need to rant

[Cbol82]

Hi ladies,

I just need to rant.

I’ve been on my current care pathway for 75 weeks now, referred from GP in September 2023 after a TVU showed adenomyosis and a 1cm cyst which they assumed was an endometrioma. First gynae appointment wasn’t until late March 2024, they sent me for an MRI scan in April which shows I have stage 4 endo with a significant nodule penetrating through to the submuscosa of the rectum, adenomyosis and a 6cm dermoid cyst. Have since met with specialist gynae and bowel surgeon. Had a flexible sigmoidoscopy in December. They told me in September that their surgery list is 6 to 12 months, the bowel consultant said in November that there is only 1 case on their joint list that is more complex than mine and so the wait will be on the shorter side, when he wrote to the gynae he said they should meet to book in the surgery as a priority. Surgery will be a full pelvic clearance, excision of all the endo, removal of the dermoid, a bowel resection and temporary defunctioning stoma 😩

I have now been told the surgery is so complex that they need to get an opinion from the specialist endometriosis centre to see what their view on the best course of action is. Instead of giving this opinion they have just transferred my care to them, triaged my case as routine and told me I will have my initial appointment with their consultant in 4 to 5 months. I’ve basically been put right back to the start 😭😭😭 with my worst case scenario hat on, if I see them in 5 months and then am added to a surgery wait list that is 12 to 18 months as most of them seem to be then from GP referral to treatment it will be about 3 and a half years! So much for the 18 week right to treatment as per the NHS constitution eh?!

note: I already complained to PALs in October 2024 and am waiting on the cursory apology letter from the trust about waiting times. Have also emailed my MP today.

[Msunited Moderator Moderator]

Your frustrations relating to your journey are valid here, thank you for choosing to share them here today.

You could inform one of the nurses via this email [e-mail] who will aim to give you clinically informed written response within 3 - 5 working days

You could also book in a call which might be better suited here, as you have expressed the need to candidly share your thoughts - a call may be more personable to your journey moving forward.

endometriosis-uk.org/nurse-...

I hope this helps and that you begin to experience positivity from here.

[RedCat24]

I feel your frustration 🫤 October 2022 I started having problems. Gas light by NHS got refered to specialist Dec 2023 saw a "endo nurse" dec 2024 who shut all my symptoms down said its unlikely endo but will do me a mri. I know it's endo, I went private in June 2024 and endo was found. It's frustrating 😒

[BloomingMarvellous]

From what you've outlined here I am asking are they not a Specialist centre themselves ? Because, from my understanding that level of complexity should always be dealt with via such a BSGE centre according to NICE guidelines .

[Cbol82 in reply to BloomingMarvellous]

I didn’t know that was a thing. I’ve just been on the BSGE website and neither my original hospital nor the specialist centre I’m now waiting on are on the list

EDIT : it is on the list, it just didn’t show up on the name so searched in the region instead. So the consultant has done the right thing in asking for their opinion on whether my care should be transferred to them, just very frustrating that I’m effectively at the back of the list again

[BloomingMarvellous]

I get that, I still don't understand why they thought they were an appropriate choice at the outset for your surgery if the original place was t a BSGE centre. If they aren't they are not operating per NICE guidelines and have caused an unnecessary delay in referring you on. That is a legitimate reason to raise a formal complaint and seek proper resolution. If that's not the case then the delay is simply a deeply unfortunate and painful experience for you which sucks.