Go to hospital or wait 2 weeks for lap? - Endometriosis UK

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Go to hospital or wait 2 weeks for lap?

Kate345 profile image
40 Replies

I’m not right, in agony :( don’t know if I should go to A&E or sit tight for my lap my family keep telling me to wait but I’m in pain!!!

I’ve been to A&E so many times since July and I feel they think I’m a liability that I always turn up and even been told ‘I think this is a GP issue’ by one nurse who was horrendous to me.. but if your in pain.. where do you go and what do you do? I think they think I’m making it all up which is even more frustrating honestly they treat me horrendous and it makes me feel mental and embarrassed . Last time I went she said about I think it’s a GP issue I ended up walking out in tears because I was made to feel like an idiot and I never saw a doctor as I just left crying my eyes out

There’s people turning up to A&E with coughs and colds and I’m there in actual pain and it gets ignored. :(

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Kate345
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40 Replies
Leigh37 profile image
Leigh37

Hospitals are there for people who are in pain and suffering. I would suggest going to your nearest a and e and wait to be seen. They maybe able to help you control your pain better whilst you wait for your lap and could do certain tests such as a tv scan swab's and urine sample. Being in continuous pain is just awful I really do know how you feel. Sending hugs xx

Kate345 profile image
Kate345 in reply to Leigh37

I know but because I’ve been so many times they act like I’m a liar and I’m made to feel stupid by the staff :(

I haven’t eaten hardly anything in a week and I just don’t know what to do anymore :(

Leigh37 profile image
Leigh37 in reply to Kate345

I myself have been there 3 times in just as many months so i understand how you feel. I had to call an ambulance twice as the pain was so bad. I ve even begun to recognise some of the staff but they were able to help get my pain under control and reassure me although the pain was above and beyond anything I've experienced before I wasn't dying which is how it felt xx

Kate345 profile image
Kate345 in reply to Leigh37

I recognise the staff, it’s embarrassing:(

I’ve had an ambulance out once from a panic attack :(

I just feel they think I’m stupid :(

Kate345 profile image
Kate345 in reply to Leigh37

Last time I went was last week, ended up leaving in tears due to the nurse been rude and making me feel idiotic.

I wouldn’t just turn up for the fun of it :( it’s a horrible place I’d rather not sit in A&E

Kate345 profile image
Kate345 in reply to Leigh37

I honestly think the staff think oh god she’s here again that’s how I’m made to feel :(

Kate345 profile image
Kate345 in reply to Leigh37

I understand I’ve been a hell of a lot but even 111 kept telling me to either go to A&E or see a out of hrs drs so I don’t have a clue what I’m suppose to do :(

Would a friend or a close family member go with you and insist on staying with you when you see the Doctor? Have you tried early morning? Aren't there different staff working different shifts so Hopefully you won't have to see the same Nurse again? Try not to worry about what they think. You wouldn't be there if you didn't need to be. Would be helpful I think if you had someone with you, though.

Would a GP help with your pain if you really can't face A & E?

x🐥

Kate345 profile image
Kate345 in reply to Mary-intussuception

Last few times I’ve been on my own and drove there which I guess looks ‘weird’ but if I’m with someone else I might get some joy if they say something.

Leigh37 profile image
Leigh37

Only you can decide. A and E are there to help as is your Dr's surgery and to be frank so what if the medical staff and the hospitsl do recognise you ? Does it matter.... if you are in pain that needs to be managed and that's what they are there for xx

If 111 told you to go to A&E - then just mention that if you get any unprofessional comments from a nurse.

You shouldn't have to defend yourself I know. Other alternative is to make a complaint. However we just want the medical care we need don't we and not hang around in extreme pain making complaints.

You could ask to see the ward/A &E manager and just ask for her help.

Kate345 profile image
Kate345 in reply to Mary-intussuception

Honestly the way she spoke to me was shocking like she had ago at me for turning up... like really nasty. It was awful I mentioned about my slight raised CA125 and she just went WHAt DOes that mean?! This is a GP issue is it not?! I was shocked by the way I was spoken to.

It’s funny as I watched that ambulance program that’s on TV and some woman rings every night and they actual send an ambulance out for her for no reason.. I’m going to hospital due to pain and they act like I’m mental, it’s reslly not fair. If they think I’m mental then they should be sending me in the direction of mental health and not just leaving me

Let's hope she's off duty. If you get the opportunity you could mention that to the manager/sister. Hopefully you will get some help though - from an understanding doctor.

All the best.

xx

It is quite shocking though, to hear that a qualified Nurse does not know why they do a CA125 blood test.

