Absolutely exhausted and feeling low

[Cmg1978]

I'm currently awaiting another surgery to remove endo from the bowel and top of the vagina and I'm feeling really low at the moment. I get home from work at the end of the day and I head straight for bed as I'm absolutely exhausted all the time, I don't have the option of reducing my hours as my husband is disabled and cannot work so mine are the only wages coming into the house.

I was told back in February that I needed the surgery and as yet I still haven't had a date through despite having had my pre op at the beginning of March and it's getting very close to the nhs 18 week waiting time directive, I've tried to call the hospital to find out what's happening but I've been told in no uncertain terms not too call them to chase it that I've got to just wait and be patient.

Today I'm tucked up in bed as I was sat up all night in agony, really just feel like I could cry today. Sorry to ramble on just a bit emotional!!

[Simo7]

Cmg1978, sorry to hear you're feeling so low. Do you have your surgeons secretary's email address? Maybe you could send an email stating that you know you shouldn't contact but that your situation is desperate & could you be put on a waiting list if anyone cancels? It helped me get seen quicker once & maybe worth a try. Are there also any benefits that you could apply for? I know from experience that it's more hassle than it's worth sometimes but once they've processed any claim it maybe at the time that you have to take time off for your operation so may help in the future.

It is so frustrating & even more so in your situation. My partner is the only breadwinner in our family because of my endo', we don't get benefits & it's a struggle for him but he doesn't have a health condition to contend with like you do. Life is rubbish at points! Feel for you. Rest as much as you can & try to simplify everything else that you have control over, food preparation, cleaning etc.

lots of healing to you, sorry couldn't offer any better help! X

[Cmg1978 in reply to Simo7]

Thank you kellysims for your reply. I told them at the pre op that I would take a cancellation and that's all on my notes, I know it's awful but every day I pray that someone will cancel so that I can have it done. They're saying the reason they can't give me a date is because they don't have a bowel surgeon!!

We've looked into benefits before but we're not entitled to a lot so it would fall short of what I earn now, when I have the op I'll get 3 weeks paid sick but anything after that will be ssp only. Which means saving as much as I can now to tide us over when it happens so that I don't feel pushed into returning to work too early. Until they do the surgery they don't know if I'll need a colostomy bag or not so recovery time is a bit vague at the moment.

I need to stop stressing myself out so much about it all!! Thanks again for your reply xx

[Simo7 in reply to Cmg1978]

Looks like all bases are covered then, I won't harp on but it does pay sometimed to let them see you as a person & not just a name on a list. Bless you, it's so hard to not stress, especially when you just want to get on with life without pain...not much to ask! What about painkillers, upping dosage or changing them may help?

Wish you well xx

[hanlouxxx]

Hi,

I think it's terrible they've told you not to contact them.

My consultant told me my surgery date would come quite quickly but when I spoke to the bookings office they told me it would be months, although they did say to me to keep calling them for updates.

In the end I couldn't cope with the pain or the thought of having to wait any longer. I contacted the specialist nurse by email and also sent a letter to my surgeon and they managed to bring the date forward for me. I would suggest you write to your consultant and explain things have got worse and it's effecting your day to day life. That coupled with the fact you have dependents should give them good reason to look at your case quickly.

I have learnt over the years of dealing with this condition you need to be persistent with them otherwise you will keep getting put off. It might even be worth visiting your GP and having a chat with them.

Hope this helps and you feel better soon xxx

[Cmg1978 in reply to hanlouxxx]

Thank you for your reply, it's just so frustrating that we have to battle with them all the time. I have spoken to the consultants secretary as well and she told me I just need to be patient....!! I see a pelvic physiotherapist and she's been trying to help me get a date but even she's frustrated by their actions and remarks. If I have a date at least I'll have something to work towards and can make sure work is covered and that my husband and son are sorted out so that I can focus on myself for a bit!! I appreciate the support, none of my friends really understand my frustrations so I've stopped telling them. Thank you xx

[Itsback]

Liase through PALS ( patient advice liason service) . That's what I did. They helped chase up my op date . I was so fed up being passed from one person to another . I felt like I hit a brick wall as it had gone to funding panel and I didn't even know if funding had been agreed. Whilst I sat in agony and despair I felt my life was on hold. PALS sorted it out and the hospital phoned me with an op date.

[Itsback in reply to Itsback]

Every hospital has a PALS department as they deal with complaints are there for support to help patients and their families x

[Cmg1978 in reply to Itsback]

Thank you I'm going to email the pals department at my hospital and see what they can do to help x

[Itsback]

I know it's not easy. I was still working literally fulltime with 2 children. Thinking back I think I was just on auto pilot "looking forward to my op date" Not may people an say that. I kew the op was the only way out. Pals were lovely , they supported me when I didn't know what to do. My gp was helpful to.

The extent of my pain was recognised until in theatre. I suppose because I had too induction births and always suffered with gynae problems I put up with it. My instinct told me to push for my date as things were getting worse. The secretary did try to postpone my date for "Another urgent case". We discussed the matter and in the end she agreed for me to keep my date on grounds of my pain, my husband having booked time off to be my carer and childcare. Major surgery takes planning . Luckily for me I had my op when I did and my ovaries, tubes, appendix didn't rupture. I'm not bitter. I view life differently and I'm grateful for what was done for me . It was horrific at the time so I know how you're feeling. I thanked PALS post op and updated them on what had happened.

[Cmg1978]

I emailed the pals department today and the lady is going to look into it for me so just got to wait and see what she comes up with, thank you all for your replies xx

[Cmg1978]

Quick update the pals lady looked into it and told the waiting times manager (the one I spoke to a few weeks ago who told me not to ring again) and told her to look into it and sort it out!! The waiting times manager told the lady from pals that she would do it immediately and then call me directly......so here we are a week on from all this and still no call!! I'm 3 weeks away from breaching the waiting time directive and no further forward!!!