Delayed surgery

[Exw1]

I've started to get more and more depressed about my excision surgery being delayed. I completely understand the reasons behind the delay but that doesn't help with the pain I'm in. I have now been waiting 11 months for my operation which was due to take place in July or August. When I found out that it would be delayed my family helped to find the money to have the surgery done privately because the pain is having a significant impact on my life and because I'm on Prostap. The Prostap has helped over the last year but since having to change from a monthly to 3 monthly injection due to the pandemic I am now in bed most days. The private hospital isn't allowed to have private patients at the moment so although I'm booked in I can't have the surgery through them either. I have now been told that the waiting list is going to be around another 8-12 months on the NHS.

I feel guilty for being so disappointed but the surgery was the only thing getting me through the day. Im also anxious to find out whether this has affected my fertility as I am stage 4 and I'm 24 (the specialist was going to check everything during the surgery). I don't know how to cope and I feel like I can't talk to my partner or family anymore because I am constantly complaining about the pain and I feel like such a burden. I just don't know what to do anymore.

[Noodle31]

I know exactly how you feel and I am also waiting on my much needed, long awaited surgery. The only thing I can suggest is that you stress the urgency of this with your doctor. Being a stage 4 endo patient (known) you really should not be waiting another year for treatment. My own urgent op for a cystectomy and finally dealing with the stage 4 endo I have suffered from for most of my life was cancelled at the very last moment back in March, and I'm now on a different waiting list. So after almost 20 years struggling for a diagnosis, still no treatment. It is psychologically tough of course and physically painful. I have had my GP stress the seriousness of this with the NHS and also been looking at private options. I know Covid is serious but I do think a lot of people are losing patience with how seemingly nothing else is really meaningfully being treated right now, particularly as we cannot even pursue private treatment options. Again I am so sorry - and all I can suggest is persistence. Many of us are in the same boat. I wish I had a solution.

[Exw1 in reply to Noodle31]

I'm really sorry you've been waiting so long and the operation has now been cancelled. Hopefully the waiting list isn't too long. I have spoken to my GP who has said I'm on the strongest painkillers he's willing to prescribe but he is going to write to the specialists team to see what can be done. Thank you for your advice

[Afrohair]

So sorry your struggling I’ve been waiting 13 months just for a referral for a op I had been getting on at my gp as they said it wasn’t going through electronically for months then covid hit I’m stil waiting just for the referral no signs of things moving here yet I’m still wondering what to do I can’t afford private or would have done it ages ago x

[edonn]

Hi, first up, I hear you! We all hear you, and if nothing else improves for you today, know that you are being listened to by lots of people. Many will have read this but don't have time to reply or themselves feel too upset to reply, but I promise they feel and share your pain.

I am so sorry for your delay, we can't change these things right now but it's heartbreaking.

Only thing I wanted to advise is to almost forget about the fertility thing right, not everyone's fertility is affected by this, or if it is, it's often resolved.

And don't panic that as Stage 4 it guarantees that you will be affected. Plenty of Stage 1s have worse fertility effects than Stage 4. I'm not taking from the staging seriousness here, I have Stage 4 endo on my bowel still, I hear your concerns and I too await excision and a bowel resection in few months. But the staging isn't directly proportional to suffering, to effects and the consequences on other things like fertility.

Right now, genuinely, all we can all do is try to breathe, trust that things will work out...and from time to time keep that chase on. Understand where you are on surgical priority list, understand how you can be updated maybe a bit more or who you can speak to, for support while you do wait.

Anytime you feel alone, or feel you can't talk to your partner or others, just pop on here and read these lovely replies I see you have already had again. Take care of yourself, feel well soon and don't give up, you are so strong to get even this far, I promise there's more fight in you than you realise