dr will not give me any pain killers until I attend face to face appointment. I have just started a new job and I’m scared of missing work.
I haven’t slept in 2 weeks the pain is numbing now I cry myself to sleep I vomit constantly I feel Dizzy and faint. My full pelvic area is in agony I feel so Dismissed by the GPs. When the pain is reduced all I do is sleep. My mental health is in shattered I honestly don’t want to be here anymore I’m just in constant pain.
I can’t eat or sleep or function I’m dragging myself into work because I’ve already lost a job due to being sick cause of endo.
please help I’m in agony I’m crying so muhc and vomiting will they manage to help me. I’ve been in pain everyday for the last 2 weeks
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Littlebug77
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If that was me I would personally attend A&E. Also if you haven’t had a scan/ review for a while then it would be a good idea to have one. Hope you feel better soon x
Definitely attend A+E if you are like that, no-one deserves to be in that much pain or discomfort. I know its easy to say, but you should not be dismissed from a job due to sickness at all, especially a chronic diagnosed illness.
In future if you need to miss work for a medical appointment, you miss work. It does your health - both mental and physical - no good for you not to seek the healthcare you need.
Going to A and E will be a waste of time. You will wait there 12-15 hours then see a doctor with zero knowledge about endoand they will just send you home. It's totally normal that your GP won't give you prescription painkillers without seeing you. Just phone up the GP say it is an emergency and you need to see a doctor today urgently. Ask the doctor for some serious pain killers the only thing that helped me was naproxen. Also explain to the doc you need an urgent refferel to a expert gynae. If you want to see someone quickly you will need to go privately. I went to a top place in Lodon they saw me within the week, I had scan results the day after and they talked me through what was wrong and what could be done. Something else that might really help until you can get treatment is the progesterone only pill it stops your periods completely after about a month which really really makes the pain more manageable. All you will get at A and E is a massive very stressful wait and no help. I tried it a few times when my endo was super bad and nothing gets done.
Not necessarily true some hospitals do have an endometriosis specialist there and if she makes it known that what she’s got they should get a specialist to come and help her?
Hi Lollie Rose, just going on experience. A and E don't employ specialist gynae endo consultants they are for serious accidents and emergencies like heart attacks, strokes etc. You go to A and E for broken legs etc. You can't go to A and E and say I want to see a specialist in my chosen field. They could probably get you a gynae but there is no guarantee they gynae will be a gynae who specialises in endo. I've had severe endo for 30 years and I have never receievd useful help at A and E. I went a few times before my last operation when I was close to suicidal with pain and it really just made things more stressful. Massive wait in a stressful enviroment and no help.
Have you tried going to A and E and have you recieved any help?
I am just trying to give Littlebug some real world advice that which actually help her get the right treatment. I went through years of iether being fobbed off by doctors or taking the wrong path to get help. I know what worked and what didn't.
It is incredibly hard to get a doctor who knows what they are doing with endo. The first one I was reffered to on the NHS carried out the entirely wrong procedure on me and I have had to go back for further ops because of this.I also can't have children because of the wrong choices that were made by a non specialist gynae at the start of my treatment. Just getting a gynaecologist to see you doesn't mean you will get good treatment. Endo is a very serious condition and it's vital to get treatment from someone who knows what they are doing from the start.
