How did the NHS get this messed up and is there any way back?

[nocluewhattodo1]

I am sitting here literally clueless about what to do right now but I have done nothing but chase and push and advocate to get help and I am at the point where I feel my only option is to take a loan to get private help because I have no chance of getting help on the NHS any time soon.

I have had an ovarian dermoid cyst since 2021, it was 3cm, which I then had an MRI in June 2024 and it was 4cm and an ultrasound scan in March 2025 and its 7cm. I am getting significant abdominal pain which is why these tests have been done, the only thing I have been given so far is the advice that I can take paracetamol every 4 hours (I cannot take NSAIDs) and that I have to wait. Ive had gastro investigations which I am still waiting for colonoscopy biopsy results but nothing alarming was seen. I have other things such as repeated leukocytes in my urine for 6 months but that isnt investigated further as there is no sign of infection. So I am in significant pain, my health in general is poor, im in peri menopause but I cannot take HRT until gynae signs off that this wont worsen my cyst so im stuck struggling.

I had a private menopause specialist speak with her team including gynae consulants who felt I needed to be seen on a 2ww due to the growth between June and March and wrote to my GP, who wrote to expedite my case with gynae.

I have wrote to gynaecology who have today confirmed that I have ONLY been on the list 15 weeks and the urgent list is currently a 49-50 week wait. Now this is just to see gynae, if they then decide I need surgery, thats a further wait that I can only imagine is at least the same again. Until I see gynae I cant get any help with HRT, my mental health is horrendous, ive been tried on 4 SSRIs but it seems im someone who is really sensitive to them so I cannot take them.

I just dont know what we are supposed to do when an urgent list is a year long, how many people on that list will get a year down the line only to find out they needed much faster treatment. For comparison when my cyst was first found in 2021 I was put on the urgent list and seen in 3 weeks. How in 4 years did we go from a 3 week wait to a 50+ week wait for urgent cases. I hate to think what the routine waitlist is at.

I just feel like the NHS is falling apart and I know there will be people in worse situations than me but im sitting here after a year and a half of my life being on pause because im so unwell (ive probably left my house less than 10 times in that time frame and most of those have been medical appointments, because I am so unwell) and seeing that I have no hope of help for at least 2 years. I feel so completely lost right now and I just dont know how much longer I can keep fighting and asking for help in a very broken system.

Yanbu, it's terrible. I needed a gynae procedure and waited a year to be given a date. The procedure was required for my endometriosis and was needed at the time as I was ttc. Wait took so long and I was in so much pain we stopped ttc I had a coil inserted (which in itself was 2 months wait) as the coil resolves my symptoms.

More and more people also going private, Increasing wait times there too. At one point you would be done and dusted with private within a month and now your lucky to get your first consultation in 3 weeks. Its a bottleneck and I have no solutions unfortunately 😔

Ive looked online and I can get a private appointment within a week. I can afford a consultation but the surgery is another question and I have no clue if just that initial appointment will help or not. To do the surgery I would have to get a loan but im in agony and cant do a thing and cant bear the thought of 2+ more years of having my life on hold, I feel like im just existing right now and its a miserable existence. I have a fairly high pain tolerance but this is just not bearable.

sorry you are experiencing this, when I was waiting for an operation earlier this year, when they did the pre ops rounds some woman was having a gynae operation, and I think she had been waiting for years I’m sure they said 2022 potentially earlier, I was shocked! My experience was amazing on the other hand, once I got past the GP (delayed my treatment by a good 4 or 5 months because it wasn’t anything to be concerned with and were reluctant to refer me) I sat there feeling bad I had been only waiting 2 months (would have been about 5 weeks but didn’t want an operation a couple of days before Xmas due to support) I was on the cancellation list so got a call on a Tuesday and told to come in Thursday. It’s so bad people have Such wildly different experiences. I couldn’t fault mine apart from the GP, I felt a sense of I told you so when they had to ring me to tell me I had a tumour (luckily benign seeing as I initially went in October and didn’t get referred until April)

I have no doubt that is the case, looking online the average urgent surgery is 6 months but waits are up to 2 years.
Im glad you didn't have to wait long but as you say it shouldn't vary so much, its just a mess.
How people can just be left for so long is beyond me. And as another Doctor said to me, the reason to remove the cyst is to check if its cancerous. With a dermoid cyst its a very low chance but its not zero, so to be being left potentially for 2-3 years just isnt good enough. And even without that, im in such significant pain that I have no quality of life at all, how have we got to a point where people are left to suffer this much with no help.

