New to Forum and a Pain in my butt!

[garry]

Hi all just joined got link sent to me in B&BForum.as have a bladder problem. which been getting the run round from all? As it's this it's that or could be the other?.Well i'm sure you all know what i mean!.
But this week have been looking into this more from this sites info as have a feeling most of the time like someones kicked me in the butt with a size 12+ hobnail boot!.(trying to type this while nearly hanging off side of seat).plus also get realy tight in the legs like my hamstrings are too short etc?.

I have a spine problem(lower discs have gone forward!)had cortisone injections in S1/L5/4/3&think 2.also have some narrowing of spine plus problem with neck.
Sports great? Yeah for injuries?.used to cycle racing for many years had a big off when went over a high jump foot came off pedal and i landed on saddle and bent steel frame of it.
Plus have done thousands of miles(6+ a year)

They or one/urology physio says ive irritable bladder!.Can't realy see that myself as i can be ok and not go for ages then it starts again &leak etc plus found now that they think i'm not emptying fully when scanned.
But at similar times that starts i can also have bowl problems like feel like want to go but nothing happening plus hard to go most of the time.
Keep getting twinges like shocks down my penis etc and very numb in groin which makes it feel like its constantly trying to let go when get like electric shocks?.
Did have physio on my SI joint in right hip many years ago from injuring on building work(paving)Feel it to right in top of hip.And suffer sciatica for many years from time to time.
Get like a warm feeling down leg like standing next to a hot radiator! plus get a feeling like either shock or ripping/tearing feeling down leg.

So going to try to broach this with Quacks&physio etc if you think it could be pudendal nerve problems?.
It's like a real fight with them like if you said world was round they'd say no it's square!G'rrr

Anyway pleased to meet you all.G

[carolynm]

Garry,
You are a complicated case! Don't know where you live but wondering if a neurologist could help you identify which nerve distrubutions are involved in your chief complaints. Could be pudendal but there are other nerves that could be causing some of your symptoms as well. My advice would be to start there. Where do you live? Near a big city with some good specialists?

Welcome to the group
cari

[garry]

Hi Carolynm thanks for welcome and reply.i'm in london uk nowhere thats good.esp today as very wet&cold. so just like a real english summer day?.lol
Teashirts/shorts and sandels?. No wellingtons/raincoats/umbrellas/thermals etc Ho and sandbags for floods now!!!.lol

[helenlegs 11]

Hi Garry,
Welcome, talk about saddle sore, OW! you have been through it! Did your MRI scan show actual sciatic nerve entrapment, and did the nerve root block S1/L5 help at all? Do you have buttock pain, guess so from the way you sit (snap) and have you ever had any pelvic physio, especially on the piriformis muscle?
There will be plenty of help from this site btw, glad you made it

[garry]

Hi ive never had a scan like that only on my spine etc well to best of my knowledge? As most keep you in the dark!.
The cortisone injections did lessen pain in back area?.But did seem to make bowl problems worse and right foot seems to be numb from it.
Yes do have buttock pain "bit like someones kicked up the bum feelings". Which if ive been say on pc etc and it's aching etc and esp if i forget to move find it realy hard to get out of a chair with arms'/side's onit!.My chair is open so can move around onit.but go to bed and it makes it hard to sleep as still feel it.
Sometimes it can be ok and have a reasonable day ( do get very tight in legs from something?)Which makes it awkward to walk etc doing a bit of cycling now which i find alot easier than walking. Some of that's from when i was young was left with a broken lower leg for nearly 2 day's and foot was twisted 90 degree's to right!.and never set right so get foot twist when walking etc so puts strain on hip joint.
Ive spent alot of time getting my position right for me.Cycling's like a 2nd home to me. well used to spend more time on bike than i did at home for many year's.
Spoke to quack about it other week she just said see them on you're back clinic follow up!.
Got follow up with uro clinic wonder what they are going to come up with? Think i'l mention it once they "told me the earth's not round etc"lol

Had it other day felt like someone had given me 240volts in me nut's!.didnt half make me awake?.It sure get's you're undevieded attention!.


