So, so, so much pain. Need advice/support - Endometriosis UK

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So, so, so much pain. Need advice/support

_Tamsin_ profile image

Hi everyone, hope you are all doing okay. I have had a very painful week, ended up in A&E in the early hours of Friday morning. I phoned 111 in agony and they phoned an ambulance for me. I had gas and air in the ambulance, and they gave me morphine in hospital. I have never been in so much pain in my life. Later on I had Tramadol. I barely remember any of it I was so out of it. They gave me the usual checks (blood test, urine test) and tried to get my pain under control. I am currently undiagnosed but doctors suspect I have endometriosis. One of the doctors wrote a letter to my GP, pushing him to refer me to a gynecologist which is great, except I am gutted that they discharged me without giving me any help to manage my pain. Before he discharged me, one doctor said "Just take regular painkillers while you wait for you referral" and ignored me when I told him that I already take regular codeine, paracetemol and ibuprofen and that isn't enough! Once he left, I cried in frustration. I am gutted that they are not doing anything to help me manage this unbearable pain. I am starting to recover now, but finding it difficult to eat and I am exhausted. Does anyone have any pain management advice? I am really struggling :( Thank you for listening and sorry for the essay! X

12 Replies

It is not up to the hospital A&E to manage your longer term pain till you get to see the Consultant. They are only there to patch you up, relieve the suffering you are in when you arrived and send you home.

It is now up to your GP. With an intermediate diagnosis of suspected endo, that ought to be enough to get your GP to upgrade your painkillers to stronger prescription stength ones - even if it is just for the time you are waiting to get to see the consultant, insist the GP addresses your pain levels till you find out more. You should be using a variety of pain relief to avoid any pain killer addictions, so by all means use over the counter ones for the times you can manage on those - but have the back up of stronger stuff for when you need it. Most of us use a variety depending on the severity of pain levels. And if you do move up to prescription strength I recommend getting a bottle of lactulose and/or some other laxatives - as they do tend to cause constipation which you can do without, so having a 1st aid cabinet with laxatives (liquids, tablets and suppositories) is certainly worth having on standby too...just in case.

So so sorry to hear what a horrid time you have had.It makes me mad to hear that so many are fobbed off with unsatisfactory pain relief,once discharged from hospital.I am sure many will empathise.I was the same in mid Dec - 999 to hospital with gas and air,then pethidene( am allergic morphine) then scanned( burst cyst which had burst 2 weeks back)ans sent home next day with antibiotics for UTI and tramadol which does nothing and is what I take regularly at home.Doctors seem soo worried that we will get addicted to eg morphine,opiates that they are reluctant to give unless you scream!!This amount of pain is very like a burst cyst and if it is the kind that reabsorbs( mines seem to be follicular cysts which instead of bursting as normal every month at ovulation,grow and then burst but as they do not have any foreign materials inside eg pus,are reabsorbed so do not show on an ultrasound unless they have just popped.

Do do persevere - first ask your Gp for better pain control.Codeine is pretty useless for endo pain.There are lots of options from anti inflammatories,to stronger tablets like Tramadol.Dihydrocodeine.Paracetamol can also be taken at same time.If you don't persevere your Gp will assume you can manage with codeine.You don't say if you have periods and if this bad spell was when you were having period?

I am a veteran endo lady,having suffered since 14yrs and only diagnosed at 29yrs,so have been through the whole process and now stage 4 endo and possible adenomyosis.

There is lots of great info on here -type in pain relief/control in search bit for lots options.I am personally glued to my hot water bottles,front and back as well as 8 Dihydrocodeine,8 paracetamol daily.Occassionally if I ha

ve had a huge flare Gp has given me some pethidene,but it is strictly limited and he tells me not to take unless I cant cope with pain and would otherwise go A and E.

Other option,which may make them take notice is to call ambulance/go A and E every time the pain is unbearable.We all have different pain threshholds,but when I am unable to breathe/inflate my stomach to breathe and am shaking,sweating and feeling nauseous( I very very rarely vomit) that is my limit.

