Hi everyone after being told I will be having my operation in September to then be told definitely before Christmas to now being told in the new year I am beginning to lose my patience. I am in the worst pain I have ever been it and it only seems to be getting worse. I thought it was due to my prostrap injection being late but I’ve had this over two weeks ago and the pain is still unbearable as well as my mood swings and constant crying. I am 18 years old missing University, work and social events all the time and. I cannot move from my bed I feel like a burden on everyone and cannot stop crying for no reason I feel like I’m going around in circles. I am getting hardly any sleep and the stress from worrying about being behind in uni and losing my job from calling in sick is only making the pain worse. I am constantly contemplating going to A&E to see if they can do anything to help has anybody had experiences going there ? Sorry for the rant needed to get it out! Thanks, hope you’re all well, Courtney x
Does A&E help?: Hi everyone after being... - Endometriosis UK
Does A&E help?
All they’ll do is pump you full of pain relief and tell you to leave, they won’t even acknowledge that you may need other tests done, it’s a waste of time in my opinion, you’ll be better off seeing your GP and getting pain relief and sleeping tablets, I’m also 18 and if I’m being honest, you might be better of deferring uni for a year, especially if you don’t have full confidence in them keeping your operation date and not pushing it back again, sorry that’s not much help but it does get better ❤️ x
I thought that’s all they may do but when I get to the stage of so much pain I’m just like make it go away take me to hospital! I was hoping if I kept going they would have to do the op sooner but I suppose it doesn’t work like that😂 thank you so much for your help! I think I may have to look into deferring a year as I am missing a lot of uni work or doing it from home and it’s not going to be to the best of my ability it’s just going to be to catch the deadline. Thank you so much for your help! 💕
For you guys in uni have you registered as disabled. I just got a letter from gp (got mine from mental health nurse at the time) saying I was going through a long term chronic pelvic pain condition that is undiagnosed and boom... got a laptop, loads of ergonomic stuff (desk and chair etc but couldn't have that until I moved out of uni accom and into normal student rent for obvious reasons), i also get extensions to deadlines easily, can have my exams in a small room due to anxiety etc etc. Just had my lap a week ago so I was also given 2 weeks of notetakers in my lectures to give me ample time to recover and I am now diagnosed. Also got a deadline extended from 29th nov to 11th dec!!) Deffo worth having a look into it and discuss it with your unis disability services.. you honestly get so much help as long as you are honest with how much it affects you. As I am currently struggling to get in to uni even before my lap due to pain and mood swings but all my lecturers know that they have to send me the notes or put up all info on blackboard so I have fair access! (I'm 19 in my second year so trust me on this.. if you are in first year just be grateful you are having your lap this year as second year is hell missing so much!! Ive been truing since i was 10 to get the lap so glad its done now! Honestly I wish you all the best if you need any help or advice don't hesitate to message me. Good luck!! Xx
Also i completely get the whole hypochondriac stuff.. now I have a diagnosis I want to just rub it in everyone's face that I wasn't lying and that all the doctors visits I had weren't me trying to waste there time. Just stick to your guns you will get there in the end. The medical world just doesn't take chronic pelvic pain in females seriously enough and it's crazy. Force it as much as you can and dont give up!
Thanks for understanding after posting this post and everyone’s lovely responses I feel so much better and that I’m not alone we all need to stick together 💕
Thank you so much for your response it was very helpful I didn’t realise they had to do that so I will have to look into it ! At the moment I don’t feel I’m too behind as everything we do is put up onto moodle so I can’t see exactly what they are seeing if I were to go but obviously they talk more about the information and my seminars are very discussion based as I’m doing primary ed I just hope it’s sorted out by the time I need to do placements as there is no way I would be able to deal with this pain there🙈hope you’re sorted soon!💕
Hi Courtney,
Sorry to hear you're having such a hard time. I recently got taken to hospital due to excessive bleeding and excruciating pain. By the time the paramedics got to me and took me in, my bleeding was less severe. As sympathetic as they can be (if you're lucky), after doing blood tests to check I wasn't having an unknown miscarriage, I was just given codeine and advised I should see my gynaecologist consultant within the week.
