laparoscopy. Thankfully the enforced rest, consistent pain relief, and lots of morphine helped. Sadly, this is something that happens about twice a year with the only let up the two year period of being pregnant and breastfeeding.
Have heard good things about cannabis oil? Hope you get some relief soon x

Loosechange1 Mon 14-Nov-16 18:47:39

You are likely to wait hours to be seen, will probably get something for pain at that point, but it won't help in the long term.
Agree ask for a referral to pain management, or if the GP isn't happy to increase the pain meds in the interim ask for them to contact gynecology for advice re where next.

StewardsEnquiry Mon 14-Nov-16 18:54:41

Luna, OP said that she awaiting a laparoscopy. She is under gynae. hmm

legotits Mon 14-Nov-16 19:24:39

LadyF Canna oil is excellent, especially for cramps and spasms.

Depending where you are of course.
If you have to use black market cannabis then buying bud is better (less processed so less chance of nasty) and smoking it, bong if you don't like tobacco.
If you live somewhere it's available on prescription then it will be qc checked and worth switching to.

LadyFanjo Mon 14-Nov-16 19:30:24

Lego I imagine since I'm breastfeeding it's not advisable to use just yet?
Also didn't realise it was available on prescription yet - thought I'd have to go down the dark alley, hoodie transactions to be honest...! Thank you.

Endo I realise this isn't much help but have you looked at the endo diet long-term? Also, Epsom Salts are a temp pain relief (well, they relax as much as you can) Sending lots of positive thoughts - I get how awful this shitty disease is.

legotits Mon 14-Nov-16 19:41:23

No not safe for babbies!

I've heard of very very sympathetic GPs that have put people in touch..
You have to ask your own discretely, they wouldn't be able to bring it up grin

UnGoogleable Mon 14-Nov-16 20:08:27

Oh my love, you could be me. I've been through very similar, and was also fobbed off by my bastard GP. It took an A&E visit to finally get me seen by a Gynae, and I've since had 2 laps.

My take home message to any endo sufferers our there It Is NOT NORMAL to feel like this and don't let anyone tell you it is, even your GP

So, first things first - you're under the care of a Gynae and on waiting list for 2nd lap, right? If that's the case, then the best thing you can do is call the hospital on a regular basis to make sure you haven't fallen off the waiting list (it happened to me. If I hadn't called regularly, I'd still be waiting now). Tell them you're in terrible pain, it's impacting your life and you're desperate. If you're getting nowhere, you could ask for another consultation with the gynae which might move things along.

Assuming all is going well with the gynae and you're just waiting, then you may just have to wait it out and deal with it the best you can. Pain relief - mefenamic acid, regular ibuprofen, codeine, hot water bottles all worked for me. As did resting lots and taking it easy.

If you really can't take the pain, then an A&E trip would give you extra pain relief, bed rest and perhaps an emergency lap. I didn't do this, because I was under the care of a specialist surgeon and an emergency lap would have been done at my local hospital by a general gynae rather than the endo specialist that I wanted. It was worth the wait.

Finally - check out HealthUnlocked - a forum for Endo sufferers. You will find many women there who are going through exactly the same as you, and will have lots of good advice.

flowers you have my sympathy, hang on in there

Titsalinabumsquash Mon 14-Nov-16 20:15:00

I went to a&e every day for 3 days (say/sun/mon) in a row once when my GP surgery was closed on a bank holiday Monday and I'd seen them Friday but got a stern dr that wouldn't help.

I was in pain to the point where I was shrieking and vomiting and going crazy, I begged a relative to have the kids so I could scream without them hearing. I eventually got sent home with oramorph and a much more urgent referral to the gyne consultant, a&e weren't very happy about me turning up so frequently but I honesty think I would have done harm to myself just to make the pain stop if I hadn't have got strong pain relief. Endometriosis is a bastard.

EndoTheWorld Mon 14-Nov-16 21:40:14

Thank you for the advice and sympathy blush
Tbh I'm not really expecting the lap to change anything - it didn't reduce the pain last time. It won't be long though, and will be done by a specialist so that's good.
It was quite funny in my last appointment with the gynae - he said I'd have the lap within 16 weeks, I said "Oh, that's quick!" and he looked at me in disbelief. And then insisting on high-fiving me for making that comment! I guess I'm used to MH waiting times... wink

On the other advice <ahem> it makes me too sick when the pain is bad! Helps in some chocolate when it's milder though. I'm in the UK so nothing on prescription afaik! (And if it was, the GP would be so suspicious! Already refused tramadol.)

UnGoogleable Mon 14-Nov-16 22:21:33

What are they planning to do with this lap? Just drain a cyst, or are they going to excise some of the endo?

