To feel absolutely devasted.. So much pain!

[RubiconGuava]

3 trips to A&E with serve stomach pain possible endometriosis bladder retention (from separate on going issue) swabs taken from GP to send off then maybe consider gynaecologist referral.

To be told deal with it at home won't be doing nothing for me at hospital..
Go and see my GP.

Just spent 6 hours in A&E throwing up.

I cannot cope at home with pain and throwing up taking care of kids.

This is really effecting my mental health and I honestly can't do it anymore.

Please any advice and experience!

You poor thing. Did they not even do an X Ray? I hope you get it sorted soon.

I have severe endometriosis. I had many hospital admissions for sudden severe pelvic pain, before they finally operated and realised I had multiple cysts. My internal organs were stuck together by adhesions and it took the surgeon a few hours to unstick them! I’ve had multiple surgeries since and rely on strong painkillers.

Before diagnosis I’d go to A&E in severe pain, often vomiting, sit in agony for hours, only to be told the scanner isn’t working or your bloods are ‘mostly’ ok. Sometimes they’d send me home with codeine and a gynae referral! Sometimes they’d keep me in a day or two on morphine and discharge when the pain settled. Or they’d bounce me between gynae and surgical registrars. Every time a cyst ruptured or leaked a bit it was excruciating, I’ve never felt pain like it even childbirth.

Some A&E staff seemed to think I was exaggerating the pain (I have a naturally low HR that doesn’t help in their assessment, plus I take pain meds that lower my pulse). Some were quite sneery I guess they see a lot of people with acute pelvic pain. I tend not to show pain much I just keep very still and quiet.

The only time they kept me in long enough to do a laparoscopy and diagnose was when they mistook a ruptured endometrioma cyst for appendicitis!

A ruptured cyst on your ovary can cause pain and vomiting as the fluid irritates the lining of the abdomen (a type of chemical peritonitis). In the acute stage my abdominal muscles would go rigid and any movement hurt. One of the doctors kicked my bed (pretending to slip, I know this as I’m a HCP, it’s a test to see if you wince) I’m afraid to say I swore at him and told him I knew he kicked it on purpose and yes it did hurt and no I can’t sit up without pulling on the bed rails as I can’t use my abs so don’t ask me to try. He took me seriously then and found someone to scan me! The scan didn’t show much apart from a complex cyst (adhesions etc don’t show up) but the cyst was big enough for them to operate. Then they found the rest.

* THIS IS A MEDICAL EMERGENCY.*

Says a poster who hasn’t examined, or indeed even seen or spoken with the poster.
Whereas doctor (s) have said it isn’t.
Bloods are fine
Obs are fine

The OP refused the treatment on offer and got a taxi home.

A medical emergency it is not

Urinary retention is a medical emergency.

@Chewingle Urinary retention is a medical emergency.

@Chewingle

* THIS IS A MEDICAL EMERGENCY.*

Says a poster who hasn’t examined, or indeed even seen or spoken with the poster.
Whereas doctor (s) have said it isn’t.
Bloods are fine
Obs are fine

The OP refused the treatment on offer and got a taxi home.

A medical emergency it is not

Retention can be an emergency - it can cause a perforated bladder in extremis or lead to urinary reflux (ie backs up to the kidneys) . Have had 2.5 litres once and was unable to move for pain - literally bent over on a bed gasping . It’s agony and very serious once it gets to that stage .

So the Op does need that sorted, with the catheter they offered that she refused ...

You poor thing OP. People saying why did you leave etc haven't been in severe pain before

Absolutely not true. Its awful, but despite the pain and the distress you need to understand what will help immediately and what can wait a bit. When you are in agony, you are interested in reducing the pain. A catheter would have achieved that. I am so confused as to why the OP would choose to refuse it.

If you frequently suffer severe pain due to a chronic condition, you need to learn to advocate for yourself despite the pain.

I agree, urinary retention is a medical emergency.

And for all the posters telling OP to be rational, that’s not always possible when you’re in severe pain!

