Hi Helen not been on much.but been back to urology but think he had his wires crossed?. but had a moan and saw main consultant she was very good and helpfull. I think referring me to neurolgy as said can't believe havent been referred before. but also asked if i had been checked for MS?.
Been looking into a few things?.and i'm sure something to do with fibromyalgia if not MS which is giving me more problems?. Had a accident which they thought had broke my wrist(scaphiod bone?) but landed on my knee which is giving me a problem with my sacroiliac joint.
New to Forum and a Pain in my butt!
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New to Forum and a Pain in my butt!
No stone unturned eh? Sometimes that is the only way to go. At least many potential diagnoses can be easily ruled out (or in I guess) and the list needs to be crossed until you get to the bottom. The trouble is PN or pelvic neurology seems to be the bottom of everyone's list but it is classed as a diagnosis of exclusion.
Let us know how you get on and which Dr'd you get to see (and if they are any good
)
Helen
Let us know how you get on and which Dr'd you get to see (and if they are any good
)Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: New to Forum and a Pain in my butt!
Hi Helen. Got my appointment for Neurology on 23/12 so hoping get some info/help etc.
Plus off to see quacks this week.eek rather have my teeth dragged out with a pair of pliers than go there! but suppose have to.
Going to ask her for some help etc plus does things uro asked for?. I'm using a catheter with a flo-valve and belly bag atmo.uro didnt want to give me anything/help etc.
So bought some Rusch belly bags from ebay and had some catheters already (bard bio-cath )are great if you need to use?.
As i had had enough dealing with it as i'm either going constantly/leaking/dribbling/not emptying fully or as happened other day couldn't go at all for many hours (7) and was busting to go and which was in the same day as was leaking for hours.Was going to go to A&E but after being back in the warm/relaxing plus hot drinks etc i squeezed it out as couldn't go to poo either.
As was out and felt cold which makes you go then because i needed/wanted to pee made me like go into a spasm/shock felt sort of cold and clammy(forehead felt cold)
so decided i was i'd had enough and as quack said before when used if it works use it so i am.
And must admit it is realy helping and have control now as not worrying about how much fluid im drinking if need to go out plus i'm now going out and about.as was getting quite paranoid about it with wet trousers etc.And now that i'm drinking alot more fluids i don't get soo many joint pain/problems which is a great benefit!!!
And now that weathers gone cold it gives me hell esp if have to go in the night as once cold can't get warm again so end up not sleeping at all.
Just need to get them to find out why i'm still making so much pee once a sleep?.as drain out if don't top up constantly.
Spine clinic said to ask quacks to be referred to pain management.as they said no good if they try to refer me?.Plus they chucked me out as atmo don't realy want anymore cortisone till looked into it more.
Anyway if don't get back before have a great Christmas/new year Garry
Plus off to see quacks this week.eek rather have my teeth dragged out with a pair of pliers than go there! but suppose have to.
Going to ask her for some help etc plus does things uro asked for?. I'm using a catheter with a flo-valve and belly bag atmo.uro didnt want to give me anything/help etc.
So bought some Rusch belly bags from ebay and had some catheters already (bard bio-cath )are great if you need to use?.
As i had had enough dealing with it as i'm either going constantly/leaking/dribbling/not emptying fully or as happened other day couldn't go at all for many hours (7) and was busting to go and which was in the same day as was leaking for hours.Was going to go to A&E but after being back in the warm/relaxing plus hot drinks etc i squeezed it out as couldn't go to poo either.
As was out and felt cold which makes you go then because i needed/wanted to pee made me like go into a spasm/shock felt sort of cold and clammy(forehead felt cold)
so decided i was i'd had enough and as quack said before when used if it works use it so i am.
And must admit it is realy helping and have control now as not worrying about how much fluid im drinking if need to go out plus i'm now going out and about.as was getting quite paranoid about it with wet trousers etc.And now that i'm drinking alot more fluids i don't get soo many joint pain/problems which is a great benefit!!!
And now that weathers gone cold it gives me hell esp if have to go in the night as once cold can't get warm again so end up not sleeping at all.
Just need to get them to find out why i'm still making so much pee once a sleep?.as drain out if don't top up constantly.
Spine clinic said to ask quacks to be referred to pain management.as they said no good if they try to refer me?.Plus they chucked me out as atmo don't realy want anymore cortisone till looked into it more.
Anyway if don't get back before have a great Christmas/new year Garry
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New to Forum and a Pain in my butt!
You too Gary and all the best for your forthcoming appointment. I really hope it gets or starts to get things sorted out for you.
Take care,
Helen
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: New to Forum and a Pain in my butt!
Hi Helen hope you had a great Christmas/new year.
Been to neurology sent me for mri of spine plus blood tests.get follow up in april!
Just been back to Urology got pounced on by the whole gang?.They said spine doesn't look alot worse than previous ones.but theres disc slippage in lower back area which could be a cause for bladder problem?
They have arranged for look in bladder in few weeks time which is an overnight stay after i think as they put you out!.
Said that for time being that they think catheter is the best option?then proceeded to give me the third degree about it and asked me about my long term plan etc?.
So what we have agreed at the mo is that we will atleast wait till feed back/results from neurology then go from there.
Told them that my pain/spine etc feels alot better which we think is from drinking a lot more fluids so they are getting hydrated more?.but do sleep a lot better now which is beneficial!
An upshot of it is that my pains underneath are a lot less so an improvement and front area doesn't feel so cold now.
The catheters not without it's risks but lifes not without them either but for time being or even if i have to live with it for long time? (they did say botox/something like a stoma type?/or a valve implant.)
But that would be something i'd have to think about plus long way off? plus not without many risks esp with the raynauds as had a finger op before xmas and it's making me suffer with any cold onit.
Anyway hope all is well with you Garry
Been to neurology sent me for mri of spine plus blood tests.get follow up in april!
Just been back to Urology got pounced on by the whole gang?.They said spine doesn't look alot worse than previous ones.but theres disc slippage in lower back area which could be a cause for bladder problem?
They have arranged for look in bladder in few weeks time which is an overnight stay after i think as they put you out!.
Said that for time being that they think catheter is the best option?then proceeded to give me the third degree about it and asked me about my long term plan etc?.
So what we have agreed at the mo is that we will atleast wait till feed back/results from neurology then go from there.
Told them that my pain/spine etc feels alot better which we think is from drinking a lot more fluids so they are getting hydrated more?.but do sleep a lot better now which is beneficial!
An upshot of it is that my pains underneath are a lot less so an improvement and front area doesn't feel so cold now.
The catheters not without it's risks but lifes not without them either but for time being or even if i have to live with it for long time? (they did say botox/something like a stoma type?/or a valve implant.)
But that would be something i'd have to think about plus long way off? plus not without many risks esp with the raynauds as had a finger op before xmas and it's making me suffer with any cold onit.
Anyway hope all is well with you Garry