Hi iv done that they just said to me and a and e why are u here ,we only treat life threatening conditions or emergency.They will only give u pain relief no referrals.i was in a and e for 8 hours.The other thing u can do is phone up the gynaecologist department and should be an option for endo specialist nurse they can prescribe also I'm from Birmingham under the women's hospital x
You need to speak to GP and explain all this. You can’t really just go to a & e without trying this first but you need to explain the severity of the situation and not be fobbed off. Write a note out first of exactly what you need to say if it helps but make sure you say all the things you have here. You never know it could be more serious. I put off getting help and severely damaged my ovary and fallopian tube on one side by not getting help and it turned out I had a tubo ovarian abscess on the back of stage 4 endo also. Good luck xx
I do I explain everything absolutely everyone because I am young and I’m chronic pain they dismiss me. I’m studying medicine I know how these things work I’m getting pushed to the side. If I tell them I’m suicidal or have a low mood they will not give me any pain killers etc
If you study medicine then you will know the importance of attending for them to treat you correctly. If the pain is that bad then you have to attend to make sure there isn’t something more going on and also for your mental health. It would be irresponsible for them to give you painkillers without seeing you especially if your mental health is not good
One day I woke up absolutely fine, like any other day. All of a sudden I suffered serve lower abdominal pain and plevis.I was take to A and E by my partner, as the ambulance serivce refused to sent me ambulance, according to them it was an emergency, was told to wait four hours or my partner had to take me, so he took me.
Once I arrived in A and E my partner checked me in, he told the A and E nurse what was wrong told him that we had to wait, at this point I couldn't take anymore the pain I was in it was unbearable.
I walked over to the A and E nurse and explained my situation, she could see I was in so much pain, and told her I needed to see a doctor there and then, she told me to go to toilet to do a urine sample.
Once I came out I was called by a doctor he examined me, kidney stones or gallbladder stones.
Waited another hour or so to have a CT scan, had CT scan got told to go to another dept was given pain relief by drip.
Another hour or so got my results they told me I had a Cyst sitting on my left ovary, told I would get urgent referral to see gynecologist next dsy.
So that day got discharged from the A and E doctor told me if in pain again to return.
Next day heared nothing, so I called the gynecologist dept, told them the situation, they told me they had no record of me been urgently referred to gynecology.
So I made a complaint to PALS the next day I got a phone call from gynecology dept to come in the next day to have a scan.
I had a scan got told same thing cyst on ovary about 8cm.
Got booked in to see a gynecologist had blood test my c125 where sky high and told me needed to have surgery they thought it was a tumor on my ovary, got told removal of fallopian tube and ovary,at this point I had no confidence in these people, one minute it one thing and then another.
After all the ache, pain and fights with the NHS I had my laparscorpy surgery in November I was diagnosed with endometriosis one the left cyst had reputed and had another endometriosis on my rectovaginal.
The point to this story is if you can go privatedo it, that you have 3 choices Go to A nanda E fight them due to your pain and get see to snd have tests.
2. Fight your GP to refer you to see a gynecologist or a endometriosis specialist
3. Go private if you have the money.
If I had the money I wouldn't have gone private the fights, pain and anxiety I went through to get down to what was wrong with me.
A&E is an emergency service. It's unlikely that they will be able to treat you and will only give you short term pain relief. You must go to your GP. They can do all the necessary referrals and tests. I understand that you are afraid of losing your job but you are more likely to lose it it being ill than you are getting treated. A good employer wants a health workforce. If they have occupational health ,talk to them then they will understand and not penalise you.
As a patient it is your right to recieve treatment. I would make a complaint to surgery manager..go to a and e, however they dont give meds out anymore so they may have to admit you and monitor you until your pain is under control ,organise a plan of treatment and then make your dr aware..
Pain is awful and grim - as is the gut gnawing worry about losing your new job, but you can’t function in your job well if your in such a state. Your GP has guidelines they have to fulfil around prescribing too and it sounds as if this is getting worked into the mix. They may of course be be underestimating the severity of the pain which oft the case with women ( noted officially in recent report but we could have told them that years ago…) which also isn’t helping your situation. So how to deal with it. A &E isn’t really the best place for this either, (in the past it wasn’t but they had more capacity than they do now so it’s more short shrift than before and gynaecology is stuffed too )as you’re not going to get the long term care sorted and possibly end up being passed from pillar to post…🙃🙃🙃. Tackling this is a long term issue even when faced with this awful pain and getting them to take this seriously means you have to have strategies in place ( ghastly ) . I only got anywhere by treating myself almost as a client I was professionally standing up for ! Self advocacy is the weapon of choice, admittedly among the dreadful pain it’s a hard taskmaster .