@RubiconGuava I am really sorry you are going through this, and I think some posters are showing very little understanding of what it is like to be in severe pain, and to have a procedure that you may not have had before and that possibly hasn't been explained.

Catheterisation is a simple, and usually painful process, which does offer immediate relief. However, ask to speak to a nurse rather than a doctor about it - in my experience, doctors, particularly male ones, are less likely to explain the process and what you can and cannot do with it in place.

I also think there's an assumption, and it's often, that if you are in A and E with retention it's something you will have experienced before - and thus the explanation that should occur gets lost.

You need to know how to change the catheter or catheter bags before you go home - this should have all been explained when they were giving you the option to have the catheter in - from your posts it seems like it wasn't, which is really, really poor form.

Relief will be immediate - just make sure you stay still for a while as I had an unfortunate incident with two litres of pee, a burst bag and a drunk man singing to me in an A and E waiting room when I had been turfed out a little too soon after insertion .

@HoneysuckIejasmine I suspect it wasn't properly explained to her what it actually involves and entails. Let's be honest the first time you have a catheter in and you are told to take the damn thing home with you it's a bit of a daunting prospect!

I had my first in with zero explanation (grateful to have Youtube) and my second one was all explained to me perfectly - completely different experience.

I also think if it's something you aren't used to or aware of, you don't realise how simple it actually is.

I am sorry you are in such pain. I hope you get some help soon. What always surprises me is when people who are in the middle of a medical crisis post about it on MN. It is genuinely the last thing I would think of doing (would be able to do).

She has NOT been diagnosed with urinary retention.

Posters have diagnosed her

@Chewingle She says she has bladder retention in her first post.

[quote BearEastie]@HoneysuckIejasmine I suspect it wasn't properly explained to her what it actually involves and entails. Let's be honest the first time you have a catheter in and you are told to take the damn thing home with you it's a bit of a daunting prospect!

I had my first in with zero explanation (grateful to have Youtube) and my second one was all explained to me perfectly - completely different experience.

I also think if it's something you aren't used to or aware of, you don't realise how simple it actually is.[/quote]
They can be terrible at explaining - I was once sent home with just a nightbag, single use disposable thing - and no leg bags - was my mums GP that fitted it and told me she didn’t have a scooby where leg bags were stored so she was sure I’d be fine with the nightbag until the chemist could source a leg bag ..

24 hours later I was dragging a bag full of pee - had to carry it around in a bloody handbag !!!

Wil never forget the first time I had one and went for a shower in hospital, and just dropped the bag - ouch !!!

Or the GP I asked to help remove mine (I have PTSD and autism and trusted her more than the nurse!) . The GP grabbed the end of the catheter and pulled ... not realising she needed to deflate the balloon ... I was in tears !

OP definitely FB search for ‘urology and catheter support’ - there are hundreds of us sadly, we’re very knowledgeable and a caring bunch, worth chatting to others in the same horrible boat !

[quote BearEastie]@Chewingle She says she has bladder retention in her first post.[/quote]
RTFT

Thanks for the Facebook Group recommendations - did not realise that existed and have now sent through a request.

@scaredofwhatswrong we have similar shared experiences, sadly. I'm sorry you've not had the greatest time with it all either.

I no its not the smartes idea to just leave with 500ml of urine in me

That is way above the limit for retention.

For the most part Labour have supported much of what the government has done. Covid has happened, yes mistakes have been made but other countries haven’t done that much better on the whole. And don’t compare us with Australia or New Zealand FFs. Their situation is entirely different

Labour did not support Osborne's austerity which decimated our public services.

This is a familiar story right now. Insist on thorough assessment/care.

My niece started with low abdominal pain 4 days ago. It worsened and she was vomiting and in agony. Went to A&E. Given IV antibiotics and morphine. Kept in for a few hour observation. Sent home BECAUSE although she needed a scan, there was no facility available due to staffing and they couldn’t say when it WOULD be available.

She was discharged into the carpark. Wobbly from morphine. No handover just...”off you go; come back if it worsens”.

