Radiation Induced Lumbar Plexopathy

[twentyMorville]

I have had Radiation induced lumbar plexopathy (RILP) for 50 years ever since I received pelvic radiation after a pollop removal. At the time it was suggested I could have radiation just in case anything had escaped although the doctors thought they had removed everything (the pollop had become fractured before being removed). At the time I was in my early 30s with a young family and thought it might be best to take up the offer of radiation. Nobody warned me about after effects at the time. Gradually over time, starting with my big toe, numbness has crept up my leg. I now wear an orthotic device to help with foot drop. That is ok, I manage with a limp. However another symptom has appeared over the last 4 years or so.

I started having a prickly feeling in my lower back/buttocks - this has progressed (I think) to my genital area where I have a sensation of wetness- I wasn’t sure if this was the vaginal or urinary area (not my anus as I have a stoma!). This sensation is really uncomfortable- to walk around all day with this feeling of wetness, yet there is no wetness. My GP immediately thought it was connected to post menopause symptoms and put me on HRT. However she eventually referred me to a Neurologist, and I subsequently had an MRI scan and an EMG examination. I was hoping the Neurologist would be able to advise me about this latest symptom but all he has done really is confirm I have RILP - which of course I already knew.

I wondered if anyone else had experienced this wetness sensation - possibly elsewhere on their bodies? I think it maybe called ‘peripheral nerve damage’.

[divvykev]

Wow. This is weird.

I had chemoradiotherapy two years ago for rectal cancer and am being treated at a late effects clinic for fatigue, leg pain etc.

But, I have also had the feeling of "wetness" thinking I had dribbled a bit and put it down to being 60 years old. I had never put the fact that my undies were dry with the feeling until reading your post.

I know for me that it is worse when I dont drink enough which seems to increase the urge to urinate with little output. I mentioned this to my specialist and he said it could be down to the chemical make up of my bladder having changed and so a more acidic urine cause by not drinking enough causes irritation.

It's all very strange isn't it. I too have a stoma and had my pelvic floor rebuilt during the surgery due to damage from the radiotherapy.

Thank you for sharing and hope this helps a bit.

[twentyMorville in reply to divvykev]

Thanks divvykev, I really appreciate your response to my question. It’s good you have a specialist that you can ask about these things. I’ve had such a struggle with my GP who stubbornly refused to seek help for me further afield. However I did eventually get to see a neurologist who understood what I was talking about, so it has been a long wait. However on the back of writing to Health Unlocked, I did hear from the Neurologist yesterday, so hopefully we’ll get a bit further into finding out about this ‘wetness’ problem.