new pain

Hi Beyond terrified,

In the 3 1/2 years since my treatment finished I’ve had all kinds of obscure aches & pains. My bottom would get sore when I’d been sitting for too long, I had pretty severe coccyx pain, I also had the pain in my butt cheek like you describe which my oncologist said was almost certainly sciatica, I had sciatica on the opposite side too but that was typical sciatic pain where as the other side wasn’t. Hip pain goes without saying, I still have this & following a trip to the theatre last week my coccyx was sore again for the following couple of days. I still always mention these things at my appointments & both my oncologist & surgeon have checked for fractures etc., on my scans but apparently apart from the usual wear & tear there’s nothing to see! I would advise you to mention your concerns to your Dr’s at your next appointment just so these things are on your records. 

Nicola

Thanks for that Nicola, that makes me a feel better, but also sorry you still have these pains after all this time.

Hi Beyond terrified 

Just wanted to echo Nikki65 really in that all the aches and pains she mentions I get too. I'm two years post treatment and am often on here with a new ache or pain.

I get pain in my coxycc from time to time, pain in my bum cheek, pain just inside, skin discomfort all sorts! I'm currently having left cheek and leg pain. It does seem to come in flare ups and then settle back down for a while. I spoke with my nurse recently and it all seemed very expected to her, which I suppose is why they have the late effects clinics. 

It's really hard to know what should be normal and it's always a worry and for me, my mind always jumps to the worst. But I'm getting used to what seems to be normal for me now and remembering that it does settle again and take a few painkillers for a couple of days.

Of course get anything checked that you're worried about, but definitely seems that aches and pains of all sorts are par for the course. 

Deb x 

Thanks Deb, again that's reassuring :) 

Hi Beyond terrified I’ve just read the comments of Nikki65 and Debh1 and have had the same experiences. There always seems to be some aching somewhere that comes and goes. I had a pelvic MRI scan to check for hairline fractures but it came back clear. This aching seems to be the legacy of the radiotherapy. Hope this puts your mind at rest but as advised above do mention it at your appointments for peace of mind. Bev 

Hi beyond terrified I am six months post treatment and it still hurts a bit to pass a bowel movement slightly so hopefully like you it will pass. I sometimes feel like I have a small light bulb (I know it’s a weird description) in my bottom like I haven’t finished going to the toilet and I am holding on to it. That passes when I have properly been to the toilet. Aches in my groin occasionally like it’s been thumped. I am due a scan in January so hopefully all these are just due to late side effects. But compared to what it was like before it’s a doddle and manage to get on with life normal. Reading on here that some experience these symptoms and all okay is very reassuring but it’s always best to report it as advised.

Hi!  I'm so sorry you've had to go through this.  I'm almost two years out and my radiation oncologist and internal medicine doctor all kind of chalk up any new ache or fatigue to radiation. I did a long road trip and realized my pain was coming from sitting so long even with hour breaks.   I did my first 5k last week...more of a walk/run but my abdomen is really hurting.  I love running and hate to give it up.  I've had so much bloating and fatigue, the new normal they say.  My oncologist said the field is struggling with the symptoms of survivors as we are living longer.  Hang in there.  Stay strong and know you'll have good days too!:)

Thank you hotyoga, you did really well to do 5K, well done.!  

Hi Bt,

     yes me too, I think we had treatment around the same time. It feels like the deep muscles round ones back passage, I massage mine, both sides hurt and tire. I think the radiotherapy blasts the area hard. I can feel a sort of a dint in my bum where flesh is now missing under my coccyx area. It is still painful to sit, especially with legs straight in front, like in an exercise class, my sitting bones? are still sore. It still hurts to wee. I have my 9 month check next week so will ask but I think there will be long term side effects.

I was saying to my friend, I think they used a sledgehammer to kill a snail, but it is getting better in general. Bicycle seat is alright now.  Maybe this is what they meant by fatigue ?

I asked for pelvic phisiotherapy but they said it was not on the cards, my pee pipe is strictured I think, and my vagina is closed up to 3ins and narrow inside, I hope it will not affect my cervix and womb. 

I don't think it's anything worse, its scar tissue and our bodies trying to recover from injury.

Keep in touch

Sarah

Hi Sarah

Thanks for your reply, it is helpful to know others have a multitude of symptoms after too, though I wish we didn't! 

Yes, painful for me to wee too, which was really unexpected as it wasn't a problem most of the time i was on treatment.  I think all the meds must have taken the edge of that then.  

I think I have actual fatigue fatigue too.  At work have noticed myself struggling to remember things, sometimes struggling to concentrate or for things to make sense, like reading the same paragraph 3 times before understanding it :(  Back at work 3 months nearly, and that all seems to be going backwards rather than settling down.  But, I guess as long as I am cancer free, the rest is manageable :)