Let's talk about hips! : Hi everyone... - Pelvic Radiation ...

Pelvic Radiation Disease Association

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Let's talk about hips!

Ladyparts profile image
16 Replies

Hi everyone. Let's talk hip pain! Do you have it? What is it like? Has it improved or worsened since treatment.

I'm almost a year post pelvic chemoradiation and my hips and pelvic bones are SO sore I feel like someone has beaten me up :(

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Ladyparts profile image
Ladyparts
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16 Replies
SpaghettiBetty profile image
SpaghettiBetty

I had terrible problems in my first year, awful hip pain which turned out to be a pelvic insufficiency fracture (hairline cracks in the bone). My oncologist kept reassuring me that it wasn’t a PIF and said I was way too young and it normally only happened to 70 year olds (I was 30) and that it was way too soon out of treatment. But an MRI picked it up, I don’t think they always show on X-rays. So PIF something to consider.

The fracture has healed but I still get hip pain which I wonder is related to nerve damage. The pain isn’t constant but can be exacerbated by sitting for too long and standing too long. Walking is weird, I can walk for 2 hours and have no problem one day but then a 5 min walk another day will bring it on 🤷‍♀️

Have you had your bone density checked? Another problem to look out for I’m afraid.

SpaghettiBetty profile image
SpaghettiBetty

Had to double check the other symptoms but there is something called Radiation-induced lumbar plexopathy (RILP) which comes under the umbrella of PRD. Although it’s reasonably rare, I have wondered if I have RILP as I have many of the other symptoms:

Lower limb:

- dysaesthesia (abnormal sensations of touch or feeling)

- weakness

- numbness

- paresthesia, e.g. foot drop, muscle atrophy

- pain

Have you noticed any of these symptoms?

I first notice that periodically i was getting a sensation of cold water was dripping down my legs.

Ladyparts profile image
Ladyparts in reply to SpaghettiBetty

Thanks for your reply :) no, I haven't noticed any symptoms of RILP thankfully. It's mainly burning and tenderness in the hip joints and higher up around the top of the pelvic bones. I'm yet to have a bone density scan, but will be discussing this with my gp when I chat with him next. I got onto hrt within a few months of finishing treatment to help prevent bone loss, but I do need to get a baseline check. I guess I have been avoiding any further scans etc as I'm so over being poked and prodded and living in anxiety land!!

HarleyQuinn82 profile image
HarleyQuinn82Community Pioneer in reply to Ladyparts

I’ve had problems with back and hip pain since treatment. I find anti inflammatory meds, heat pads snd tend really help as well as physio including hydrotherapy. If you haven’t had it I would ask gp for a referral! X

Ladyparts profile image
Ladyparts in reply to HarleyQuinn82

Do you mean tens, as in tens machine?

HarleyQuinn82 profile image
HarleyQuinn82Community Pioneer in reply to Ladyparts

Yes sorry, stupid auto correct x

Blue_Hawaii profile image
Blue_Hawaii

I had my right hip replaced in July. I was diagnosed with arthritis in back and hip

Unfortunately the pain in my hip, buttock and down my leg as not gone away, I feel it is worse. I have nerve damage the consultant is saying

Sorry you are in feeling pain and sore

Sending you a big hug

Please take care and be safe

Ladyparts profile image
Ladyparts

Sorry to hear that :( That's rough. So many complications from this life saving treatment hey! I guess it's better than the alternative, but quality of life is definitely an issue x

Blue_Hawaii profile image
Blue_Hawaii in reply to Ladyparts

Some times the alternative seems good to me

Ladyparts profile image
Ladyparts in reply to Blue_Hawaii

I hear you x

Elephanthips profile image
Elephanthips

Hi Ladyparts. I feel your pain! I have had hip and back pain since March this year, following pelvic radiotherapy which finished in January. An x-ray didn't show anything so the assumption from medics was this was a muscular issue. Covid was at its peak at the time so I self treated with rest, I could barely weight bear, followed by physio and exercise, with only very limited improvement.

I am normally very fit and active, enjoying long walks, yoga,and dance classes which I have done for most of my life.

In September I had an MRI which showed pelvic insufficiency fractures!

I haven't been offered any treatment or even advice so far but have an appointment with late effects team next week .

I hope things improve for you soon

Very best wishes

Ladyparts profile image
Ladyparts

Oh wow, you must be in a lot of pain! I have wondered about insufficiency fractures, but the pain is quite inconsistent in how intense it can get. Sometimes it feels muscular, other times I swear there are tiny cracks in the bone! Often the tissue around my hips and pelvic bones feels inflamed.

I hope you are able to get some direction from the late effects team x

Elephanthips profile image
Elephanthips

For the first few months the pain was really intense, particularly when walking. I paid for physio as I didn't want to trouble NHS. The physio was convinced the problem was muscular so performed some heavy duty deep tissue massage which I don't think helped with the fracture healing process ! Following the MRI I stopped physio and resumed low impact exercise and gradually increased my walks. to try and strengthen my bones, also taking extra calcium and vit D

Like others,I do find the pain is now inconsistent , sometimes better or worse than others. I also have that weird burning sensation.

After reading these posts I am so grateful to all of you as I don't feel so alone with this issue.

I hope all of you get improvement and relief from pain and discomfort.

By the way, I don't really have elephant hips I am quite a petite person but it was the only password that was accepted 😂

PositivePeople profile image
PositivePeople

Hi Ladyparts. I underwent pelvic radiation along with chemotherapy during May, June and July this year. I had my 3 month scan in October. A week prior to the scan my pelvic area was painful, quite crampy like a period pain, I had an early menopause at 37 (I'm now 61) so knew it wasn't related. I also had right hip pain and my bones felt generally sore in my pelvic/hip area. My 3 month scan was all clear for the cancer but the MRI picked up that I had some Insuffiency pelvic fractures to my right side and coxyx area, caused, it's believed from the radiation. I was told I was just unlucky and that they will heal themselves. I've since had blood tests that showed below ave Vit D, so on medical advice took double dose Vit D and this week I've reduced to normal, 1 tab a day. I've been referred by my GP on my oncologists advice, for a DEXA, bone density scan. The waiting time is 6 months due to covid. I don't know if its the Vit D or the natural healing process but my aches and pains have pretty much gone. Hopefully time will continue to heal. Good luck with your journey. Bev

RoseTyler profile image
RoseTyler

My left hip was really sore for about a year or 2 post treatment. I had likely pelvic insufficiency fractures from the radiotherapy. I ride and show Horses and the only time it didn't hurt was when I was riding :o.However, after 2 years it stopped hurting but then the bowel problems started :/. To be honest, I preferred the hip pain :p.

Sarahla81 profile image
Sarahla81

Hi there. I have really bad lower back, hip and right leg pain. My oncologist has referred me to a physiotherapist, who has posted me out some excersizes. He mentioned sciatica, but I’ve had that before and this is very different. I won’t see him until 15th January. Hope you manage to get help and some advice xx

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