Unfortunately in A&E they are limited to what they can do. The best advice I can give is to constantly contact your GP and make sure they know how miserable you're feeling, plead with your doctor to chase any referrals or op appts. I'm in the same boat and waiting for my op appt, I've heard adjusting your diet can sometimes help symptoms so whilst I wait I will be testing it out.
I hope you hear soon and you're able to get back to your daily life xxx
Thanks for your response! Oh goodness that sounds horrible I hope you’re okay now!💕I did find changing my diet helped when I first got diagnosed but as it was so strict I didn’t last very long with it especially as I’m in so much pain I just want to eat comfort food and stuff I like (I’ve had a lot of chocolate🙈) but I think even if I just try to change certain parts and not just stop eating everything we aren’t supposed to have may make a change. Thank you so much! Hope you’re well 💕
When I'm not hurled in bed from body pain it's my migraines that attack me, seems endless and I've not been in work for far too long 😟
Oh I'm glad you had a positive experience adjusting your diet. Yea that's the problem, it's very difficult to adjust a lifetimes of eating habits - but if it'll make me feel better I'm all for it. Til I crave all things chocolate and coffee 🙈
I think you have the right thought, and that's what I'm doing, slowly making those substitutions. If we want to make a permanent change, it can sometimes be better to ease ourselves in so we're more likely to stick to it. (There is a book I'm reading which is listed on Endometriosis UK's website, on their "Treatments" PDF).
xxx
The reality is, is that you have a chronic condition not recognised or known and that's within the medical feild itself! Its very demoralising to go to your GP or A + E and people treat you like dirt which in your mind is supposed to be a caring tradition, yet on average, it takes 7 years to get diagnosed and then to top it all off, when they do get it wrong and Endo is found, they don't even have the manners to say sorry, when yesterday they were telling you that it was all in your mind!
I'm not sure what I can say to make you feel better? Its not fair! Yep! You didn't ask for this condition? Your surrrrrrre right there honey! What to do or say? Acceptance. Boring I know. With this condition, sex maybe painful, you might not be able to have children. You also might not be able to work or have the career that you want. You may never finish University. You may also lose friendships and relationships. ( This is worst case scenario)
However many people maintain relationships and get married. Many people also have children. Many people find a good Consultant who is patient and kind and is prepared to try different things out , send you to see a pain Consultant etc etc and its all hunky dory.
What you are going through right now, everybody with a chronic condition goes through every now and again You have every right to be angry and vexated about your life! You are 18. You are supposed to be lying the in the gutter drunk, not lying in bed with a mass of hot water bottles and having yet another cancellation. The situation is simply horrid!!!
My get out card for myself was, was that I was doing everything I could do. So for me it was about reading science and medical papers, looking at alternative methods in terms of pain control, looking at my diet and lifestyle, changing GP and perhaps Consultant. Sitting down with friends and family and explaining what you have and what you need from them( understanding is normally a good start!).
Since I don't know you and what you have done, you may have already done the above already, so I apologise for repeating mantra.
If anything, many of us have been there, we sympathise, the situation is horrid! But I hope you know that we are out here, having gone through exactly what you are going through right now and to know that there are people who have got better, got the right treatment and have gone on to have happy lives. So don't give up.
Take care and big hug.
I just feel like I’m going crazy and that people think I’m a hypochondriac as it’s not that well known. Thank you so much for your pep talk I really needed it it feels like the past month has been absolute hell I’ve never been so bad or close to giving up. I’m normally such a happy and positive person but lately I’ve been completely different but knowing I’m not alone really helps! Thanks everyone for all the love💕
I would keep ringing the consultant’s Secretary and asking if there have been any cancellations and how far up the list I was. You need that op!
Yeah I’ve started to give up on that too as last time I rung the lady was very rude and unhelpful and told me that everyone on her list is in pain and that I’m not the only one and couldn’t understand why I was upset even though I explained that she had been promising my operation at different times. I’ve even got my doctor to email them and explain that I’m constantly at the doctors as I’m not coping and they are still saying that there is nothing they can do😩thanks for your response!💕
Nasty woman.
