Where are women supposed to go when they’re in agony with endo flare ups!? I went to my A&E at 4am last night and took 7 hours to see a doctor. I was having horrific pelvic pains, feeling very faint and nauseous and after having taken codeine at home I felt I was that desperate for help I had to go to A&E. I waited 7 hours to see a doctor to be told they couldn’t give me any pain relief because it wouldn’t solve the issue, taking other pain relief would just cause more complications apparently and it wasn’t an emergency, They wouldn’t do any scans to see if I had any cysts or anything further, both bloods and urine sample had high white blood cells, yet “there was no need to investigate”.
What do you do when you’re in agony and codeiene doesn’t help but the hospital won’t give better pain relief?? I’m now home still feeling faint and nauseous and in lots of pain. I understand A&E don’t specialise in endo but I was so upset by this experience.
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Hello it’s awful they were unable to help you. Are you able to call NHS 24 and see how they can help via that way? I have been to A&E several times and this was before I was given codeine or tramadol. They use to put me on morphine and admit me for the night. Oh the pain is horrendous like nothing else on earth, I know how you feel. I was spoken to by a gynaecologist who said I would have to “manage” my symptoms, yep okay because it’s that easy! I now take naproxen when I feel the first slight pain to try and stop it becoming like labour pains, if that doesn’t work I am now on tramadol. I believe some people are given morphine pills for home use however I got refused these.
How are you feeling now? Is the pain getting less for you. Xx 😘
Hi, thanks so much for your response it's just nice to know I'm not alone. That's a good idea to take pain relief as soon as I start to feel the start of a flare up rather than wait and be stubborn until the pains really bad. I'm just completely exhausted, it feels like a battle with the nhs, it almost feels traumatising. I did used to take ibuprofen or naproxen but my body reaction quite badly to them so I can only take codeine or cocodamol and last night was given codydramol. It's difficult because in the hospital where my nearest a&e is, there's no gynae ward so they didn't even admit over night so I could have better pain relief. I feel a bit more comfortable with the pain because I'm quite drowsy from mediation I've been taking.
I would say the pain relief wise it definitely helps me to take medication when I feel the slightest pain. It doesn’t always work though and I go on to tramadol. Tens machine also works. I got mine from Lloyds the chemist at that time it was £20. You are certainly not alone in this, it’s a wicked illness. The NHS as great as they are the waiting lists are horrific, I waited over a year for a laparoscopy and ended up going private as I was in such a bad state mentally and physically x
Yes its definitely affected me mentally, it makes life so difficult. I am paying to see an endo specialist soon as I only saw a general gynae doctor who wasn't sure how else to help.Fingers crossed it will get easier xxx
I'm so sorry to read your post. In my very similar experiences I found that only endo specialists, real specialists, get it. My life only improved when I paid for a private appointment with a specialist, then switched to the NHS for treatment. I would recommend it. Don't waste time on GPs or generic services. They rarely get it. X
Not sure what level of Dr etc you saw in A&E but as a medic and a visitor to A&E with such awful pains I get the experience you’ve had. August is often the new intake of new drs with far less experience and I recall nursing staff outside of work commenting it’s the worst point to try and get help as inexperience plays a role. It shouldn’t but I’d take the good advice go private if you can to specialist and keep hammering at that door. If not NHS 24, locate the NHS specialist and ask the route to seeing them for proper support. My fav phrase is I don’t want to be bothering those who are busy with stuff they aren’t able to help with and don’t have the experience. Am concerned not to unnecessarily clog up NHS where I don’t need to. Normally it means I get the info I need to progress things as they are relieved it’s not going to be their issue anymore.
Unfortunately I did see a consultant not a junior doctor and she just didn't know what to do or at least offer me better pain relief until it eased. I agree your little phrase is a great way of putting it to them, I'll remember it for the future! Thank you xx
Endo pain is recognised as one of the top 5 most painful conditions to experience. Quite why they can’t get their heads round that leaves me speechless. It’s irresponsible at the very least, ignorant and wilful lack of care on the other. Keep banging on the door until you get the proper respectful care you deserve.