A private consultation is the opportunity for you to tell.a Dr what your symptoms are. They are then likely to want to do own bloods scans etc so add that on top of consultation price and then return to consultant for results and next steps. Factor these into your prices. If it's going to help you live your normal life it's something to consider though it sticks in my throat when we pay so much in taxes to then pay PMI or private health x

It’s so bad especially if they should be ruling out if it’s cancerous mine was exactly the same but under ENT. 2 plus years to rule out the potential for cancer is ridiculous even if it is low risk especially as right now you could be fine and in 2 years cells could have changed etc (very much hope that is not the case) and like you said living in pain and being left like that to just cope with it and probably just being told to take paracetamol just doesn’t cut it. If you can get a private consultation then I would but you shouldn’t have to be in that situation, I’m sure they are relying on people to get pissed off and then drop off the waiting list. But once you go down the private route just be careful as you may need to fully commit. from what I’ve heard my ex FIL went private in the end for treatment and he basically had to pick a lane and stick with it and come off the NHS list, unfortunately now this means he has to keep working to keep his private healthcare as he got it through work.

Take out the loan. It’s a fucking dreadful situation, but you’ve had to put your life on hold for long enough. You mention peri, so you’re probably only in your 40s? To be practically house bound so young is not a way to live. In the same way millions of people have accepted the effective privatisation of dentistry and pay for private care, including taking out loans to fund treatment, so too will more and more people in respect of medical treatment. The NHS can no longer be relied on sadly. Best of luck.

Ask your GP to refer you Choose & Book to your nearest private hospital, it was a month for me from my first consultation to getting my op, I was only in 4 hours, went to theatre at 7.00pm & was home before 10.00pm.

If you haven't written to your MP, do that tiday. Include everything you have said here.
I am sorry you are going through this. It is disgraceful.

My local MP literally doesnt respond, ive tried asking for help and just dont get a response.

I went for a scan today and literally found myself in tears because my cyst hadn't got any bigger, its such a state that you have to hope things have got worse in order to get help. I think I have no chance of being even seen for an initial appointment until March next year.

Even the sonographer was shocked at how long the urgent list wait was and said she hoped her report sped things up but I just dont think it will.

Gynae is a shit show
looking at my dates - and this was pushed forward as I was in so much pain and having to keep going to a&e and on morphine

july 2023 ultrasound showing endo
October 2023 private hospital says they can’t do anything, refers me back to NHS
july 2024 MRI
dec 2024 MDT meeting
Jan 2025 consultant appointment and surgery consent
May 2025 surgery takes 8.5hrs as it’s so severe and grown massively since the MRI

I had a dermoid removed privately, it cost 7k plus the initial consultation fee of £300 and the same again for the follow up. I had no choice as it needed to be removed before commencing IVF for a second baby. NHS were aware of the dermoid but no referrals had been made, they just made a note of it when I had an ultrasound during my first pregnancy.

A couple people have asked if this could be endometriosis due to the pain because I had the pain when the cyst was 3cm and I was told that size shouldn't cause this level of pain. Do you know what ive been told to do...take paracetamol! I have days where I cannot stand up and walk properly because it hurts so much and my GP asked why im not taking a second dose of paracetamol as every 4 hours will help. I cannot take NSAIDs so they said just stick with paracetamol, its a joke.

Ive wrote today to my GP practice manager to ask for help as she was actually really helpful before. Ive asked also if a private appointment would help as I dont want to pay for it if they tell me I still need to wait for the NHS appointment.

Its so frustrating hearing that other people are having the same issues. The fact an urgent gynae list is pretty much a year just for an initial appointment, how many people are going to have serious things missed?

I am considering this, although because of the level of pain I have, its been suggested that they should be checking for endometriosis too which is going to add to the cost. But at this point my Husband is saying we cant leave you in pain, so let's just figure the money. But I hate the idea of essentially putting us in debt to deal with this. I suppose I should feel lucky that I even have that option as I know others might not even be able to consider that and just have to suffer.