During the night symptoms worsened. Called 111. They advised return to A&E. Ambulance called. Taken to A&E. On trolley 12 hrs waiting for scan. Had scan but no dr to read it. Waited further 6 hours. NBM. Scan read and showed ruptured uterine abscesses. Too poorly to operate so... now admitted. IV painkillers, massive IV antibiotics hoping infection responds and sepsis doesn’t set in or worse.

What a fucking shambles.

My niece has worked in care for many years. She’s 33. I’m an RGN but not working at the moment in nursing. I’m appalled by the state of the NHS. The nursing staff. The facilities.

Everyone has a degree but it seems very few “carers” actually care.

Ffs does this have to turn into a government bashing thread? Is this really the place? Give your head a wobble.

Like others have said, if you have bladder retention you need to be catheterised. otherwise it will only get worse and this is dangerous.

For the endometriosis, A&E isn’t a suitable place to treat this, aside from checking for immediate surgical emergency.

You need to be referred to a BSGE accredited specialist endometriosis centres. This is essential for complex or severe cases such as those with bladder or bowed involvement as you need specialist surgeons.

Most of the specialist centres are NHS, but a couple are private if you want to go with that option. You can find the full list here:
www.bsge.org.uk/centre/

Also here is the NICE guidance algorithm for diagnosis and treatment of endometriosis. Read this to understand the basics of the process:
www.nice.org.uk/guidance/ng73/resources/algorithm-for-diagnosing-and-managing-endometriosis-pdf-4595719645

I feel for you, I really do I had a similar experience, 4 visits to A and E, one just left for 6 hours, other patients complaining I needed pain killers.

4th visit they actually did a scan and it was an ovarian cyst that was bursting and refilling. This was the third different A and E.

The outpatient scans had seen nothing because the cyst had burst.

I had a home visit from a new (trainee GP) who was excellent and said, "I know paracetamol is mild on its own but when you combine it with tramadol (I take that for my arthritis) it increases the pain killing" She was right.

I'm sorry I can't offer more advice.

I was reading a list the other week of things A&E do not treat, some where eye openers.

I banged my head badly last year and my neck actually loudly crunched, I was unable to move my neck and had shooting pains in my spine and arm I waited a day because I could walk and assumed it couldnt be so bad but the shooting pains got worse instead of stopping.

A&E where really rude about it (the receptionist even said 'well it happened yeasterday and your not dead so it obviously not that bad') and they sent me away without tests saying 'its probably just whiplash'.

I was annoyed at the time however the list stated A&E's do NOT investigate/treat any back and/or neck injuries unless they have paralysis.

I still have arm pain and numbness and my GP thinks its due to something being wrong with my neck from the accident.

There where a tonne of other things that you would obviously go to A&E over (because what else would you do) that they where complaining about as 'time wasters'.

The fact the are cutting treatment for genuine issues seems to show how bad the NHS is getting.

I was annoyed at the time however the list stated A&E's do NOT investigate/treat any back and/or neck injuries unless they have paralysis

This is really interesting.

Which country are you in? I had a neck injury and was treated in A and E for it, despite the fact I had no paralysis (even took the spinal board for a little walk to get a sandwich from the cafe across the road when they left me in resus - I was totally out of it on very strong painkillers!). This was in London.

You poor soul. Men would never be allowed to suffer like this

I recently had GP appointment to investigate lower abdominal mass that has been causing urinary retention. I have a long history of Endo and have a lot of scaring and adhesions on my bladder, also nerve damage so not always aware of full bladder.
GP did face to face at the surgery and referred me for a scan. 3 days later I had a phone call to arrange the scan the same week. GP phoned me within 3 hours of having the scan with the results.
I wasn’t classified as urgent.
Ask your GP for a referral, they will give you the expected waiting time but because the hospitals are returning back to normal and clinics are quiet ( because all non urgent appointments were cancelled in Dec for Jan-Mar due to the anticipated second wave) they have plenty of slots.