Pain 'attacks'

Thank you, Irene. I am considering it. The surgeon who carried out my sigmoidoscopy has apologised and raised an internal investigation, but he said he's aware that doesn't really help me personally... it may help others in the future tho xx

Hi JenW,

Your situation sounds incredibly frustrating. Such a long journey to diagnosis, which seems to be quite common, but now that you have your diagnosis you are having to battle for pain management. All so exhausting and stressful. 
As it’s the weekend you have been left with no options other than considering A&E which seems so unfair. 

While there is often a wait for treatment to start while all the scans are being carried out, you shouldn’t be having to suffer uncontrollable pain in the meantime.

It does sound like you are going to have to be very assertive with your GP tomorrow morning. Wishing you strength for that but feel sad that you’re having to push while feeling so awful.

xx

Thank you... will just have to see what they say tomorrow. Just want to get on the path to recovery and be done with all this xx

It’s disgraceful JenW that you’re struggling to get prescribed adequate pain relief! Forgive me if you’ve already said in another post but have you seen anyone yet from what will be your treating team? Oncologist, colorectal surgeon or specialist nurse? If so I would totally bypass your GP & give them a call, it’s plain silly that they’re so reluctant to help with your pain. 

It was pretty awful at the time but I’m doing well thank you, I’m almost 7 years post treatment & living life as I did prior to my diagnosis just with a little more appreciation for everything & everyone in my life. 

Don’t take no for an answer whoever you speak to about your pain. If you feel up to it let us know how you get on. 

Nicola 

Ah, I'm glad to hear that, that you are out the other side and doing well

I have a number for the colorectal nursing team and should be seeing the oncologist within the next week  just waiting on that call for the appointment xx 

Hello Jen, 

This is not acceptable, honestly it makes me so cross when I hear about GPs being awkward about AC pain and misdiagnosing etc. Like Irene says, you might want to escalate this once you are better.

In the meantime, definitely get back to someone from the team who are looking after you and explain that you are in severe pain at night, and they will take this more seriously. They understand what it can be like in this pre-treatment stage. If you really have no luck there, try Macmillan. They will support you and point you in the right direction at the very least.

I also found that the pain eased off loads after a few days treatment, so at least you know some relief is coming, although that's not much help in the middle of the night.

Wising you success in getting the relief you deserve. xxx

Thank you, Irene. I'll let you guys know how I get on tomorrow. Hoping for a better night tonight, but it's completely unpredictable as to how bad it gets. Have been waking through the night for literally months needing pain relief. Can cope with that as long as it doesn't flare up to the extreme, as it did last night honestly, I'd be getting more sleep with a newborn  xx

Hi Jen,

Hoping that you had a better night and just wanted to wish you strength for getting something sorted for your pain today either through the colorectal team or GP. Don’t take no for an answer.

xx

Thank you... managed to get a telephone appointment booked with the GP this afternoon. Last night not as bad as the night before, but still taking tabs every few hours. Also tried a hot water bottle on my lower back before sleep and that did seem to soothe a little. Xx 

Hope this goes well, keep us posted.

Seems like GPs don't come across AC very often and for all the dozens of people with piles and fissures they see, they really have to keep in mind that one of them might be cancer. 

Glad you are getting a little relief, but as someone on here said a while ago 'The squeaky wheel gets the oil'

So be that squeaky wheel!