I had to go to a&e on Thursday night and got treated much the same. She kept asking why I was here. And offered me liquid morphine which I didn't take and no proper tests. They only did a urine test for pregnancy and uti even though all my symptoms match endo. I'm disgusted to be honest. Hope you're OK.
Yes she nearly forgot to take a urine test, mine did have high white blood cells which she seemed to ignore. It just makes you feel so horrible and like there's nowhere to help when you're in agony. Hope you're feeling better
Can’t see why the high white cell count was ignored. I’d get the GP to get a urine sample sent off and ask if they can run a klebiesella check on it. Frequent flyer bug for women with endo causing inflammation in peritoneal cavity and UTI. Needs attention and can be part of repeated endo flares.
It’s disgusting that us women who suffer get treated like this especially when there know it’s painful and wot it is I’ve had this all my life with when go a and e and when I spoke to my gp I get them to write a letter that I’m seen by gyne and try get them to understand that I need pain relief I’m now not able to take tramadol and codine as body use to it 😢 I feel for u as the pain is horrific try and ring nhs 111 and explain Wots happened maybe there can get u seen by a gyne x
That's a good idea in the future I will ring 111 instead. I hate how they speak to you as if you're a waste of space, because why would I go to a&e bent over in pain feeling so sick crying and about to pass out for no reason. I really hope in the near future they will recognise it more qnd they will have to do soemthing for the pain before being discharged x
So sorry to hear this. How are you feeling now? Any better? It's so horrific the level of pain we are expected to manage.
Do you know what stage endo you have? If severe stage you should be reffered to an endometresiosis centre, do you know if on a waiting list already? The main reason being pain non responsive to opiates is what I had and ultimately after dismissal by gynae ( told a follicular cyst that will go) I paid to see a private consultant long of the short is at laporoscopy there was stage 3-4 endo adhesions/ scarring attaching my ovary/ womb to my colon, a nodule in the broad ligament, and a repro tract completely buried in scarring--which explained the pain.
Now they've been removed although not perfect my pain is a bit better managed with the progesterone pill and otc meds for now ( ibuprofen/ Paracetemol but I only had the lap in June thus anticipate could deteriorate). Endo doesn't always behave based on stage so some severe stage sufferers have minimal pain and some stage 1- 2 maybe in agony thus still meritting investigation.
I feel like anyone in this pain level should have been taken more seriously by a&e but maybe they were reluctant as you said no gynae at the hospital ( to make a plan for you), not sure the reasoning but incredibly frustrating to be sent home. When I had first gone I had a ct to rule out other issues e.g. a ruptured cyst, free fluid in abdomen, other abdominal issues etc).
Have you had any imaging prior at any point to see if chocolate cyst? Any deep invasive endo e.g. in pouch of Douglas?
The raised wbc in urine/ bloods - do you have any urinary signs? Did they mention a crp elevation? I've had simular on urine before ( shows inflammation or infection) but then the following few days after was also showing red blood cells, nitrates thus I had treatment for a uti. May be worth contacting your gp on Monday for repeat urine and to send for c&s if needed etc ( I have urine sticks at home because I have been a bit prone to infection plus I am used to interpreting them at work).
Do you know what part of your cycle you are at? My pain has been higher during menstruation and ovulation. Always worth tracking pain/ symptoms if not already. Handy for planning my life but also when see gynae.
In terms of pain releif I generally find nsaids ibuprofen or naproxen seem to work alot better for me then opiates ( and due to constipation I am reluctant). Since endo causes inflammation it makes sense but I had seen you can't take these. Unfortunately I'd say contact your gp and ask if they can refer to a pain management team.
I think if private is an option I'd pay for a consult with a gynaecologist specialising in endo ( read their profiles online). Contact your gp/ hospital to find out how to get your notes, any imaging reports etc mine was done via an online portal caused sars. Handy to have it all to show a consultant. Was about £180 I paid to see the consultant so they can give an opinion . Their notes go to your gp and for example if they say think need an ultrasound tell your gp and they can arrange via nhs. The waiting list is so long you may just want to pay private ( see lindles post re advanced/ specialist ultrasound for endometresiosis).