I am not medically qualified but as far as I am aware it is not conclusive as a test on its own. Slightly elevated, I think , could mean different things or even be insignificant. It would lead on to other investigations wouldn't it , in a process of elimination?

xx

Kate345 profile image
Kate345 in reply to Mary-intussuception

I did the test just after my period was finishing.

I’ve had a CT showed some fluid around my left ovary. Had a abdominal ultrasound and the fluid had gone ovaries looked normal and same with the uterus

So now I’m just waiting for the laparoscopy in pain and worry

Mary-intussuception profile image
Mary-intussuception in reply to Kate345

Hi again Kate.

Please try not to worry. Now, I know that is much easier said than done. Slightly raised CA125, I have heard, can be caused by different things. Stress and worry can intensify your pain which is already very bad.

Are you going to A&E then?

I had something on my ovary once and was admitted. (Many years ago). They thought it might be a small cyst. Fluid on ovary showed up on Abdo ultrasound. The pain went in hospital and the next Ultrasound scan showed that whatever it was had gone, no sign of the fluid. They said that whether it was a small cyst that had drained itself or an infection that had cleared up they weren't sure but it had self resolved and I was now pain free so they let me go home. As I said that was a long time ago though.

What I am wondering is - has your Gynaey sent you for a Transvaginal/Internal Ultrasound scan yet?

I didn't have one till a few years ago and it showed I have a fibroid outside of the womb (above it pushing down into it). Now, I always thought I had a fibroid. But they kept saying no fibroids. This never showed up on the regular abdo Ultrasound.

Hope you get help with that pain soon. Whether in A&E, from GP, or Out-of-hours GP.

If you go to A&E, have a think about what you'll say first. Maybe an idea to just tell triage nurse about the pain and not go into other details. When with doctor -then you could just answer his/her questions. Could you rate the pain from 1 to 10? That is with 1 being moderate pain and 10 being the worst ever? Where on the scale is it now?

x

3caramel7 profile image
3caramel7

I don't know what your relationship is like with your GP but can you not ring your GP, tell him/her that you are desperately in pain? That you have been to A + E several times. And see whether they can get hold of your Consultant and move the date forward of your lap?

Kate345 profile image
Kate345 in reply to 3caramel7

My gp rang me last night, I explained everything. He prescribed me diazapam for my anxiety.

My lap is through spire.. not nhs and this is the quickest that spire could do :(

Mary-intussuception profile image
Mary-intussuception in reply to Kate345

Why can't you have it sooner on NHS?

Do you have NHS Gynaecologist

Kate345 profile image
Kate345 in reply to Mary-intussuception

No just private

Kate345 profile image
Kate345 in reply to Mary-intussuception

Waiting time on the nhs is like 3 months for a lap

Mary-intussuception profile image
Mary-intussuception in reply to Kate345

If you're in this pain isn't there a rapid access clinic ?

Kate345 profile image
Kate345 in reply to Mary-intussuception

What’s that?

Kate345 profile image
Kate345 in reply to Mary-intussuception

Only for chest issues

Mary-intussuception profile image
Mary-intussuception in reply to Kate345

About the Diazepam if you are using it or considering trying it : I, personally, would only take it for 2 consecutive nights. It loses effect after that. It becomes addictive after 7 days. It may effect your ability to drive etc.

So once or twice a week might help you catch up on sleep.

You really need a GP who will help you with your pain.

Have you ever phoned the NHS Gynaecologist's secretary? Told her how severe the pain is and asked her advice?

Will you have a Transvaginal Ultrasound and a Hysteroscopy before the Lap?

If you still haven't been to A&E then I would try Out-of-hours GP. You've tried Diazepam last night, it's not taking your pain away. So if still in extreme pain surely your choice is Out-of-hours GP or A&E. Unless you prefer to call 111 again first.

amelialloyd profile image
amelialloyd

Hi Kate

I am deeply sorry you are suffering. Unfortunately I can relate to your experience in a&e.

A couple of years ago I went to a&e in extreme agony and was told 'it's just a period, you've probably got a low pain threshold' and to 'stop being so pathetic'. They didn't have a right to say that to me then, and the nurse certainly shouldn't have said that to you now. Only you know how bad your pain really is.

That being said, if you are not able to get your pain to a manageable level at home then you should go to a&e. Every day the staff in a&e help people to get extreme pain under control. Just because the pain is caused by a condition that is often misunderstood doesn't mean you're not entitled to the basic right not to suffer. If you feel that the pain is unbearable then go to a&e and ask them to help you minimise the pain.

Between now and the laparoscopy it might be a good idea to find a GP that you can trust to make a pain management plan. Different drugs work for different people and it took me a bit of trial and error before I've been able to find a bit of relief.

If you ever want to talk please feel free to message.