Managing the pain- trying over the counter pain relief with the help of a pharmacist they often have appointments available too, until you can see GP , get a tens to try if you haven’t so far often it’s really good at reducing it to a manageable level for the most part. Does your surgery have extended hours either early or late where you can book an appt to see a GP ? Check whether the GP has actual a specialist interest in womens’s health ( not all are trained ) and stick out for the one that is. Book time out from work …perhaps offer to make time up either early or late (?) so it’s an exchange if you feel you can manage that . Dealing with the real fear around the job is part of the solution here. So maximising effectiveness in your side of the communication and having a record of it is really important in getting proper help. The right people have to hear the message to get through the tape. Even then it can be a battle. The GP switchboard hears all manner of stuff and aren’t always going to be empathetic or effective in getting the message around your situation passed on .
In the meantime diarise what you’ve been going through focussing on dates, symptoms, locations, bowel, cycle laid out for GP appt, underline you’ve already lost a job with the poor management of the condition. Endo UK site here has a symptom diary. Lastly if you’ve a male friend, Dad or male relative who is able to turn up to the GP with you and assert calmly this needs to be heeded and properly addressed in the appt you ought to find the response more positive. We shouldn’t have to do the last, but sadly yes it does make a massive difference. I’ve found a silent male has more effect on care received than a well reasoned female support 😞.
Don’t just ask the GP for painkillers but for an investigatory plan. Pain relief ask for the protocols around how to use them to be most effective- often if it’s not followed the relief doesn’t work well. Ask for specialist scan to look at deep endo, adenomyosis etc , appropriate referrals to endo specialist & gynae, bowel , specialist pelvic physio and ask if there is anything further they suggest they investigate in addition ? GP’s are sometimes hard pressed to know what to offer in appts especially when faced with ongoing unmanageable pain and can panic. They want to help that’s why they are there, but are hemmed in a limited system that they don’t always know the way around to get each patient the best care. They can get defensive and difficult if they feel they are failing in that for a patient ( shouldn’t but they are human ). Laying out what you need from them is helpful and they can feel relieved that together you can create a plan for your care. It helps that effort is directed and a situation understood. It makes them feel you are willing to help them tick their boxes - I’ve often discovered the limitations of what they can offer, versus what they really think is needed and that means I can work on the missing link to enable things to happen. They can suddenly be much more on board whereas before tough and awkward nuts to crack.
Make a time for a follow up appt with their guidance ( note their response and advice post appt for your records ). All this means they can gather the information they need to treat this more seriously. If they are still unhelpful ( yes, seriously so awful ) go to the local advisory board, consider changing GP and ask around . Getting a care partnership when you’ve a long term condition is crucial especially one where they have limited care options that are for the most part over subscribed too with huge waiting lists.
If you can afford some of the scans or someone who can help you here to jump start the queues that can be really useful as the lists are unbelievably long and that doesn’t help with your pain. They may also have the advantage of being able to offer more flexibility around time of appts so work isn’t challenged with time out. Hopefully in the midst of all this you’ll have a care partnership that means you’ll not have to encounter your current situation again but something much more solid. It only takes one difficult or lovely person in the chain to turn a situation round but if you are well armed with evidence it’s harder for arguments to deny treatment to be sustainable. Hope you feel so much better very soon.
Yes go to a&e, I spent 25 years being fobbed off with ‘it’s ibs’ it’s your diet, just heavy periods etc etc, when you’re vomiting with pain this is not ok. I finally got a proper diagnosis when I went to a&e , I’ve had surgery, I still have some issues but at least I know what everything is and how to manage it and when to go into hospital should I need to. Go to A&E and I hope you get sorted out asap, living with that much pain is not acceptable. X
One thing that may help you is if you go go A&E or even your GPs with a flatmate or friend NOT a family member/partner. Choose someone who is happy to speak up for you, and tell them what signs and symptoms you have before you go to the doctor.
Though be aware some doctors - regardless of whether they are hospital doctor or GP, NHS or private - are difficult about patients being accompanied by someone.
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