If private isn't an option I'd say go via your gp. Explain pain level. They should be sending you to a pain management team, giving details for gynae physio etc . But this shouldn't be all they should be referring you to gyane or an endometresiosis team ( dependant on stage) to help your long term management. Basic stuff like asking them to look at your a&e bloods / repeating urine, sending for c&s is all stuff they can do in the mean time. I had a few hit and miss gp but eventually got one with an interest in women's health. She is lovely and always willing to help, fight my corner ( repeated email gynae to chase the waiting time etc)- it makes all the difference finding one who you trust.
As some of the other girls have said I also use a tens machine ( it's a 20 min cycle ) and use a hot water bottle. I take paracetemol/ ibuprofen at flare up ( used to need this and Dihydrocodeine and was still in pain). I take probiotics, multivit and iron daily. I take Antihistamines ( mostly for allergy but have read a research paper saying during endo their is an excess of mast cells releasing histamine thus in future research should be targeting this/ mast cells) . I have stopped any alcohol, caffeine. Try and eat a Mediterranean diet. I have given up dairy but have a known allergy to this so anything that could trigger inflammation I have stopped.
Hope any of this helps and hope you get some releif hun.
Hi, thank you for taking the time to respond.My endo was found in the pouch of douglas and I had an ovarian cyst which was removed in March. I had an ultrasound s couple of weeks ago which didn't show any cysts but showed a very thick uterine lining which she couldn't understand as I'm not due to bleed I do have more of an urge to wee but she shut me straight down and said that because I also am very bloated, she didn't think I had an infection. I will see my gp about this tomorrow for further tests. Im on progesterone only and last bled early June with no signs at the moment that I'd have a bleed any time soon. I definitely will see a pain management team and I am going to see a specialist soon privately. Currently during flare ups I use my tens machine as well as codeine and paracetamol. I also sometimes use be you monthly patches as I tend to avoid hot water bottles because the oast couple of months I have excessive hot flushing and night sweats. A few people gave mentioned about antihistamines which I will have a look into, if anything can take the edge off I suppose it's a bonus! Xx
Pouch of Douglas means severe stage so you should be under the care of an endometresiosis centre? I am still waiting for nhs refferal to one- it was made in July and told wait is about 6 months here. Its worth checking since you had surgery in March was you already reffered by the surgical team or gp if it was nhs? Ask your gp when you go as may spare you private fees and tbf the endo centre incorporate gynae, colorectal, urogenital, pain management and physio etc thus all you will need. The issue I find is the gp face limitations, mine is brilliant but said cannot refer to gynae, urogenital and colorectal all at once ( and each discipline seems to have over a 6 month wait each) hence the need for endo centre. There are from what I've seen online private endo centres with specialist in each region but I'd imagine pretty expensive.
I'd query the ultrasound when you see the private or endo centre. Could it have shown adenomyosis causing the thickening ( endo tissue with the uterus muscle) being one question. Also regarding the urinary signs I've had increased urgency on and off even a month prior to diagnosis. Once directly acountable to a uti post op but I also wonder although he said just broad ligament nodule ( removed thus the bladders probably OK ) if there's any direct endo involvement on the bladder. Thus I am awaiting mri result looking for deep endo ( arranged privately since I feel I won't likely be seen until December at the nhs endo centre and I also developed signs of nerve involvement).
But yes the GPs for some more basic urine testing may be worth to begin with. And then query as well the bladder signs with the specialist especially if all urine etc comes back negative. I'd specifically ask endo deep or superficial involvement on the bladder as a posibility.
Hopefully you are beggining to feel a bit better and can get some medical support and some releif. Big hugs,
Unfortunately although I had severe endo I wasn't referred to the specialist even after diagnosis so we've had to really push for the referral and only now am I getting it. Thanks so much for your detailed replies, they've been very useful ❤xx
I'm sorry to hear that, it really shouldn't be our job to have to keep fighting for stuff that should be the standard! But I am glad you have pushed for this and hope you are able to get the help you need.
No worries happy to help even if it's small, I know how isolating and lost dealing with this can feel.
This might be totally useless to you but I experience severe burning up, sweating, basically drenched during Endo flares but hot water bottles front and back are the only thing that take down the contractions a notch or two. So I basically massage in cbd balm, use hot water bottles, windows wide open, wet face cloth on forehead and chest, fan blowing on me, basically anything to cool the parts of my body that don’t have hot water bottles attached to it.