Sending lots of love,

Amelia

cmbxm profile image
cmbxm

A&E are useless! Like you I got to a point where I knew the doctors! One incredibly rude one had the nerve to tell me I had food poisoning and 'feminine troubles' nothing else and sent me home with two paracetamol, the cheek!! Luckily last time I went I had an incredibly bored doctor who was fascinated by endo and was fighting for the on-call Gynae surgeon to do something there and then but the on-call gynae just told him to drug me up and send me home as I had a surgery date! If you do go I'd recommend going between 4&5am when it's really quiet and for your sake I hope you get a doctor that actually gives one! And if you keep encountering this rude nurse refuse treatment from her and ask to see another! You have a right to choose as a patient if she makes you feel intimated and like you aren't receiving proper care! If you ever need someone to talk to without judgement pop us a message! No one deserves to feel like you are because they have a condition they have no control over xx

Kate345 profile image
Kate345 in reply to cmbxm

I’ve stated to realise patterns with timings if I go on an evening or even on a day it’s no good your waiting hours, your right is best to go at that time then I might actually be seen and respected I feel they were even worse when it was busy for some reason

Hello

I'm so sorry you have been having such a terrible time. I do feel for you - it's horrible to hurt so much and to not get any help when you feel desperate. However, and I'm also sorry to disagree with anyone here, but A&E isn't really the best way to get treatment for your pain if you have a long term medical condition. That isn't what they think they are there for! Sudden pain for an unknown reason then, YES, definitely go to A&E but not if you know what is wrong and it isn't a case that it has suddenly worsened and that you feel your life is in danger. Your GP is, or at least should be, your best bet. I am only writing this in the hope that it saves you the time and trouble you are taking and stops you having to deal with any rude NHS staff (they could at least be nice to you!) that are only making you feel dismissed. Yes, the people answering 111 calls do direct people to A&E because they have to do that if they are in any doubt at all about how life threatening someone's condition is. A&E really aren't there to deal with long term health problems or the resulting pain I'm sorry to say. That isn't what the staff have specialised in and you may even be given the wrong advice as they won't necessarily have the most knowledge about different illnesses if they are non-emergency. The information below has been taken directly from the NHS website regarding A&E and what it is there for:-

An A&E department (also known as emergency department or casualty) deals with genuine life-threatening emergencies, such as:

•loss of consciousness

•acute confused state and fits that are not stopping

•persistent, severe chest pain

•breathing difficulties

•severe bleeding that cannot be stopped

•severe allergic reactions

•severe burns or scalds

Less severe injuries can be treated in urgent care centres or minor injuries units (MIUs). An A&E is not an alternative to a GP appointment. If your GP practice is closed you can call NHS 111, which will direct you to the best local service to treat your injury. Alternatively, you can visit an NHS walk-in centre (WIC), which will also treat minor illnesses without an appointment.

.....

That's the main gist but if you look up 'What do A&E do' there is more information on the NHS website which might be helpful.

You'll see that all of the above is referring to injury or life threatening illness. As I said your GP is the person who should be providing you with the treatment you need, or a referral to the right specialist for the treatment you need. Pain can make us feel desperate to try anything and if it is sudden or suddenly much more severe, or you have any concern for your health then do go to A&E. However, the route to treatment for long term severe pain really is your GP and if you aren't getting anywhere with them then try a different GP at the practice or you can transfer to another surgery.

I do hope that no-one is offended by this. I just feel that it is more helpful to be given information even if isn't what you wanted to hear. At least it explains why help isn't being given to you rather than keep on going only to be treated unkindly and dismissed and made to feel very distressed. That's not going to help you at all.

I do wish you the very best.

Kate345 profile image
Kate345 in reply to

I don’t not disagree with you, the only times I’ve been going IS when I’ve been in agony and pain that no pain killers are helping, they’ve even told me well oh we can’t do anything in out of hours. The issue Is 111 and out of hours tell me to go to A&E then A&E say oh why are you here. It’s a difficult one

Kate345 profile image
Kate345 in reply to

I think the majority of people I’ve seen in A&E never have the above issues. If your in agonising stomach cramps they always say go to A&E as it could be your appendix.

