AIBU to be kicking up shit in the doctors?

[Lovelyjubbbly]

since 2021 I’ve been suffering stage 4 Endometriosis and a Endometrioma Cyst (chocolate cyst) last measured 6 months ago my cyst was sitting at 30CM.

I will include a couple of photos.
im on every medication that you could think of for pain relief.

This all started due to my section when I had my child the surgeon left tissue inside of my that was suppose to me taking away a trainee was also involved in this at this time.
( I didn’t sign anything for a trainee to be involved in my surgery) it was an emergency c section.

Now I am regularly at the doctors see my GP trying to have this sorted I know there is a waiting list but I am absolutely sick and tired of the NHS they are saying they are still working behind from covid patients in the gynaecology department for surgery.
now I’ve been on the waiting list for surgery since 2021 I called last week to the secretary of the surgeon that is doing the surgery and she told me I possible have another 76 WEEKS until surgery is due.

how can I possible deal with my life is turned up side down I no longer can do anything with my kids or have a life it’s completely destroyed me in every way.

I really feel for you, and cannot imagine the pain you're in, but with respect, there are thousands of women in a similar position to you on the same waiting lists.
Presumably they see patients in order of referral, OR they triage and the most serious cases are higher up the waiting list. The NHS are severely understaffed, and the backlogs caused by the complete shut down of the pandemic are years long in every sector, not just gynaegology. Those on the list ahead of you have either been waiting longer than you already, or are in a medically triaged worse state, so how would it be fair for you to get bumped in ahead of any of them? For you to complain and "kick up shit" to get moved up the list, you'd be pushing someone else in just as much pain and desperation as you, further down it. The only "fair" thing they can do is see people in order they've been referred/triaged, and that unfortunately means having to wait like everyone else who can't afford to go private.

@AlmostAJillSandwich yes - you also need to read the thread and have a look at the pictures.

The OP has been fobbed off for more than 3 years and has now been given some very sound advice on how to move forward. She probably doesn't need people's patronising advice about how she has to wait her turn at this point.

I'm so sorry that you are going through this.

But as a GP, please know that I have no influence on secondary care waiting lists, though this is a common misconception. I can't see their lists, have no better access to the surgeon than you. If I tried to speak to the on call about this, they would not accept my referral as it would not be deemed acute. I'm pretty sure some of my 'please can you expedite this' letters just end up in the bin.

As I tell my patients, they should be calling the surgeons secretary weekly (this is what I did with my mum's cardiologist) to find any cancellations and of course contacting PALS if there is still no resolution.

So I would do : PALS, solicitor, local MP and Daily Mail.

i would then - if that fails - rock up at A and E saying you are now in agony and no longer able to cope.

yANBu. This is third world healthcare and utterly horrific.

@Devilshands I would say my condition is very dangerous now probably the worst it’s ever been I would like to see you in my shoes to see how you feel.

im currently on all fours trying to take deep breaths to manage the pain and crying so i think I really should be priority if I was seen when I should of been I would never be in this condition.

your just very rude there is honestly no need for it you clearly don’t understand my own GP said he has never seen endometriosis like this ever.

now those saying about ask the doctor to inform gynaecologist that it’s more urgent now and for them to chase up and referrals again this has been happens for the last year and half.

I also have called the secretary.
she advised there are still people waiting to be seen and these include cancer patients with gynaecology problems so I understand they will be prioritised before me.
my own GP jaw dropped when he heard I have another 76 weeks to wait don’t get me wrong he is helping every step of the way and he is great but there is only so much he can do going forward I feel guilty with people saying I’m not as priority as I’m making out to be and wasting Gp appointments I’m sorry but what else can I do other than see my Gp when in pain.

for example I’ve woke up in severe pain this morning been up since 5 and can’t sleep from it only managed to dose of at around 2am so 3 hours sleep due to the pain my front stomach lower back hips and top of my thighs and so sore that my side of my body has went in to a cramp.

Today it’s either GP or straight to A&E
I really shouldn’t listen to the ones with the horrible comments now it’s making me think just to stay home and bare it out and not waste anyone. Else’s time as they are people that need seeen more than me

does anyone else agree that I should stop seeing the Gp as I may be taking off there register due to seeing them regularly.
I was in the GP last week and the he told me to make an appointment for 4 weeks time to follow up on certain medication AIBU?

If the pain is as bad as you say, you've probably exhausted the at home medication that can be prescribed, and so today I would go to a and e. Keep it simple, explain the pain, the issue, and hopefully gynae will be called to consult.

In your shoes op I would definitely see a medical negligence professional.

Also if you can afford it then get a private consultation with a gynaecologist. You’ll be given more time and can better explain how long you’ve been waiting on surgery and that whilst you will be NHS you’re prepared to take any cancellations that come up.

