Endometriosis UK
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Struggling with Post Op Anxiety

I seem to be struggling quite badly with post op anxiety and wonder if it ever happened to others and if so how they coped.

I think it may be to do with the emergency readmission with meningitis into the NHS hospital 3 days post op as it was traumatic and stressful and I was not well looked after. I was often left dehydrated with no drip sometimes left waiting hours for pain relief and sometimes forced to take medication I wasn't meant to or not given what doctor had said I needed as my notes weren't updated, or the nurses just swamped and understaffed.

It's manifesting itself in anxiety about taking any medication and stopping me taking pain relief for fear of side effects, overdoses, or harm to my operated on areas or organs. Which then gives me insomnia as the pain is bad at night. I know it's stupid and irrational but I'm really struggling to get it under control....any advice very welcome....

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Given the circumstances, I think everything you are feeling is perfectly normal and understandable. You are also still very close to the surgery and I'm sure you already know that this will get better given time. I have only just reached a point now where I feel able to start making formal complaints about the treatment I received both at the bsge centre (where they forgot to fit my pca after the hysterectomy and sent me to the ward with no pain relief, and it took hours for them to get me pain relief after I first started asking for it) and at my local hospital (I was admitted 2 weeks post op after losing a litre of blood from the vaginal wound - they packed the wound and forgot to put in a catheter, and the nurse on the ward spent the whole night telling me it was just a UTI when I kept buzzing her because I was in pain and couldn't pee). TBH I don't think I have fully processed any of this yet, as I'm not ready to really face it.

I have been having a lot of appointments with the nurse at my GP's surgery who has been giving me some unofficial counselling and helping me to cope with everything and this has made a big difference as there are a lot of things I can't talk to my husband about as I know he would listen but he would be dreadfully upset by them - is there someone at your surgery you can talk to? It might also be worth speaking to them about the pain relief situation and seeing if they can find something you are comfortable taking as not sleeping will only make things worse.

Please keep talking on here if it helps.

Thinking of you. x.

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Wow Jo I'd no idea your surgery and hospital treatment was so poor and traumatic! I'd not have coped coming round with no pca. No wonder it's all taking time for you to process X

Thank you for the support as always and thinking of you X

I'm waiting on a counselor I found privately but it's still 3 weeks away. My GP surgery had a lovely lady nurse which I start to see but became too overbooked and was off all summer getting married.

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It was really, really sh*t. I ended up absolutely hysterical on the ward (which was full of visitors, obvs) and it still took another hour before an anaethetist showed up and even then it was only because there was a shift change and one of the new nurses made a proper effort to sort it out. Then they gave me oramorph (FFS) which I had to buzz and ask for. At one point in the night I asked for it and it took the duty nurse an hour to bring it. Really, really horrible. I am just glad that my husband wasn't there to see it. Throughout all my hospital experiences I have found pain management to be a problem but that really did take things to a new level.

Glad to hear you've got some counselling coming up. You're doing all the right things and it will get better. I know we look fine on the outside, but this is an horrendous, serious disease, especially once it becomes severe and it's right to feel everything you are feeling. x.

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Shocking. That sounds simply horrendous! Hubby saw some and my care would've been worse if he wasn't there so much chasing doctors and nurses. Being in a side room meant he could be there longer than normal hours. I'd have totally lost it otherwise I think after the lumbar punctures.

Yes it's a long old haul and a real battle of resilience isn't it.

Take care of you xxxx

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Not suffered from anxiety issues myself but known people with this issue. I think it may get worse if not treated by therapy/ medication. Most private insurance will pay for 10 rounds of psychologist consultation. Maybe could look one up?

Mental health issues are as important as physical ones. Don't bottle it up and get treated as soon as possible.

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