Lots of great info . I’ve found Omega 3, Reservatoral and Levagen a powerful route to pain relief. Omega to reduce the inflammation and heal the leakiness in the gut tissue, Reservatoral useful with lesion reduction, inflammation, mast cell granulation, fibrosing, Levagen chronic pain relief especially with the nerves, gut healing, immune response especially with excessive mast cell granulation. Probiotics added after 3 months after the other items once the leakiness improved. Am off all the pain meds and was on paracetamol, gabapentin,Co-dydromol, opiates ( at one long point 24/7 for months) to no avail. Finding the moves that really sustain and reduce inflammation is so important in keeping myself out of A&E and minimise the medical visits. If only for my mental health 😂😵💫
A&E is always a traumatic experience. I end up going in desperation with the incessent debilitating 24/7 pain. Ive got stage4 on bladder bowel pelvis rectum and diaphragm. Ive been on everything oromorphe tramadol codeine cohydramol (cant spell!) Gapapentin naproxen prostap injections for menopause which caused graves disease hyperthyroidism. Ive been on tramadol zapain. Ive had 3 surgeries and one for bowel prolapse which has returned since march. I had a pudendal nerve block which helped a little but not alot. I get pain team help with pelvic floor physio and dilators which im too scared to use and nothing works. Currently on morphine patches and codeine but again any time i use the toilet its game over and im begging for stoma bags! A&E is a battle of waiting and being gas lit or made to feel weak. If i get transferred to gynae its 15 hours later with morphine then home. Hysterectomy wont cure as you know despite me having Adenomyosis aswell as the endo is everywhere. Im blessed to have children after 11 miscarriages and would love another but although im on a constant hormone pill so no periods except breakthrough which keeps happening if i came off it id want to die! 22 years of it and ive learnt nothing in managing it. All hospital and medical professionals should be understanding and for you to go to hospital is such a last resort and shows how courageous and strong you are xxx
Yes it really does leave me feeling traumatised too! I'm so sorry to hear about everything you've gone through but I'm so glad you were able to have children which is definitely soemthing I worry about as I'm only 18, so I want to do everything to preserve fertility. Thank you very much for your reply and support, it's appreciated a lot xxx
It is traumatising and you try everything in the hope it works. I refused the coil for years and when they forced me it perforated my uterus and i had contractions for 3 weeks until i collapsed at work! Its rare but not every method suits everyone. Youre doing amazing thinking of future fertility and although its daunting keep positive and definitely go to a BSGE Endometriosis centre xxx
I had the same once and a nurse heard me sobbing before I left and she cornered the doctor and forced him to prescribe me some tramadol!
Another time I went and was seen by a brilliant nurse who gave me morphine while the doctor got round to seeing me - I had to spell out what medication I needed to help me with it though when I finally saw the doctor and then went home to bed.
It’s really difficult as it really does depend on who you get to see, which isn’t how it should be! Please don’t let it stop you going again, if your pain is on that level then you need to see someone, it could be anything and even if it is a flare alone, you need some pain relief to help you get by! Are you seeing a consultant with it at the moment? If so they could help you with a flare plan so you have everything you need on hand or at least something you could take with you next time so the a&e doctors understand!
I'm so glad your nurse pushed for help, I just hope if I did have to go again I'd see someone a bit more willing to help. I was seeing a consultant at a general gynae department but she came across so rude and insensitive and in the end said I don't know much more about endo, if u really want a second opinion go to a specialist. So I am going private to see a specialist in the hope they'll be more understanding and help me find the best treatment. Xx
The only place to go is appointment with a Endo Clinic or Specialist. Endo pain is often extreme. Cysts don't cause general pain unless they're huge or burst. Is the pain better today? Probably not as bad today is it? You will have to find a coping method. My pain was awful in the nite when I was younger. I would sleep in a bath of hot water and to up when needed. I found belladonna good for big spasms, Fennel Tea to relax the bowel before bed. TENS machine my saviour during the day but it takes a while to learn how to use but you can't use that when you are asleep! Daytime with tiny childrens small hot water bottles front and back as well. Codeine I didn't find the best pain killer. Ponstan 40, Belladonna, Co-dydramol. Anti inflammatory drugs like Ibuprofen ! I also find sometimes that one drug works better than another from one day to the next, I don't know why this happens ? Gentle Sex or orgasm also I found can change my bodies hormones and give relief. Swimming as well provided you're not too exhausted. Reflexology and Electric Acupuncture, Healing. I did a Course on Reiki and that also helps sometimes. I found that diet changes help going gluten free, cut out Soya products cos of its Estrogen alot of sweets, chocolate and cakes have it in unfortunately! Try preparing for when you are more likely to have pain. Take painkillers on onset before the pain elevates.