This is horrific OP. I'm so sorry you're suffering so much and that a remedy is so far off.

You've been given some great advice. I hope it helps you to get seen more urgently. As well as the medical routes you're planning to take today, I'd also drop an email with the timeline and pics to your MP.

No evidence for any of those statements from what OP said.

A emergency C section is about a far from routine as you get.

If it was out of hours it's almost certainly going to be a registrar starting the procedure, if not doing the whole thing, depending on whether the consultant is resident in the hospital, and not tied up with any other emergency.

A registrar may well be 'quakified'

Every consent form has the statement - 'cannot guarantee a particular person will perform the surgery, but they will be competent and trained.

If you think there's been negligence, by all means explore it, but from what weve been told it seems pretty tenuous to me.

She's done that. Says I'm the original post

OP I’m so sorry you’re going through this. My advice is when you’re in this much pain to go to A&E. This is a rare complication of a caesarean that should never have happened and it is only your high pain tolerance threshold that is meaning you’re managing this at home. When you’re in this much pain go to the emergency place and let them take a history. It should never have happened, I’m really sorry. This paper shows how rare it is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9827051/

im currently on all fours trying to take deep breaths to manage the pain and crying so i think I really should be priority if I was seen when I should of been I would never be in this condition.

Yet you can type on mumsnet.

I was perfectly polite OP. Your condition is NOT life threatening and in the world of an overworked and unrestricted NHS you are not at the top of the list. As someone who has suffered horrific endometriosis, I sympathise. BUT, if your pain is that bad, go to A&E. Stop harassing your GP and taking appointments that other people could use when it will achieve nothing - just because he’s offered a follow up doesn’t mean you need one. Given your spiel about being aggressive and ‘kicking off’ he’s probably just trying to avoid you being more aggressive.

Yet I can type on mumsnet?
have u read anything I’ve said
see to be honest I don’t need to explain myself to you especially when you want to be harsh for no reason. No wonder your name is under devil because that’s exactly what you are.

my GP has been Great actually especially the one I see Regularly.

if I’m In PAIN I WILL be seeing a gp or doctor if it’s unbearable.

Now regarding what you said about my Dr just trying to avoid me did u read He wants to see me in 4 weeks time again? Or did u not read that was your mind to caught up in trying to
get me to avoid seeing a GP when I am entitled too please leave this forum as your Points are Invalid DevilsHands 😁

Empathy is so sorely lacking on this site. You’re a young woman who has lost her body, her job, her sense of self, her time with her very young children, for what? A botch job? The NHS is on its knees that’s not your fault. There will always be someone whose condition is terminal but the NHS was made for situations like yours - a procedure gone wrong, no fault of your own, an emergency that needs seeing to. Don’t let the idea that it happened in pregnancy and you’ve got healthy babies mean you should just put up and shut up. I understand your anger and fear. Let it go as much as you can and take yourself to the hospital every time with this terrible pain and surgical complication

You have all my sympathy. Until someone has suffered the pain , then they really don't get it.

The two things I would suggest are:

1. Highest possible amount of morphine for the pain, take it four hourly to at least take the edge off the pain.

1. Is there any way that you can take out a bank loan to go privately? You absolutely shouldn't have to do so, but that's what I did and now have a pain free life. And then slowly paying back the loan. Whilst in pain its so hard to think.

1. Then once you are pain free you can deal with the potential medical negligence in the first place.

You are not polite, you are nasty for no reason. Op needs to be in a and e, this is meant to be a never event and its nothing at all like your endo.

All of this.

"trainee" (the name is misleading, as they are qualified doctors) doctors are involved in caring for patients - otherwise how do you think they get experience enough to become consultants? As others have said, you are a "junior doctor" from the moment you qualify (having done 5 years at university), until you become a consultant (a minimum of 7 years of working as a junior dr, often can be 10 years+, especially if they do a PhD or research, or a fellowship to gain extra experience in a particular procedure). the day before a registrar takes up their consultant post, they are a "junior doctor".

Junior does not = unsafe or unable to deliver care. My consultant colleague had an emergency C section. This was done by the registrar, and her baby was out before the consultant on call had time to attend and get scrubbed in etc. Minutes count, and if they had waited for a consultant, potentially her baby could have been damaged or died, instead of being a healthy child now.

The vast majority of care in hospitals, especially in emergency/urgent situations is delivered by junior doctors. They are experienced and appropriate people to do so.

As above, there is nothing to say on a consent form that a specific person will do a procedure.

