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Hi im new Can anybody help this is driving me up the wall

dad3601 profile image
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Hi i have been disabled past 30+ years athiritis been on painkillers past 30 years .

so i cannot walk far both knees have been told are unoperable due to many surgical ops.

in past. I have learned to live with the pain day to day, this isint my main concern.

Last year i got up off the chair and my back clicked ,i was in agony and couldnt move for 30mins when i tried to move my arm ect it was very painfull.

i went to doc and he told me to rest after a few days , i began to get numbness on my bottom and bottom of back. And severe pain in back and constant urge to urinate when sitting bladder spasims also.

Then my urinating started to go weird flow sideways stop starting ect.

I went back to gp urine test done came back fine ,he gave me a digital examination (finger up the back passage and told me prostate was enlarged i was given cipro urinating got worse over week. Then i had urine retention i had it for 10+ hours i was admited to hospital er emergency catherterised urne retention 950mls drained and told prostate enlarged.

blood test done came back fine so did urine. When in hospital my back was in agony nurse spoke to nurologist after 2 + hour examination and many questions they decided to do mri .

A few days later i was discharged for a couple of days urine flow was moderate i was given many meds to take.

Mri came back i was told due to age degenerative damage due to wear and tear but nothing life threatning like ms tumor ect thank god.

I have now became incontinent when sitting im going to toilet 15+ times daily when i try to hold it i leak also night time is hell ,the doc and continence nurse have helped me i now wear pads through the day and adult nappy at night .

3 months + past seen follow up urologist digital examination of prostate told me at my age its not prostate , i was dumfounded so was doctor past month now im of prostate meds on vesicare .

for flow and have numbness at bottom of back back pain and incontinent. when i stand the urgency to urinate wavers but i cant stand much and use braces and crutches and mobility scooter outside doc told me furter tests to follow .

Now as ive been searching through websites i came across which dealt with pudendal nerve entrapment and wondering if any body has had simmilar symtoms many thanks for reading please reply

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helenlegs11 profile image
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While incontinence isn't always a symptom of pudendal neuralgia, it can be, although symptoms are often bi lateral (only on one side or worse on one side) so the side that isn't (or is less) affected picks up the nerves motor and organ function capabilities.

There is more prevalence to urinary urgency which you also described.

Numbness is associated with nerve disfunction although it isn't necessarily 'entrapment' as irritation can cause problems too. It is best to term the problem pudendal neuralgia as this covers both.

It's great that you have had an MRI and know that your lower spine in not an issue.

Going forward, I would make an appointment with a physio who hopefully knows the pelvic area and is familiar with PN. Here is a list pelvicphysiotherapy.com/man...

I would also get them to check out the piriformis muscle as that muscle can spasm and sometimes involve the pudendal nerve. It is near the bottom of the sacrum so more in the area where you are describing pain.

Some people have PN because of pelvic floor disfunction, again a muscle tightness/spasming problem that can be detected by a competent physio. The good news is that targeted physio can often help relieve the symptoms too once the muscles are relaxed.

The only doctors in England that I know of who can properly evaluate whether there is any pundendal involvement are

Dr De Mello in Manchester nhs.uk/Services/hospitals/S...

Dr's Baranowski and Curren in London ucl.ac.uk/anaesthesia/peopl...

and Dr's Wong and Greenslade in Bristol (Frenchay) nbt.nhs.uk/our-services/a-z...

I see Dr Greenslade he studied in Nantes France with Professor Robert (as has Dr De Mello) author of the 'Nantes Criteria' a scholarly medical paper referencing the diagnostic criteria for pudendal neuralgia.

pudendalhope.info/sites/def...

Hope you find some of this useful and can go forward in getting some helpful treatment.

The only other thing to suggest is try and limit sitting, which I realise is going to be difficult but it could help.

Take care,

Helen

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