Not put on surgery waiting list for almost a year after MRI confirmed stage 4

[moonghost]

Hi all,

I feel really alone and depressed right now about my endo. I was rediagnosed with stage 4 deep infiltrating endometriosis, one about the size of a satsuma, by MRI in December 2021, a year after my first lap (done privately - but cannot afford to spend £5k a pop). My results came by phone and letter and I was told surgery would require the presence of a colorectal surgeon because of bowel adhesions.

I didn't get to see a gynecologist until May 2022, and I thought I'd been put on the waiting list then as surgery had been recommended. In October 2022 I met with my colorectal surgeon for the first time, and he referred me for a sigmoidoscopy (clear).

I'd had another letter informing me of a phone appointment in mid October 2022 - only then did I learn from the person who called (not a consultant, possibly a nurse from the gyno department?) that I hadn't been on the waiting list at all until that moment. I was told waiting list is at least 6 months. So now I'm 14 months out from my diagnostic MRI with no surgery date in sight, and I feel like I'm in limbo. My period has become a monthly horrorshow of deep depression that takes me weeks to get out of - and then it's back again. Is there anything I can do to find out when my surgery might be at least?

[BlueGiraffe9]

So I was in similar situation but didn't realise they calculate your wait time from when you are first diagnosed. The wait time was 1 year where I was. I was added to list in Sep 22 and has op Jan 23 because I was initially diagnosed Sep21. So may be worth asking if that's the case where you are.

[Lemoncake95]

Hi I'm sorry to hear about this. I'm also diagnosed with stage 4 endo, after a diagnostic laproscopy. Please can I ask where did you have the private surgery and do you recommend them?

[Sickofendometriosis]

Hi Moonghost, I created an account here specifically to message you as I am in the same situation. I had a diagnostic lap at the start of Nov 2019 (after waiting months and months for that) and an MRI in Dec 2019. My endo is stage 4 DIE. It is basically everywhere it can be, too much to type out but my bowel is badly damaged as a result, I will need part of my bowel removing. I also have adenomyosis and bilateral endometriomas. I am now having symptoms of thoracic endo, struggling with chest pains and breathlessness.It took from Dec 2019 until Feb 2021 for my MRI to be discussed, at which point I told I was put on the waiting list for surgery.

I heard nothing since. I complained to PALS in Dec 2022, after struggling with vomiting and extreme pain each time after eating (but I also have a 14 year eating disorder which makes things more complicated as they interact poorly). PALS were fantastic, and as a result of their interaction I was given an appointment this week, where I was told that I was put on the waiting list for surgery only this Jan, 2 years after they said I'd been on the list. I thought all this time I was on the waiting list. Given it's a progressive disease obviously it's really disheartening, but the doctor said basically it doesn't matter that my MRI is over 3 years old because it can't have got any more severe because it's already stage 4, the treatment won't be different but they'll probably just have to remove more of my bowel.

I am considering making a complaint to the hospital as being at the bottom of the waiting list after all this time feels really unfair. It is a depressing situation to be in. I've had severe clinical depression for most of my life anyway but there's no question the endo stuff makes it worse so can empathise with you.

I just wanted to say you are not alone in this situation, I have no advice other than contacting PALS as I have found them exceptional. Sorry you're suffering too.