If anyone would like to cycle? but worried about vibration etc Try Schwalbe marathon plus tyre's Esp great on mtb's i'e wider tyre. they have a foam rubber like layer under tread(anti punture) But it make's them very comfortable. so dont get hardly any road shock's unless you i guess you ride over a pile of brick's???.lol

Anyway thank you for replying. G

[shawnmellis]

Hi Gary, I'm not sure what tests have been done on you and the dates of them, but they would help us to help you. Have you had an MRI of your Lumbar spine and Pelvic MRI?
Also, if someone is having Pundeal Neuralgia or PNE, it can be caused by compression of the pudendal nerve due to pelvic misalignment (SIJD). Also, I'm sure you know that your sciatic pain is likely due to a sciatic nerve compression of your Lumbar disc area, or from your SIJD or possibly from Piriformis syndrome, but I would first have those 2 MRIs if you have not had one. If you have pain in your perineum (area between your rectum and below your genitals) then, you likely have some kind of irritation, pressure, compression on your Pudendal Nerve which can cause your urinary problems. If you do have perineum pain, you should see a Orthopedic/Sports Medicine doctor who is familiar with PNE and sees a lot of this from bicyclists and see if they know of someone who can do a cat scan guided pudendal nerve block test. Make sure it is cat scan guided because it is the most accurate and effective. It is a key test in diagnosing you with some form of pudendal neuralgia or pudendal nerve entrapment. If you have not had the Lumbar and Pelvic MRIs done yet, I would definitely have those done. You should probably see an orthopedic doctor/sports medicine doctor and or a neurologist for these overlapping conditions. If you can not find a doctor in your area to locate someone who can do a Cat scan guided pudendal nerve block, let me know the state you live in and I can help you find one. Here is a partial list of some who do it at http://www.coccyx.org/treatmen/docsusa.htm Keep us updated.

Shawn

[shawnmellis]

Gary, By the way bicycling is a common cause of Pudendal Neuralgia and Pudendal Nerve Entrapment and a lot of sports medicine doctors are familiar with it. Whenever I reinjure my pudendal nerve area, I get urinary frequency/urgency feeling, occasional lightening like shocks down my penis also. I strongly feel your pudendal nerve is involved and you need a cat scan guided pudendal nerve block to diagnose it.

Shawn

[helenlegs 11]

In the UK you have the option of Dr Greenslade in Bristol or Dr Baranowski i London who have any good experience of PN. If you have insurance great for either if not Dr B costs around £459 for an initial consult and Gr G £200. On the NHS it's a time thing and DR B could be 1 year wait, Dr G less at the moment but that's more to do with how long the Bristol team have been going rather than ability.
You definitely have a neuropathy with the shooting pain and it does seem to have a pudendal involvement but as Shawn says it's where the problem may be.
I have been diagnosed with both pudendal and sciatic (and gluteal but don't think that affects me to be honest) nerve entrapment at the sciatic notch which makes perfect sense to me, as that is where all of my pain originates.
It's a difficult thing to pinpoint but if you can get a referral to either of the above at least they have a good understanding of the problem.
Honestly though Garry, cycling (and sitting and almost every other damn thing, sorry, in one!) is advised against if it is PN and/or a piriformis problem, sorry!
Pacing, ice, some cushions and adjusting resting positions is advised, what about medication btw?

[garry]

Hi all thank you for replies. shawn i'm in the good? ole us of uk.lol in well atmo? sunny london. Yes taking this on board so thank you for info.
But quacks a different matter as think ive more chance betting on the pope winning the grand national on a three legged donkey than them referring me anywhere?.
But will try could do with either printing this page off if allowed?. or mailing to her.
when i say anything to them about ive looked into it etc they don't like it and say you read wrong things on net etc?. but when i'e here im getting info from others that have the problems and are dealing/living with it!.

Re medications etc i do have some cocodamol 50/500 but don't like taking any painkillers etc unless i realy have to and i mean realy have to as last resort!.
As one it causes me stomach problem's and two if use all the time lose's it's effect's so then need more.
I prefer to try to block it out etc mind over matter type thing.did get trained many years ago by someone that was in special forces taught/trained me not to show pain for when i was doing boxing etc.
Which was good for when i was racing and having a hard time oooh those mountians.but it takes energy to block it out so get very tired .

Anyway have to scoot now and thank you once again for help/info G

[helenlegs 11]

Hi Garry,
To help with a referral , print out the HOPE Letter to Medical Professionals http://www.pudendalhope.org/forum/viewt ... ?f=3&t=247 and take a look at the home pages. Maybe printl out symptoms too and highlight all of those that you suffer from and take along to your GP.
My GP has been absolutely dreadful, thankfully, she was on the sick for a while so I got somewhere with a locum. It's not as if I went to the doctors much, and definitely only when necessary, but the woman would not take on board anything I said, even though I had done the research for her.
It's been a battle from start to finish, well, still not finished!
They Have to refer you, ask the GP to write a letter of referral in light of the symptoms being pelvic and neuropathic. Take all of the information for whichever Dr you wish to see (Dr Baranowski is in London) to make it as easy as possible for them. As Dr B is one of only 2 experts in this country with regard to PN I don't see how they can refuse. If they do there is an appeal system. They have to mention that the situation is EXCEPTIONAL (apparently this is the magic word)
http://www.nhs.uk/chq/Pages/1094.aspx?C ... goryID=153
Hope you are successful, I would start the ball rolling asap as it will probably take ages.