Pain after treatment finished

Hi everybody, hope we’re all doing well. Just after a bit of advice. I’m currently 3 months post treatment for cervical cancer and whilst my symptoms had seemed to improve, over the past 3 weeks I have started with bad abdominal and lower back pain again. I do try to rest up as much as I can but it’s got so bad that I’ve had to increase my pain medication to what it was during treatment. I’m so fed up with being in pain, makes me very unhappy that I’m not able to go out much or do anything. I’ve now had all my follow up scans and I go for my outpatient appointment with my consultant on the 22nd of September. I’ve spoken to my GP about the pains and he just said to stay on what I feel comfortable with but there was no concern there despite my past medical history. Has anybody else been through this regarding pain, particularly reoccurrence once things seemed to have settled down a few months after treatment ended? I would appreciate any advice to try to find out just how long this will continue for as I’m not sure I can take much more of it. Thank you :two_hearts:

Hi Carly,

I finished my treatment about 3 months ago too. I feel well overall but like you I do still get pain. Mostly cramping and gas pain. I don’t have to take pain meds for the pain but I do notice it every now and again. It seems to be the worst if I have a drink, am stressed or anxious and after eating and in the morning. I get cramping near the biopsy site where my lymph nodes were effected and occasional pelvic pain and watery discharge/leaky urine (I honestly can’t tell the difference at this point). And the menopause makes me much more sore and achy, which I’m not used to yet. The post treatment side effects are a bit scary. I get my first post treatment scan in a few weeks and results about 2 weeks later so I suppose if there is anything funky going on, I’ll know then! I think our minds tend to overreact to pain after going through what we have gone through! Have you had your post treatment scans or seen your GP for the pain? I hope everything is okay and it’s just the side effects of treatment!

Hello, lovely to hear from you and thank you for replying. From what you have said I have been experiencing the exact same things, I suppose at least I’m not alone in this, not that I’m happy you are in pain, etc. I’ve had to buy incontinence pads and struggle holding it in and have wet myself a few times trying to get to the toilet. The pads work really well though and stop me from getting into embarrassing situations :woman_facepalming:t2::joy: Nothing really prepares you for all of these post treatment side effects. I get the abdominal pain daily, much worse first thing in the morning and later in the evening. I’m on slow release morphine and also oramorph to have when needed. I had managed to step down off the oramorph, but the last 4 weeks I’m back on it. GP has told me just to continue on the pain meds and have what I need. To be honest he keeps fobbing me off to the cancer specialists saying they know more, etc. Thankfully my cancer hospital, The Christie have been fantastic and I’ve recently spoken to macmillan nurse there who has sent email to my GP to tell him to start me on HRT as should have been started weeks ago and she’s also going to find out more about my pain relief, etc. At least it feels like somebody is doing something. I had my post treatment scans - PET and MRI last week, have my follow up appointment with my consultant on the 22nd Sept. Just keeping everything crossed that they’ll tell me I’m in remission, attempting to remain positive, which is difficult at times and I’m very scared. I hope you are doing ok and hope your scans go well for you hun. Take care and hopefully speak again soon xxx

Hello again,

You can send me a PM if you want and let me know how your scans go! :blush:

Keeping my fingers crossed for you!

Thank you hun :blush: Really appreciate that and your kind words :smiling_face_with_three_hearts::smiling_face_with_three_hearts:

Hi
I finished my treatment in january,chemo/rads/brachy and i’m still in pain.Mainly in groin,hip and abdo. On slow release morphine and oramorph and many other pain relief tablets. One said it was nerve damage from radiotherapy,now they have decided its nerve damage from the cisplatin chemo.
Been to physio and hydro therapy.Got quite a few exercises to do,sometimes it seem’s to help.Been waiting to see pain team since referral on 20th may​:woman_facepalming: And got app with pelvic ostretics? I’ve been trying to get back to work and not to rely on walking stick so much.:anguished::scream:Just so you know pain is on going for some people,as you say we all different. My consultant said it could disappear tomorrow or could take years,so a lot of scope there​:anguished:
So hang on in there xxxx

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Hi Carly,

I hope you’re holding out ok whilst awaiting your results. Isn’t it torturous?
I have an MRI on 20th September and I’m 9 months post treatment for stage 3c1.

I’m experiencing lots of lower back pain which is persistent and hoping it’s treatment related as opposed to recurrence. I saw you were being treated by the Christie, me too! They’re just wonderful aren’t they? Just the waiting times are so difficult.
Xx

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I had my treatment for stage 3c in February/March then 4 lots of Brachytherapy at the end of March…. I have been having sciatica like pains in my right bum cheek and my hip with pain down the outside of my leg… I have spoke to the hospital a few times about this and they haven’t really been worried……
Had my MRI on Tuesday and now waiting for 3 weeks for the results, I have been a wreck and haven’t stopped worrying, crying and having every thought go through your head…… Scan anxiety is real……
I was seen in June and was examined and they said they couldn’t see or feel anything but until you get those scan results it doesn’t make it any easier…

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I finished my brachy treatment in December last year followed by 5 infusions of chemo mix and had 3 scans after that, pet scan saying NED in April and MRI in July. For the last 2, 3 weeks I started having back pain when standing, walking and even a little bit sometimes when sitting or laying in bed. It’s pretty strong sometimes, I also have what seems like muscle pain in my arms, legs and bum cheeks, pain in my wrists, knees and ankles sometimes even fingers. Next week I have my MRI I’m just wrecked with anxiety, my doctor is pretty pessimistic about me and it is so discouraging, I try not to complain but it it so so tough, I struggle so much …