Can you check whether you have been treated within the nhs time guidelines and see if there’s any recourse for a complaint through PALS if you haven’t been?
My theory is always to make myself difficult so it becomes easier for them to take action than not!
Failing that, is there any possible way you can scrape together the money to go private? Xxx
I would love to be able to but especially being a student and struggling to work it’s just impossible the procedure is about £8,000 I think he said!xx
Yes I think I will have to look into this as I paid to see a consultant privately as I wasn’t getting anywhere with the doctors at the time and was supposed to be put on the waiting list in March but he said he put me on there and back dated it to March as it was July by the time I saw him but they said I have only been in there since July so no wonder it’s taking longer than supposed to! Yeah that’s what I thought the same keep on going to the doctors, phoning that lady and that’s why I thought maybe a&e to help forward the case but maybe it isn’t as easy as that😩thanks for your help!💕
I ended up in A&E a couple of months ago on my GP’s advice and honestly it was the biggest waste of time. They gave me painkillers and sent me home after a day or two because my scan was clear therefore that must mean everything’s fine, right? They promised an urgent appt to see gynae because they missed their own appt while I was in and this never happened either.
I also had other symptoms such as terrible rectal bleeding and feeling like I was going to pass out, so because of that one doctor told me I was having an IBS flare up and that I should go home - luckily he got outvoted by other doctors; I don’t even have IBS 😣.
A&E plaster over the pain since they don’t treat long term illnesses or conditions..... doesn’t help us much but I guess that’s kinda what they’re there for. Bugging the consultants secretary might seem tough now for you, but it’ll help you more than A&E will x
That sounds awful hope you’re better now! I swear most doctors have no idea what it is and just say it’s IBS I had this one doctor that was persistent until I went back with what the private consultant said they can’t just palm us off like this! Thank you very much for your response! A&e is the last place I want to be when I’m in pain so I’m glad I could ask if it’s worth it before venturing out of the house for no reason!💕
Honestly, I’ve never been so annoyed as I was at him! Unfortunately I’m now still waiting to be seen by someone and due to the notes sent over to gynae by A&E they don’t think the notes sound gynae related so they’re not seeing me - A&E really aren’t great for pushing things along. I’m facing a 30 week wait for an initial consultation now.
My GP still recommends going to A&E if I have a really acute pain in case there’s something else also going on which they can catch as it’s happening, so as terrible as it is on a daily basis I would only go back up if I got another day like that, where I quite literally had my parents helping me to sit up in my bed and stand up because I just couldn’t do it at all x
Oh gosh that sounds so frustrating I hope they get it all sorted soon it feels like they couldn’t care less sometimes !That’s what I’ve been like screaming and crying in pain and needing help to move as I feel everything pulling every time I move and at one point it was hurting to breathe! I feel slightly better than I did last night as I’m so drugged up ans have some how managed a small sleep but I am still in absolute agony so I’m yet again missing another day at uni 🙄xx
Hi Courtney,
I’m so sorry to hear you are in such pain and having an awful time.
Well my experience of my local A+E has always been positive. I’m very lucky, they seem to understand about Endo. I’ve had to use them 4 times over the last ten years for endo related things.
My latest admission to A+E was in October, I thought the endometrioma I have on my right ovary had ruptured because I was in so much pain! Turns out it hadn’t ruptured, just a flare up of all the endo.
I was admitted over night to be given some decent pain relief, and for monitoring, they scanned me the following morning just to double check that it hadn’t burst then spoke to me about changing my pain medication. Sorted this out and sent me on my merry way.
Long story short and in answer to your question - if you are feeling so unwell that all you want is for some reprieve from the pain, then if you can, speak to your GP first, they may admit you to hospital to get your pain under control (my GP has done this for me in the past). If your pain becomes that unbearable, say in the middle of the night - then use A+E. Hopefully they’ll do what they should and check that there’s nothing acutely going on, give you some pain relief, and make you feel a little better so you can gather your thoughts together.
Coping with endo does get better I promise you. I used to be floored by it, stuck in bed, missed loads of work/life! Fast forward 17years and although I’m in the middle of a flare up I’m still able to work and do other things - I have a decent pain medication regime, recieving treatment from an endo specialist.
