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AIBU?

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Original poster

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

36 replies

nocluewhattodo1 · 01/07/2025 12:31

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.

OP posts:
fireplaceember · 08/07/2025 00:00

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

Original poster
nocluewhattodo1 · 07/07/2025 23:35

Millers5star · 02/07/2025 03:57

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.

OP posts:
Millers5star · 02/07/2025 03:57

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.

Nat6999 · 02/07/2025 01:56

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.

Crushed23 · 02/07/2025 01:09

nocluewhattodo1 · 01/07/2025 12:52

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.

Show quote history

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.

autumn1610 · 01/07/2025 22:25

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.

LizzyMcdonald56 · 01/07/2025 16:03

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

Original poster
nocluewhattodo1 · 01/07/2025 13:34

autumn1610 · 01/07/2025 12:53

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.

OP posts:
autumn1610 · 01/07/2025 12:53

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)

Original poster
nocluewhattodo1 · 01/07/2025 12:52

LizzyMcdonald56 · 01/07/2025 12:41

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.

OP posts:
LizzyMcdonald56 · 01/07/2025 12:41

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 😔