I’m sorry, this is rotten. Ring your consultant’s secretary again and ask for an appointment to see the consultant (and say you’ll take a cancellation). When you see the consultant, ask to be referred to pain management. There are more effective drugs you can be given, and different things you can try that might work better. Your pain’s out of control and there’s more that could be done to bring it under control. Also ask about zoladex or prostap (both bring on chemical menopause). There’s also Visanne, which is similar to a progesterone-only pill but is specifically for endo. None of this will cure it, but they might bring things down to a bearable level. (I have endo and am on a waiting list for surgery too.)

Re:medical negligence: I don’t think you’re going to get anywhere with that. The scar endo would be regarded as a rare complication, and the chocolate cyst is almost certainly a separate thing that’s nothing to do with your c-section. Endo’s horrible, I’m sorry.

This is a rare complication, performed by someone appropriate. I don’t think you have grounds to sue on that front.

It does not sound like a “never event” which is something like operated on the wrong patient / wrong site/side.

@Catsonskis
@ilovecherries

Thank you from me for this info. I'm also in Scotland & the NHS is in a hell of a mess up here too (possibly worse actually). Waiting on surgery since 2019 here.

@Lovelyjubbbly I'm SO SORRY you are suffering so much.
It is avoidable & completely unacceptable.
I'd go to A&E, go to PALs equivalent (I'm now going to do the same)
(& in due course when well enough I'd certainly get a lawyer involved)

I'm so sorry about your terrible situation, OP. There is good advice here from others regarding the correct complaints channel to follow.

BUT- I also DO blame the GP somewhat. They are the gatekeepers for the public to access specialist care. We have no direct route. Is the GP advocating for the patient to get help? What is the GP doing to escalate this when the patient is being left to suffer? Is the GP helping the patient with information about PALs, or directing the patient towards a solution? Or is the patient left entirely alone, to suffer?

I'm afraid GPs do have a responsibility to the public, at least until the system changes and they are no longer the gatekeepers to accessing specialist care. They shouldn't just wash their hands of the entire thing and do nothing.

The GP can absolutely do something.

They can write a letter or call the gynae department where you have been referred and tell them that your situation has worsen and that you need urgent care.

Lodge a complaint with the GP surgery in writing if they are not supporting you and also do the same with the hospital.

When I was referred to a gynae department for various issues that turned out to be endometriosis, adenomyosis and a tumour (not cancer) the size of a golf ball on my uterus and was not hearing anything back I complained to the GP and I found out my referral form had got 'lost in the system' and was never received by the hospital...

I complained again and was given by the GP the right to choose another hospital. I picked a private hospital who was taking NHS patient and was seen very quickly after that.

Try to stay calm but you can definitely advocate for yourself and not allow them to mess you around.

You also absolutely need to lodge an official complaint to the hospital who messed up your surgery.

@Bananabreadandstrawberries

''This is a rare complication, performed by someone appropriate. I don’t think you have grounds to sue on that front.

It does not sound like a “never event” which is something like operated on the wrong patient / wrong site/side.''

That is dreadful advice...

Nobody can say whether this was negligence or not until it is properly investigated by the Trust and the OP should absolutely follow the hospital official complaint procedure.

Doctors can make mistake like anyone else and that is why they are procedures in place to look into these matters.

As a hospital consultant, I would say that while the GP can update us if there is a clinical change or give us information that can be used to try to expedite, firstly, in most cases it's that the pt is having the same symptoms and is struggling rather than there has been a development. If nothing has changed, then it doesn't matter how often the GP writes to us, we are not going to be expediting.

Secondly given the number of people that are on a waiting list right now, GPs would spend huge amounts of time writing to us, and that's time that they could be using for other patient care, instead of on a task that won't change things.

The amount that a GP can do in terms of treatment is limited - if you need an operation/procedure the GP can't do it, or if you need a specialist drug that only the hospital can prescribe, ditto. the most they can do is direct you to PALS.

Just to be clear, if a GP writes to us and says "please can you see this patient sooner if possible because(insert something like - new results from blood test/scans suggests that the problem is more urgent than originally thought, or similar), we will do our best to expedite. Unfortunately "This person is on a very long waiting list and is struggling with their symptoms" is not going to cut it - everyone on that list is the same. Even if you go through PALS, you need to show why your clinical condition means that you should be prioritised over others.

You poor thing. I cannot imagine what you're having to go through and manage every single day.

Based on what you've quoted there, I'd be strongly considering taking out a credit union loan or some sort of small personal loan and getting the surgery done, so that you can simply begin to live again.
I'd also be considering suing the hospital and possibly the surgeon who carried out the original C-Section and include in that claim the costs of the surgery you're having to pay for privately so that you can resume living your life.

Get in touch with a solicitor who takes medical negligence cases and see how you get on. If possible go to that solicitor with a copy of your medical history notes from the time of the section and what was done etc. at that point.