Xx
Thank you so much for your response and telling me that it does get better I’ve been so moody lately thinking what’s the point what kind of a life am I living it just goes to show that I just have to keep on going and get through this stage at the moment! Yeah sometimes that’s all I need pain relief so I can at least get some sleep and calm myself down! Xx
I was told by a consultant that if you have irregular bleeding you have to be seen within 2 weeks in case it’s cancer, he was angry I’d been referred for one thing yet the bleeding as far as he was concerned was far more important, i saw him after 3 months when bleeding every day in between. He had me in for biopsies 15 days later, fitted a coil and did some tests. I’m menopausal never been diagnosed with endo but I’ve always suspected I have it. My rectal bleeding has now stopped and my constant pain on the left stopped until I was given estrogen cream, it’s started up again but I’m not suffering so many hot flushes, they are awful, forget the couple of minutes they are supposed to last, mine are hours long and have caused me to pass out.
If you are bleeding go back to the dr and get an urgent referral.
Luckily enough I am not bleeding, I have been told to constantly take my pill as I found my periods too much and too painful. I am on my 5th month of the prostarp menopause injection as well. Thanks for your response and concern !xx
Courtney I'm so sorry you are going through this it is heart breaking to hear how endo impacts on you. I've also been waiting for my 4th surgery for a while too, like you it was supposed to be in summer but it's now going to be next month.
I've been to A&e several times over the last 8 years, I was actually diagnosed after going to a&e in horrific pain. The docs thought my appendix had ruptured so performed emergency surgery only to discover severe endo. Even then, all they did was stitch me up and send me home as the surgery needed to be performed by a specialist. I wouldn't recommend a&e, you'll be kept waiting for ages only to tell you to go home and rest or see your GP. It's just frustrating!
It might be worth going to your GP and explaining just how difficult life is for you at the moment, she might be able to give you a different painkiller? What do you take now? I take tramadol and have done for years (which does concern me) but it's meant that I can actually function and get out of bed. Apparently infrared lamps can help with inflammation and pain, I've just bought one. (You should only use for 10 minutes a day and direct the light at you stomach and back.) Have you though about Acupunture? I'm having it at the moment and I haven't noticed any real difference but I think that's because endo is really bad at the minute and hoping post surgery it will be effective. I'm sorry there's not more I can suggest to you to help reduce your pain.
Also, if you have been waiting more than 4 months for surgery than you have a right to complain. I did this for my first surety and the NHS offered to pay for it to be done privately but in the end my consultant brought forward my surgery date. If want any help with doing this send me a direct message me.
I know it seems impossible but try to think positively, even if you think about three good things in your life a day (it doesn't matter how small they are!) and remind yourself of them when you're feeling down, it can help!
Big hugs and remember you aren't alone xxx
Thank you so much this is so nice!💕 I feel like I’ve tried a lot of different tablets but most of them didn’t work at the moment I am on 10mg of slow releasing morphine twice a day with 8 ibuprofen and paracetamol throughout the day and I still feel dreadful so I think I will have to make another trip to the doctors to see if I can take something more effective. Ah I’ve never heard of the infrared lights how interesting! To be honest my bloating and pain is getting that bad I am honestly willing to try anything! Ah I didn’t know that either about the complaint I think I’m going to show my mum these posts and see what she says as I’m so lucky she has been amazing with me throughout this experience! I am normally a very positive person I’ve always said to myself shut up there are so much worse things going on in the world but I’m finding it hard at the moment and it’s frustrating me even more as I’m not like myself at all! Thank you so much for your help💕
I know this is something u cannot do as i am in same position but it may pay to go to a private Consultant , do ur homework on which one is best endo doctor and just pay for the consultation ( about 150 to 250 lucky my mum is paying ) as then u can say u were desperate as u have been cancelled so many times and now ur at rock bottom.
1. They will b able to do more for ur pain
2. Ur see them asap
3. U can then ask to b put on there nhs list so u know ur get the best surgeon and it will b quicker
I have done this , i have endo and now i have a vagina prolapse!! I am at end of tether now as i thought endo was pain but prolapse is some other kind of pain!!! So i went to dr last week and said i want to see this consultant and how long they said “ 3-6 months”
I said “ok privately”?
