surgery

[Charlieroberts506]

hello I'm just writing to get some advice, I got put on the waiting list for surgery in June 2024 and still haven't been seen. I'm on the waiting list for cancellations too, I was meant to have a follow up appointment in feb this year and it's now been moved to July. I don't have a treatment plan in place as the pain relief they prescribed (naproxen) doesn't even touch the sides of my pain. I'm really struggling and every time I ring up they tell me I'm band 4 and the waiting list is up to a year. I physically can't cope with waiting that long so just wondering if anyone knows any way I can get it expedited and get higher on the list? It would be so helpful thankyou

[Scoutybob]

I was diagnosed as stage 4 endo in Nov/Dec 2023 and put on the waiting list with BSGE consultant beg of Feb 2024.

In November, I was told that I would be called Feb/Mar 2025 time which I was really relieved by. I called up this week, and got told that info was wrong and I shouldn't have been given any date at all. No pain relief plan in the meantime. It's all a mess isn't it x

[Charlieroberts506 in reply to Scoutybob]

It's shocking isn't my next appointment will be a year since my first one it's crazy how little support they give. I think gynaecological issues are so overlooked and I genuinely don't think they understand the severity of pain it can cause. How did you get your diagnosis? I got told I couldn't get a formal diagnosis until surgery x

[Scoutybob in reply to Charlieroberts506]

I’d had an internal scan which showed a lot and so they followed up with an MRI

[Selfel in reply to Charlieroberts506]

You can get a diagnosis with scans alone, but scans tend to miss a lot of what is going on so the most reliable method is the op. Scans can see large cysts like endometrioma for example, but miss a lot of the finer detail. An MRI is the most clear, but they even miss stuff.

[Funpizza42]

can you try and ring your consultants secretary to see if you can be seen any earlier for consultation. Bar that if the pain is too much maybe go to A&E and they may speed up your consultant appointment to help you get your surgery earlier or better pain relief at least?

[Charlieroberts506 in reply to Funpizza42]

The amount of times I have been in hospital numerous times since my first consultation is a joke. I was in last week and they discharged me and told me I have been in too many times with the same issue and to just wait for surgery. But it's now at a point where I'm in hosptial monthly, I can't control my pain because my doctors have stopped my pain relief I've tried ringing gyne and waiting lots and they just say they can't do anything.

[KittyTherapy]

Hi, If you have PALS then i definitely suggest getting in touch to raise concerns. I've found they've been able to bring forward my appts x

[Charlieroberts506 in reply to KittyTherapy]

Can you explain this abit more please x

[KittyTherapy in reply to Charlieroberts506]

The patient advice & liaison service (PALS) - if you have that team available where you are waiting/ receiving care, then I'd suggest reaching out to them to explain your concerns as they usually can assist x

[Regenallotment in reply to KittyTherapy]

Try writing to your MP, I did it about problems with my pharmacy and getting a supply of freely available meds they were just being difficult/incompetent and he worked wonders. Worth a go. Look it up on the ‘they work for you’ website.

I’m just at the beginning of this journey and the ovulation pain is awful. So cruel to be stuck like this. MRI date had come through, no idea how long I’ll wait for Hysteroscopy and laparoscopy.

[Charlieroberts506 in reply to Regenallotment]

Expect to be waiting a while! It honestly depends on where your based I think because I've spoken to a couple of girls who was put on the waiting list in November and had their surgery in December but then there's other people waiting over a year. I've not had a follow up or an appointment now since July I was meant to have one next month but it's now been moved to July. Having no pain relief or any sort of treatment is the worst part of it. Not being listened to when you're trying to voice it is honest the worst. I'm sick of going to hospital and repeating myself and then getting turned away and send home with no help.

[TwoSheepOneShoop]

Hi, someone on here suggested Benenden Health to me. You can potentially get diagnosis and treatment after six months of membership with them. For me this is a hedge between against the NHS waiting lists. Might be worth looking into xx

[Charlieroberts506 in reply to TwoSheepOneShoop]

Can you explain this abit more I don't quite understand x

[Clover321]

It’s awful 😢 I got put on the waiting list last April. Every month I went to the GP crying for help. Eventually, a good GP wrote a letter to the surgeon requesting urgency for my surgery. And I got booked in a month after the letter.

Keep pushing the GP for help. Hope you get some answers soon xxx

[Charlieroberts506 in reply to Clover321]

See my doctors are absolutely shocking and they don't listen to me xx

[Selfel]

Hi, so sorry you are going through this. As someone else has said, call the surgeons secretary to let them know how much pain you are in. If no luck there, get in touch with PALS. Also, go to your GP and ask for stronger pain relief as they may be able to give you something that works better than naproxen. there is also a chance the GP will write to the hospital if they agree you have a more urgent case. I got my surgery expedited this way. It is a lot of work, but it is best to keep plugging away, don't give up.

[Loveneige]

When I opted for surgery I was told it would not be before a year. So far I've waited 20 months! I need 2 surgeons so the wait is longer.

Is there any treatment plan you have?

I didnt know how I could carry on and the wait is crippling.

I have started on Zoladex (supposed to only be for 6 months but I've gone past that!)

I have found it has helped a lot with inflammation and pain.

[Charlieroberts506 in reply to Loveneige]

I'm literally on no treatment plan, they're stopped my naproxen so literally nothing.

[Loveneige]

Sounds like you need to go back to your doctors and explain that you're not coping. They can contact the endo team/consultants.

[Charlieroberts506 in reply to Loveneige]

I've done this numerous of times my doctors are just rubbish