Waiting 18 months for ‘urgent’ surgery

[confuzzzzzled]

Hi all,

I’m at a loss at what to do. I’ve been waiting for 18 months now for an urgent laparoscopy for stage 4 endometriosis. I can’t cope with the pain any longer, and I’ve been TTC for 5 years with no luck now, I’m really counting on this surgery working, but the longer I’m waiting the worse my condition is getting. I feel like my life is on pause waiting for this. I can’t cope mentally or physically for much longer.

is anyone clued up on what I can do to speed this up? I’m on the short notice list with the hospital. Do I have any rights? I was supposed to get surgery within 16 weeks, surely something can be done???

Anyone?

Sounds awful for you! Could you possibly get your gp to write a letter explaining how it's affecting your quality of life? Surely the pain must be making you depressed?

@davegrohll My GP has already wrote to my consultant a few times and I’ve heard nothing back, looks like it’s just a waiting game!:( . I’m sooo depressed and feel like I have no quality of life, anti depressants do help slightly though.

This is awful and I completely get the waiting game ttc with medical issues. Not sure how you can speed anything up but just wanted to say it’s shit and you are within your rights to be frustrated. Sending a virtual hug and hoping they give you a date soon

Not to be the voice of doom but from experience 18 months would be optimistic.

Have you looked at going private, I don't think it's a very expensive surgery. Could be worth a small loan if it improves your quality of life.

I don't say this lightly either. I know the pain it causes

@thinkponk48 i did look at private but the only endometriosis specialist in our area is NHS only. I’ll also need a bowel and bladder specialist in the room for my surgery as my endo is so far advanced and I think I’d struggle to get that sorted through a private hospital 😞

Hope you get sorted out soon, sounds really tough

I'm sorry that you're struggling, if you can't afford to go private then I'm afraid you will have to wait for the nhs. Nhs is prioritised by need, and unfortunately other people will be much higher priority-there will be lots of people waiting for life saving/life prolonging surgeries, so whilst it's really awful that you have to wait in pain, you don't really have the 'right' to jump the queue. Sounds like you've done everything you can though-its good you're on the short notice list

Have you contacted PALS?
Have you put in a formal complaint to the trust? This is a good thing, we need complaints to show people are dissatisfied and why, it build cases for funding / training / expansion - everyone should be complaining.
Have you contacted your MP?

I waited 15 months to get a giant fibroid the size of a 7 month pregnancy removed, it's standard. Hope you get it soon 🤞🏼

I’ve contacted pals about 5 times, written to my MP and I’m now in the process of filing a formal complaint. My GP has also contacted my consultant too to let them know my condition is getting worse. I can’t believe that two 7cm cysts on my ovaries, ovaries that are stuck together behind my uterus and endometriosis all over my bladder and bowel isn’t seen more urgently to be honest. I’ve been told that I’m top priority just underneath disabled patients and those with cancer. Not a single peep out of the hospital in 18 months though despite me telling them I can take a cancellation date at short notice.

I’m sorry to have to say that l had endometriosis at this stage and had to pay privately the sum of £6000 back in 1996 . Sadly for me at this time children were not an option for me. Hope you get some treatment soon.