Next wed!!!! I am seeing him today literally 6 days ive waited..
So im hoping to get on his nhs list. Which will B quicker then waiting 6 months just to see him then get on his list
I saw a private consultant in March as I wasn’t getting anywhere with my doctors and that’s how I got on the nhs waiting list originally as he works in both. He gave me tablets that worked at the time but have now worn off so I have to take others I am trying to get back to my doctors for stronger ones again as I think my morphine is becoming not as effective but they are fully booked today so more waiting. Oh that sounds horrible hope you’re okay now and thank you so much for your help !💕
I am so sorry you are in this awful pain! I really do have empathy for you!
I am In a similar position to you, but it sounds like you have more pain!
I had to ring everyone in the NHS chain every other day for months before I got my diagnostic lap. They lost my referral 4 times! I just cried at them all the time, it was infuriating. Even if they are mean to you, do not stop! Keep checking for cancellations! Consider making a formal complaint?
Are there any local charity run hospitals? I ended up having my diagnostic lap done at one of these as the waiting list was 6 weeks rather that 7 months. might be worth a check as you can be asked to be referred anywhere!
Have you spoken to your uni about the situation? I found this made such a difference, all my lecturers have been very understanding and don't question if I have to leave early. They might be able to give you some advice on you options with them and having it noted on their systems is always a positive.
I would also maybe ask your GP to go to a pain clinic? I had to quit my job and couldn't leave the house for months but now with the coil, cerrelle (this took months to help at all though!), ibuprophen and tramadol when things get bad (and of course a heat pad!) I am able to do my uni work and function pretty normally until I can have the endo removed next year. You need to see if anything works for you whilst you wait. Unfortunately the NHS is swamped everywhere it seems.
But by far the most important thing in my opinion is finding some peace and helping your mental health. How you feel and you think can have biological effects on your body. I know what's it's like to feel at rock bottom with this pain. But you are not defined by endo, this is just a speed bump. It's okay if you need to take a year out to get better! Find something creative to do to keep you occupied, it can act therapeutically. Read books. Take the time to do what you can. Just because you are in pain doesn't mean you can't enjoy things!
Don't let this beat your mind. Challenge those negative thoughts. Your mind is still strong and your body will get there too!
Sorry for the extra long post. I found everything so hard when the pain got too hard to handle. These are just some things I wish someone had told me!
You will be okay, be kind to yourself x
Thank you so much for your kind words it really means the world all this kindness from everyone💕 I’m not normally an argumentative or angry person as I’m quite understanding but that day on the phone I was so angry and in so much pain I wasn’t letting it go or being nice😂yeah I feel like from what everyone has said and my own experience if you don’t keep on annoying them nothing will get done which is dreadful as when I’m not feeling well the last thing I want to do is have that grumpy person (better stay tame😂🙈) on the phone making me feel selfish and stupid! I haven’t heard of any local charities by me that do it but I will definitely look into this as I didn’t know it was an option that is amazing! I have told my tutor about the situation and he was very understating and just said to email my lecturers and seminar leaders to explain that I won’t be there I do most of the work from home anyway but I’m obviously missing out on other important information. He also said that if I feel I’m falling behind or can’t do an assignment to let them know and they’ll help he said the main thing is that I feel better which was reassuring! I have been to a pain clinic but to be honest it was a waste of time as she just told me to use a tens machine and a heat pack of which I am obviously already doing! I find all my posts are really long as I’m having a rant haha don’t worry thank you so much for your kind words hope your op comes through soon!!💕
Hi I was just wondering what the charity was called where you had your lap as I’m struggling to find one in my area?xx
Hiya, it was a charity run hospital rather than a charity? Like a smaller community hospital, can I say hospital names on here?
The hospital used to be part of the NHS but faced closure so the local community funds it now. Maybe try googling local hospitals and checking out their websites ? I was lucky that my gynae practiced surgery at this charity hospital as well as the main county one x
Oh that’s a point I’m not sure actually haha, ah right that is lucky ! I’ll have to have a good look thanks again!xx
Hi Courtney,
I'm sorry you're going through such a horrible time with endo. It sounds like you're really overwhelmed.