With your private surgery did they still send the biopsy results to you?

Just looking at your dates again and even with that level of pain the surgery was another 4 month wait? Thats awful. Im so glad you got the help but its awful you were left so long in so much pain.

I was given the results during a follow up consultation. Surely looking for endo wouldn't add to the cost, as they are already looking in that area anyway? My surgery was at The Portland Hospital, so it would likely be cheaper elsewhere.

one consultant in the specialist endo centre and she was dealing with emergencies too!
weirdly the pain vanished 8 weeks before my op but she said it needed doing as it was going to come back
everyone on the list with me got cancelled as she spent the full day operating on me

From the quote I got so far it adds £2-£3k, I thought the same that as they are there anyway it wouldn't add anything but apparently it does. I might look at some options though as im in so much pain, but I just had enough last night and wrote in to my GP, PALS and even my MP because I just need some help or advice or guidance because I just cant keep going like this.

For you im so glad it was done but you never should have been left as long as you did and its frustrating that so many women are being left in these situations.

Ive suffered since 2021 with this pain and my whole health going downhill since the start of 2024 and I reached my limit last night and fired off a bunch of emails so im just hoping 1 helps somehow. We shouldn't have to fight this hard when struggling this much.

yeah it’s a nightmare. I’ve had colorectal issues since December. No sign of my hospital appointment at all - called and it’s a year wait to be seen. Meanwhile I’m having repeats flare ups and many days where I can’t stand up - all I can do is sit in the bath. I paid for a sigmoidoscopy privately (£3k) and now have a diagnosis and a treatment path. Conservative to begin with then surgery if that doesn’t work. I’m still barely able to leave the house but at least there’s a plan now. I have no idea how much the surgery would cost but they have finance available.

NHS staff are all doing their best but the system is broken.

i lived in France for a few years and received such amazing healthcare there, I know it doesn’t have to be this way. I would happily contribute towards costs of treatment like they do there, or have my employers contribute. Having years between onset of symptoms to diagnosis and treatment is just a more expensive and worse outcome for everyone.

Well it has been systematically dismantled over the last 15 years or so. The Tories don't really like the public sector so they essentially made it harder and harder to access NHS health care in the hope that as many people as possible would go private, which is essentially where we are today. Im not sure it can ever recover to where we were before Austerity was imposed. There will eventually have to be a new system (whatever that may look like). Meanwhile people suffer.
My dh has a brain tumour which can't be removed, so he has yearly scans to monitor the growth, every year he has to fight tooth and nail for that scan. He still hasn't had this year's, it was due in February.

How did it get this messed up? Answer: a Tory government from 2020-2014!

Blame those who voted for the Tories and for Brexit this whole past fifteen years. The damage to the health service has been incalculable.

YANBU.

The NHS is still good for free urgent care. If you end up down this type of path, needing what they class as a non urgent operation, it seems standard that you are left a long waiting list deteriorating in health until they can get to you.

So yes, given the information that you are on the urgent wait list, but that the urgent wait list is up to 50 weeks, you need to decide if you want to wait or pay.

My 83 year old mother has paid for cataract removal and heart surgery so far because otherwise she would have left getting blind and barely able to walk upstairs while waiting. Where as she is now back on 5 mile daily walks.

I was referred for an urgent cardiology appointment last December. I should get to see 'a member of the team" in September, unless it is postponed for a third time.

More worryingly, DH has cancer. We've had a letter which pointed us to stage 4 with bone mets and he's had a conversation with a nurse who says stage 3 with local lymph node involvement, but it will be at least 4 further weeks and more like 6 or 8 weeks before he actually sees someone who can give him a proper diagnosis and a treatment plan.

We are currently 8 weeks into the 28 day faster diagnosis protocol that is plastered all over the hospital website and there is of course the risk that while we are waiting his locally advanced cancer may metastasise.

Thats beyond horrendous. I actually wrote to everyone last night, my GP, PALS and my local MP. My MP had previously not come back to me about something else but they have responded in under a day and said they are going to take this up with the hospital CEO, so I would highly recommend reaching out to anyone and everyone. Ive struggled for so long and finally decided I needed help and wish I had done it sooner.

You shouldn't have to but try reaching out to people to push for help because it sounds like this is the only way to get help.

I hope both you and your DH get the help you need soon.