Endo is terrible but put yourself in back control, except it and deal with it. I find being upset or frightened only overwhelms me not to cope with the extreme pain.
My best wishes and hope one of the things I've written helps you fight back!
Hi, my pain has eased I just feel exhausted and traumatised from the whole experience! Thank you very much for your encouraging reply, I will certainly give some of the things you mentioned a try! I only had an actual diagnosis in March despite having symptoms since I was 14 so I guess it'll take a little while to find the best things that suit me. Fingers crossed, things will improve. Xx
Thanks for your reply. Myself the pain started early, finally diagnosed at about 24yrs. Mine is in my whole body. Many more women are being diagnosed with Endo these days. For most it's still stays local to the womb.
If you require surgery in the future try not to have many operations over time. As this can cause more issues with scar tissue and nerve pain. I took Danzol but then I couldn't take steriods anymore. Zoladex is a great drug but it took about a yr to get it settled on it. It didn't quiet stop all of the disease but I generally was alot better, able to work and happy.
Yes I'm trying to avoid surgeries where possible due to that risk of scar tissue etc. Zoladex has been mentioned briefly in the oast but hopefully when I see the specialist they can tell me what they think is best for my situation
Zoladex is used for several illnesses for both men and women. It stops the Pituary gland producing hormones which the Endometriosis likes to continue growing and damaging. I found a Amitop gel is a great way to apply to the area the implant is put. If you require further help on the use and application of Zoladex and how I made it easier. Contact me further. Good luck. x
Hi, It’s terrible the way we can be treated at A&E. I have found myself sitting outside in a wheelchair for 7-8 hours too and for them to say the exact thing as they did to you. I have been to A&E a few times and the ONLY time i got admitted is when i pushed and pushed, I would not leave until they gave me something for the agony I was in, you could even say I exaggerated the pain I was in so they would take me seriously. They did, ended up going in for emergency surgery that same day.
It’s crazy how they just give out codine to take at home, even morphine now a days.
I hope you are feeling a little better than last night and the pain eases of soon❤️🫶🏻.
Thank you so much, its awful how much we have to stress that we must be taken seriously. Hopefully there'll be a day there are better guidelines for a&e on how to deal with endo emergencies. ❤xxx
Hiya! I completely agree I’ve been doubled up in pain the last week GP useless told me to go a&e and had the same experience as you. I’m not yet diagnosed either awaiting scan next week 😰
You must go to your GP. I know, it is really frustrating but .A&E is for life and death and acute injury. Hospitals can not scan you for a chronic illness from an emergency department it sounds cruel but they need the scanners for people who are in immediate danger of dying . I do understand your anger and frustration. I have been there. I understand pain. Codeine is one of the better efforts in a poor effort. What I have done in the past is take codeine and back it up with Ibruprofen. Please do not exceed the codeine or paracetamol dose and do not use both paracetamol with codiene. It is safe to use Ibroprofen with cocodamol. Pester your GP. It took me about 10 years to get them to be interested.