I just wanted to advise that your health comes first. In my second year of uni last year I was going through excruciating pain and I was in the deep ends of depression. I should have taken a year out because my stubbornness got me nowhere. I tried to tell myself I could cope when I really couldn't and I ended up with a miserable 2:2. Now I'm having to make up for that twice as hard in my final year, and I have an upcoming lap too.
See how you feel and do what's best for you, but don't sacrifice your wellbeing over uni. It's stressful, I know.
Here to chat whenever x
Thank you so much for your help it really helps knowing everyone is here for each other and it’s a lovely place to get out your emotions. Yeah that’s what I’m worried about as I was stubborn throughout my a levels and kept on saying I was fine when in reality I really wasn’t and I didn’t perform to the best of my ability. I think I am really going to have to have a think and talk to my tutor and see what to do as I don’t want to just scrape past with my grades as this is what I really want to do, thank you so much!!💕
Yeah I’ve found have had loads of migraines lately it’s getting ridiculous I just have to try and sleep those off along with all the other pain. Yeah it’s just having the will power to do it but when I’m not well that’s the last thing I want to be doing. Ah fab I shall have to have a look thank you! I have a book called living with endometriosis but where I’m trying to keep up with all my uni work I haven’t had much chance to read it yet but it talks about medication, diet and treatments!xx
I am afraid A and E can't really help. There's is nothing they can do. They aren't specialists in this disease. Your doctor could prescribe morphine or other pain killers. It's rest, staying calm as no amount of crying is a positive way to deal with this disease. You have to become strong in mind and find coping mechanisms to start fighting back. My Love xxx
Hi,
Sorry to hear your having a tough time. I visited A&E 5 years ago as I was loosing that much blood and I wasn’t on my period. They took my blood pressure and Sorry to say this but the bed was covered in blood, when I got up. As sympathetic as they were they sent me on my way and said I’d have to go back to my doctors as I didn’t warrant a blood transfusion. Doctor referefed me for a CT scan and it was clear. 5 years down the line I’ve eventually been Diagnosed with endermetriosis. Please don’t give up and keep pushing your doctor for answers, and see if they have a cancellation list, if you are in that much pain it may be worth a visit to A & E for pain relief if nothing else.
Stay strong your doing well x
Oh goodness that sounds horrible! Hope you’re better now! Yeah I don’t think they are going to be much help and to be honest I think I’d rather stay in my warm bed with everything I possibly can to make me feel better and attempt to go to sleep. I think I just need to be more stubborn and keep nagging as they think they can walk all over me! Thanks for your response hope you’re well💕
It’s been a long journey and even though I’m struggling I’m still fighting. I just thought for years I was going mad and nobody believed my symptoms, I’m back next wk and hopefully I’ll get my date for my first opp. I’ve got lots of xmas parties coming up. And I don’t even feel like going, id rather be home in my pjs. I’d have my opp xmas day if I could which snds mad I know but just feel shocking.
Yes keep nagging and ringing up. I know it’s frustrating but maybe they will listen to you and get you booked in early
Good luck on your journey and I hope you get sorted soon x
Yeah I felt exactly the same like people looked at me as if I was making it up or going mad. Yeah I’m the same everyone is making plans for Xmas and I couldn’t think of anything worse if it were up to me I’d have my dinner in bed with pjs on😂 I’m the same to be honest it’s getting that frustrating now I’d have it whenever ! Thank you and good luck to you too!xx
Oh id love to tell u they do something but i ended up in a&e with pain and all they did was pump Me full of drugs and sent me home.
They are only there for accident and emergency’s ie if something needs operating on asap or u broken something... if u have a illness ( aless it infection) they cant deal
With u there just send u home and tell u there get u a appointment with the gynae....
So ur prob better of at home with a hottie or goin to ur doctors or asking for call back just incase u have got some kind of infection. Tell them ur pain meds are not helping and they mayb able to give u something ...
Sorry ur in pain...
It awful
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