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Hi,

So sorry to hear that you’re having pains again, sounds really awful. Is it your GP or cancer doctor who appears pessimistic about all this? I only ask because my GP is useless, I only feel like I get taken seriously when I go to the cancer hospital. I do hope your MRI scan goes well, I appreciate how anxious you must be. Keeping everything crossed for you that all will be OK and please keep us updated.
Carly xx

Hi,

Awww I’m so sorry to hear that you have been in so much pain, its truly horrible. Are you on maximum strength pain relief you can take? It’s really not right that so many of us have to keep living with pain and the doctors don’t seem concerned. The waiting part really is the worst, those weeks just seem to drag. Keeping everything crossed for you that all will be fine and hopefully they can get to the bottom of this pain for you, no one should have to live like that. Please keep us updated.
Carly xx

Hi,

Apologies for not replying sooner. Yes the Christie really are fantastic, don’t have a bad word to say about them really. The standard of care is just phenomenal.

My results came back and was told that everything was looking good and as it should do which was great news. Then the following Monday I got a phone call to say that on one of my scans they have picked up an anomaly inbetween my cervix and bowel. They said it might explain why I’m still in so much pain and felt it warranted further investigation. I had some bloods done and my infection markers were up, so they have treated it as an infection at this stage, put me on a two week course of antibiotics. However I’m also going to be having a CT scan this coming Monday, along with more bloods on Thursday and an outpatient appointment on Thursday too. I’ve been on the antibiotics for almost a week and not noticed much change in my pain, has got ever so slightly easier today but nothing much. They did mention it may be an ulcer but until they do the scan, won’t know for sure. So I’m back to playing the waiting game to find out what else has been thrown at me.

Hope you’re doing OK? How’s your back pain now? Are your pain meds helping?

Hope to speak again soon and take care.
Carly xx

Hi,

Apologies for not replying sooner. How are you getting on now?

Mine is still around, I’m on the maximum pain strength I can have. They now suspect infection but are going to do further tests and I’ve been put onto antibiotics but they don’t seem to be doing much. So now I’m back to waiting to find out what’s going with me.

Like you, I would like to get back working and trying to live a normal life. I’m struggling to walk around the house currently, let alone walk outside.

Please let me know how you’re getting on and hope to speak to you soon.
Carly xx

Thanks Carly, luckily ibuprofen takes the pain away so I am just taking that everyday, but I just find it hard to not them dark thoughts come into your head and then I look at my little girl and my heard just breaks into pieces ……. It’s going to be a long emotional 3 weeks until my appointment…… even during my scan the guy said can you stop clenching your bum cheek and I said I can’t this is how it is…….

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Hiya.
I’m still pretty much the same with my pain. All my physio which i’ve been having seem’s to be doing something. It’s turned into an execise regime at the moment,ha ha. But an improvement,weaned myself off the oramorph,but still on morphine tab’s,but can’t have evrything.
Been to work for a few more hour’s,but did tire myself out again,so still trying to do too much,but we all do it.
Sorry they now think you have an infection,thats all you need on top of everything else.I hope they sort out what’s going on soon,try not too worry bout it too much,easier said than done.
A normal life seem’s a long time ago and along time to get back there. Not that i think we will get quite back to where we were,but we will keep plugging away at it.
Love and hugs

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Hi,

I can understand that, I have two daughters myself, although mine are 16 and 14, they’re still my babies.

Hang on in there with the pain and don’t be afraid to ask if you need something stronger. Also if you’re taking ibuprofen regularly, make sure you’re on something like omeprazole to protect your stomach from acid reflux and ulcers.

Keeping everything crossed for you hun. Here if you fancy a chat anytime xx

Hey, I am not from the UK, I’m from Romania and regarding this I have 3/4 doctors so far: my oncologist, my external radiation doctor, my brachy doctor, my gynaecologist and my oncologist insists for me to have a histerectomy but I haven’t found a surgeon to do it, only with Da Vinci robot and it’s very expensivee. Thank you so much for your kind words, it’s so nice to come here and connect with someone who gets it, people seem to be sure that after treatment you’re literally the same as before. Wishing that your scan will turn up good and your pain and infection goes away. Love and healing hugs :hugs:

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Hi,
That’s great news about the exercising and weaning off the oramorph. Also, well done on doing a bit more with work. I do know exactly what you mean, I’m forever doing things and everybody tells me to slow down and stop taking too much on. I’m not one for staying still, well, I never used to be.
Thanks for the kind words. I’m hoping they do too, get sick of feeling its one step forward, two back.
I know what you mean regarding a normal life. I think about stuff that went on last year when I had no idea about what was going to happen and keep wishing I could go back. Now all I think about it cancer and getting better from cancer so can have a future. You’re right though, not sure we’ll ever fully go back to a normal life but a happy normalish life would be nice xx

Here’s to a normalish happy life.

These thing’s are sent to test us. We can’t go back and i know it’s hard,but try of think of the future without the cancer and the thing’s you can do when this shit is over. I booked a holiday to the usa for next year,i’m almost packing ha ha ha!
Keep smiling xxxx

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