My first lap was done by a gynae generalist and he just drained the cyst, and it came back straight away. Second lap done by an endo specialist, and he excised and released some adhesions and it helped a lot more. Hopefully your second one will help too.

EndoTheWorld Mon 14-Nov-16 22:45:12

It's being done by the same person as last time - endo specialist. Endo excised last time and will be again. Gynae basically said, we know it comes back so it's about time we did another one.
The spread was minimal last time, it's not a complete mess in there, but it is massively painful.

welshweasel Mon 14-Nov-16 22:51:46

You need to find a more sympathetic GP. Good pain management for chronic pain in bread and butter GP stuff, not what A&E is for. To be honest though, I'd be wary of a specialist who told me that they were expecting the endo to return and that multiple surgeries were normal. A skilled surgeon and a wide excision should result in very low recurrence rates.

UnGoogleable Mon 14-Nov-16 22:57:07

That's the thing with Endo - you can have loads and hardly any pain, or you can have a little bit and be in agony - there's just no way of telling. Mine was better once the cyst was cut out, but everyone is different.

Do try the HealthUnlocked forum (as well as here!) for others who know exactly what you're going through. They might be able to offer some more pain relief tips. Mine was manageable with Ibuprofen - sorry to hear you're suffering so much

EndoTheWorld Tue 15-Nov-16 02:56:07

Is it chronic pain, welsh? Surely more like intense but sporadic pain? Or would that still be defined as chronic? The problem is the GPs push contraceptive pills/mirena coil and mefanaemic acid/tranexamic acid and don't want to offer anything else. Especially anything opiate-y. Apprently the rules changed recently...? Not sure if local or national, but they have clamped down on prescribing strong stuff.

Also I thought endo did recurr. confused. I thought the point of taking hormones was that it seemd to slow down the regrowth...

welshweasel Tue 15-Nov-16 07:08:59

Any pain that lasts more than a couple of weeks is chronic pain, even if it gmcomes and goes. There haven't been any rule changes, your GP is just being difficult. There is more and more evidence now that endo is soemthing that you are born with and once it's properly excised it doesn't return. Certainly there are many women who have undergone a thorough and extensive excision who are endo free a decade later. If endo 'recurs' it's usually because it was missed due to poor technique or knowledge the first time. Honestly, there is help out there, you just need to see the right people. And don't accept being fobbed off with hormonal treatments.

EndoTheWorld Tue 15-Nov-16 14:31:05

here is more and more evidence now that endo is soemthing that you are born with and once it's properly excised it doesn't return.
shock

Have you got any links for that info?

Apparently the hospital I went to/am going to is a nationally recognised endo centre! So I'm not really sure what else I can do. Do you know a lot about this? - if I PM'd you the name of the surgeon would it mean anything? Sorry I'm just struggling to work out what's not adding up/what I can do.

Basically, the gynae said we'll book you in for another lap, I was surprised and re-iterated the pain hadn't changed since the last one (hadn't got worse), and he said something like: but you're in pain, that isn't good, we need to look and as we know it recurrs it's time we had another look.

I think the rule changes might be local. I live in a "deprived area" so that may be something to do with it. I also know someone who got addicted to codeine being handed out like smarties from that surgery so it's possible it's the surgery that have got into trouble and are being monitored...

I don't know what else to do re. pain relief - it's literally at the stage where I'd have to do a sit-in protest and refuse to leave the surgery, but I don't fancy that cos I got arrested last time (years ago)...

welshweasel Tue 15-Nov-16 14:47:44

Happy for you to PM me. I had some terrible treatment but have been lucky enough to have subsequently been operated on by people who actually know what they are doing!

BusStopBetty Tue 15-Nov-16 19:25:32

Can you get a referrral to a pain clinic?

EndoTheWorld Tue 15-Nov-16 20:50:37

I'm going to ask the GP about that, Betty. The difficulty is that GP attitudes seems to vary between purposely difficult (will not consider other meds than the standard list, treat me as making a fuss about nothing), or don't see why I need something so I am not incapacitated by pain, as I am longterm unemployed so don't worry about that now deary <pat on head, writes me off>. It's the fact that I need to get this under control in order to live life that is getting to me the most. At the moment I can work it into my routine a bit - nothing dire happens if I'm out of action for a day or two. Although obviosuly not being in horrendous pain would be nice too...
I am hoping the GP will refer me to a pain management clinic, hopefully referring the problem me on will be palatable to them!

Weirdly, the diclofenac seems to be very good for most of the pain, but the intense window of pain (3-6 hrs) it doesn't appear to touch.

BusStopBetty Tue 15-Nov-16 21:16:28

If the GP is an arse could the consultant refer you?

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