I’ve been given diazapam to calm me down whilst I wait for my lap - 12 days to go

in reply to Kate345

Ah, yes, I do understand what you are saying and, also, I feel for you during your wait. I've had that wait so can genuinely sympathise. No, it's not easy to diagnose someone by phone with severe abdominal pain. I suppose, perhaps, some of the issues here are:

a) 111- well, sadly, it's not perfect - be impossible to be. Certainly there's not a lot that they can do about severe pain in itself bar assume the worst and advise A&E.

b) does the person have a long term medical condition that does explain the pain so it's unlikely to be appendicitis? Of course you have to go with better safe than sorry I know. I'd probably end up with appendicitis and sit around thinking 'nah, it's just the same thing getting worse for some reason, best to ignore it' Not a better way to think at all!

c) Finally maybe - doctors managing expectations? We don't think we should be in pain and certainly not severe pain. The medical profession thinks differently but don't say so. They know people are going to be in pain because of their medical condition and know that the patient is, to some extent, just going to have to lump it and cope. They rarely are that blunt with patients but, lucky me, mine was. My doctor was upfront and said some painkillers just don't cut it and will only take it from agony to bearable and you're unlikely to be given the ones that do cut it as they are usually reserved for patients with cancer. That was my GPs answer. Not pleasant but I think it was helpful... sort of.

Been to A&E 3 times in total. After being injured in a 'run away lorry hitting my car' accident and by coming in by ambulance I bypassed the waiting room so perhaps I saw less of the walking wounded (for want of a better phrase) and more of the type on the list given by the NHS eg child with seizures, man who couldn't stop vomiting, patient with chest pain... Then with my husband when he chopped off the tops of two fingers (don't ask!) I drove him to an Urgent Care Centre - the nearest A&E being too far away and we were rushed passed everyone on arrival due to the amount of blood. Dramatic way to get treatment! Another time with my husband when he appeared to have a severe allergic reaction and again we bypassed everyone. I think that the illnesses/injuries on the list probably jump the queue - which I suppose does at least make the NHS consistent. Incidentally, my husband was wrongly diagnosed by A&E staff as that is what they expected it to be, an allergic reaction. The downside to being diagnosed by people who are trained to think the way that they are in A&E. Eventually, discovered he had another condition altogether that required specialist attention that we finally got when referred by a GP.

Good grief! Sorry - I do rattle on. Could win Gold in waffling!

X

Dee11 profile image
Dee11

I don’t want to sound negative but in all honesty, I don’t think A+E will do much for you in the long run. They might give you something while you’re there to help with the pain, but from what I’ve been told by Doctors there, they don’t send any strong painkillers home with you and instead tell you to see your GP for daily pain management. They wouldn’t bring your laparoscopy forward any either, especially with it only being a couple weeks away. By the sounds of it, you’ve had some rough experiences at A+E already, so it’s really up to you whether you can face going up again knowing that very little can or will be done.

I went up two weeks ago as my pain had changed drastically over night (along with some rectal bleeding) and I was unable to even sit up in my bed on my own and needed help just to do that. Had a phone consultation with my GP that morning who advised me to go to A+E. They kept me in for two nights so they could give me morphine but because of how busy it was, they sent me home while I waited for an appt to come through to see a gynae, as they said they wouldn’t do anything else for me at that stage if I had stayed in anyway, unless it was potentially life threatening.

I do think you should consider putting a complaint in though. No one deserves to go to A+E asking for help and be spoken to that way. It’s shocking that she thinks that’s acceptable, and shouldn’t be allowed to continue to speak to patients like that.

Obviously it’s your body and really it’s your judgement call on what you decide to do. I know it’s tough x

Kate345 profile image
Kate345 in reply to Dee11

I think your rest best sticking out for 12 days until my lap which I.S private at spire. My gyno was priviate too if I hadn’t gone priviate then nothing would have been done

Kate345 profile image
Kate345 in reply to Dee11

I’m defiantly going to complain 100 percent I didn’t realise how bad she spoke to me until I Walked our crying and sat in my car and couldn’t believe it

Dee11 profile image
Dee11 in reply to Kate345

I would definitely complain. It’s not right that she’s speaking to you like that.

Between now and your lap you should go and see your GP as soon as you can. I’m not sure what painkillers you take daily but there may be something they can prescribe just to help you get through the next wee while, or a different combination they can try you on.

You’re right, going private is so much quicker. I’m currently considering it and weighing up finances to see what’s feasible and what isn’t. The NHS is so slow and I really believe they don’t think about how our lives are impacted, it’s just a few words on a file to them.... which I guess I can understand as they need to see so many people, but so frustrating for us when they don’t help quickly! x

Random-heart profile image
Random-heart

I have been in & out of A&E more times than I can count because if severe pain. Sometimes they have kept me in sometimes I have been sent home. Sometimes it's the only way to get the relief you need. I really feel for you. X

Kate345 profile image
Kate345 in reply to Random-heart

It’s so difficult to know what to do when your sat waiting for answers you start to think we’ll do I go because I’m scared and in a lot of pain, do I stay at home? It’s hard to know. My lapascopy is in 8 days now I just have to try and hold on till then but then I also think if I am in pain that’s so bad then I need to take myself off there. It’s difficult

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