Hopefully you will get a gynae appointment soon,but in the meantime don't suffer ,when there are pain relief options available.If they try to fob you off as they did me,then make sure you tell them the amount of pain you are in.If you do get a diagnsos there are also plenty hormonal options-pill,depo provera,Gnrh,mirena coil -all of which stop/limit periods and can give excellent pain relief.

Take care and sending you a big hug.This is a great forum and lots will be able to share.

Hi ya, so sorry to hear your in soo much pain x if I were you I would give the GP a try for stronger and if he says he can't give you that then ask for an emergency referral to gynae at your local hospital then because you'll need to sit in the surgery and wait until he does something you shouldn't be left in that much pain. Are you on anti inflamatory (ibuprofen, naproxen from gp)medications because they are good along with co-codamol. I hope this helps, to be honest I've been in this position myself and its in humane to be left in pain like that. if it is endometriosis the opiate medications tend to cause constipation which makes it worse, hormones or surgery are really the only things to take the problem away when the pain is that bad. Wish you well

I would have a look at that website and if you haven't done so already, seriously think about diet as that plays a huge part in pain levels etc. I have stage 3/3 extensive endo and have refused all hormone/ tablets since my lap (that option is brilliant for a lot of ladies but just not for me). I control my symptoms by diet and exercise. Believe me that I was in huge amounts of pain to start off with and it really did cut it down. Also really heed what Impatier has said about stocking your medicine cabinet if you are taking a lot of pain killers. When I do have to take codeine a few days a month I ensure that I eat all the fruit and vegetables I can eat and I have a juicer too (bought when I came out of hospital) for the times I have to take codeine. This helped a massive amount and I don't have to take any laxatives at all. A juice a fresh pineapple and that gets everything sorted within the hour. The last endo support meeting (might be worth you going along to your local one, they are all listed on the endo uk website) had the endo diet as the topic. All the women who attended either followed it all the way or some variation of it. I found that when I cut out all meat last year my periods dramatically changed for the better and the same with dairy. I hope you get referred soon and on the way to managing this awful disease. Xx

Catness profile image
Catness in reply to Catness

Sorry that should say stage 3/4 endo x

Thanks for your responses everyone, I really appreciate the advice! This is all quite new to me so it is very good to hear from others who have experienced this as well. I am definitely going to discuss pain with the doctor and see if he can give me something else to help me cope with it while I wait for the referral. I am already on the contraceptive patch, and I have regular periods but I didn't have my period when I went to A&E. It always seems to be at it's worse during the two weeks following my period. X

I think you really need to keep on at your G.P to push your gynae appointment forward and remind the G.P you have already been to A&E once, good luck

Have you not tried getting better pain meds from your GP? I have a repeat prescription for

Oramorph (liquid morphine)

Morphine patches



Took a while to get the correct combo but its working a treat xx

I love amitriptyline. Great for nerve pain. If dat doesn't work dere are alternatives.

Acupuncture is also very good.

Regular paracetamol should be taken every 6 hours regardless of pain level then topped up with opiates and/or anti inflammatorys as needed.

Also finding the right pill will greatly help.I've only managed a couple of months without my pill before the pain became excruciating.

Find yourself a great pharmacist to discuss this in detail and if your gp is not very understanding find a new one. A great gp is worth his or her weight in gold. Don't be afraid to "shop around"

Good luck

Thank you everyone :) I have booked a double appt for Thursday, so I am going to sort out a referral and discuss pain relief options. Classiebird, coincidently I am already on amitriptyline (have been taking it for years) for migraine prevention, I used to get dizziness which turned out to be due to migraines. What sort of dose helps with pain? X

daffodil profile image
daffodil in reply to _Tamsin_

I used to take amitriptyline for ME pain,at a low dose.I took at night and it also helped me drop off to sleep which was an added bonus.Maybe your Gp may suggest a slightly increased dose?

I hate going to a+e I always have pain relief then get sent home the thing is with a+e when you go in there with chronic pain there's very little they can do as its not an emergency or its not something they would deal with as they would an acute pain and it should be dealt why by the relevant consultants eg gynea , urology which ever it requires so many of us ladies get no where in a+e often being sent away or not taken seriously unless our bloods show something . Just keep,going to your gp and ask for a referral if he says no keep going back xx

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