"Waiting lists for complex endometriosis surgery"

Positives:

Endometriosis Nurse & Consultant Secretary at BSGE, QEUH Glasgow. They're doing their best to constantly deliver bad news to people like myself and I imagine they are inundated with people like me who are unhappy.

Reason for posting: Completely fed up and depressed waiting to receive essential surgery, being told different things and how the waiting list is being managed.

Health Issue: Stage 4 endometriosis which is also on my bowel. 

Main Issues and why I've chosen to tell my story:

I have been suffering "officially" with endometriosis and all the symptoms it causes since 2017 when I became seriously unwell (sepsis). The Doctors treating me at the time thought this could've started when I had my caesarean a few years earlier. I had repeated visits to GP telling me I had IBS and depression.

I have had a few hospital stays due to infections, one of which resulted in surgery. I was "officially" told in 2022 when I met the disciplinary team that I would be put onto the list for complex surgeries. Due to all non cancerous surgeries being cancelled due to covid they couldn't tell me when I'd be operated on. This was the only and last time I have spoken to the team - the only person I've spoken to since is the Endo nurse who has been great and done her best.

At the time I was put onto the list (more than 2 years ago)  I was told I was 14th on the list - now I am 1 or 2 although there seems to be some confusion over this. That was 27 months ago. I was advised in summer 2022 that my surgery would take place in the autumn of 2022 - it gave me hope that surgeries were starting back up - this didn't come to fruition. I was then advised that it would likely be Spring 2023 however in early 2023 I was told that this would be unlikely.

Due to waiting that time (almost 1 year) I wrote to my MP who wrote to NHS Greater Glasgow and Clyde. My MP and I received a response from the Chief Operating Officer NHS Greater Glasgow and Clyde. They advised that they were aiming to reduce waiting times from 2 years to 78 weeks and that I would therefore probably be treated by autumn 2023.

I allowed the autumn period of 2023 to pass and again I asked about dates and was told the surgeries were only 1 per month and that spring 2024 would be realistic. 

In early 2024 I was advised I was 4th on the list and they were hopeful they'd have 2 lists per month going forward - that wasn't the case. I was also told in my last video call in February to get work organised , get my bag packed and I'd be contacted about pre-op date and surgery date soon. I was told at that time I was next in line so the next date would be mine. This filled me with delight that eventually I'd get the surgery to get on with my life. 

When I hadn't heard anything 2 months later I emailed again asking for an update to again be told I was next and a date would hopefully be soon.

In May I emailed again asking what was happening and I was told there was 1 person in front of me however an email had just come out to say this person / the list may be cancelled due to anaesthetics. I was then advised it would not be May or June.

So here I am in June 2024 and I have again asked what the situation is to be told the list did not go ahead due to anaesthetic cancellations and colorectal surgeons. I assume I am still 2nd on this list that isn't progressing.

I feel so disappointed and disheartened and I don't think those who are making surgery decisions are understanding how life is for people like me.  I was told at Easter the team have got to get their holidays so there might be delays, well I'm unable to go on holiday or plan anything  and haven't been able to for so many years - bearing in mind I have been unwell since 2013.

I really wish someone would investigate and sort out what is happening and get the list sorted so I can get my operation and move on with my life.