I was sorry to have to go to a&e the other night, but I have a heart condition and my pain was affecting it so I felt that I had to be safe than sorry. I will be going to a specialist soon so praying they can help. My gp said they didn't know much about the condition
I’m so sorry you’ve had this experience. I know you’ve said you can’t take nsaids/ibuprofen. Same here now and I found them the most useful if taken early, better than tramadol and 30mg codeine as anti inflammatory. Really good you’ve now got an appointment to see an Endo specialist. As you can’t take anti inflammatory meds I’d focus on doing everything you can to reduce inflammation the whole month. Diet, cbd, Dead Sea salt baths (before it hits I mean), omega 3 or starflower oil, magnesium. I’ve found taking cbd oil every day almost as useful as ibuprofen. Do some research on Simply CBD Users Support Facebook group. You will get a lot of advice there re Endo and the gaps you need to leave between cbd and meds. You clearly still need strong pain management during flares but hopefully adapting an anti inflammatory lifestyle will reduce the severity. I can’t tell you how many nights I’ve had severe Endo flare ups, horrific pain, non stop vomiting, blacking out and just laid on a cool floor as drenched in sweat (I’m 47, Endo since 17). A&e is utterly traumatic when you can barely move. I’ve avoided it as much as possible but been in a terrifying state at home. Yes a&e is for life and death but where else are you meant to go when your gp is closed and doesn’t understand Endo anyway. As you’ve mentioned you have a heart condition - it would be unwise to have just persevered with excruciating pain. There needs to be another place where Endo sufferers in this state can go for emergency help but there is not. It’s a total failure and not changed in 30 years. Just so you know I’m now taking double dose cerazette which has lowered the pain but comes with its own delightful side effects. Please be kind to yourself today, continue getting advice on here, look into cbd and anti inflammatory, etc, and I hope you are listened to and helped at your specialist appointment xx
Thanks so much for your understanding. It really means the world when you're having the worst days of your life. Everyone has been so useful with advice and I've certainly got more of an idea of what I can do to ease pain and flare ups. I do feel that being younger some doctors just fob me off and put everything down to changing hormones or the stress of a teen. But I'm feeling a little more hopeful thanks to everyone's advice! Xx
This is the NHS.. I m wondering whats going to take to the government to make a move and improve the service. If we all paid a little on A&E visits the NHS would be able to look after us all
Sorry to hear you are in pain. It sounds like you need to see your GP and get a referral. There are lots of different pain relief options your GP can try you on. I found diclofenac suppository really good. You can buy that from the chemist. You absolutely must take painkillers at the first sign of pain. Or if it is part of a regular cycle then a couple of day or so before. It makes a huge difference. Also try a tens machine and hot water bottle or ice packs on rotation. Before my latest operation my husband was desperate to phone an ambulance several times but I was determined to find a way to manage. Hope you find something that helps and keep going with your GP/ consultant until you find a solution. It is not normal to be in so much pain and it needs investigating. Hope you feel better soon.
Thank you very much, I will definitely be taking pain relief as soon as I notice any pain in the future. Sometimes I try to put things off or being in college I don't get time to take things regularly as I should do. X
What?! I can't believe this... I normally get IV Morphine for my pain in a&e. It must have been your doctor. It's so sad that as women while we are experiencing sickness we must also know how to communicate with doctors and be our best convincing advocates in order to get help... Instead of us just explaining the sickness and getting help.
If that happens again, go back to a&e the next morning and let them know you were there yesterday and you are worse now and the pain is unbearable and w/e they did b4 didn't help... This is also important tell them ur pain is at least a level 8 and you desperately need help. Also don't be afraid to cry or hold ur belly... React to the pain like u do at home, they use stuff like that to judge you. (I'm not saying pretend or lie, just be real and don't hide it)
I hope this never happens to you again, I have stage 4 endo and it is the worst and not getting help when u need it is an absolute nightmare.
Thank you for taking the time to reply, I am a person that even when I’m at my worst in pain I hold myself together, it’s like I can’t cry because my body is in shock with pain is the only way I can describe it. But I did explain that when I went in my pain was a 9 and I kept feeling very faint so she could see I was struggling even though I wasn’t crying. It’s difficult to know where to go because my gp thought I just had IBS even though I’ve actually had an endo diagnosis and my nearest hospital with an A&E and gynaecology department is over an hour away. I was just shocked to be sent home in the same state with no pain relief to bare that pain for 2 more days, it felt horrendous. Xx
I was in a&e 20 hours on Sunday and they wouldn’t give me pain relief or nausea relief until I had Ct scan and the surgeon had figured out a plan. It made me cry also being on my own didn’t help.
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Please help, very new to all this 
Helpful registrar/unhelpful friend!
Feeling upset and worried
First gyno visit - will there be an internal exam? 
