How long was your initial recovery pe... - Pelvic Radiation ...

Pelvic Radiation Disease Association

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How long was your initial recovery period?

Ladyparts profile image
5 Replies

Hi everyone :) I am just over 1 year post chemoradiation for cervical cancer and thought I was turning a corner pain wise just before Christmas as I felt quite good for several weeks. Unfortunately it has revisited!

The pain varies in location and type - sometimes it feels nerve related and other times it aches almost like period pain low in the pelvis. I also get what I am assuming is intestinal or bowel pain in the pelvic area. Oh, and there is a tightness/aching that intermittently drives me insane on the left side of my pelvis from my pubic area up to the top of my hip bone.

I always feel so disappointed when I go through a good patch and think 'maybe I'm finally getting better' and then BAM! Laying on my bed with a tens machine and wheatbag, super fatigued and contemplating what pain killer to take that won't give me other issues!

Those I went through treatment with seem to have had a good run in terms of side effects and it leaves me worrying that something else is wrong, although, as my sister reminded me, I didn't have this type of of pain when I had cancer, so it's likely that this is radiation related. How long did it take you to notice an improvement in your symptoms initially?

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Ladyparts
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SpaghettiBetty profile image
SpaghettiBetty

Hi Ladyparts a lot of what you’re describing sound soooo familiar so I completely empathise with you and send you a big gentle hug. The aching/tightness in your hip/pubic area sounds a lot like an insufficiency fracture. I had one just 4 months after treatment after being told it was “far to soon from treatment to be an insufficiency fracture” and low and behold there it was on the MRI. Truth is we are all different and you can potentially get them at any time after treatment if you are susceptible it’s just less typical so soon.

It all sounds very much PRD related but you should always always tell your healthcare team. It’s important to rule out the slim chance of recurrence (I’m sure it’s not) but please make sure you get checked out ❤️

I had abdominal pains for at least a year after treatment, I had adhesions and strictures which were causing mine. Hopefully others will share their experiences to give a broader picture.

Stay safe lovely ❤️

Ladyparts profile image
Ladyparts in reply to SpaghettiBetty

Thank you. I have been in regular contact with my team and gp and make sure I tell them what's going on. At the moment the pelvic pain has disappeared, but I know it will flare up again. It seems to come in cycles.

My bowel, well - that seems to have a schedule of its own!!!

So sorry you are suffering. Fear is such a big part of what happens physically and emotionally after treatment. Yes, i had many an ups and downs after treatment. alot of pain and fatigue and fear for a few years after treatment in 2007 for cc stage 2b. So lots of radiation external and internal. Today, i have alleviated alot of pelvic and hip and back pain with yoga and pilates. No pain killer meds. but bowel issues are severe perhaps BAM, perhaps iliatis, proctitis, etc. Fatigue managed with supplements. chronic diarrhea with diet elimination etc. Many years of recurrent bowel obstructions that are managed with a fibre restricted diet. So some successes, pain free no meds, some challenges, bowel operation. BUT no recurring cancer of any kind in 14 yrs - so that is very good!

Ladyparts profile image
Ladyparts in reply to accidentalcarnivore

14 years - that's good to hear! Congratulations. I'm sorry to hear about your bowel issues, but it sounds like you got the pain under control. I can see this taking a few years to subside. We forget how harsh the treatment was sometimes I think. Take care 😊

Memagh profile image
Memagh

Hi Ladyparts,Like you I'm just 14 months out of treatment. Chemo, radio and brachy for cervical cancer. I know that feeling of thinking I've eventually turned a corner only for something else to pop up. I had discomfort and internal swelling in the area you mentioned, left side between groin and hip. I was a bit worried that it was swollen lymph nodes. My oncologist had me go for a colonoscopy due to rectal bleeding and it found I had 10cm of damage to my sigmoid colon. Supposedly, this is a common area to find damage after pelvic radiotherapy. At least I now have an answer to the discomfort I feel sometimes in this area. Have you had a colonoscopy? My oncologist referred me at my 12 month check up as they expect any short term side effects would have stopped by then. Currently going through a bout of extreme fatigue which also worried me. I hadn't felt this tired since going through chemo and radio. Thankfully a blood test found I was anaemic (again) and deficient in vitamin d (again). Less worrying when you know what is causing it! Now just trying to balance increasing my iron but trying not to get constipated as that will cause more bleeding. Quite a balancing act with trying to keep bowels, bladder and everything else happy. Have you had your iron and vitamin D tested lately? It is not included on a FBC unless requested. I am taking 400mg of iron and a very high dose of vitamin D (20,000 iu perscribed) so hoping to feel a bit more bouncy soon. My pharmacist ordered me a liquid iron supplement (Galfer syrup) that seems to be kinder to my intestines. Good luck with getting some answers!

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