Sacral Insufficiency Fractures

[Poir]

Hi,

I've just joined this online community, which feels like a good start!

I was diagnosed with sacral insufficiency fractures following a scan in February of this year. My symptoms - excruciating pain and limited mobility - started in September 2022 only 3 months after the finish of my pelvic radiotherapy treatment. At the time I wondered what on earth was happening to me. I'd vaguely read about potential side effects so rang my local specialist pelvic radiotherapy nurse and described my symptoms. She basically told me it was highly unlikely to be linked to my treatment as these side-effects occurred more long term. I am still hurt and frustrated by this so-called specialist nurse's inability to recognise that these symptoms were 'unlikely' but in need of further investigation.

So I went away thinking it couldn't possibly be linked to the radiotherapy. It took over six months and several appointments with nurse practitioner, GP, 3 different types of physio and finally a scan to diagnose Sacral Insufficiency Fractures that were definitely linked to the radiotherapy. During those months I was in agony, walking with elbow crutches and living on pain killers.

I'm sure many of you have heard this all before but it feels good to get it off my chest! My condition has gradually improved over the past few months. I can now walk unaided, I'm not on painkillers and I've now started to rehabilitate myself by taking Pilates classes and gradually walking more. At times the right side of my pelvis still aches and I can get numbness or tingling in the base of my spine.

What surprises me is the total disinterest I've had from some medics when I've mentioned my problems. I attended a six month check up in Gynaecology and mentioned my problems to the Registrar. I felt I was heard but not listened to. She was more interested in just sticking to her script doing an internal examination!

I'm sure many of you, like me, have received no ongoing advice about how to live with symptoms and the possible long term effects.

So I'm glad I've found out about the PRDA. It feels good to know I'm not on my own!

Thanks for reading this.

[Jimbo65]

Hi Poir, I'm glad that self-help, persistence and various health professionals have got you moving again. I feel your frustration on not being listened to. It's taken me years to finally get my symptoms joined together and have them addressed as pelvic radiation damage. Its only in the last few year that the NHS has actually accepted that this is something that needs addressing by a multi disciplined team. So lack of money, resources etc. has starved cancer patients of proper long term treatment for our side effects. We need to keep knocking on doors and be proactive about getting the right treatment for our body's. Well done you for perseverance. Keep going. X

[Derry71]

I quite literally feel your pain! I’m over 4 and a half years out from my cc treatment. Whilst Radiotherapy and Brachytherapy has me living cancer free… I had to have a total hip replacement last year as the treatment cut off the blood supply to my femoral head causing avascular necrosis. Most of this year I’ve been in agony with a stinging rib cage on my left side and currently have a really awful dull ache left pelvis. Mentioned to oncology who quickly put it down to bone changes (end of discussion!)

I sit a lot for my job in sales so the lack of motion makes it worse….and pain killers do nothing

Just wish there was a quick fix. I have the rib cage pain under control with an anti histamine believe it or not. But no idea what to do with the pelvis ache. I get sent for X-rays…nothing shows up

[Quercus16]

Hi Poir, finally someone who knows what I’ve been suffering from for 11 months. Your the first person!!!!

I was diagnosed with an insufficiency fracture on my left sacrum then a few weeks later on my right sacrum. Then a fracture on my pubis rumi. That caused a haematoma. My oncologist, although retiring kept me on to try and get me ‘fixed’. I was advised to lie flat in bed for 7 weeks in the hope that they would heal. They haven’t. Currently there is a neurosurgeon in Birmingham that is discussing with me sacralplasty procedure, basically gluing the sacral bones bk together. The pubis rumi fracture is bad and I’ve just had another scan (had 7 so far this year) which was requested by another hospital who are seeing if they can help with rumi fracture. They are looking to see if they can fit a plate to healthier bones, if they can find them. Strangely after the scan, the radiologist asked me ‘what happened to you?’ I explained it was due to RT and he said he had never heard of that before and he had dealt with thousands of cancer patients etc etc, his final words were ‘your a very brave lady’. I’m now worrying as to why he has said that, what did he see!!! I’m in constant pain, walk with a stick and am still on pain killers although I’m reducing them. I’m doing my best to get in with my life and not to let this define me or let my daughter see how much it all hurts!!! I’m encouraged reading your ‘story’ and wish I could get bk to yoga and long walks but at the moment it’s too painful. Ive never met you but feel proud for you. Keep doing what your doing, it seems to be working. 😁🙏🏻

[divvykev]

Hi Poir

Not to the same extent painwise as you but definitely the battle for someone to listen.

Had Chemoradiotherapy (5/25) in September 21 and APR surgery in Dec 21 taking me to cancer free but never really bounced back properly

Fatigue has got gradually worse and now I have pain down my legs and in my pelvis. I had a hip replacement on my left side 9 years ago and recent x-rays has shown the right one needs changing.

But like you, and the others here, have mentioned it's a case of ignoring being dismissed as this that and the other and fighting our own corner. At least now I am seeing a specialist in Clatterbridge Liverpool next month as chased via the hospital and they are looking more and more at people like us showing side effects developing at later stages.

Physiotherapy done nothing but I know that once I know, I may be able to deal with it all better.

Good luck.

Kevin

[Lampshade111]

Hi poir did have pains in pelvis and genital area and still do nearly year after but get further apart as time goes by the only helpful advice to give you is keep moving exercising go through the pain walk every day and think this will build muscle up around treated area. I know it’s painful but that’s what I done and also have physical job so just kept going you will find pain doesn’t worsen with exercise after while . Try painkillers ibuprofen after exercise to help . Hop feels better soon .