Hi, first time posting

Hi Hal,

 I just want to welcome you to the forum although I’m so sorry that you have this diagnosis and such pain.

It certainly sounds like you are really suffering with the location of the tumour and feel for you. It’s such a difficult time for you having received the diagnosis and not yet having seen the oncologist.

You say that some of the pain is nerve pain and I know this is particularly awful. 
I wonder if you can be prescribed pregabalin or gabapentin on top of your other medication as these are used for nerve pain. 

It definitely sounds as though you need a review and I hope you are able to access this quickly. 
Also hope that you have been given some stool softeners to help with the constipating effects of the oromorph and dihydrocodeine. 

Hoping you get some relief very soon.

Sending hugs x

Hi Hal

I just had to reply to your post as your symptoms sound so much mine was!

I am now nearly two months post treatment but before treatment and indeed before diagnosis I could barely sit down comfortably and walking was a  nightmare! My tumour was 4.5 cm and across the sphincter from 1 o'clock to 7 o'clock,  so I was well and truly up the stream without a paddle if you see what I mean! My colorectal nursing team sent me to a pain management doctor and she (wonderful lady she is) recommended Pregabalin, I had to start on a low dosage and gradually work up to where I couldn't feel the pain, which for me was the highest dose of 600 mgs a day. I take 200mg in the morning and then mid afternoon and before bed. The pain before felt like someone was shoving a sword up my bottom and twisting it round and round, this was after I'd been to the toilet, that lasted for an hour or so and then it faded into a burning pain which could last for hours! I really didn't know which way to turn. I often cried myself to sleep and I'm not a "cryey" type of girl.

But after I started taking Pregabalin I was no longer in pain. Pregabalin works on nerve pain, it was definitely the answer for me.

Now after treatment I am in a different world altogether. The treatment definitely works, although it is tough to get through, I won't pretend it isn't  but it is well worth it in the end. I've just had my two month check up and the doctor did a physical examination and said she couldn't see or feel a lump!  I'm feeling good about that, but will wait until my MRI  scan in May to find out what it going on.

I really hope this helps you get pain free.

Sending you cyber hugs

Jeenie2001

Hi Hal,

Sorry to read about your diagnosis and pain.  I'm in a similar boat, also waiting on treatment regimen and date (I am seeing oncologist tomorrow).

I've also had excruciating pain for the past couple of months but it is now somewhat controlled. I have been back and forth with the GP over and over again until we finally seemed to have it at a manageable level.  I'm taking 10mg modified release morphine twice daily with 10mg oromorph up to 4 times a day for breakthrough pain and regular paracetamol.  I have also been prescribed naproxen but I don't particularly like taking them because of the gastro risks. 

Please go back to your GP and ask for something else.  I really struggled until they finally gave me the M/R morphine, that mostly keeps it at bay and lets me function through the day and although I'm certainly not pain free I have managed 2 full nights sleep for the first time in months, which feels like a massive win.

Hope you get to see your oncologist soon and you aren't waiting long for the treatment to start.

Sending hugs x

Hello Hal,

Another welcome post, and although it seems a long way off I am pretty sure once your tumour starts responding to the treatment you will hopefully find that a huge relief. 

I just wanted to comment in reply to a couple of mentions here that I have been prescribed Naproxen but my prescription always comes with Opremazole to protect the stomach, as they seem to be aware now of the gastric side effects, so something to bear in mind.

I was also recently prescribed codeine (broken leg!) and when I collected that from chemist, it also had Opremazole with it, so perhaps becoming a standard practice when prescribing some painkillers.

Hi Jennifer,

You are describing exactly the pain I am experiencing. Did you also have other pain killers with the pregablin?  Oramorph, codeine etc?

I am going to the GP today. You have given me hope. Thankyou

Hi Hal,

Just to say that I hope that you had a successful pain review with your GP and hopefully were prescribed something for nerve pain. Pregabalin can be taken alongside other pain medication as it works differently.

Everything crossed that you were able to access some help for your pain.

Sorry just realised the predicted text changed your name to Jennifer when I replied to you. Doh!