Hi everyone, I was diagnosed October 2022 2b cervical cancer. 6 chemo 25 rads and 4 bracky. Finished treatment Feb 2023.
Now 2025 and feel quite low and alone
After treatment my bowels have been horrendous, constant constipation, always need to pee... Tried senna etc I end up having accidents so oot out of that one, now I'm just living with it
My pelvic region at this time is still as sore as bk then. This has now reduced my mobility almost to nothing. Back pain is so unreal. My brain only what I say half functions. As I'm now in cognitive so therefor can't work either. My anxiety is through roof.
I didn't quite understand nor was I told that this kind of damage could possibly be done. I now feel I only have an existence and not a life anymore.
My GP refuses to give me proper meds, he says to re train my brain via pain and to buy a tens machine.
Sorry for long poor me post, but just wondered if anyone has same problems, and if anything different worked for you that I could possibly try.
Thanks for reading, and my apologies again
Hi Bizzy and welcome to our group.
Your life certainly seems to be very difficult post treatment, and I can definitely identify with at least some of the issues you are having.
You mention speaking to your gp, but as you should still be under the care of your cancer team if you are in the UK and still be having check ups, I’m wondering if you have spoken to your consultant at any of your follow up appointments? They might be better placed to help you than your gp.
I’m particularly concerned that your pelvic pain is as bad as it ever was, and that you have such poor mobility. That should definitely be investigated. I have very bad hip and back pain myself, but scans and recent x rays have confirmed that I have severe osteoarthritis in my hips, back and knees so my next appointment is with an orthopaedic surgeon in September.
I have decreased cognitive ability, but that is due to having had a stroke in 2024, so at least I know the reason for it and it was not due to my cancer. I also suffer from anxiety but my gp has prescribed medication which is helping with this. He believes that my constant pain and lack of mobility has had a detrimental effect on my mental health and is keen to work to resolve both my physical issues and my mental health. I’m sorry your gp has not been as understanding.
I was already retired, so didn’t have to worry about work, but as you are not working have you made sure you are getting all the financial help you can claim? I’d recommend calling the Macmillan support line (number is in my signature) where you can speak to an adviser who can go over your financial situation and advise on any other help which might be available.
But as a priority I’d try to get an appointment with your consultant, especially if you are not due a follow up appointment soon. They can refer you for further scans if they think that’s required, help with pain relief, and if there is a late effects clinic at your hospital, that might be somewhere else they can refer you to which could help.
I was also stage 2b at my original diagnosis, and I have developed multiple issues since my treatment ended and I had further surgery for a recurrence. All of these issues have been pretty debilitating, but none have been caused by my cancer recurring. However, they have all needed treatment of some sort.
Please don’t continue to suffer like this. It’s clear from what you’ve said that you need help, so please pick up the phone-call Macmillan, and call your CNS to ask for an appointment to see your consultant so you can tell them how bad things are and try to get some answers. Do you have support at home? A partner or family and friends around you? I understand that this is a lonely place to be, and I hope you can access some further help. We go through a lot during treatment, but most of us can emerge from it perhaps with a different life, but a better one than you are currently experiencing. Please let us know how you get on.
Sarah xx
Thank you-yes, there have been a few times I’ve just thought “what now? Just give me a break!” When things have been particularly hard, but I’ve just got to keep going.
My gp surgery has not been very helpful at all with issues I’ve had but then I saw a new gp and he was amazing, so I asked for him to be my named doctor, and this was agreed. He listens, and I trust him so that’s huge progress for me! I hope that a letter to your gp might help progress things. Nerve damage is very difficult to deal with, and treat, but there certainly are medications which can help-my OH has a herniated disc and sciatica, but did get different prescriptions to try and help.
I do miss seeing people and being able to get out. I have a power wheelchair, but cannot get it out of the house by myself, and the pavements where I am would make it difficult to go anywhere, plus I can’t drive. So I’ve been trapped in the house for the last good few years and can’t even get into the garden on my own, so I know how isolating that feels. It’s a big change not to be able to get anywhere at all, but I’m hoping if I can get a new hip, then that will make things much easier.
I really hope that things will improve for you and you can start to enjoy life more-we deserve a decent quality of life after what we’ve been through!
Sarah xx
Hi Lesley
I definitely found it hard to get support in the immediate aftermath of my surgery, but I was discharged from hospital on the day the first lockdown was announced in 2020 so that was the excuse/reason given in my case. But I think earlier help would have definitely improved my situation and I might not be in this position now. However, I’m grateful I’m now getting some help.
Did your oncologist not offer you any further suggestions other than writing to your gp? Did you have an examination? I always get a copy of letters sent to my gp from my consultant so at least I know what’s been said. I hope you get a copy too. Considering the severity of your symptoms, I would have thought more might be done rather than assuming this is nerve pain, which is really difficult to live with and is difficult to resolve, even with medication at its highest dose.
I was fobbed off about my hip and back pain after my treatment in 2018 and I should have pushed harder to get it investigated further, but I felt I’d been through enough at the time with chemo and radiotherapy so I didn’t pursue getting a bone scan etc. My osteoarthritis was picked up on a scan I had for my bile duct in 2023, but no-one told me, so I’ve been left to get worse over the last 2.5 years. My new gp found a note in my records confirming it when he was checking through everything, but this hadn’t been followed up- I’m pretty annoyed about that!
It’s really difficult for us when our lives have changed so much that we’re housebound and it’s very isolating. If you don’t find out soon what is in this letter to the gp, I’d contact them and ask about it and say how bad things are and that you’re looking for help. I’ve learned we need to speak up for ourselves, or we can fall through the cracks in the system.
Sarah xx
